This Saturday just gone, I burnt my hand.
I was in the kitchen, working with some isomalt for my Cake International competition piece. Isomalt is basically a sugar derivative. To use it, you have to melt it down to the correct working temperature, which is above one hundred and twenty degrees. In other words, it's really bloody hot.
I've been trained in working with molten sugar, and I know how to avoid incidents. But occasionally, accidents happen.
I was checking my mould and the side split slightly, spilling liquid isomalt across my left hand.
Immediately, I put my hand under the cold tap and let the water run. Lil Monster heard me cry out when it happened, and rushed to my side, where she was a major help. She got me my phone, so that I could do some research on burns, as well as getting me paracetamol. She stayed with me whilst I was on the phone with NHS 111, and helped me through the flat, so that I could ask Wheelz to take me to A&E.
Wheelz and Lil Monster were fantastic, getting me to the hospital in record time.
I have nothing but high praise for the NHS, as I was triaged and treated very quickly, as well as being given supplies to dress my wounds.
The burns aren't too bad, thank goodness. A few second degree burns, where the isomalt touched me first, and a splatter pattern across the top of my palm and the base of my fingers in first degree burns.
The problem, of course, was that I was thoroughly wrapped in bandages, rendering my left hand pretty much useless. I hadn't even realised how much I use it on a day to day basis until suddenly, I couldn't.
Having to take a step back, and let people help me, has been a real learning curve over the last few days. I struggled to carry things, couldn't feed the cats properly, preparing food was too difficult. Basically all of the things that I'm used to doing, both for myself and my family, I couldn't do. Wheelz and Lil Monster had to step in with sorting dinner, feeding the cats, arranging the washing etc.
In fact, it started even earlier than that.
Usually, when we go out, I take a bag with me. My bag usually contains (this is not a complete list):
Phone
Keys
Purse
Wheelz's phone
Wheelz's keys
Wheelz's purse
Water bottle
Cereal bars
Boiled sweets (in case Wheelz faints)
Lip balm
Tissues
Pens
Paper/Notebook
etc.
Lil Monster had to pack a bag instead. I walked her through the basics of what I usually tow around with me, and she packed it into her hastily emptied PE bag.
The journey to the hospital was quick, and easy.
The next obstacle was parking. Usually, when there's a pay and display, I'll go over and sort it. If I don't have change, I'll find a nearby shop or food stall and make a small purchase in order to make change.
Lil Monster never usually has to think about this, as it's always handled. Thank goodness the pay and display was broken and we were allowed to park for free, because her distressed toing and froing was quite stressful to behold.
Next came the wheelchair. It seems so easy when you think of what needs doing. Remove from car, push into seating position, remove brakes.
But I couldn't do any of it. I just stood there like a lemon, unable to help with it at all, because it takes two hands. It hadn't ever occurred to me that Lil Monster didn't know to grab the seat cushion. That she didn't realise that Wheelz needs the brakes off if she's walking with the chair, and on if she's going to sit in it. Push down on the seat bars to put the seat in place, but make sure it's not too close to the car, so it doesn't hit it.
I felt micromanaging, because I felt as though I had to walk her through each step of what I do as a matter of course. It was a weird feeling, and one that I wasn't at all keen on.
For the most part, things at home have been OK. From Saturday afternoon, when we got home from the hospital, until last night, I was given 'invalid' status. So saying, I was off duty for my usual have to's, and would need helping out instead.
I'm not a very good patient. I have developed a fierce independent streak over the years, and having this stripped away has been a real learning curve. I've had no choice but to sit back and let other people help me out. I've had no choice but to let go.
And it's been hard. I suppose, because of the things I'm used to handling, I've developed my own way of managing things, and it's been difficult to let other people take charge. I've had to bite my tongue a few times, when things weren't being done in their usual way. Because not-my-way doesn't mean wrong (with the exception of weighing out cat food. Lil Monster has been overfeeding them, hence the four piles of cat sick Wheelz and I had to clean up last night).
I've been off duty for two and a half days, and nothing has fallen apart. We're all still standing.
Lil Monster really stepped up for me, and it was heartening to see.
So maybe me being forced to let go hasn't necessarily been a bad thing?
Having said that, my invalid status expired at midnight, so it's business as usual from here on out.
Tuesday, 10 July 2018
Tuesday, 3 July 2018
Dear N (potential trigger)
Sometimes, I wish I was mute.
That's not true.
Yeah, it kind of is.
Sometimes, I wish I couldn't speak, so that I wouldn't have to speak. Because sometimes, in our home, to speak is to pick a side. And to pick a side is to start a war.
For whatever reason, you argue less with me.
This is shitty. I am thrust into the middle of every argument, because without my presence, they descend into shouting, crying, yelling. Admittedly, even with my presence, this happens, but moreso when I'm not around to translate.
It's so fucked up that I'm needed to do that. She makes sense. She does. She speaks with clarity and precision, as she's had to over the years dealing with you. She makes sense.
You, on the other hand, play dumb. Is it because you like the attention of both of us? Is it that if you're going down, you want to drag me down with you? What makes you argue for hours and hours over the smallest word choice, until I have to get involved and dumb it down to three letter words, because it's half eleven and you need to go to bed?
I hate having to get involved, because it means that, whatever I say, it will be twisted and warped until it barely resembles my original words. I hate getting involved, because if I try and reason out either viewpoint, I feel as though I am betraying the other. I hate getting involved, because I'm so exhausted. I hear the same arguments, all the damn time, and nothing changes. I ask why, phrasing it in a million different ways, to hear I don't know, in that awful dead voice. I hate getting involved, because it makes my stomach clench and my head ache and my shoulders crunch up to my ears.
I hate that a simple question, a basic conversation, can lead to now; all three of us in separate rooms, feeling various levels of hurt.
I hate feeling like it's become one of my burdens to try and reform us, after Hurricane N has visited. I hate feeling like I hate my younger sister. Because I do feel that way. I do sometimes feel like I hate you. I listen to the things you say, and see the way you act and I think, God, why are we still living this? What epic mistake did we make that karma is paying us back, this hard?
I'm so tired of this. Of feeling so empty inside, so dead.
Sometimes, I feel as though you are a leaky bucket. You can never be completely filled. But instead of asking for help patching yourself up, you go around punching holes in everyone else, so that they hurt, too.
There are days when I wonder why we didn't make you go and live with your dad, last year. Logically, and when I'm feeling capable of looking to the future, I think it's probably a good thing. Your dad is actually not dissimilar to mine, and I know how hellish I found it living with him.
When I'm not feeling capable of looking to the future, I curse the fact that a train didn't come last year, when I was standing on the tracks, looking for a sign.
I made a promise to myself that I would be the sister to stick around, I'd be the one who was there. Sometimes, I can stand by that. Other times, I think I was a fucking idiot to put that on myself.
I don't know how to keep doing this. I don't know how to keep being there. I'm so tired of this. I'm so tired of feeling like I can't ask you to do anything. I'm fed up of dreading the time I know you'll be home from school. I hate the feeling of pure terror that fills me when I think about the upcoming summer holidays.
I don't know how much of it is in my control. I've spent hours, in my own head, trying to work out what more I can do to help you. Trying to figure out which parenting book to read, so that I can get through to you. Hanging around on parenting forums, trying to see how other families have coped with children like you.
The idea that some of it is not in my control, that it's in yours... I can't actually bear to think about it. Because sometimes, I'm not sure that you can change.
Sometimes, I'm scared that this is just... you.
That's not true.
Yeah, it kind of is.
Sometimes, I wish I couldn't speak, so that I wouldn't have to speak. Because sometimes, in our home, to speak is to pick a side. And to pick a side is to start a war.
For whatever reason, you argue less with me.
This is shitty. I am thrust into the middle of every argument, because without my presence, they descend into shouting, crying, yelling. Admittedly, even with my presence, this happens, but moreso when I'm not around to translate.
It's so fucked up that I'm needed to do that. She makes sense. She does. She speaks with clarity and precision, as she's had to over the years dealing with you. She makes sense.
You, on the other hand, play dumb. Is it because you like the attention of both of us? Is it that if you're going down, you want to drag me down with you? What makes you argue for hours and hours over the smallest word choice, until I have to get involved and dumb it down to three letter words, because it's half eleven and you need to go to bed?
I hate having to get involved, because it means that, whatever I say, it will be twisted and warped until it barely resembles my original words. I hate getting involved, because if I try and reason out either viewpoint, I feel as though I am betraying the other. I hate getting involved, because I'm so exhausted. I hear the same arguments, all the damn time, and nothing changes. I ask why, phrasing it in a million different ways, to hear I don't know, in that awful dead voice. I hate getting involved, because it makes my stomach clench and my head ache and my shoulders crunch up to my ears.
I hate that a simple question, a basic conversation, can lead to now; all three of us in separate rooms, feeling various levels of hurt.
I hate feeling like it's become one of my burdens to try and reform us, after Hurricane N has visited. I hate feeling like I hate my younger sister. Because I do feel that way. I do sometimes feel like I hate you. I listen to the things you say, and see the way you act and I think, God, why are we still living this? What epic mistake did we make that karma is paying us back, this hard?
I'm so tired of this. Of feeling so empty inside, so dead.
Sometimes, I feel as though you are a leaky bucket. You can never be completely filled. But instead of asking for help patching yourself up, you go around punching holes in everyone else, so that they hurt, too.
There are days when I wonder why we didn't make you go and live with your dad, last year. Logically, and when I'm feeling capable of looking to the future, I think it's probably a good thing. Your dad is actually not dissimilar to mine, and I know how hellish I found it living with him.
When I'm not feeling capable of looking to the future, I curse the fact that a train didn't come last year, when I was standing on the tracks, looking for a sign.
I made a promise to myself that I would be the sister to stick around, I'd be the one who was there. Sometimes, I can stand by that. Other times, I think I was a fucking idiot to put that on myself.
I don't know how to keep doing this. I don't know how to keep being there. I'm so tired of this. I'm so tired of feeling like I can't ask you to do anything. I'm fed up of dreading the time I know you'll be home from school. I hate the feeling of pure terror that fills me when I think about the upcoming summer holidays.
I don't know how much of it is in my control. I've spent hours, in my own head, trying to work out what more I can do to help you. Trying to figure out which parenting book to read, so that I can get through to you. Hanging around on parenting forums, trying to see how other families have coped with children like you.
The idea that some of it is not in my control, that it's in yours... I can't actually bear to think about it. Because sometimes, I'm not sure that you can change.
Sometimes, I'm scared that this is just... you.
Tuesday, 26 June 2018
The Wheelz haven't fallen off my cart - yet! * * * potential triggers* * *
...and to be frank, I feel like I've one sweet fuck all.
Stripez and I visited one of the (many) Doctors at our Medical Centre. He proceeded to lecture me on the dangers of staying on the opiates I take daily as they are addictive (no shit) and despite being prescribed to me for the past fifteen years, are proven to be a placebo. So he wanted me to come off of them. Completely cold turkey. Said if I stopped taking them and 'rode out' the withdrawal, I stood the chance of becoming a useful member of society again. Also, I need to lose just over 200 lbs in weight but that's just the small matter of showing some willpower.
Now, I wonder whether or not this guy had read my medical records. He seemed to know nothing about my stroke, the vertigo, the depression and anxiety - in fact, based on what he had to say to me, all I needed to do was stop being the next best thing to a drug addict, drop a few hundred pounds and I could be back on my feet, working in no time.
He almost convinced me. In fact, I'll admit it, if Stripez hadn't been there, he would have me convinced that I'm just a fat, lazy waste of space who needed to stop malingering, stop taking masses of drugs for no reason whatsoever, and get a job.
We reminded him that we had asked (more than twice) about the option of weight loss surgery and been told each time that a referral was being put through. We let him know that I had managed to lose nearly one and a half stone following a plant based diet (check out spudfit if you want to know more). His response? Do you want me to refer you to Slimming World? Seriously, I don't think this guy heard one thing that we said.
