blog · Blogging · Chronic illness · Disability · Illness · Lifestyle · OT · Pain · Sickness · Wheelchair

Self-Care

From the minute you delve into the world of chronic illness you discover self-care. This was a completely new and alien concept to me, when you’ve spent the last 5 years been so busy you barely come into contact with the people you actually live with. Self-care is talked about like it’s the holy grail when it comes to coping with life when you’re sick.
Whenever the topic of self-care came up I instantly felt like it was being suggested to me that I just had to accept living like a grandma. Sometimes, it was spoke about as if drinking camomile tea and having plenty of rest would somehow fix everything. If I’m truthful, this made me angry. Everywhere I turned it explained the importance of relaxing and giving your body the rest it needed. This was not something that appealed to me. Hell was going to have to freeze over before I spent every day watching countdown while knitting. I admit this is partly because I equally suck at both knitting and countdown. My brain still craved to be active and social even if my body wasn’t always so keen on the idea.
When your body doesn’t enable you to work anymore, you quickly feel like you have no purpose. This concern is expressed by a massive part of the chronically ill community as well as by some people I know personally. Whilst on the receiving end of yet another self-care lecture, an OT suggested to me that I needed to fill my days to make my life feel fulfilled. This made sense to me, so I pulled myself out of selective hearing mode to listen up for a change. The suggestion that came next was so patronising it became a running joke amongst my family. She suggested that to gain life fulfilment, I needed to plan in activities each day for example plan to colour in for 2 hours everyday from 3pm-5pm. Yes, at 21 years old, it was being suggested to me that I would feel my life had purpose if I coloured in some pretty pictures each day.
All of these things made me turn my nose up at the idea of providing myself with self-care. If I’m honest with myself I was guilty of doing the exact opposite. I did everything from getting into a new relationship straight out of hospital, when I was still extremely unwell and totally not ready to small things like making plans that I just couldn’t commit too. It was my way of trying to prove to the world that I was “normal” still; when really my body does need more rest than before. That doesn’t mean I have to resign myself to sitting in a chair and watching the world pass me by forever. Self-care can be whatever you want it too to be. For me it’s taking regular naps while everyone else works, that way I’m getting the sleep I need without feeling like I’m missing out. For me self-care is anything I do where I take time out to make myself feel okay; getting my hair done, painting my nails, not rushing my showers on a morning are all examples of how I practice self-care.
Turning my nose up at self-care was a way of denying there was anything wrong which in turn made me more poorly. Giving myself a little more TLC than I used to means I’m then able to live life like I want too. I cannot stress enough the importance of listening to your body whether you’re classed as healthy or not. Take time out for yourself whether its to nurture your physical or mental state. Drink plenty of water, get plenty of sunlight, have a cuppa with friends and take time out to breath. Life can be so physically and mentally demanding that we are so busy we forget the true importance of a little me time.

blog · OT · Sickness · Wheelchair

An OT’s dream

I am currently the owner of a little sporty, deep red and black, four wheeled beauty. Not only is it built to be lightweight, making manoeuvres + control easier, it’s also built to make gaining speed easier than ever!

What’s the issue you ask?

It’s around 0-10 mph which is just about as quick as my wimpy arms can take me. This is a far cry from the brand new Range Rover I may have once dreamt about.

My wheelchair is far, far from glamourous. Add that to my forever growing list of crutches, extra bannister rails, toilet raisers, shower stools, perching stools, bed leavers, ramps and even at one point a temporary zimmer frame; my poor mother’s house has now turned into what can only be described as an OTs dream.

Now for anyone that hasn’t had the pleasure of needing to know what an OT is, it stands for Occupational Therapist. Basically, in short, they’re the equipment people of the NHS world. They are a bit of an un-sung hero, without them I really wouldn’t get anywhere… quite literally. OT’s however, seem to have the ability to make me feel about as sexy as an overweight, middle aged, hairy man in nothing but a thong. Now, whilst I am aware that there is always someone in some deep dark corner of the web somewhere that’s into that kind of thing, it’s not really for the vast majority.

Having to use mobility equipment of any kind at any age can have the ability to mess with your self-confidence far more than I’m proud to admit. We live in a world where so much emphasis is put on how you look. We have been brought up surrounded by photoshopped images of people that present as having the “perfect” life. So, finding yourself to be sat on top of a set of wheels everywhere you go can leave you feeling very small both literally and metaphorically. This can be further emphasised by total stranger’s comments.

Insult hidden as a compliment number 1:-
“Your far too pretty to be in a wheelchair”
Insult hidden as a compliment number 2:-
“It’s a shame with you been a pretty girl too”
Insult hidden as a compliment number 3:-
“ I bet the boys used to chase you”

I would love to be able to write about how it doesn’t make any difference and I don’t care about needing equipment, but it would be a complete lie. I hate my wheelchair. However, that said I hate it in the same way you hated the thermal clothes your mum would buy you. They certainly weren’t going to be pretty but my god were they useful. You may have even looked at them in complete horror at first but once they were on, you realised you wouldn’t want to be without them. Mobility aids work on the same principle. Independence is my one main goal. Independence is what I want morethan anything else in this world. This should be a small request but for the chronically ill or disabled it can be a huge ask, even maybe a pipe dream for some. I am still so far away from regaining the independence I once had but I get closer all the time. Without the equipment the OT’s provide me, I wouldn’t have been able to relearn the skills I had lost and regain the ability complete my own basic care needs.

I continue to wait. And wait. And wait. I am waiting to be moved to a suitable home. I hope to write again about life living on my own and all the things that the OT’S will have me doing then. While in hospital I had to attend a group called ‘breakfast club’ where the only goal was to be able to get to the kitchen and make yourself a hot drink and pour yourself a bowl of cereal. This once again is a task I wouldn’t even think twice about. However, there was a time in my life where this was a huge challenge and left me both mentally and physically exhausted.

I know it will be hard but I know the OT team will help me learn and improve further in time. Until then I suppose I’ll have to stick to my wheels.