The only thing interesting that I’ve done this week – aside from the always weird and wonderful skype call with my Dad – is medical fitness. Though… I had a little accident towards the end of my session.
I noticed pressure around my knee and asked the physio if there was fluid there. He confirmed. Not weird, this happens often in the heat of summer. Usually I’d stop whatever I’m doing and put my leg up but physio told me it was ok to continue exercising. I learned later that by normal people, fluid reduces with exercuse. Me though.. I’m different.
On the leg curl machine, you stretch your legs out, resting them on a plate which you have to push down to curl your legs. It works but the machine is designed for adult-sized people. I’m only 4’11 and have to watch out that I don’t hyper extend my knees when the plate comes up. As my tiny legs aren’t quite long enough to stay in that position. That’s most difficult when getting off the machine as the plate’s resting position is ‘up’. Sure enough, my fluid filled knee hyper extended. My kneecap slid too far to the side as it usually does when that happens, making room for the fluid to slide into the knee socket. And my kneecap is now supposed to go where? Some 18 hours later after plenty of rest, the fluid was gone and my knee cap was happy again.
It was my last session. My medical insurance only covers so many. Although I could pay a monthly subscription to continue, these little ‘dangers’ have made me decide it’s not a good idea.
I’ve talked before about the difficulties I face during these sessions. Not only because I get no one on one supervision while using the equipment but also because my visual impairment means I can walk into moving equipment that someone else is using. This also almost happened in Tuesday’s session. My face narrowly missed a moving metal bar.
If you look carefully, you’ll notice my eyes uncontrollably bounce around inside my head. Making the visual impairment obvious. As is my physical limitations when I’m sitting in my wheelchair. But I mostly wear filter glasses and I can sometimes be seen walking short distances behind a rollator or with a walking cane. Then I’ve noticed people seem to understand less about the disabilities I struggle with.
That starts in my own house when I get visitors. I’m sometimes stubborn and choose to be a furniture tourist rather than using a walking aid. I do it with confidence and since I know my own house so well, I can serve drinks, hot or cold plus cookies to our visitors. All without any obvious struggles. This confuses people, even more so when I go to their house and get to know the layout there. If I’m told to help myself to drinks or food, I will pull open every cupboard and drawer until I find what I’m looking for and succes! I have a drink. It’s made people – even close friends who I thought knew me better, question how much I can really see. Sorry, I can’t help coming over as confident in what I do. I’ve spent a long time learning how to do that. So I won’t need to hold your hand while you guide me to your toilet. But I really am legally blind.
I guess this is why the staff and even other patients that I know outside of the sessions, think I look more capable than I am. Here I walk around with a rollator. So I don’t have to worry about falling or tripping. The rollator will usually hit something before I do. So it’s only things at head-height that concern me. So again, I walk with confidens. Constantly reminding the physio as I go to please not walk too far ahead. I know the Covid numbers are rising and you probably want to keep some distance to prevent sickness, but I can’t see you if you’re more than 30/40cm away. Then I can’t follow you. That’s how I almost faceplant into moving equipment.
Apparently, you can’t have a rollator and be visually impaired. I’ve learned this while walking short distances outside. People in a rush walk into me, expecting me to move out of their way. I literally had to put a sign on my rollator indicating my visual impairment and even then I sometimes get people coming at me because they don’t recognise the visually impaired logo. I’ve even started to wonder just how much people understand about rollators and why they’re used. Stereotypically, you see old people bent over while shuffling their feet behind it. But I’m not old. I may walk a bit crooked but not as crooked as some older people and I mostly don’t need to shuffle. Unless my knee has been kicked out of his house by fluid. So why do I use it?
The thing that sets off the biggest shock reaction from other people, is when I’m sitting in my wheelchair and I suddenly start to move my legs because I need to stand up and possibly even walk a few steps while pushing the chair. I remember once on a train to Liverpool; the assistance that was supposed to bring the ramp and help me get off didn’t arrive. A young lady next to me who wanted to help me, almost had a complete panic attack when I got out of my chair and put my backpack in it. I was going to ask her to help me get the chair out of the train, rather than asking her to roll heavy me in my wheelchair out of the train backwards. Unfortunately her panick attack meant I had to ask someone else. Military guys are so chill. Nothing seems to fase them. Was the lady worried for my safery? Or did she think she’d witnessed a miracle and I could suddenly walk?
One of my smaller – or at least to me it’s snaller – disabilities, my hearing loss, also seems to be hugely overlooked. Actually I spent years being considered a naughty, stubborn, ignorant child because no one even realised I have hearing loss. Even I started to believe I just needed to try harder and pay more attention. On paper a -35dB hearing loss doesn’t look like a huge problem and to others who only have that hearing loss and nothing else, it may not be. Though I don’t see it as a problem, I do notice it has quite an impact on me. I need my ears because I don’t have my eyes. As a child it really affected my ability to communicate. Joining in conversations was hard. No visual cues due to my sight loss and also missing audible cues due to my hearing loss made conversations a challenge. Listening one on one was also challenging. I’d miss half of every sentence and if my brain couldn’t fill in the missing words… ‘What did you say’? These challenges stretched into my adulthood though with therapy and a hearing aid I’ve gotten much better. Now I face the challenge of people thinking that the hearing aid fixes everything. No… it helps, a lot but doesn’t make everything perfect. A couple days ago I was listeng to a pigeon in my garden. Could hear him well in my right ear. The hearing aid in my left ear made him sound like white noise.
The point of these stories is to help people underatand that disability isn’t always visible and when it is, it isn’t always black and white. You can’t google it and expect the individual with the disability to match the criteria exactly as it’s written on google.
Just because I seem confident and on Twitter – usually very positive, doesn’t mean I’m not struggling. Sometimes mentally. As simple as coping with stimulation overload in a noisy place, to being utterly grumpy because I’m in pain and could use a break from it. Sometimes physically, because yesterday my left leg was sore and I had to walk with my cane on my right side and today, my right knee is filled with fluid, so the cane moved to the left. Or because someone tripped over my rollator for the tenth time as they didn’t see or recognise the visually impaired logo and every time that happens, my pain level increases and I get more grumpy.
I’m often struggling with something. Mostly a small thing and it’s taken many years to learn how to manage it so that I don’t feel ashamed of my own body or so that I don’t camp daily with depression. The confidence isn’t a cover up. I’m not scared of showing my weaknesses. The confidence is the result of much hard work so that I can function in a society that usually doesn’t adapt to you and your needs.
This doesn’t mean I don’t feel or get frustrated. It means I’ve learned to stop compairing myself to people with other disabilities or issues totally unrelated to disability. I don’t consider my situation better or worse than that of someone else. We all have a right to find our situation irritating or upsetting sometimes. Those feelings should be validated no matter how big or small the issue. Because once you feel validated, you will start to find ways of managing the situation. You may not be able to change it, but you’ll find ways to cope. They may be different ways compaired to the ideas or suggestions of others but that’s ok. The most important thing is that whatever you chose to do works for you.
Talking about your feelings and experiences not only helps those around you understand you better, it will help you and those in similar situations around you realise you’re not alone. It’s also the first step in finding that confidrnce you need to be able to live as comfortably as your situation allows.
This is why I talk so openly about who i am, what I have and what I go through. Also I do it so that my Twitter friends can continue to enjoy my positive, smiley attitude. It works both ways though. If they enjoy, I’m happy!
CRS Life 