I was born in 1989. Rightly or wrongly, most of my generation grew up with a simple link between wheelchairs and disability. A person in a wheelchair was disabled and a disabled person was almost always in a wheelchair. Sometimes they had crutches or other visible aides, at the very least they walked with a substantial limp. Obviously with greater education and access to information, perceptions of disability have thankfully changed over the past 27 years. I consider myself to be reasonably knowledgeable and non-judgemental of disabled and chronically ill people. I have always had friends with various chronic illness, worked as a carer for the elderly and those with dementia and loved working in the special care department of the Dental School. It’s not something I shy away from, but I really struggle to call myself disabled.
Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus, disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.
— World Health Organization, Disabilities
On the most basic level: The function of my joints is greatly impaired. For example, I cannot wash my own hair or prepare a meal at times. I can’t join in many activities that I once did and often find myself skipping events and get-togethers due to my physical inability to take part, sometimes this down to pain, but sometimes my legs just won’t carry me.
In the last couple of weeks, I’ve noticed that the bad times are getting really bad. I’ve been so excited to see The BFG at the cinema but we had to postpone this again today due to my inability to shower, never mind worrying about going outside. Even if I got to the cinema, I couldn’t sit still for two hours. Even if I sat for an hour, I’d need J to help me up to get to the toilet an hour into the movie. It would be rubbish. The bad times seem to be a culmination of hormonal fluctuations, joint instability, generalised pain that we like to call “EDS flu”, joint pains and sprains, SI joint pain, nerve pain and numbness, palpitations, acid reflux, fatigue and IBS symptoms. It’s hard to imagine how it feels without ever having experienced the medical shit storm that is Ehlers-Danlos Syndrome on a bad day. It’s miserable.
On Friday afternoon my sister picked up my prescriptions and my fit note (medical cert) from my GP. She was in a hurry to get down to the Edinburgh Fringe with her man but made time to help me out before she left. I rely pretty heavily on my sister and my partner because for around 2 weeks a month, leaving the house alone is a struggle and borders on plain dangerous at times. I still need food, supplies and human contact though, and thankfully those two provide it. You might wonder what I’m whinging about, but I’m getting to it. My GP forgot to sign my fit note. Absolutely fan-fucking-tastic. I called the medical practice and was told to “pop in” with it on Monday, or maybe Tuesday because Dr Can’tWriteHerOwnFuckingName isn’t in again until Tuesday. Monday, Tuesday, Monday, Tuesday… Look, love, I CAN’T JUST “POP” ANYWHERE, that’s why I am signed off work, you stupid woman. Even if there was a level 3000 freakin’ Mewtwo (Pokémon Go) at the end of my street, I still would not be “popping” out to catch it, I’d be sending J out… Knowing that tomorrow I need to take my fit note round to my GP, go to physio, get home from physio and not just sit in a chair and piss myself feels impossible. It feels so beyond my limit that J is going to work from home in the morning, drive me to the hospital, walk me down to the consultation room, come back at the end of the appointment, drive me home, make me lunch an go into work for the afternoon and work late to make up the hours. Is he my carer? It feels a lot like it…
I’m having more and more time like this, especially with numbness in my feet, and am feeling that a powered wheelchair or mobility scooter may be the only way that I can gain back some independence, at least in the short term. Except in the short term, or even long term, I don’t have thousands of pounds and that seems to be the cost of freedom, or at least a basic mobility scooter.
I don’t know what to do. I feel overwhelmed. I am going mad being cooped up in the flat in pain. I’d be okay with relying on others if I had a broken leg and there was an end in sight but things are still getting worse and day by day I feel a bit like the madness hamsters are stealing bits of my brain while I sleep. I don’t want to climb Kilimanjaro, I want to be able to buy my own tampons and catch my own Pokémon.
It feels a lot like I’m disabled. It’s frustrating and lonely.