I haven’t needed to use my wheelchair since November, (well apart from one trip to Homebase in December to choose a Christmas tree), but that doesn’t count because it wasn’t from the ME/CFS symptoms, it was more a case of a physical boom and bust. I had got a little over excited after a relapse and really wanted to get to a supermarket nearby, which meant I extended a graded walk up to 75% one day. Therefore I busted my knees up for a week. The cartiledge and tendons obviously still need more conditioning, you live and learn. Re-conditioning of the muscles and internal structures, when you’ve been seriously out of action for a year and a half just takes a little time but I’m getting there now.
It’s such a great feeling to progress to walking to and from places again, of course these are very short distances at the moment, of around 200 metres or 500 metres and longer paced walks with breaks. I just couldn’t stand being pushed around any longer and due to working my way back up with physio, I was ready to release it to the shed! My husband always said that I had to push him around in it for fun when I was well, so he may get a turn soon.
My journey with the wheelchair has taught me so much. I didn’t want it at all in the beginning, but of course if I got to the car, which was down steps from our apartment and up more steps to street level, then I was still unable to walk around a shop or out in nature. There were times my husband had to carry me in a fireman’s lift to the car as I couldn’t even get up the steps. I’m lucky he is a strong plumber man, used to carrying heavy boilers up flights of stairs.
My husband just came home with a second hand wheelchair one day. At the time we didn’t even know if it was worth the £20 paid out, as we assumed I would only need to use it a few times. I was in serious denial of how bad things were in the beginning, and I think this can be a normal psychological protection mechanism, although facing reality was the only way I began to accept enough to start to heal. Little did we know that I would be needing it for eight months!
I felt so crappy the first time I used it, I felt embarrassed and silly because I worried no one would understand why I was in it. I felt weird not being in control and having someone push me, which made me feel childlike. I was really concerned we’d bump into someone we knew and I didn’t want more stress on having to talk/explain my situation. Hence no one ever saw me in the wheelchair apart from my husband and my mother on one occasion, and I think she found the experience hard enough to deal with. I only realise it now, but My husband and I actually hid pretty much the whole experience from our family and friends because it’s been so hard to explain, among other reasons, anyway relationship dynamics if another post!
So back to my new wheels, it was actually quite a relief the first time we used it, I was so ill I just had to give into it. Finally after a year, my husband could take me into some shops and I could go with him, rather than remain in the car. I had a lot of mixed feelings. I didn’t want to give in to something like a wheelchair because I worried it could mean I wouldn’t get better.
I very much had an attitude which was similar to my father’s, which was that you have to battle on, don’t give up or give in. This helped him massively get through having Ankylosing Spondylitis and not allowing it to stop him from living the life he wanted, so much so that he exercises more than a lot of my friends, and he’s in his 70’s. I respected him for that, but I was also trying to allow something else to develop in me, which was a nurturing and supportive space for my body. I rationalised to myself and also to him on the phone, that I wasn’t giving in, I was just giving myself help to do some things that could lift my spirits. Back then my spirits were very, very low. I had little information about ME/CFS, my husband and I were quite starkly alone dealing with this as I mentioned, and I was so unbelievably restricted.
We soon got into a system with the wheelchair and I built up my confidence. It was relatively easy for my husband to fold into the boot and it meant we could go to parks and around shopping centres, which is something I did after a couple of months, as it’s quite full on with all the people and noise. Going around trying to do women’s clothes shopping with a man pushing you in a wheelchair is very stressful for both parties, I soon learned! Did you know also, how difficult it is to get wheelchairs in and around a lot of shops and why don’t they put chairs in more shops for people who can’t stay upright for long, to take a bloody break!
It was an eye opener for both of us to understand what it’s like for people who use a wheelchair regularly. It’s also odd how people’s reactions are. Often people were quite kind and helpful, holding a door open, however there were lots of occasions, especially in a supermarket, where people were down right disrespectful and rude, still rushing about trying to get their needs met and pushing us out of the way. I’m sure that my husband and I could have written some comedy sketches about our time using the wheels.
Often I was so pleased to get out of the house, or the general vicinity of my garden, and the spot on the seafront, that I just wanted to control the wheels myself. However, in the case of someone using the chair because of a particular disability, for example paralysis of the spinal column or legs, they may have no problem with arm movement and may indeed become very strong in the upper body, in my case, or that more common of ME/CFS, the exhaustion is so considerable that we can’t use our arms to take control. Furthermore if we did it would contribute even more to the difficulties and worsen the pain. The point for us, is that we are getting a chance to not aggrevate the state of things, in fact, just getting out of the house, into the car and into the wheelchair is a real mission in itself and one that could cause a setback.
My husband is a hundred miles of hour kind of person and so he used to whizz me around in the seat so quickly that just telling him to keep slowing down was exhausting. It’s hard to give control over to someone else when you are so fragile, especially to stimulation. I so desperately wanted to stay connected to things. I remember one time, to cheer me up, he took me to the fish shop, to look at all the marine fish and I was trying to be in my own world, quietly looking at the fish, but before I knew it, I was being pushed to the next tank, and was being constantly engulfed in encouraging loud words from him in my ear, being talked at like I was a small, sick child. I knew he was trying so hard to help, and he probably saw me as a helpless child at that time, but I / we that are ill, can sometimes sound so ungrateful, yet often we are just feeling desperate for some positive, independent us time, when we get a chance. Not having that control over your own body and environment was very difficult.
I am glad that I got an opportunity to experience it though, because it forced me to develop even more of a supportive internal dialogue with myself and realise how much I took my previous life experience for granted. Ultimately I had to create a place of independence inside of myself and feel what it’s like for someone else to have take control of things for me for a while.
To accept help and let go of control was a massive learning curve, and my outings in the trusty wheelchair really helped me to learn about going with the flow and letting go for a while. Looking back it’s funny how much I resisted. Now I would probably enjoy being pushed in the pushchair like my husband would say to pull my leg, but that is the irony of life, what you resist persists and what you let go, flows!