Anyway, wanting to show willing, I have spent the last four weeks weaning myself off of Tramadol, also known as Zydol. And a flippin' trippy four weeks it has been. I can't remember the last time I have been in so much pain so often. Walking, sitting, lying down, standing - all of it hurts like someone is smashing me in the base of the spine and both knees with a giant hammer (although if it was Chris Hemsworth doing his Thor impression, it might have been worth it). I don't sleep worth a damn (if I take paracetamol and gabapentin at the right time, I can grab six hours on a really, really good day), I'm constantly tired, cranky, depressed and wanting to top myself. But, maybe I'm coming out the other side?
I haven't managed to stick to Spudfit because tbh, Lil Monster has been a complete and utter ****. As in, I still have no idea how she is still breathing because I actually dreamed at least twice that I went to her room and smothered her in her sleep. Last word merchant, rude, disrespectful, lazy, unappreciative - sounds like every other teenager out there, right? Well this one can argue with you for HOURS at a time over whether or not she should have to sweep a floor. Like, seriously.
She gaslights me on the regular, tries to pretend that she doesn't know she's doing it. Will pick at every single word I say until I am almost scared to speak because I can't stand another fight. Sometimes Stripez and I, by the time Lil Monster has gone to bed, literally sit there in a type of shock. My Counsellor described it as domestic abuse and she was right. But there's no escape because the kid is mine, she's only 14, and because I don't beat or abuse HER, Social Services will do nothing.
But that's a whole different rant.
Anyway, I've made three wigs, am learning to do a cut crease (playing with make up is SO much fun) and have rocked pink/purple hair for the month of May and most of June. Who knows what delights July holds for me?
Not gonna make any promises about writing more often. But I will recommend reading the Harry Dresden books by Jim Butcher as I re-read them (first one came out in 2005 I believe) and am catching up with the last three. And, I might have the minutest germ of a plot bunny to actually write a short fanfic story - but don't hold me to that because I may just have been hallucinating whilst not sleeping!
P.S. - Stripez, if you read this, you're my best friend too and I don't say that just because you occasionally share your particularly plumptuous pillows with me in the evening so that we are propped up and can watch TV comfortably!
Stripez and I visited one of the (many) Doctors at our Medical Centre. He proceeded to lecture me on the dangers of staying on the opiates I take daily as they are addictive (no shit) and despite being prescribed to me for the past fifteen years, are proven to be a placebo. So he wanted me to come off of them. Completely cold turkey. Said if I stopped taking them and 'rode out' the withdrawal, I stood the chance of becoming a useful member of society again. Also, I need to lose just over 200 lbs in weight but that's just the small matter of showing some willpower.
Now, I wonder whether or not this guy had read my medical records. He seemed to know nothing about my stroke, the vertigo, the depression and anxiety - in fact, based on what he had to say to me, all I needed to do was stop being the next best thing to a drug addict, drop a few hundred pounds and I could be back on my feet, working in no time.
He almost convinced me. In fact, I'll admit it, if Stripez hadn't been there, he would have me convinced that I'm just a fat, lazy waste of space who needed to stop malingering, stop taking masses of drugs for no reason whatsoever, and get a job.
We reminded him that we had asked (more than twice) about the option of weight loss surgery and been told each time that a referral was being put through. We let him know that I had managed to lose nearly one and a half stone following a plant based diet (check out spudfit if you want to know more). His response? Do you want me to refer you to Slimming World? Seriously, I don't think this guy heard one thing that we said.
Anyway, wanting to show willing, I have spent the last four weeks weaning myself off of Tramadol, also known as Zydol. And a flippin' trippy four weeks it has been. I can't remember the last time I have been in so much pain so often. Walking, sitting, lying down, standing - all of it hurts like someone is smashing me in the base of the spine and both knees with a giant hammer (although if it was Chris Hemsworth doing his Thor impression, it might have been worth it). I don't sleep worth a damn (if I take paracetamol and gabapentin at the right time, I can grab six hours on a really, really good day), I'm constantly tired, cranky, depressed and wanting to top myself. But, maybe I'm coming out the other side?
I haven't managed to stick to Spudfit because tbh, Lil Monster has been a complete and utter ****. As in, I still have no idea how she is still breathing because I actually dreamed at least twice that I went to her room and smothered her in her sleep. Last word merchant, rude, disrespectful, lazy, unappreciative - sounds like every other teenager out there, right? Well this one can argue with you for HOURS at a time over whether or not she should have to sweep a floor. Like, seriously.
She gaslights me on the regular, tries to pretend that she doesn't know she's doing it. Will pick at every single word I say until I am almost scared to speak because I can't stand another fight. Sometimes Stripez and I, by the time Lil Monster has gone to bed, literally sit there in a type of shock. My Counsellor described it as domestic abuse and she was right. But there's no escape because the kid is mine, she's only 14, and because I don't beat or abuse HER, Social Services will do nothing.
But that's a whole different rant.
Anyway, I've made three wigs, am learning to do a cut crease (playing with make up is SO much fun) and have rocked pink/purple hair for the month of May and most of June. Who knows what delights July holds for me?
Not gonna make any promises about writing more often. But I will recommend reading the Harry Dresden books by Jim Butcher as I re-read them (first one came out in 2005 I believe) and am catching up with the last three. And, I might have the minutest germ of a plot bunny to actually write a short fanfic story - but don't hold me to that because I may just have been hallucinating whilst not sleeping!
P.S. - Stripez, if you read this, you're my best friend too and I don't say that just because you occasionally share your particularly plumptuous pillows with me in the evening so that we are propped up and can watch TV comfortably!
Sunday, 27 May 2018
May. Whoops...
So much for blogging more often.
It's not that nothing has happened - a lot has happened over the past few weeks, actually - but the words just haven't been there to write.
As always, Wheelz and I will try and do a month of something. This month, we elected to try and take better care of our feet. We used Footner (have you ever used Footner? You should use Footner), and peeled off the top layer of our feet. If that sounds disgusting... Well, I mean, it is. But it's also weirdly satisfying, pulling literal strips of skin from your feet. Plus, the soles of my feet are now baby smooth.
We've also had quite a few appointments between the three of us this month. Wheelz had pain management, which necessitated a doctor's appointment to change her meds over. I've had more counselling, a carer's clinic appointment, a blood test and a med change. Even Lil Monster has had a few, with one to book her in for some counselling and another to deal with her gammy feet.
I've actually sat down a few times this month to try to get some words out there, but just... nothing.
Part of that, I'll attribute to the med change. I mentioned at carer's clinic that I didn't feel the Citalopram was doing much, so she changed me over to Sertraline. It really knocked me for six. I spent days feeling nauseous and tired when coming off of the Citalopram, and then tired and nauseous when I started taking the new tablets. I can't say that I've noticed much of a difference thus far, but it's only been little more than a week. I probably ought to give them more of a chance.
This coming week is half term, and I'm kind of dreading it. Lil Monster is home for the whole week.
She needs to tidy her room - which is a fairly terrifying prospect. One, because there are juice cartons, McDonalds cups and God knows what else in there. And two, because she has reacted badly to tidying her room in the past. The incident in which she went at Wheelz with a knife for trying to tidy her room plays on my mind often, and it's an incident I'm desperate to avoid.
She is a... high octane kid, and the idea of a full week of keeping her occupied fills me with no small amount of dread.
I mean, I know we'll get through. We always do. But sometimes, I wonder at the mental cost that 'getting through' takes.
I don't know. We'll see.
Hopefully, my writer's block has decided to leave me alone for a bit, and I can write on her a bit more often as we move into June.
Here's hoping!
It's not that nothing has happened - a lot has happened over the past few weeks, actually - but the words just haven't been there to write.
As always, Wheelz and I will try and do a month of something. This month, we elected to try and take better care of our feet. We used Footner (have you ever used Footner? You should use Footner), and peeled off the top layer of our feet. If that sounds disgusting... Well, I mean, it is. But it's also weirdly satisfying, pulling literal strips of skin from your feet. Plus, the soles of my feet are now baby smooth.
We've also had quite a few appointments between the three of us this month. Wheelz had pain management, which necessitated a doctor's appointment to change her meds over. I've had more counselling, a carer's clinic appointment, a blood test and a med change. Even Lil Monster has had a few, with one to book her in for some counselling and another to deal with her gammy feet.
I've actually sat down a few times this month to try to get some words out there, but just... nothing.
Part of that, I'll attribute to the med change. I mentioned at carer's clinic that I didn't feel the Citalopram was doing much, so she changed me over to Sertraline. It really knocked me for six. I spent days feeling nauseous and tired when coming off of the Citalopram, and then tired and nauseous when I started taking the new tablets. I can't say that I've noticed much of a difference thus far, but it's only been little more than a week. I probably ought to give them more of a chance.
This coming week is half term, and I'm kind of dreading it. Lil Monster is home for the whole week.
She needs to tidy her room - which is a fairly terrifying prospect. One, because there are juice cartons, McDonalds cups and God knows what else in there. And two, because she has reacted badly to tidying her room in the past. The incident in which she went at Wheelz with a knife for trying to tidy her room plays on my mind often, and it's an incident I'm desperate to avoid.
She is a... high octane kid, and the idea of a full week of keeping her occupied fills me with no small amount of dread.
I mean, I know we'll get through. We always do. But sometimes, I wonder at the mental cost that 'getting through' takes.
I don't know. We'll see.
Hopefully, my writer's block has decided to leave me alone for a bit, and I can write on her a bit more often as we move into June.
Here's hoping!
Tuesday, 24 April 2018
What it means to be a carer *potential trigger warning*
I often find that people don't take it as seriously as they ought to, when I tell them that I'm Wheelz's carer. I don't know if it's because they don't truly understand what that means, or if it's because I'm her daughter and so they don't think it's a 'real job'. With a few people, I've gotten the impression that they think it's just an easy way for me to make some money from the government, without having to work for it!
In case it's not clear, that is categorically not true.
Being Wheelz's carer means a lot of different things to me, and I suppose some of those things are different to a paid, trained carer, because they're not related to her.
If I told people that I was a carer, and didn't mention that it's for my mother, they'd have a very different picture in their minds. They'd think I went to work in blue scrubs, visiting disabled/elderly people. They'd think that I went around, helping with painkillers and tablets, keeping a general eye on their health, and aiding them around their houses with both general and personal needs.
The truth is, I do all of that, except that Wheelz isn't elderly, and I'm generally wearing jeans and a hoodie.
But I do help her out with her painkillers and tablets throughout the day (especially the aspirin that never wants to come out of it's blister pack). I do keep an eye on her throughout the day, whether she's resting or awake. I keep track of her sleep, and how much of it she's not getting. I know roughly how much she's drinking throughout the day, and that realistically, it's not enough. I know what she's eating during the day, because I'm the one that prepares and cooks it. I know how much food is in the kitchen, and when the shopping needs doing, because I do the shopping and cooking. I help Wheelz around the flat when she's feeling unsteady, and have my ears trained in her direction when she's not. I'm her support both physically and emotionally.
When she has appointments to attend, regardless of whether they're blood tests, pain clinic or just med reviews, I go with her.
When she needs help walking to the bathroom and back because her knees aren't cooperating, I'm there to guide her, and help balance her as she walks.
And when she was feeling at her lowest low with everything, I was there to call the crisis team and put away the tablets that she'd been planning on taking.
I'm not saying that this is all one sided, of course. When I was having weekly panic attacks, and failing three driving tests in a row, Wheelz was there to give me a hug, and tell me that it didn't matter if I could drive or not.
When I'm not sleeping well, or I'm unwell, or it's day 2 of my period, she does everything she can to need me as little as possible.
What Wheelz and I have is unique and probably quite unusual, but it's been working for us.
I don't want this post to come across as pious. She's my mum, and I'd do all of that for her and more, if she needed me to.
But I'm sick and tired of feeling like I'm looked down upon for what I do. I may not be with an agency, or employed by the NHS, but I am a carer.
The truth is, no matter how willing we are to do it, family/friend carers, those of us who get by on Carer's Allowance, get paid a pittance for what we do. We do everything that an agency/NHS carer would do and more, as well as being paid less and being judged more.
