When I was almost totally bedridden with M.E. going out of the house was torture. Just being upright made me feel like I was dying and, once outside, the light, sounds and smells of the outside world were an actual assault on my very poorly brain. The energy needed simply to get dressed had almost seen me off, leaving me with no reserves, so when I absolutely had to leave the house I used a wheelchair.
The experience had both positives and negatives. Positive in the fact that, without the wheelchair, I was completely housebound but negative in the fact that I had no independence and was at the mercy of whoever was pushing me. They often went at a pace I wasn’t comfortable with and stopped to chat to people they knew but I didn’t. On the very rare occasions I went to the shops I couldn’t see any item on a shelf higher than waist height (a particular problem in supermarkets) and found being in a wheelchair a very isolating experience as it’s almost impossible to chat to whoever you’re with. The reaction of the public was to be expected I guess. Many people talked to my Carer, treating me like I was invisible, and the rest talked to me like I was mentally deficient. Even my Mum, who was usually the pusher, at times treated me like a child. I remember being in B&Q once and we were struggling to find an item so she said to me in a very loud voice “ask the nice gentleman over there Jak” like I was five and being encouraged to speak to strangers. I could have throttled her.
My GP, otherwise supportive, didn’t want me using a wheelchair. I was capable of walking so in her eyes I should just crack on and do it. She, of course, had no idea the effects walking had on me or the hours, sometimes days if not weeks, afterwards where I lay on my bed feeling like I’d had 5 rounds of chemotherapy – puking, shaking, unable to think or speak and so weak I could barely breathe or open my eyelids. She warned me that by using a wheelchair to get around I’d “go off my legs entirely”, not understanding that I was virtually “off my legs entirely” to start with hence the need for the mobility aid! She wasn’t the one who had to live with my disease, or the consequences of walking around, I was so I promptly ignored her.
I have to admit using a wheelchair was a necessary evil but not an experience I want to repeat any time soon, so when I started to see some improvement in my M.E. I bought myself a small mobility scooter. Now I could go out on my own, whenever I liked, at a pace I liked and to wherever I liked and it was brilliant. It was obvious to the public I was mentally competent so they talked to me like a regular grown up and I found that other scooter users waved or stopped for a chat, albeit most of them were over 70. The only negative was when I got off my scooter, for example if a shop wasn’t scooter accessible or if I needed to use the public toilets. If you use mobility aids many people expect you to be paralysed or totally unable to walk, so I did get some peculiar looks and snidey comments about “miraculous recoveries” to which I’d raise an eyebrow and ask politely “is there a problem?” Once confronted most people backed down and scuttled off.
My cousin once asked me if I was embarrassed at having to use a scooter, a question which surprised me. For a start, without the scooter I couldn’t leave the house so to me it was absolutely fabulous. And for another, what was it I was supposed to be ashamed about, exactly? I hadn’t made myself sick. Hadn’t robbed anyone. Wasn’t a druggie or a dropout. Hadn’t committed murder. My body was poorly and didn’t function as well as it might – I’m still flummoxed as to where the shame is in that. My view is that I’m lucky enough to live in a country where mobility aids are, for those who can afford them, accessible and I’m grateful for the fact. I’m sure there are a lot of disabled people living in Africa who would kill to use a mobility scooter to get around.
Now my M.E. is at a moderate, rather than severe, level I do walk whenever I feel well enough. I kind’ve understand where my GP was coming from and agree that, if it doesn’t make your condition worse, you should try to walk if you can. It keeps muscles strong, heart and lungs healthy and helps control weight, alongside all the emotional and psychological benefits. I am so grateful there are now days I can walk for 10 or 15 minutes down by the river with Bertie and I love and appreciate every second. However, there are also days I am too exhausted, in too much pain from my Ehlers-Danlos, or simply feel too ill to walk, so still regularly use my mobility scooter and am grateful to do so.
Having EDS means I live with chronic pain and frequent injuries. My back and hips are particularly badly affected and I have issues with my sacroiliac (SI) joint. When I stand and walk the pressure on my SI joint, lower back and hips can be incredibly painful and there are times I need to take the pressure off the lower half of my body by using crutches. I fucking hate my crutches. The NHS ones were useless, heavy and hurt my arms, wrists, elbows and shoulders, so I bought some Smart Crutches which, if you have to use crutches, are as good as it gets. But they’re still a pain in the arse. Trying to manoeuvre steps and stairs on crutches is a mare and, if you use them around the house, they just get in the goddamn way. What the hell do you do with your crutches when you’re making a brew, for example, or a meal. Doing the washing up or having a pee? They just constantly get in the road and, having leaned them against the kitchen counter while I put the kettle on, inevitably end up falling on the floor. I should probably use my crutches more than I do but unless I’m absolutely desperate I can’t stand the hassle. If I had the money, and my house was suitable (which it’s not) I’d much rather use an electric wheelchair on my bad days than crutches, but at the mo it’s just not an option.
I put off using mobility aids for years because of a lack of knowledge about my diseases, how to manage pain and effectively conserve energy. I thought using disability equipment was somehow giving in when in reality I was just punishing myself unnecessarily. These days I’m much better at knowing my energy limitations, recognizing if I’m having a particularly bad day or am injured, and altering my mobility needs to suit. I’m grateful I have access to aids which help my daily life and would actually use more, not less, if I could afford to.