The people I have around me, friends and family, are what hold me together most of the time. The people who want me around just because I’m me, who show joy when they see me simply because I exist and I am there. Not because of what I can do, and they certainly don’t let me see what I can’t do. That’s love.
They make plans that they know I can manage, they’ll never suggest doing something that will cause me pain, discomfort or future consequences with my health. They never make me feel less than and they’ve accepted every version of Chloe that I’ve been – both able bodied and disabled. They cheer me on when I manage to do the small things, and they cheer even louder when I can’t.
Yesterday, as you read, was a low day. So I took a lesson from my circle, and I ensured the only things I did were things I am capable of. Mum walked Riley, I hoovered the living room and sat with a puzzle. I should have bathed, but like I said that’s torture and I couldn’t add anymore torture to my day. I also have laundry to do, but I have the week to do that – even if that means multiple small, manageable, loads.
I don’t often not use the energy I wake with for achieving things or ticking something off my always-too-long to do list. If I wake with a good body battery that’s normally the day I’ll collect my medication, walk Riley, do my laundry, collect dog treats or nip to a shop to buy whatever essential item is on my list. There’s always something on that list, I’m nearly 4 years in and I’m still working out what might make my day-to-day easier and buying it. And as my condition is always changing, my need for aids grows. But despite not doing these things I still depleted my battery before bed time.
Of course I don’t do all those things in one day, that’s basically my list of monthly tasks, that I don’t always manage to get done. For instance I don’t think I’ve managed to collect my own medication since November, and often I’ll put a laundry load in first thing and by the time it’s done I’ll have to have mum help put it on the airer.
But what can I do everyday without fail? I wake up, without alarms, around 6-7.30am. I let Riley out and give him his breakfast, and then I’ll have mine. A solid 6/7 days I’ll remember to take my medication on time too, which is before 8.30am, or I’ve already fucked the day. I manage to maintain hydration by drinking at least 2l of water a day. I’ll give Riley lunch and he’ll have random training sessions throughout the day, often ones that ensure I can be sat down. I manage my incontinence and the tasks that come with that. I take my evening medication and supplements as soon as I finish dinner without fail. Riley has dinner and I ensure he has ample toilet breaks and playtime throughout the day; sometimes we play tug of war, other times it’s got to be low energy for me so we play fetch. I ensure I eat with all medication and supplements, so breakfast and dinner – though at least 4-5 nights a week mum cooks. Some weeks it’s more, some it’s less, it all depends on my abilities on any given day. Sometimes I have easy lunches like watermelon or a bit of philly on ritz, or cucumber and carrot sticks, other times it’s instant noodles – it’s got to be low energy and something that doesn’t require me being stood for any length of time. Sometimes I can’t manage to do anything for lunch.
Let’s not forget the wins I have by being able to use my own suffering to help support others like me. To help support a charity and support group full of people battling the same issues as I am.
It may not seem like a lot, but believe me when I say that existing and managing my bodies basic needs can sometimes be a real challenge. And there are improvements, for instance this time last year my fatigue was at such a level that I often couldn’t keep myself hydrated because I physically couldn’t get a drink. Or I’d lie in bed, really hungry, and there would be nothing I could do about it. Even now I ensure there is always some form of snack and a bottle of water in my room for emergencies. Imagine having to keep emergency rations by your bed as standard.
I still manage my water intake to time needing the toilet, particularly in the evenings when I am downstairs so I don’t have to go upstairs again until bedtime. This is both energy saving and managing my physical limitations. My legs often stop responding and I walk like the tin man when they become uncoordinated, or they shake, and each step is like trying to lift a breeze block that’s been strapped to your foot. So I have to manage how much I do physically as well, as doing the stairs too many times in a day brings this on as easily as a 20 minute walk.
So I have limits, but honestly being able to keep myself hydrated and remembering medication daily are big wins for me now. Remembering anything is a win.
My injury to the vaccine wasn’t just the physical symptoms, or the pain and exacerbation of existing conditions, it was the swift cognitive decline. Within weeks I couldn’t understand the work I used to do, I still don’t. I couldn’t remember the simple click of a mouse that would do the basic command I needed. My memory is terrible, if it’s not written it didn’t happen and the information no longer exists. I have to do daily brain training exercises, which help, but lately I’m aware of my memory being worse. I also struggle with verbal information processing, if you’re giving me lots of information it best be on paper!
I lost fine motor skills too – I spent months doing handwriting sheets because my wonderful handwriting suddenly turned into the writing of a 5 year old at best. I still have to work to maintain what I have, I use chime balls and daily I eat something with chopsticks. That’s not including the two rounds of physio exercises I do daily, head to toe, which I believe is likely why I’ve managed to maintain some strength. That’s also a win, to maintain my daily physio routine, because the NHS wouldn’t even give me that.
There is so much people don’t see. Someone I vaguely know may see me in TK Maxx with my walking stick and think aside from using a stick I’m fine. But that’s one of my errands, to pick up my body wash which is the only one I’ve found I don’t react to, and it may well be the first time I’ve managed to get out the house in weeks. It may also be the reason I don’t get out the house for another few weeks. Or that by doing that errand I might not even be able to bath for days and my mum might have to help me out my chair and up to bed that night. Or I might get excited by being out and push myself too far to see more than one section of the shop, buy multiple items and then have to have help with it out the car. Sometimes I’ve found myself requiring assistance out the shop with a bottle of milk and 2 types of vegetables. And some days I can make it into one stop for a bag of roysters and not use my stick – these are my favourite days, even when I’m wobbly and feeling unsafe.
But what I try to show people is a normal functioning human being. I may be seen at someone’s birthday appearing completely normal, but I’ll be on extra meds, likely feeling a little high, and covered head to toes in pain relieving gel. All so I can play the role of healthy human for a few hours and then suffer for weeks as payment. I hate being ‘seen’ now. But being able to go at all is a huge achievement.
The point I’m trying to make is that yesterday I was really trapped in my limitations, but I do have wins. Everyday I have a win, it’s just they don’t look like they used to, they’re a lot harder to achieve, and they don’t come with medals or titles. And few people get to see these wins. They look like just making it to the end of the day in as good a shape as I can manage, and that’s ok. I can accept that most of the time, but there will always be days when I cope a little less.