Despite how difficult it can be at times, I truly wouldn't change what we have. Wheelz is my very best friend, and I know we're lucky to be so close. My work is being with my best friend all the time, which not very many people get.
But being a carer is not a free ride. It is not sitting at home all day, doing sweet fuck all and being paid for it. It is just as much work as any other job.
I wouldn't change what I do, because being there for Wheelz is probably the most fulfilling thing I've ever done with my life.
But I would change how other people saw it.
I wish everyone truly understood what it actually means to be a carer.
In case it's not clear, that is categorically not true.
Being Wheelz's carer means a lot of different things to me, and I suppose some of those things are different to a paid, trained carer, because they're not related to her.
If I told people that I was a carer, and didn't mention that it's for my mother, they'd have a very different picture in their minds. They'd think I went to work in blue scrubs, visiting disabled/elderly people. They'd think that I went around, helping with painkillers and tablets, keeping a general eye on their health, and aiding them around their houses with both general and personal needs.
The truth is, I do all of that, except that Wheelz isn't elderly, and I'm generally wearing jeans and a hoodie.
But I do help her out with her painkillers and tablets throughout the day (especially the aspirin that never wants to come out of it's blister pack). I do keep an eye on her throughout the day, whether she's resting or awake. I keep track of her sleep, and how much of it she's not getting. I know roughly how much she's drinking throughout the day, and that realistically, it's not enough. I know what she's eating during the day, because I'm the one that prepares and cooks it. I know how much food is in the kitchen, and when the shopping needs doing, because I do the shopping and cooking. I help Wheelz around the flat when she's feeling unsteady, and have my ears trained in her direction when she's not. I'm her support both physically and emotionally.
When she has appointments to attend, regardless of whether they're blood tests, pain clinic or just med reviews, I go with her.
When she needs help walking to the bathroom and back because her knees aren't cooperating, I'm there to guide her, and help balance her as she walks.
And when she was feeling at her lowest low with everything, I was there to call the crisis team and put away the tablets that she'd been planning on taking.
I'm not saying that this is all one sided, of course. When I was having weekly panic attacks, and failing three driving tests in a row, Wheelz was there to give me a hug, and tell me that it didn't matter if I could drive or not.
When I'm not sleeping well, or I'm unwell, or it's day 2 of my period, she does everything she can to need me as little as possible.
What Wheelz and I have is unique and probably quite unusual, but it's been working for us.
I don't want this post to come across as pious. She's my mum, and I'd do all of that for her and more, if she needed me to.
But I'm sick and tired of feeling like I'm looked down upon for what I do. I may not be with an agency, or employed by the NHS, but I am a carer.
The truth is, no matter how willing we are to do it, family/friend carers, those of us who get by on Carer's Allowance, get paid a pittance for what we do. We do everything that an agency/NHS carer would do and more, as well as being paid less and being judged more.
Despite how difficult it can be at times, I truly wouldn't change what we have. Wheelz is my very best friend, and I know we're lucky to be so close. My work is being with my best friend all the time, which not very many people get.
But being a carer is not a free ride. It is not sitting at home all day, doing sweet fuck all and being paid for it. It is just as much work as any other job.
I wouldn't change what I do, because being there for Wheelz is probably the most fulfilling thing I've ever done with my life.
But I would change how other people saw it.
I wish everyone truly understood what it actually means to be a carer.
Monday, 9 April 2018
We're free!
Well, for a week anyway.
It's the second week of the Easter holidays, which means that Lil Monster is visiting with her dad for the week. Which means, Wheelz and I are free for the week!
I love my little sister. Let me just make that clear, right from the off. I love my little sister, with a depth that floors me sometimes.
But she is a very high maintenance, highly emotional teenager, who can be utterly exhausting to be around. Therefore, sometimes, I'm glad that she goes for a few days, because it gives me the chance to recuperate.
It doesn't help that I've been struggling with my anxiety recently, and not sleeping very well as a result. I'm sure lots of people can attest to the fact that little sleep generally means little patience.
It also doesn't help that Lil Monster pretty much always regresses with her behaviour in the days leading up to visiting her father. A few conversations this week have brought a few things to light, which have helped me make a bit more sense of things. But the fact remains that, for a week or so before she goes, Wheelz and I are treated to excessive moodiness, tantrums, shouting and more-than-expected belligerence. It can be tough to deal with.
So Wheelz and I are trying to make the most of the week of respite. The funny thing is, and this happens virtually every time, we usually wind up with one or both of us ill during her time away. It's like our bodies stay on high alert whilst she's around, and then just give in and crash when she goes away. She left on Saturday. Since then, I've been struggling to sleep, and feeling more tired and anxious than usual. Wheelz has been suffering from palpitations that nearly sent us to A&E on Sunday night, as well as a persistent migraine.
It sucks, but it's our reality.
Usually, we don't make any concrete plans for this week. We've learned by now that it doesn't work for us.
Instead, we'll just make the most of the peace and quiet that comes from having a teenager free home!
It's the second week of the Easter holidays, which means that Lil Monster is visiting with her dad for the week. Which means, Wheelz and I are free for the week!
I love my little sister. Let me just make that clear, right from the off. I love my little sister, with a depth that floors me sometimes.
But she is a very high maintenance, highly emotional teenager, who can be utterly exhausting to be around. Therefore, sometimes, I'm glad that she goes for a few days, because it gives me the chance to recuperate.
It doesn't help that I've been struggling with my anxiety recently, and not sleeping very well as a result. I'm sure lots of people can attest to the fact that little sleep generally means little patience.
It also doesn't help that Lil Monster pretty much always regresses with her behaviour in the days leading up to visiting her father. A few conversations this week have brought a few things to light, which have helped me make a bit more sense of things. But the fact remains that, for a week or so before she goes, Wheelz and I are treated to excessive moodiness, tantrums, shouting and more-than-expected belligerence. It can be tough to deal with.
So Wheelz and I are trying to make the most of the week of respite. The funny thing is, and this happens virtually every time, we usually wind up with one or both of us ill during her time away. It's like our bodies stay on high alert whilst she's around, and then just give in and crash when she goes away. She left on Saturday. Since then, I've been struggling to sleep, and feeling more tired and anxious than usual. Wheelz has been suffering from palpitations that nearly sent us to A&E on Sunday night, as well as a persistent migraine.
It sucks, but it's our reality.
Usually, we don't make any concrete plans for this week. We've learned by now that it doesn't work for us.
Instead, we'll just make the most of the peace and quiet that comes from having a teenager free home!
Tuesday, 3 April 2018
Wakanda and Leto Hangover!
Yeah, so I've finally stopped calling everyone a motherfucker - it barely lasted five days so why Stripes is complaining, I don't know!! However, the Wakanda hangover remains. I would still book tickets to Wakanda in a hot minute (I'm pretty sure I could help Killmonger deal with his feelings of loss while he recovered from that spear wound). It's probably a good thing I don't go out very often as calling people Coloniser, throwing wigs at them and expecting a proper Wakandan salute when you meet them is beyond the expectations of our little section of Birmingham!
So what's occurring? Well, I'm on day 24/5 of Exante. I did have a planned evening off for our concert night - hot salty fries anyone? - but right back on it the next day. I haven't seen any consistent weight loss - in the first week, the scales said I had lost 3 lbs; second week 2lbs. As you can imagine, having given up food entirely, I was less than pleased with these puny results. It doesn't help that my scales are a hunk of junk and rarely give the same results twice in a row. I promised myself I'd do it for a month and then decide what next, so that's what I'm doing. I actually like the shakes and porridge - some of the bars are revolting and mac and cheese taste like paste. But I can do this. I was meant to be following it with a friend, but she doesn't have as much to lose as me and when her first week's results were a pile of crap, she kinda jumped ship! So, me, myself and I and a facebook group that I've found. Plus numerous youtube videos including Life of Ollie.
Unfortunately, I'm not feeling well today. It looks like I've got a mini infection of my helix piercing i.e. a HUGE lump behind my ear that stabs me like the sword of a thousand spartans if I move my head without thinking. This comes with a side order of nausea, hot and cold fever, temperatures which make me feel like a furnace even whilst shivering - you get the picture. I tried to use this as justification for another day off diet plan - surely MacDonalds would make me feel better? But Stripes is onto me and my shenanigans so what I got was steroid ointment and orders to drink more fluids.
Thirty Seconds to Mars was freaking amazing. There were so many other disabled people there- we passed at least four other wheelchairs, plus people using crutches and walking sticks. It made me feel like I stood out a little less, which is saying something as the last time I tried to dye my crewcut blonde, it came out a delightful shade of lavender! Our seats were good and to be honest, I can't remember the last time I just sang my heart out without worrying about being out of tune, with thousands of other people joining in. I felt so free that even the pain in my knees from sitting still for so long didn't bother me much.
And of course, Stripes. She's my best mate and she doesn't always believe me when I tell her how special she is. But she moved the car on her own because she knew I couldn't walk back to it, move it and still have any real energy left. She just did it - and bloody perfectly too. She parked better than I do!! I'm mega proud of her, but she just thinks I have to be cos I'm her mother. Pft, shows what she knows
Easter holidays, which means Little Monster, She has been trying really hard lately but that seems to be wearing off. Just in time for her to go and spend a week with her Dad. She doesn't want to go - especially as it falls over her birthday - but she DOES want to go because he's her dad, and she wants him to have a chance to get to know her after being away for five years. So hopefully, he won't disappoint her. And it means Stripes and I get a week to ourselves! Until she's actually on the coach, I won't believe it, but we could be getting a WHOLE WEEK to ourselves!!!
In the meantime, the April thing is face make up - i.e. foundation, concealer and contour. None of us have ever used make up really before but Lil Monster has expressed interest. For her birthday, we've bought her some make up palettes, and for our April thing, I've just ordered a load of foundation, etc for us all to play with.
Not as easy as it sounds as I haven't been able to get to any shops to test foundation colours for matching my skin tone. None of the local superdrugs are particularly wheelchair friendly - whether it be a lack of parking or a lack of space within the store. Add to that, apparently this make up flies off the shelves because it is affordable but good! So we've ordered a variety of shades and will see how it turns out.
So, that's a little catch up with me. I've fallen in love with the Strictly Come Dancing game on tablet, which has rapidly become a bit of an obsession. This does mean I have semi stopped playing Songpop, Words with Friends and Sims Freeplay. And now, Sims Mobile, which I am less than impressed with but stay playing because I want to see what happens when my sims die!
Maybe you'll hear more from me over the next fortnight. Although, Shadowhunters season 3 has started so I wouldn't count on it - Malec isn't going to support itself you know!
Wakanda Forever!
x
So what's occurring? Well, I'm on day 24/5 of Exante. I did have a planned evening off for our concert night - hot salty fries anyone? - but right back on it the next day. I haven't seen any consistent weight loss - in the first week, the scales said I had lost 3 lbs; second week 2lbs. As you can imagine, having given up food entirely, I was less than pleased with these puny results. It doesn't help that my scales are a hunk of junk and rarely give the same results twice in a row. I promised myself I'd do it for a month and then decide what next, so that's what I'm doing. I actually like the shakes and porridge - some of the bars are revolting and mac and cheese taste like paste. But I can do this. I was meant to be following it with a friend, but she doesn't have as much to lose as me and when her first week's results were a pile of crap, she kinda jumped ship! So, me, myself and I and a facebook group that I've found. Plus numerous youtube videos including Life of Ollie.
Unfortunately, I'm not feeling well today. It looks like I've got a mini infection of my helix piercing i.e. a HUGE lump behind my ear that stabs me like the sword of a thousand spartans if I move my head without thinking. This comes with a side order of nausea, hot and cold fever, temperatures which make me feel like a furnace even whilst shivering - you get the picture. I tried to use this as justification for another day off diet plan - surely MacDonalds would make me feel better? But Stripes is onto me and my shenanigans so what I got was steroid ointment and orders to drink more fluids.
