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.

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

The Three T’s

Twenties, Tears & Tantrums

Some days I entirely understand exactly what happened to 2008 Britney. In fact, on a particularly bad day I may even describe the shaving of her head incident as nothing more then a logical way to confront a bad hair day. Frankly if I am being completely honest, on a really bad pain day, I may consider trying to shave someone else’s head as a punishment for glancing at me the wrong way.

Growing up in England I think we are all brain washed from a young age into believing crying makes you weak, shouting makes you a bad person and laughing for more than 15 seconds makes you crazy. Growing up in general can make you question your sanity a thousand times a day every day from the moment you hit puberty until the moment you hit the grave. Whether the questions are raised by your inability to say no to yet another tequila shot or if it is raised by something entirely more serious; I firmly believe everyone has questioned their sanity at some point. What I have found, however Is that chronic illness can pull so strongly on every single human emotion you can’t help but wonder if you may actually be losing the plot all together.

I have full on wailed like a 2-year-old on a supermarket floor more times in the past 8 months then I can physically ever remember doing in my entire life. Part of me now feels that when life has crumbled to pieces like a soggy digestive, I should just allow the tears and snot flow with absolutely no shame. However, another part of me also feels deeply ashamed that I know I have ugly cried into my chicken dinner more times than I care to remember already this year.

One of my reasons for writing this is to remind myself that although my timing can be far from ideal, it is okay to cry. For anyone who may be reading this, it is okay to cry no matter what your age, gender or circumstances. One particular late night snot fest, found me googling to find out why we cry when we’re sad. It actually made me feel dramatically better about crying so much so I shall share my new found knowledge:

Emotional tears release hormones and toxins that are associated with high stress levels. So there you have it, if you still find yourself feeling guilty, just tell yourself you are just releasing the stress hormones/toxins using the water, mucin, lipids, lysozyme, lactoferrin, lipocalin, lacritin, immunoglobulins, glucose, urea, sodium, and potassium from your tear ducts. Where is the shame in that really?

And for anyone wondering, yes I did actually google what tears were.

Life isn’t easy at the minute. In fact I feel learning to unicycle, while standing on my head, in a ring of fire would probably be easier than emotionally navigating been chronically ill and becoming disabled at 21 is. The constant battle between staying strong and allowing sadness to be present is one that I don’t think you can win. There is no right answer, someone will always believe you could handle your emotions better; some days that person is yourself.

Chronically ill or not, even if you just feel emotionally un hinged sometimes, I have compiled a short list of ways I think work to deal with your emotions.
• Allow yourself to be sad and to cry. (Nobody is happy 365 days a year)
• Remember the importance sleep and good nutrition has on our emotions. Try and eat well and get enough rest.
• Remember to breath. Sometimes you need to just concentrate on breathing to keep calm. (There is no shame in this)
• Write a letter or a text telling the world how terrible life is treating you, then tear it up or delete it.
• Watch a film or show you love (nothing too serious)
• If you feel out of control for more than a short period of time seek help personal or professional
• Hold on and remember no matter how difficult today is, it can only ever last 24hours. Tomorrow is always a new day.