Changes

 I never knew I was stubborn. But we all have pride and for a long time mine got the better of me. My pride came before my physical and mental health, probably for too long. I think maybe I've been lying to myself and to others because accepting that I need help isn't easy, coming to terms with change has been challenging. 

This entry is not a 'poor me' post, I don't need your pity because I already have my own. I don't want anyone to tell me I'm inspirational if the reason is just simply because I'm living my life despite my disability. 

This post is personal yet I want to share it because I'm not the only going through this. I'm not the only one who's gone through the heartbreak of slowly (sometimes suddenly) losing the ability to do things. And I'm definitely not the first to put other's opinions before my own. But I am one in the 1.3 billion of people with a disability (worldwide). How many of them have a progressive illness (by that I mean it gets worse over time- DWP take notes*) I do not know, but I think it's a fair assumption that someone will find this relatable - and maybe even helpful?- .

I don't really know how or where to start. Maybe by painting a picture of what it's like to lose something most of us take for granted.

Side note: it's weird because I get told that this is my health but I don't feel unhealthy. I'm in pretty good health actually, I'm conscious of what I eat - I never said I eat well all the time- , I exercise, I'm hygienic and I only really go to the hospital or doctors for routine check ups.

It was in uni when I started using a walking stick, the thought of transitioning from using nothing to a walking aid literally kept me up at night. The thought of what others may think mattered so much to me that I put off using one for ages. The thought that I could no longer be the 'fun' friend was terrifying and overwhelming. Although I lost a few friends since my diagnosis it turned out not much changed. It turned out that my fears were all for no reason and actually people were MORE supportive because they could see my disability. I was still the 'fun' friend and maybe even a better one at that, better in a way that I was letting my friends in on something that frankly I was slightly ashamed of.

But that was, 5 years ago. A lot has changed since then, for better but also for worse. No one needs my life story so if you'd really like to know then please feel free to reach out. 

It's taken a while for me to get to the point, this is a personality trait but also I haven't been able to write this down without convulsively sobbing (really recommend releasing pent up trauma this way). For the past year my mobility has significantly declined, my balance is almost comical and my coordination is pretty non existent. I stumble backwards when I want to go forwards and I keep forgetting that in order to walk I actually need to lift my feet up rather than shuffle around like a penguin.

On my worse days my vision is also impaired, imagine looking into a spoon, my vision is sort of the same as that. I can't think properly or sometimes even struggle with getting my words out (not sure if anyone notices this one, I've had ages to practise masking this). All in all the brain fog is very real.

But as of late most days are my worse days, most days I find myself ugly crying, most days are miserable.  So, there's really only one solution to help ease the pain of living this way, I need to put my pride, worries and everything else aside and get a wheelchair. That wasn't actually so hard, didn't shed a tear.

I still can't really wrap my head around it. I'm 25, this isn't meant to be happening. My hands aren't meant to start dropping things yet. A flight of stairs shouldn't feel like Everest. I shouldn't be getting joint pain.

As much as I'm worried I can't help but feel relieved because after this there are no more life changing decisions to make. As much as the thought of 'how will I leave my front door which has a very large step?' plays on my mind I can't help but think of those who I do know who've said their wheelchair has given them so much freedom, those who are enjoying their lives much more than me because of their wheelchair.

I have used a wheelchair before, I broke my foot once. But I felt more confident that time. My leg was in a cast, a common thing that could happen to anyone. Looking back I loved those weeks spent, rid of any anxiety or apprehension. I had a very relatable excuse for why I wasn't walking. I didn't feel ashamed and haunted by stigma and taboo.

I think that'll be the hardest thing. The societal barriers. Overcome the physical ones once and I know it's do able. The often less tangible socially constructed ones are what I fear. I've witnessed bus drivers huff and puff at a wheelchair user taking a little longer to manoeuvre themselfs off a tightly packed bus. I've seen shop assistants roll their eyes as they're asked to reach something high up.

So, if you can relate I'd love nothing more than some advice/encouragement or even to know someone else who is going through this because it can get pretty lonely living in a world where 84% of people are able bodied.

Also, if any therapists who have dealt within want to reach out please do as I find myself making up problems for other therapists who aren't all familiar/comfortable with this topic.

*earlier I mentioned the DWP, it's an inside joke.