Thirty Seconds to Mars was freaking amazing. There were so many other disabled people there- we passed at least four other wheelchairs, plus people using crutches and walking sticks. It made me feel like I stood out a little less, which is saying something as the last time I tried to dye my crewcut blonde, it came out a delightful shade of lavender! Our seats were good and to be honest, I can't remember the last time I just sang my heart out without worrying about being out of tune, with thousands of other people joining in. I felt so free that even the pain in my knees from sitting still for so long didn't bother me much.
And of course, Stripes. She's my best mate and she doesn't always believe me when I tell her how special she is. But she moved the car on her own because she knew I couldn't walk back to it, move it and still have any real energy left. She just did it - and bloody perfectly too. She parked better than I do!! I'm mega proud of her, but she just thinks I have to be cos I'm her mother. Pft, shows what she knows
Easter holidays, which means Little Monster, She has been trying really hard lately but that seems to be wearing off. Just in time for her to go and spend a week with her Dad. She doesn't want to go - especially as it falls over her birthday - but she DOES want to go because he's her dad, and she wants him to have a chance to get to know her after being away for five years. So hopefully, he won't disappoint her. And it means Stripes and I get a week to ourselves! Until she's actually on the coach, I won't believe it, but we could be getting a WHOLE WEEK to ourselves!!!
In the meantime, the April thing is face make up - i.e. foundation, concealer and contour. None of us have ever used make up really before but Lil Monster has expressed interest. For her birthday, we've bought her some make up palettes, and for our April thing, I've just ordered a load of foundation, etc for us all to play with.
Not as easy as it sounds as I haven't been able to get to any shops to test foundation colours for matching my skin tone. None of the local superdrugs are particularly wheelchair friendly - whether it be a lack of parking or a lack of space within the store. Add to that, apparently this make up flies off the shelves because it is affordable but good! So we've ordered a variety of shades and will see how it turns out.
So, that's a little catch up with me. I've fallen in love with the Strictly Come Dancing game on tablet, which has rapidly become a bit of an obsession. This does mean I have semi stopped playing Songpop, Words with Friends and Sims Freeplay. And now, Sims Mobile, which I am less than impressed with but stay playing because I want to see what happens when my sims die!
Maybe you'll hear more from me over the next fortnight. Although, Shadowhunters season 3 has started so I wouldn't count on it - Malec isn't going to support itself you know!
Wakanda Forever!
x
Saturday, 31 March 2018
Counselling
Hey, I was right. Double post!
I haven't managed to write in a while about how I've been dealing with my mental health.
To be honest, until recently, the words haven't really been there.
At the beginning of March, I started counselling, to see if it would help with my anxiety.
I'm not altogether sure if it's helped.
The counselling I've been having is supposed to be more patient led, which was odd to get used to. My therapist (I'm pretty sure her title is counsellor, but it doesn't look right when I type it. I'll just call her Ruth) is a lovely woman, who's been very attentive, and has listened to a small fraction of the crap than runs through my head.
Mostly, the last four weeks or so have been about looking at my relationships with people, and trying to extract myself from as many issues, that aren't my issues, as possible.
Bible sis's relationship with my aunts, following my grandfather's funeral. Sad, but not mine to fix.
Lil Monster and Bible sis's relationship. Upsetting, but my job is to listen. Bible Sis, as the older sister, should be in the main position to fix it.
Lil Monster and her reluctance to spend time with her dad. I'm here as a sounding board, but I can't fix it.
I suppose, in that regard, it has helped. We describe it as spilling the contents of my mind on the floor, and choosing a small section of it to clear up. Some things are clearer.
But other things aren't. I guess I feel like bigger things haven't been sorted through yet.
I suppose, despite knowing that it's not how counselling works, I was hoping to feel fixed.
I don't. My mind still races, near constantly. I still get stressed out over everything, and it still has a tendency to make me feel as though I'm being tied in knots over it all.
I still feel like I'm not doing a good enough job, looking after Wheelz.
I still feel like Lil Monster deserves a better older sister than me.
I still feel like Bible Sis and I will never truly get along, because neither of us wants to address the giant neon elephant in the room.
I still feel like my dad is disappointed in me and my life choices.
I guess a six week block of counselling isn't quite enough to deal with all of that.
I am grateful to Ruth, though. I've been able to talk some things through with her, clear my head over them, tidy them away a bit.
I suppose it's just a case of remembering that mental health isn't an easy fix. There's every chance that I will live with anxiety and depression for the rest of my life.
It's just a case of taking the help I can get with them, whenever I can.
I haven't managed to write in a while about how I've been dealing with my mental health.
To be honest, until recently, the words haven't really been there.
At the beginning of March, I started counselling, to see if it would help with my anxiety.
I'm not altogether sure if it's helped.
The counselling I've been having is supposed to be more patient led, which was odd to get used to. My therapist (I'm pretty sure her title is counsellor, but it doesn't look right when I type it. I'll just call her Ruth) is a lovely woman, who's been very attentive, and has listened to a small fraction of the crap than runs through my head.
Mostly, the last four weeks or so have been about looking at my relationships with people, and trying to extract myself from as many issues, that aren't my issues, as possible.
Bible sis's relationship with my aunts, following my grandfather's funeral. Sad, but not mine to fix.
Lil Monster and Bible sis's relationship. Upsetting, but my job is to listen. Bible Sis, as the older sister, should be in the main position to fix it.
Lil Monster and her reluctance to spend time with her dad. I'm here as a sounding board, but I can't fix it.
I suppose, in that regard, it has helped. We describe it as spilling the contents of my mind on the floor, and choosing a small section of it to clear up. Some things are clearer.
But other things aren't. I guess I feel like bigger things haven't been sorted through yet.
I suppose, despite knowing that it's not how counselling works, I was hoping to feel fixed.
I don't. My mind still races, near constantly. I still get stressed out over everything, and it still has a tendency to make me feel as though I'm being tied in knots over it all.
I still feel like I'm not doing a good enough job, looking after Wheelz.
I still feel like Lil Monster deserves a better older sister than me.
I still feel like Bible Sis and I will never truly get along, because neither of us wants to address the giant neon elephant in the room.
I still feel like my dad is disappointed in me and my life choices.
I guess a six week block of counselling isn't quite enough to deal with all of that.
I am grateful to Ruth, though. I've been able to talk some things through with her, clear my head over them, tidy them away a bit.
I suppose it's just a case of remembering that mental health isn't an easy fix. There's every chance that I will live with anxiety and depression for the rest of my life.
It's just a case of taking the help I can get with them, whenever I can.
30 Seconds To Mars
I haven't posted in yonks again.
Whoops.
Things have been busy, there's been illness, appointments, yadda yadda.
I'm writing now, though, and I've a bit of time free, so we might even get a double post tonight. Who knows?
The other night, Wheelz and I went out. Like, out out. Months ago, we booked tickets for a band that we both love, 30 Seconds to Mars.
The concert was on Thursday.
As with any outing that Wheelz and I go on, there's always a lot of planning and prepping involved. We bought disabled tickets in the wheelchair space, so that Wheelz wouldn't have to conquer any stairs. We prepaid for parking, specifically on the right floor to be able to walk right into the arena. We prepped Lil Monster on staying home by herself for the first time - we figure that, being as she turns fourteen in two weeks, she should be able to handle it. Still, I was fussing like a mother hen. I briefed her on the contents of the fridge, so that she could get herself dinner. I wrote down phone numbers for anyone that she could conceivably need to contact (two aunts, my grandmother, a friend of Wheelz's). I figured if there was an emergency, she should be able to remember 999.
The drive in was fine. We found parking pretty easily.
We initially parked further away, but spotted a better space nearer the entrance. So I - me- I reversed our mini 4x4 out of the space, drove to the new space, and reverse parked it where we wanted it.
I know that's probably quite a small achievement, but it felt huge. I've not felt able to drive for about a year now, as my anxiety just made it too insurmountable. But I did it! I moved our car, on my own, with no one there to take the wheel if anything went wrong.
I was sweating profusely and my breathing was shallower than I'd have preferred, but I did it!
We made our way in, and were searched - apparently this is a new thing that Arena Birmingham are doing - before heading to our seats. I had kind of forgotten what it can be like, trying to get through crowds of people with the wheelchair. Some people are understanding, and will step aside for us. Others will stand resolutely in our way, forcing us to have to swerve through tight spaces, for no other reason than their own amusement. We eventually made it to our seats, got comfortable and took the requisite 'night out' selfie.
One of the things I'd been looking forward to was seeing a friend of mine there. We don't see each other much, due to my job, her job and our distance from one another. But we knew that we were both there, and kept an eye out for one another. We didn't actually get the chance to speak; she was standing, and spaces were at a real premium, but we did see each other. It's funny how such a small interaction made me so pleased.
The set itself was electric.
I'm not, as a rule, a huge fan of live music. I typically find it too loud, the environment can feel too close. I've only managed it for two bands so far; 30 Seconds to Mars, and Fall Out Boy.
But it was incredible. There were hundreds of people, so caught up in the music and having an amazing time. I got to hear some of my favourite songs, some of their new songs. It was just utterly fantastic.
The sad thing about concerts, though, is that they're fairly short.
You get this incredible high whilst you're there, and they're on stage. You feel completely at one with the people around you. You don't feel outside, or awkward because pretty much everybody there is there for the same reason as you; to enjoy the music.
And then it ends.
That euphoria follows you for the rest of the night.
Or, if you're Wheelz, you end up with what I've termed a 'concert hangover'. Unfortunately, Jared Leto's language seems to have rubbed off on her, and she's spent the last two days calling everyone a motherfucker.
For Wheelz and I, these nights out are rare.
They're expensive, there's a lot of stress involved in getting there, we usually have to find a babysitter.
And so, to us, they're special. We usually manage it once a year, maybe twice if we're lucky.
I treasure those nights out with Wheelz. Because for just one night, we get to be ourselves. We are able to ignore the bounds of disability, and mental health, and just be two best friends, having the time of our lives.
I have no idea when we'll next be able to arrange it.
I do know, that by the time our next concert reveals itself to us, Lil Monster will be old enough to join us.
I wonder if it will be the same?
Whoops.
Things have been busy, there's been illness, appointments, yadda yadda.
I'm writing now, though, and I've a bit of time free, so we might even get a double post tonight. Who knows?
The other night, Wheelz and I went out. Like, out out. Months ago, we booked tickets for a band that we both love, 30 Seconds to Mars.
The concert was on Thursday.
As with any outing that Wheelz and I go on, there's always a lot of planning and prepping involved. We bought disabled tickets in the wheelchair space, so that Wheelz wouldn't have to conquer any stairs. We prepaid for parking, specifically on the right floor to be able to walk right into the arena. We prepped Lil Monster on staying home by herself for the first time - we figure that, being as she turns fourteen in two weeks, she should be able to handle it. Still, I was fussing like a mother hen. I briefed her on the contents of the fridge, so that she could get herself dinner. I wrote down phone numbers for anyone that she could conceivably need to contact (two aunts, my grandmother, a friend of Wheelz's). I figured if there was an emergency, she should be able to remember 999.
The drive in was fine. We found parking pretty easily.
We initially parked further away, but spotted a better space nearer the entrance. So I - me- I reversed our mini 4x4 out of the space, drove to the new space, and reverse parked it where we wanted it.
I know that's probably quite a small achievement, but it felt huge. I've not felt able to drive for about a year now, as my anxiety just made it too insurmountable. But I did it! I moved our car, on my own, with no one there to take the wheel if anything went wrong.
I was sweating profusely and my breathing was shallower than I'd have preferred, but I did it!
We made our way in, and were searched - apparently this is a new thing that Arena Birmingham are doing - before heading to our seats. I had kind of forgotten what it can be like, trying to get through crowds of people with the wheelchair. Some people are understanding, and will step aside for us. Others will stand resolutely in our way, forcing us to have to swerve through tight spaces, for no other reason than their own amusement. We eventually made it to our seats, got comfortable and took the requisite 'night out' selfie.
One of the things I'd been looking forward to was seeing a friend of mine there. We don't see each other much, due to my job, her job and our distance from one another. But we knew that we were both there, and kept an eye out for one another. We didn't actually get the chance to speak; she was standing, and spaces were at a real premium, but we did see each other. It's funny how such a small interaction made me so pleased.
