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.

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!

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!
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