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
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