The set itself was electric.
I'm not, as a rule, a huge fan of live music. I typically find it too loud, the environment can feel too close. I've only managed it for two bands so far; 30 Seconds to Mars, and Fall Out Boy.
But it was incredible. There were hundreds of people, so caught up in the music and having an amazing time. I got to hear some of my favourite songs, some of their new songs. It was just utterly fantastic.
The sad thing about concerts, though, is that they're fairly short.
You get this incredible high whilst you're there, and they're on stage. You feel completely at one with the people around you. You don't feel outside, or awkward because pretty much everybody there is there for the same reason as you; to enjoy the music.
And then it ends.
That euphoria follows you for the rest of the night.
Or, if you're Wheelz, you end up with what I've termed a 'concert hangover'. Unfortunately, Jared Leto's language seems to have rubbed off on her, and she's spent the last two days calling everyone a motherfucker.
For Wheelz and I, these nights out are rare.
They're expensive, there's a lot of stress involved in getting there, we usually have to find a babysitter.
And so, to us, they're special. We usually manage it once a year, maybe twice if we're lucky.
I treasure those nights out with Wheelz. Because for just one night, we get to be ourselves. We are able to ignore the bounds of disability, and mental health, and just be two best friends, having the time of our lives.
I have no idea when we'll next be able to arrange it.
I do know, that by the time our next concert reveals itself to us, Lil Monster will be old enough to join us.
I wonder if it will be the same?
Saturday, 10 March 2018
Happy Mother's Day!
At this moment, it is twenty to one on March 11th, which in the UK means it is Mother's Day.
Over the last few weeks, I've noticed that this celebration seems to split opinions. I happen to be a member of a few online forums, Mumsnet being one of them. On Mumsnet, I've noticed two main opinions about Mother's Day.
One school of thought is that it is just one more commercialised bullshit day, created by gift manufacturers, restaurants and card shops to pry more money from our fingers. We should show our appreciation every day, rather than a token effort once a year to save face. Buying into Mother's Day is childish and selfish, etc, etc.
The other main thought that I saw is that there's nothing wrong with wanting to do something a bit special for your mother, be it your biological, adoptive, step mother, or even just a maternal figure in your life. What does it really take to buy a bunch of tulips or daffodils, and a card, just to show you care?
I'm more of the second school of thought, although I do think we should show our appreciation for the people we feel deserve it everyday.
I've been mulling this over, the past few days, to try and figure out my stance on it.
Ever since I was young, we have always done something for Wheelz for Mother's Day. This might have been a gift, purchased from a shop by either mine, or Lil Monster's father. As we got older, we progressed into handmade flowers sprayed with perfume, and then gifts that we purchased with our own pocket money.
It was just what we did. It was a day to be extra nice to our mum and to thank her for... Well, for being our mum, I guess.
More recently, I think that's changed. Mine and Wheelz's relationship is... Unbalanced, is probably the best way of putting it. Due to her disabilities, and my position as her carer, certain boundaries have been blurred and contorted. The traditional mother/daughter relationship hasn't really had a chance to exist, because life gets in the way. We rely on each other in different ways, and there are aspects of our relationship that would probably seem peculiar to outsiders.
I think that now, for me, Mother's Day is still about showing my gratitude and appreciation for Wheelz.
But now, it's a chance to reflect, as an adult, and thank her for the childhood she gave me. Things got severely jacked up along the way, but I never, ever doubted that she loved me, and wanted the best for me, and would have my back whenever I needed her.
Now, when I say 'happy Mother's Day' to Wheelz, I'm not only saying thank you for keeping a roof over my head, and being my mum.
I'm also saying, thank you for teaching me how to be strong enough to deal with the realities of life, and for letting me lean on you when that got to be too much.
I'm saying that I have a huge respect and admiration for the mother that you were when I was a child, despite divorce and stepchildren and so on. But I have even more for you now, for continuing to model the kind of adult that I want to be, even in the face of some major adversity.
I'm saying, thank you for being there for me, through thick and thin, despite how desperately hard some of the roads we've travelled have been.
I'm saying, Happy Mother's Day. Because you're my mum, and I love and appreciate you, and would like to take a day to celebrate you.
Not with the caveat of, I love you despite your disabilities, or because of them. No bullshit about commercialism or consumerism or anything like that.
You're my mum, and I happen to think you're pretty fucking great. So I'm going to take today to tell you that, and maybe spoil you a bit, because that's exactly what you deserve everyday.
Happy Mother's Day.
Love
Stripes
xx
Over the last few weeks, I've noticed that this celebration seems to split opinions. I happen to be a member of a few online forums, Mumsnet being one of them. On Mumsnet, I've noticed two main opinions about Mother's Day.
One school of thought is that it is just one more commercialised bullshit day, created by gift manufacturers, restaurants and card shops to pry more money from our fingers. We should show our appreciation every day, rather than a token effort once a year to save face. Buying into Mother's Day is childish and selfish, etc, etc.
The other main thought that I saw is that there's nothing wrong with wanting to do something a bit special for your mother, be it your biological, adoptive, step mother, or even just a maternal figure in your life. What does it really take to buy a bunch of tulips or daffodils, and a card, just to show you care?
I'm more of the second school of thought, although I do think we should show our appreciation for the people we feel deserve it everyday.
I've been mulling this over, the past few days, to try and figure out my stance on it.
Ever since I was young, we have always done something for Wheelz for Mother's Day. This might have been a gift, purchased from a shop by either mine, or Lil Monster's father. As we got older, we progressed into handmade flowers sprayed with perfume, and then gifts that we purchased with our own pocket money.
It was just what we did. It was a day to be extra nice to our mum and to thank her for... Well, for being our mum, I guess.
More recently, I think that's changed. Mine and Wheelz's relationship is... Unbalanced, is probably the best way of putting it. Due to her disabilities, and my position as her carer, certain boundaries have been blurred and contorted. The traditional mother/daughter relationship hasn't really had a chance to exist, because life gets in the way. We rely on each other in different ways, and there are aspects of our relationship that would probably seem peculiar to outsiders.
I think that now, for me, Mother's Day is still about showing my gratitude and appreciation for Wheelz.
But now, it's a chance to reflect, as an adult, and thank her for the childhood she gave me. Things got severely jacked up along the way, but I never, ever doubted that she loved me, and wanted the best for me, and would have my back whenever I needed her.
Now, when I say 'happy Mother's Day' to Wheelz, I'm not only saying thank you for keeping a roof over my head, and being my mum.
I'm also saying, thank you for teaching me how to be strong enough to deal with the realities of life, and for letting me lean on you when that got to be too much.
I'm saying that I have a huge respect and admiration for the mother that you were when I was a child, despite divorce and stepchildren and so on. But I have even more for you now, for continuing to model the kind of adult that I want to be, even in the face of some major adversity.
I'm saying, thank you for being there for me, through thick and thin, despite how desperately hard some of the roads we've travelled have been.
I'm saying, Happy Mother's Day. Because you're my mum, and I love and appreciate you, and would like to take a day to celebrate you.
Not with the caveat of, I love you despite your disabilities, or because of them. No bullshit about commercialism or consumerism or anything like that.
You're my mum, and I happen to think you're pretty fucking great. So I'm going to take today to tell you that, and maybe spoil you a bit, because that's exactly what you deserve everyday.
Happy Mother's Day.
Love
Stripes
xx
Sunday, 4 March 2018
Keto not working or me not working Keto?
You didn't really think I was going to be able to blog constantly did you? I did think about it, but I went down with a cold and a severe case of sloth-city, and therefore no blogging.
I had my CPAP review at the beginning of March. Good news? I used to stop breathing 89 times per hour when sleeping. Yeah, you read that right - 89 times per hour 😨😨😨 Now, its more like 4 - 5 times per hour (anything less than 5 is considered normal). They want me to get a better sleep pattern but are happy with my progress and my appointments are now patient led - basically, they don't call me, I call them if I need anything.
Bad news? I got on their scales expecting to see a drop. The last time I was weighed there, I was 182 kgs - that was in March 2017. When I started keto, I was around the same (so I believed). This time their scales said 191 kgs (including my boots - that's important, honest). So I had put on nearly 10 kgs in a year. I was horrified. Terrified. Sad af. Poor Stripes had to comfort me whilst the nurse I was seeing tried to figure out how to make me feel better (it could be worse, you know now so you can do something about it, etc etc).
We left the appointment and I had to put a smile on my face as Lil Monster was with us, as well as a friend, and we were off to see Black Panther (go see it - life-changing, Wakanda Forever). Loved the movie - had a great time - got home and basically curled up in bed and sobbed like a child. I think I actually cried myself to sleep, that's how sad I was feeling.
I've been following keto since the beginning of January. I think I've had a couple of slips - (I attacked Stripes for a chocolate digestive last week, it wasn't pretty but it tasted lovely) - and I had some baileys in my hot chocolate one night last week. But apart from that, I've been a good girl. No bread, potatoes, pasta, rice since the beginning of January. Spinach is my vegetable of choice. Water. Atkins bars.
Now it could be the Atkins bars - one per day as a treat since I gave up cream cheese cheesecake as I was close to over-dosing on it and I found it too moreish. They fitted into my macros - I was watching YouTube videos and joining keto groups on facebook and reading feverishly to see what I could do to make things work better. But the scales don't agree.
I've weighed myself twice since that CPAP review, and each time I've put weight on. We're not even sure it's physically possible and are seriously considering that the scales might say they can weigh that high, but they can't cope. But I don't feel smaller, don't look smaller, my clothes don't fit better.
So it looks like keto isn't working for me. Or maybe I'm not doing keto the right way. Either way, it's been two months and I've seen zero weight loss. So time for a change.
Stripes and I had a chat and I've decided to give VLCD another try. I was successful on the Cambridge Diet about 14 years ago - lost 100 lbs - but life got in the way in the form of my unsupportive spouse, financial devastation, physical problems - and the weight crept back on.
I've been watching YouTube videos to see people's experiences - to see if things have changed; and I've been surfing the internet to find the cheapest way to follow the plan. I've found a deal on Exante products, so have ordered 25 days worth of products and once they arrive, I will slide from keto into meal replacements. I want to stick to it for at least one month - if it's working, maybe I'll just keep going.
Terrified in case it doesn't work - haven't heard anything back from the Dr's surgery or the weight loss clinic. Terrified in case it does work - it was a mind-f*ck losing all that weight all those years ago. And maybe, tentatively hopeful?
Maybe you'll hear more from me as I go through this. No promises though.
I had my CPAP review at the beginning of March. Good news? I used to stop breathing 89 times per hour when sleeping. Yeah, you read that right - 89 times per hour 😨😨😨 Now, its more like 4 - 5 times per hour (anything less than 5 is considered normal). They want me to get a better sleep pattern but are happy with my progress and my appointments are now patient led - basically, they don't call me, I call them if I need anything.
Bad news? I got on their scales expecting to see a drop. The last time I was weighed there, I was 182 kgs - that was in March 2017. When I started keto, I was around the same (so I believed). This time their scales said 191 kgs (including my boots - that's important, honest). So I had put on nearly 10 kgs in a year. I was horrified. Terrified. Sad af. Poor Stripes had to comfort me whilst the nurse I was seeing tried to figure out how to make me feel better (it could be worse, you know now so you can do something about it, etc etc).
We left the appointment and I had to put a smile on my face as Lil Monster was with us, as well as a friend, and we were off to see Black Panther (go see it - life-changing, Wakanda Forever). Loved the movie - had a great time - got home and basically curled up in bed and sobbed like a child. I think I actually cried myself to sleep, that's how sad I was feeling.
I've been following keto since the beginning of January. I think I've had a couple of slips - (I attacked Stripes for a chocolate digestive last week, it wasn't pretty but it tasted lovely) - and I had some baileys in my hot chocolate one night last week. But apart from that, I've been a good girl. No bread, potatoes, pasta, rice since the beginning of January. Spinach is my vegetable of choice. Water. Atkins bars.
Now it could be the Atkins bars - one per day as a treat since I gave up cream cheese cheesecake as I was close to over-dosing on it and I found it too moreish. They fitted into my macros - I was watching YouTube videos and joining keto groups on facebook and reading feverishly to see what I could do to make things work better. But the scales don't agree.
I've weighed myself twice since that CPAP review, and each time I've put weight on. We're not even sure it's physically possible and are seriously considering that the scales might say they can weigh that high, but they can't cope. But I don't feel smaller, don't look smaller, my clothes don't fit better.
So it looks like keto isn't working for me. Or maybe I'm not doing keto the right way. Either way, it's been two months and I've seen zero weight loss. So time for a change.
Stripes and I had a chat and I've decided to give VLCD another try. I was successful on the Cambridge Diet about 14 years ago - lost 100 lbs - but life got in the way in the form of my unsupportive spouse, financial devastation, physical problems - and the weight crept back on.
I've been watching YouTube videos to see people's experiences - to see if things have changed; and I've been surfing the internet to find the cheapest way to follow the plan. I've found a deal on Exante products, so have ordered 25 days worth of products and once they arrive, I will slide from keto into meal replacements. I want to stick to it for at least one month - if it's working, maybe I'll just keep going.
Terrified in case it doesn't work - haven't heard anything back from the Dr's surgery or the weight loss clinic. Terrified in case it does work - it was a mind-f*ck losing all that weight all those years ago. And maybe, tentatively hopeful?
Maybe you'll hear more from me as I go through this. No promises though.
Saturday, 3 March 2018
Cake International, entries open
Double post today. The snow means I've got little to do at the minute.
I posted in November about Cake International, a big show that takes place at the NEC. We attended, and I entered one of the many competitions.
Entry has just recently opened for this year's event. It's a big deal this year, their 25th anniversary, and so the only CI this year will be in Birmingham. That's a huge deal, as it means it'll likely be bigger than ever.
I've entered a competition at CI for the last three years, and other competitions before that, including Salon Culinnaire.
But I'm really apprehensive about this year.
I think it's because of last time. It's not necessarily the disqualification that's putting me off, although it's not something I'd like to repeat!
I think it's the not knowing. A variety of circumstances meant that I wasn't able to get the judge's feedback, meaning that I still have no idea why I was disqualified. The idea of going back there, the embarrassment and the shame, means that it's hard to entertain the notion of willingly doing that again.
But at the same time... part of the reason I do it, is because it's something that's mine and mine alone. It's a way to stay connected to the creative path I started to undertake when I went to college. It's time that I put into myself, holed away in our spare room, creating. And it's not like I don't have ideas. I've had an idea rattling around my head since last November. So part of me thinks it's just a case of giving myself a shake and doing it. Right?
The other problem is...
For the past few years, Wheelz has gotten up at 6am to drive me to the NEC, so that I can drop off my entry. This is mainly because we live in Birmingham, and objectively, we're not too far from the NEC, so it makes more sense than me staying at a hotel nearby, for example. I've always been incredibly grateful to her for this, because it means there's one less thing I have to worry about.
But on the other hand. Is it fair for me to keep asking that of her? I know that she'd probably (probably!) tell me if she really didn't think she was up to it. But I also know that she'd try and make herself drive anyway, being as it's for me.
So does that mean I'm taking advantage if I ask her? Or is that me being ridiculous?
I don't know. I need to think about it. I don't want to cut myself off from something that I do genuinely enjoy doing. This kind of feels like something that anxiety could take away from me, and I don't want that.
So then, I should do it. Right? Just give myself a shake, and fill in the entry form, and get started.
That's what I should do.
That's what I will do.
I think...
I posted in November about Cake International, a big show that takes place at the NEC. We attended, and I entered one of the many competitions.
Entry has just recently opened for this year's event. It's a big deal this year, their 25th anniversary, and so the only CI this year will be in Birmingham. That's a huge deal, as it means it'll likely be bigger than ever.
I've entered a competition at CI for the last three years, and other competitions before that, including Salon Culinnaire.
But I'm really apprehensive about this year.
I think it's because of last time. It's not necessarily the disqualification that's putting me off, although it's not something I'd like to repeat!
I think it's the not knowing. A variety of circumstances meant that I wasn't able to get the judge's feedback, meaning that I still have no idea why I was disqualified. The idea of going back there, the embarrassment and the shame, means that it's hard to entertain the notion of willingly doing that again.
But at the same time... part of the reason I do it, is because it's something that's mine and mine alone. It's a way to stay connected to the creative path I started to undertake when I went to college. It's time that I put into myself, holed away in our spare room, creating. And it's not like I don't have ideas. I've had an idea rattling around my head since last November. So part of me thinks it's just a case of giving myself a shake and doing it. Right?
The other problem is...
For the past few years, Wheelz has gotten up at 6am to drive me to the NEC, so that I can drop off my entry. This is mainly because we live in Birmingham, and objectively, we're not too far from the NEC, so it makes more sense than me staying at a hotel nearby, for example. I've always been incredibly grateful to her for this, because it means there's one less thing I have to worry about.
But on the other hand. Is it fair for me to keep asking that of her? I know that she'd probably (probably!) tell me if she really didn't think she was up to it. But I also know that she'd try and make herself drive anyway, being as it's for me.
So does that mean I'm taking advantage if I ask her? Or is that me being ridiculous?
I don't know. I need to think about it. I don't want to cut myself off from something that I do genuinely enjoy doing. This kind of feels like something that anxiety could take away from me, and I don't want that.
So then, I should do it. Right? Just give myself a shake, and fill in the entry form, and get started.
That's what I should do.
That's what I will do.
I think...
Soap, glorious soap!
I've been saying I'll write about this for ages. So being as we're snowed in, I'll write a nice lighthearted post about our soap making adventures, as opposed to complaining about the cold, and our temperamental boiler.
Last year, when we found out we were getting our bathroom done, both Wheelz and I mentioned that we liked the idea of making soap. So we decided to give it a go.
I got a couple of make-your-own soap kits for Christmas, had a brief read of the instructions, and we set off.
The pictures aren't suitable for sharing.
Nah, I'm kidding. We had fun, and they turned out pretty well. Wheelz made a bright pink coconut oat soap, whilst I branched out with green pina colada scented soap. They looked cute enough that we were more than happy to send them out. I just can't find the pictures.
Since then, I've made quite a few more soaps. I made a batch with Lil Monster, and neither of us died, proving that we can spend time together as a family with no casualties. We made goats milk soap, in clementine and vanilla fruit varieties.
I've loved making the soaps. I like the creative element, and I also like the ease of it. It doesn't take long to make beautiful soaps, which look and smell great, and are perfectly functional. I also like doing something where the results are fairly instantaneous. With the soap kits we've used, you just melt the base, add scents and colours, and they set within a day or so. There's something very relaxing about making something where you can see it coming together and working before your very eyes. I suspect part of that comes from my background in sugar flowers. With sugar flowers, the end result is very pretty, but there's a lot of planning and uncertainty to get there. With soaps, if it looks right and smells right, chances are you're onto a winner.
We've been sending our soaps out as birthday presents for family, save a few that we're keeping for ourselves (or would be, if Wheelz hadn't stolen my coconut scrub soap!), and they've been well received. But even if they weren't, it wouldn't take away from the sense of achievement that comes from making something with your own two hands, and being able to see that not only can you do something successfully, it can turn out beautifully.
Last year, when we found out we were getting our bathroom done, both Wheelz and I mentioned that we liked the idea of making soap. So we decided to give it a go.
I got a couple of make-your-own soap kits for Christmas, had a brief read of the instructions, and we set off.
The pictures aren't suitable for sharing.
Nah, I'm kidding. We had fun, and they turned out pretty well. Wheelz made a bright pink coconut oat soap, whilst I branched out with green pina colada scented soap. They looked cute enough that we were more than happy to send them out. I just can't find the pictures.
Since then, I've made quite a few more soaps. I made a batch with Lil Monster, and neither of us died, proving that we can spend time together as a family with no casualties. We made goats milk soap, in clementine and vanilla fruit varieties.
I've loved making the soaps. I like the creative element, and I also like the ease of it. It doesn't take long to make beautiful soaps, which look and smell great, and are perfectly functional. I also like doing something where the results are fairly instantaneous. With the soap kits we've used, you just melt the base, add scents and colours, and they set within a day or so. There's something very relaxing about making something where you can see it coming together and working before your very eyes. I suspect part of that comes from my background in sugar flowers. With sugar flowers, the end result is very pretty, but there's a lot of planning and uncertainty to get there. With soaps, if it looks right and smells right, chances are you're onto a winner.
We've been sending our soaps out as birthday presents for family, save a few that we're keeping for ourselves (or would be, if Wheelz hadn't stolen my coconut scrub soap!), and they've been well received. But even if they weren't, it wouldn't take away from the sense of achievement that comes from making something with your own two hands, and being able to see that not only can you do something successfully, it can turn out beautifully.
 |
| Vanilla fruits, goats milk. Pretty swirled with pink |
 |
| Clementine and chocolate, goats milk base. Although, mostly clementine... |
 |
| Lemon and poppy seed. |
 |
| Coconut scrub soap. This was Wheelz's, but now she has two. Being as she stole mine, and all. Not that I'm salty... |
 |
| And last but not least, coconut oil soap. This went to Wheelz for her birthday, due to her obsession with all things coconut scented. |
Thursday, 8 February 2018
Happy birthday, Wheelz!
To my partner in crime, my pick me up when I'm feeling low, my very best friend
I know it's been a real shitter of a week, what with bathroom reno still never ending, and leurgies from Lil Monster still taking their toll.
I just wanted to take the time to write you this, before I go to bed. I'm lying in bed, listening to you listen to 'More Than Words', and thinking I'm so glad that I stayed up till midnight to be your first 'happy birthday'.
You never believe me when I say it, but I truly do feel lucky to have you as my best friend. There's no one in the world who gets me like you do, and vice versa. We've had a hell of a year together, haven't we? Moving house, Lil Monster dramas, various diagnoses and appointments, renovations...
And there's no one else that I'd have wanted to go through it with, both good times and bad.
Here's hoping that this year holds more good than bad (and I'm knocking on every available piece of wood for that!). I hope you have a fantastic day, because I can think of no one who deserves it more.
So to the incredible woman who taught me the true meaning of strength, resilience and bravery, as well as a kick ass sense of humour, happy birthday, Wheelz.
From
Stripes, and the beasties
I know it's been a real shitter of a week, what with bathroom reno still never ending, and leurgies from Lil Monster still taking their toll.
I just wanted to take the time to write you this, before I go to bed. I'm lying in bed, listening to you listen to 'More Than Words', and thinking I'm so glad that I stayed up till midnight to be your first 'happy birthday'.
You never believe me when I say it, but I truly do feel lucky to have you as my best friend. There's no one in the world who gets me like you do, and vice versa. We've had a hell of a year together, haven't we? Moving house, Lil Monster dramas, various diagnoses and appointments, renovations...
And there's no one else that I'd have wanted to go through it with, both good times and bad.
Here's hoping that this year holds more good than bad (and I'm knocking on every available piece of wood for that!). I hope you have a fantastic day, because I can think of no one who deserves it more.
So to the incredible woman who taught me the true meaning of strength, resilience and bravery, as well as a kick ass sense of humour, happy birthday, Wheelz.
From
Stripes, and the beasties
Tuesday, 6 February 2018
Well I didn't get to sleep yet but.....
... I did set up a twitter account!! Not sure how much use it will get but if anyone is reading this and wants to say hi, just go to twitter and send us a tweet!
Happy birthday to me.....well, nearly!
I'm 48 on Friday and my head is abuzz.
There's the meeting with the Doctor where weight loss surgery was suggested. The follow-up meeting where it was chased up. And the two friends who have undergone said surgery in the last three months alone.
I've been following keto since December, with a break for Christmas, and according to the scales have lost the grand total of 11 lbs. Near-daily photos of my face show a difference but that could just be lighting, eyebrow makeup and the angle of the phone - according to me anyway.
For my birthday, I decided to shave most of my hair off and bleach it blonde. Yep, I'm finally going blonde - I've wanted to do it for nearly 30 years but have always chickened out as I thought my mother would disapprove (believe me, I KNOW I have mummy issues and there isn't enough room in this post to go into it). Now, this decision was also based on the idea that the newly installed wet room would mean I can shower regularly and wash/dye my hair myself - some independence at last!! Into the third week of the renovation (that was meant to last a week to ten days), and the hope is dwindling. My birthday is Friday and although the shower is working (at the moment), the water pump is not which means the water doesn't drain away.
We don't need another flood and the cats object to getting their paws wet, so no shower for me.
It's been - well, difficult is the polite word for it. I'm not sleeping; the cats are stressed because of strangers in and out all day as well as the noise; Stripes is stressed because she's trying to look after everyone and make it all okay when it's completely out of her control; and Little Monster gives no f*cks whatsoever because that's her MO. Things got even more stressful when Little Monster called from school on Friday saying she wasn't feeling well. She threw up on Sunday which meant mandatory two days off school - during which time she has driven both me and Stripes completely insane. Thank God she's going back tomorrow, but not before making sure to pass her leurgy on to me. Which is why I'm awake at 05:39 on a Tuesday night, when I should be resting/sleeping. I'm halfway through a roll of toilet paper blowing my nose and wishing that sneezing didn't make my back seize up nearly every single time. The pain of trying NOT to sneeze is almost as bad as the pain when I do!
So, very quick catch up because I should at least attempt to turn the lights off, put on the CPAP mask and close my eyes before 6 am.
January : I helped make one batch of soap. Stripes has made several more and they are getting more beautiful and more intricate as she goes. Beautiful enough to use as birthday presents for family and for them to ask where we got them from.
February:
March: to be decided, although hopefully keto will still be ongoing and my eyebrows will be becoming bushy!
We went to the Dr in January for a smear test. And it was just as enjoyable as you might expect. The room they wanted us to get to was awkward with the wheelchair - sort of round a corner and through a narrow doorway into a small room; the bed they wanted me to lie on was narrow and kinda scary; and the privacy was non-existent to be frank. But hey, I managed it and the results were fine so check that off the list. The next doctor's appointment was worse because the room where it was held was through a doorway that was too narrow for the wheelchair, so I had to lean against the wall whilst Stripes semi-put the chair down and dragged it through the doorway, set it up again and caught me as I collapsed into an ungainly heap. No members of staff tried to help us - a member of the public kept the door open for us to get through.
And this is a relatively new doctor's surgery which has disabled parking, some automatic doors and lifts. It beggars belief, it really does.
So I haven't been out and about much - a trip to Asda has been the most adventurous I've got, and that was FUN because I was on a mobility scooter and could race Stripes and Little Monster down the aisles!
I will try to write more, but I've been feeling rather low and rather useless - what do I have to write when I don't go anywhere or do anything?
Well apart from the Thirty Seconds to Mars concert we are booked to go to in March; and that rain or shine, we are going to the cinema to see 'Black Panther'; and probably going to the cinema to see 'Fifty Shades Freed' because not only is it delicious trash, but it has Tyler Hoechlin in it and he is one of my current 'crushes' (six years and counting so far). But apart from that, we won't be going out much, honest.
Yeah, I'll write more - I promise!
There's the meeting with the Doctor where weight loss surgery was suggested. The follow-up meeting where it was chased up. And the two friends who have undergone said surgery in the last three months alone.
I've been following keto since December, with a break for Christmas, and according to the scales have lost the grand total of 11 lbs. Near-daily photos of my face show a difference but that could just be lighting, eyebrow makeup and the angle of the phone - according to me anyway.
For my birthday, I decided to shave most of my hair off and bleach it blonde. Yep, I'm finally going blonde - I've wanted to do it for nearly 30 years but have always chickened out as I thought my mother would disapprove (believe me, I KNOW I have mummy issues and there isn't enough room in this post to go into it). Now, this decision was also based on the idea that the newly installed wet room would mean I can shower regularly and wash/dye my hair myself - some independence at last!! Into the third week of the renovation (that was meant to last a week to ten days), and the hope is dwindling. My birthday is Friday and although the shower is working (at the moment), the water pump is not which means the water doesn't drain away.
We don't need another flood and the cats object to getting their paws wet, so no shower for me.
It's been - well, difficult is the polite word for it. I'm not sleeping; the cats are stressed because of strangers in and out all day as well as the noise; Stripes is stressed because she's trying to look after everyone and make it all okay when it's completely out of her control; and Little Monster gives no f*cks whatsoever because that's her MO. Things got even more stressful when Little Monster called from school on Friday saying she wasn't feeling well. She threw up on Sunday which meant mandatory two days off school - during which time she has driven both me and Stripes completely insane. Thank God she's going back tomorrow, but not before making sure to pass her leurgy on to me. Which is why I'm awake at 05:39 on a Tuesday night, when I should be resting/sleeping. I'm halfway through a roll of toilet paper blowing my nose and wishing that sneezing didn't make my back seize up nearly every single time. The pain of trying NOT to sneeze is almost as bad as the pain when I do!
So, very quick catch up because I should at least attempt to turn the lights off, put on the CPAP mask and close my eyes before 6 am.
January : I helped make one batch of soap. Stripes has made several more and they are getting more beautiful and more intricate as she goes. Beautiful enough to use as birthday presents for family and for them to ask where we got them from.
February:
- grow my eyebrows (they are shamefully sparse),
- bleach my hair
- live in the shower for at least a week
- keep on keto
March: to be decided, although hopefully keto will still be ongoing and my eyebrows will be becoming bushy!
We went to the Dr in January for a smear test. And it was just as enjoyable as you might expect. The room they wanted us to get to was awkward with the wheelchair - sort of round a corner and through a narrow doorway into a small room; the bed they wanted me to lie on was narrow and kinda scary; and the privacy was non-existent to be frank. But hey, I managed it and the results were fine so check that off the list. The next doctor's appointment was worse because the room where it was held was through a doorway that was too narrow for the wheelchair, so I had to lean against the wall whilst Stripes semi-put the chair down and dragged it through the doorway, set it up again and caught me as I collapsed into an ungainly heap. No members of staff tried to help us - a member of the public kept the door open for us to get through.
And this is a relatively new doctor's surgery which has disabled parking, some automatic doors and lifts. It beggars belief, it really does.
So I haven't been out and about much - a trip to Asda has been the most adventurous I've got, and that was FUN because I was on a mobility scooter and could race Stripes and Little Monster down the aisles!
I will try to write more, but I've been feeling rather low and rather useless - what do I have to write when I don't go anywhere or do anything?
Well apart from the Thirty Seconds to Mars concert we are booked to go to in March; and that rain or shine, we are going to the cinema to see 'Black Panther'; and probably going to the cinema to see 'Fifty Shades Freed' because not only is it delicious trash, but it has Tyler Hoechlin in it and he is one of my current 'crushes' (six years and counting so far). But apart from that, we won't be going out much, honest.
Yeah, I'll write more - I promise!
The Never Ending Story
OK, that might be exaggerating a little bit, because it's almost over with. I bloody hope it is, anyway.
I had hoped to have a post set up for the end of January, when our bathroom work was due to be done. But, as is often the case with our luck, works have taken longer than expected. Then things stopped working. Then they started working, and something else stopped working. To be honest with you, it's kind of the story of our lives.
A bit of backstory. When Wheelz, Lil Monster and I moved in August, we moved into a property that an occupational therapist said needed to be converted. This was absolutely fine with us. Wheelz's physical restraints mean that a bath is too much to manage, whereas a shower should be absolutely fine. The grant took a while to come through, but eventually, at the end of last year, we were given a date in January when work would begin.
We were incredibly excited. As I said, it would mean so much for Wheelz especially. She could take showers independently, with no worries about getting in or out of the bath. She'd be able to wash her hair properly, instead of using the no-rinse shampoo from the care supply shop. The work that needed doing, which they predicted would take a week to ten days, would be well worth the initial inconvenience of having workers in, right?
Well... I suppose so. But it's not done yet.
When the work first started, it was tough to get used to. Early mornings blighted by incredibly loud noise from drilling, and removing tiles, and rerouting plumbing. People flitting in and out of our home, with no introduction and few explanations. The cats were freaking out at the intruders, spending a lot of time hiding, and not eating, and keeping very close to us for protection.
For a few nights, Wheelz had to sleep on the sofa, because it was too much for her to cart all of her stuff (painkiller drawer, CPAP machine, duvet, crutches etc,) through to the living room. The dust kicked up, made her asthma worse. The tools and supplies made our flat a veritable assault course to get from one end to the other. The kitchen was filled with toilet cisterns and new sinks, whilst my bedroom doorway held shower rails and parts.
We spent two days barely able to get through the front door because of the giant box that housed the shower gates.
Saturday mornings weren't exempt either. Our plumber wanted the job done as soon as possible, which meant starting early, working weekends and bringing in extra help/apprentices (his identity was never made clear to us).
We spent time poring over tile colours and floor coverings to make our selections, sweeping up the debris caused by builders wandering through the flat and keeping our fingers crossed that they would be finished soon.
And, thank God, they said they were. On Saturday just gone, 3/2/18, he said he was finished. He showed me the shower, and told me that we just had to wait on the electrician to hook it up, and it was ready. He walked me through the issue with the boiler and explained that he'd complete the radiator just as soon as we got it repressured (?), so that he wouldn't overload it and cut off our heating.
I'll tell you, Wheelz and I rejoiced. We'd spent the last two weeks managing with strip washes in the sink, and were desperate for a proper shower, with hot water and handmade soap- which I promise, I will eventually get around to posting about.
The electrician showed up yesterday morning. He disappeared into the bathroom for a while, whilst we waited with bated breath to hear that the shower was done. Then we heard him on the phone to the plumber. There was an issue, the said. The circuit board wasn't working. No bother. A quick job, which they would pop around this morning and fix. We tempered our disappointment, and waited for them today.
The plumber showed up this morning. He brought the new circuit board, and reiterated that it was an easy fix. He disappeared into the bathroom. An hour or so later, he stuck his head around the door, and asked if I wanted to see the shower working. I nearly knocked him over, trying to get there so quick. And it worked! You pressed a button, water flowed out. I was ecstatic! He got me to sign off on his work, and bid me a good day. When Wheelz awoke, she wanted to come see the new shower, so that she could finally, finally use it.
Except, when Wheelz came to take a look, there was an issue. We pressed the on button, and it started flashing red.
Now, we're fairly capable, resourceful women. So we had a look through the manual, and managed to right the problem. For a few short minutes, it was great. We had flowing hot water!!
Then we noticed that the pump wasn't working. The water wasn't draining, and was in fact making it's way to the toilet with surprising speed. We got in touch with the plumber.
He came around to ours, and expressed surprise that it wasn't working properly. After all, it had been just fine when he had left, not even an hour before.
"That never happens. If there's ever a fault, it's with the shower or the pump, but never both."
Wheelz and I exchanged a droll look. With us, it can always be both.
So, the plumber took a look, dried up the floor, removed some tiles. An electrical fault, he thinks. So he called the electrician, who can't be with us until about three. The shower's fine, he said. No problem there at all. Just the pump not working.
So the electrician has to come by and try to fix it. If he can, the plumber will be back in the morning to replace the tiles. If not... well, I'm trying not to consider that possibility.
We need a shower back. For obvious reasons - the back of Lil Monster's neck is looking disturbingly grey - but also because Friday is Wheelz's birthday.
Historically, no matter how much organising and haranguing and threatening I do, something goes wrong on Wheelz's birthday. Whether it's Lil Monster kicking off, or Bible Sis refusing to get in touch or visit, or having to put the day off because of illness, there is always something.
It feels worse this year, because this was meant to be done. She was meant to get a hot shower, and some handmade soap and a new bleached hairstyle for her birthday. I'd planned it, made it work, willed it to be so, goddammit! But yet again, things are starting on a bad note, and it's not even something within my control.
So, we'll wait until later, to see if the electrician can fix it. And we'll manage if he doesn't, because that's what we always do.
But you mark my words, if this neverending story doesn't find a cut off point sometime very soon, I'm going to be having serious words with whatever cosmic forces have got it in for us!
I had hoped to have a post set up for the end of January, when our bathroom work was due to be done. But, as is often the case with our luck, works have taken longer than expected. Then things stopped working. Then they started working, and something else stopped working. To be honest with you, it's kind of the story of our lives.
A bit of backstory. When Wheelz, Lil Monster and I moved in August, we moved into a property that an occupational therapist said needed to be converted. This was absolutely fine with us. Wheelz's physical restraints mean that a bath is too much to manage, whereas a shower should be absolutely fine. The grant took a while to come through, but eventually, at the end of last year, we were given a date in January when work would begin.
We were incredibly excited. As I said, it would mean so much for Wheelz especially. She could take showers independently, with no worries about getting in or out of the bath. She'd be able to wash her hair properly, instead of using the no-rinse shampoo from the care supply shop. The work that needed doing, which they predicted would take a week to ten days, would be well worth the initial inconvenience of having workers in, right?
Well... I suppose so. But it's not done yet.
When the work first started, it was tough to get used to. Early mornings blighted by incredibly loud noise from drilling, and removing tiles, and rerouting plumbing. People flitting in and out of our home, with no introduction and few explanations. The cats were freaking out at the intruders, spending a lot of time hiding, and not eating, and keeping very close to us for protection.
For a few nights, Wheelz had to sleep on the sofa, because it was too much for her to cart all of her stuff (painkiller drawer, CPAP machine, duvet, crutches etc,) through to the living room. The dust kicked up, made her asthma worse. The tools and supplies made our flat a veritable assault course to get from one end to the other. The kitchen was filled with toilet cisterns and new sinks, whilst my bedroom doorway held shower rails and parts.
We spent two days barely able to get through the front door because of the giant box that housed the shower gates.
Saturday mornings weren't exempt either. Our plumber wanted the job done as soon as possible, which meant starting early, working weekends and bringing in extra help/apprentices (his identity was never made clear to us).
We spent time poring over tile colours and floor coverings to make our selections, sweeping up the debris caused by builders wandering through the flat and keeping our fingers crossed that they would be finished soon.
And, thank God, they said they were. On Saturday just gone, 3/2/18, he said he was finished. He showed me the shower, and told me that we just had to wait on the electrician to hook it up, and it was ready. He walked me through the issue with the boiler and explained that he'd complete the radiator just as soon as we got it repressured (?), so that he wouldn't overload it and cut off our heating.
I'll tell you, Wheelz and I rejoiced. We'd spent the last two weeks managing with strip washes in the sink, and were desperate for a proper shower, with hot water and handmade soap- which I promise, I will eventually get around to posting about.
The electrician showed up yesterday morning. He disappeared into the bathroom for a while, whilst we waited with bated breath to hear that the shower was done. Then we heard him on the phone to the plumber. There was an issue, the said. The circuit board wasn't working. No bother. A quick job, which they would pop around this morning and fix. We tempered our disappointment, and waited for them today.
The plumber showed up this morning. He brought the new circuit board, and reiterated that it was an easy fix. He disappeared into the bathroom. An hour or so later, he stuck his head around the door, and asked if I wanted to see the shower working. I nearly knocked him over, trying to get there so quick. And it worked! You pressed a button, water flowed out. I was ecstatic! He got me to sign off on his work, and bid me a good day. When Wheelz awoke, she wanted to come see the new shower, so that she could finally, finally use it.
Except, when Wheelz came to take a look, there was an issue. We pressed the on button, and it started flashing red.
Now, we're fairly capable, resourceful women. So we had a look through the manual, and managed to right the problem. For a few short minutes, it was great. We had flowing hot water!!
Then we noticed that the pump wasn't working. The water wasn't draining, and was in fact making it's way to the toilet with surprising speed. We got in touch with the plumber.
He came around to ours, and expressed surprise that it wasn't working properly. After all, it had been just fine when he had left, not even an hour before.
"That never happens. If there's ever a fault, it's with the shower or the pump, but never both."
Wheelz and I exchanged a droll look. With us, it can always be both.
So, the plumber took a look, dried up the floor, removed some tiles. An electrical fault, he thinks. So he called the electrician, who can't be with us until about three. The shower's fine, he said. No problem there at all. Just the pump not working.
So the electrician has to come by and try to fix it. If he can, the plumber will be back in the morning to replace the tiles. If not... well, I'm trying not to consider that possibility.
We need a shower back. For obvious reasons - the back of Lil Monster's neck is looking disturbingly grey - but also because Friday is Wheelz's birthday.
Historically, no matter how much organising and haranguing and threatening I do, something goes wrong on Wheelz's birthday. Whether it's Lil Monster kicking off, or Bible Sis refusing to get in touch or visit, or having to put the day off because of illness, there is always something.
It feels worse this year, because this was meant to be done. She was meant to get a hot shower, and some handmade soap and a new bleached hairstyle for her birthday. I'd planned it, made it work, willed it to be so, goddammit! But yet again, things are starting on a bad note, and it's not even something within my control.
So, we'll wait until later, to see if the electrician can fix it. And we'll manage if he doesn't, because that's what we always do.
But you mark my words, if this neverending story doesn't find a cut off point sometime very soon, I'm going to be having serious words with whatever cosmic forces have got it in for us!
Saturday, 20 January 2018
A rough day
Sometimes, I feel as though the root cause of my anxiety is this:
For millennia, the universe has managed to keep things goings. Even if civilisations have risen and fallen, and creatures have gone extinct the world over, there is a constancy to the universe. The sun will rise in the morning, and set in the evening. The earth will orbit the sun, taking roughly 364.25 days to do so. Every day, people will be born, and take the place of those who have passed. These things, we all know to be true.
And yet, I can't even manage to keep the two most important people in my world happy. There is always angst and anger, hurt and ill feeling. There are days that pass in which no one feels truly happy, where we all seem to be tiptoeing around one another, terrified of the proverbial egg shells.
And I feel as though the crushing weight of the universe sits upon my shoulders.
We have kept galaxies and planets, constellations and countless stars alive for millennia, if not more. In the twenty short years that you have been in existence, you can't even manage to keep your family happy. Not even happy all the time; you can't even seem to manage an even-keeled balance.
It's days like these when I feel this the most keenly. Days when we have tried for a 'normal' family day, and failed rather epically.
And the worst of it is, I'm not even sure it's mine to fix. I suspect it is something that we're all supposed to club together and heal, which is no mean feat considering one of us is fourteen and going through the typical selfish bloody teenager phase. Familial relationships are never the fault of one, nor can one alone heal them. Logically, I know this.
But even so, I feel as though I am failing.
For millennia, the universe has managed to keep things goings. Even if civilisations have risen and fallen, and creatures have gone extinct the world over, there is a constancy to the universe. The sun will rise in the morning, and set in the evening. The earth will orbit the sun, taking roughly 364.25 days to do so. Every day, people will be born, and take the place of those who have passed. These things, we all know to be true.
And yet, I can't even manage to keep the two most important people in my world happy. There is always angst and anger, hurt and ill feeling. There are days that pass in which no one feels truly happy, where we all seem to be tiptoeing around one another, terrified of the proverbial egg shells.
And I feel as though the crushing weight of the universe sits upon my shoulders.
We have kept galaxies and planets, constellations and countless stars alive for millennia, if not more. In the twenty short years that you have been in existence, you can't even manage to keep your family happy. Not even happy all the time; you can't even seem to manage an even-keeled balance.
It's days like these when I feel this the most keenly. Days when we have tried for a 'normal' family day, and failed rather epically.
And the worst of it is, I'm not even sure it's mine to fix. I suspect it is something that we're all supposed to club together and heal, which is no mean feat considering one of us is fourteen and going through the typical selfish bloody teenager phase. Familial relationships are never the fault of one, nor can one alone heal them. Logically, I know this.
But even so, I feel as though I am failing.
Sunday, 7 January 2018
Happy New Year!
As the title starts, Happy New Year to anyone reading this. We've somehow made it to 2018.
I know I'm a little late in posting this- technical issues, family shit. Same old.
This will probably only be a short post.
As the clock passed midnight, Wheelz, Lil Monster and I asked one another, what are your resolutions for this year? What are you aiming to do?
Life has taught me not to make any firm resolutions. They don't seem to work out. The universe has an uncanny way of stepping in and messing things up. But I have made a few small resolutions, a few small personal goals that I'm going to try and keep up this year.
1. Write more. Whether it's on here, or in a diary, or recreationally. I'm going to try and make time to sit down and write at least once a week. There's something cathartic about letting words fill a page. It feels like unloading, like letting things go. Even if there's nothing special, or new, or important about what I'm writing. It's just good to let things out of my head.
2. Talk to people, about how I'm feeling. The day after Boxing Day, my lovely Aunt offered to give me a lift home. She's in a similar situation to me with regards to Lil Monster. It was the first time in a while that I've had a chance to talk to someone openly, about my thoughts and feelings, without feeling like I had to censor myself. She told me to get in touch with her, if ever I wanted to chat, or a distraction. I realised that I don't really talk to anyone about my innermost thoughts. I'm not sure if that's because some of them feel too toxic to let out, or if it's because I don't want to burden them. But I ought to talk more, and let people listen, and help. Which leads me onto my next...
3. Accept help. I don't like feeling indebted to people, which is how I generally end up feeling if I accept help from them. The aforementioned lovely Aunt offered to give me a lift, and I felt weird about it and sent her petrol money afterwards. She told me there wasn't any need. Why can't I accept help from others? Is it because I want to feel like I've got a handle on everything? I don't know. But there isn't anything wrong with accepting help. In fact, if I was offering advice to someone else in my position, I'd tell them to take all the help they could get! I'm going to try, this year, to take my own advice a little bit more.
There are other things that I'll probably try and do this year. Wheelz and I are going to attempt soap making this year, as well as experimenting with some fun new keto recipes.
2018, watch out!
I know I'm a little late in posting this- technical issues, family shit. Same old.
This will probably only be a short post.
As the clock passed midnight, Wheelz, Lil Monster and I asked one another, what are your resolutions for this year? What are you aiming to do?
Life has taught me not to make any firm resolutions. They don't seem to work out. The universe has an uncanny way of stepping in and messing things up. But I have made a few small resolutions, a few small personal goals that I'm going to try and keep up this year.
1. Write more. Whether it's on here, or in a diary, or recreationally. I'm going to try and make time to sit down and write at least once a week. There's something cathartic about letting words fill a page. It feels like unloading, like letting things go. Even if there's nothing special, or new, or important about what I'm writing. It's just good to let things out of my head.
2. Talk to people, about how I'm feeling. The day after Boxing Day, my lovely Aunt offered to give me a lift home. She's in a similar situation to me with regards to Lil Monster. It was the first time in a while that I've had a chance to talk to someone openly, about my thoughts and feelings, without feeling like I had to censor myself. She told me to get in touch with her, if ever I wanted to chat, or a distraction. I realised that I don't really talk to anyone about my innermost thoughts. I'm not sure if that's because some of them feel too toxic to let out, or if it's because I don't want to burden them. But I ought to talk more, and let people listen, and help. Which leads me onto my next...
3. Accept help. I don't like feeling indebted to people, which is how I generally end up feeling if I accept help from them. The aforementioned lovely Aunt offered to give me a lift, and I felt weird about it and sent her petrol money afterwards. She told me there wasn't any need. Why can't I accept help from others? Is it because I want to feel like I've got a handle on everything? I don't know. But there isn't anything wrong with accepting help. In fact, if I was offering advice to someone else in my position, I'd tell them to take all the help they could get! I'm going to try, this year, to take my own advice a little bit more.
There are other things that I'll probably try and do this year. Wheelz and I are going to attempt soap making this year, as well as experimenting with some fun new keto recipes.
2018, watch out!
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