In this article, I’m writing about a photo of me and my daughter. A simple photo it most definitely is, but one that when I saw it, hit me with both sadness and joy at exactly the same time. How can one photo do that I hear you ask?
I like to think the latter of those 2 emotions, joy, is stronger these days than the former. Since being diagnosed with M.E. I have experienced greater joy than ever before. I have begun to notice the smaller things in life that I had honestly never fully appreciated. A breeze through the window. My daughter’s arms round my neck as she gives me a “cuggle”. Flowers emerging from their buds.
However, sadness lingers behind all this, for many reasons.
The photo I’m talking about, the photo that has evoked both sadness and joy, is this:
A pretty simple photo you’d say, me in my hired electric wheelchair, E in her pushchair. Hubby is taking said picture while pushing E at the same time.
Hubby, E and I had decided to do something we hadn’t done in a very long time: walk (or in my case, wheel) to our local town centre for brunch as a family. A journey that takes half an hour or a mile and a half each way.
For months we haven’t been able to do this due to my mobility issues. No matter how many times I try, I can’t walk beyond 50 metres without having to sit down and rest. The muscles in my legs turn to lead, my whole body feels totally worn out. Unable to move another step. Words become difficult to articulate. A vestibular migraine inevitably kicks in with its dizziness (vertigo), eyesight problems and exhaustion.
I sit and rest for a few minutes, working up the strength to walk another 50 metres but this cycle can only happen so many times before my body is completely worn out. Funnily enough 50 metres doesn’t get you very far.
As I explained in my article “life on wheels”, I have a manual wheelchair which allows me to get out and about independently, allows me to avoid becoming housebound and live a decent quality of life.
However, one thing I’d never realised pre-M.E. or rather pre-wheelchair use, was that all pavements (and roads) have cambers, slight gradients allowing for drainage of rainwater. Makes complete sense for practical purposes but for those of us in wheelchairs, it’s a complete nightmare.
If you can’t imagine what I’m talking about, try wheeling something along the side of a hill. If you let go (obviously please don’t do this with a baby in pram), the wheeled object is going to naturally start rolling down the hill. Whether it’s a steep or gentle camber, the principle is the same.
When you are in a manual wheelchair, your front wheels will naturally veer down the “hill”. To avoid being run over you obviously need to get yourself back onto the main bit of the pavement, or up the camber. Or rather, go up hill. Not easy. I found the only way to counteract the basic physics of the camber is to manually wheel with just one arm. Unless you’re a regular at the weights section of the gym and/or in good physical health, this is virtually impossible after only a few minutes.
(If any wheelchair users know an easier way of counteracting the cambers do let me know!)
Outings for me, if I’m alone, in the past few months have been limited to:
- Supermarkets, because of their lovely smooth, camber free, surfaces
- Indoor shopping centres, same reason as above.
That’s it. Anywhere else has required parking as close as possible, to only have to walk a very short distance, or be pushed in the manual chair again, for reasons explained above.
When you’re on your own during the week, this limits one’s activities drastically.
Hence the hire of the electric wheelchair. Greater sense of independence. The ability to leave one’s front door without getting in the car. If that’s not reason enough to hire one, I don’t know what is.
So yes, back to the photo. A few days ago, my hired electric wheelchair arrived. A few trips round the block and a healthy dose of fresh air later, I was ready to do a big trip to the local town and back.
Doing it with hubby and E was truly a wonderful experience. The ability to wheel alongside my daughter and hold her hand was something I will cherish for a very long time. The ability to chat to my husband without having to turn around to see him was so lovely.
The photo fills me with such joy as it reminds me of how far I’ve come, metaphorically, in accepting the condition of M.E. despite the limits it places on me. It reminds me of the joy I have in my life with my hubby and E. It reminds me that no matter how bad things get, I know a cuddle with these 2 will make it all better. The photo reminds me of the joy I get from fresh air, being at one with nature and having the independence to get out and about.
But there’s the sadness as well. This picture which shows my electric wheelchair is the representation of everything I’ve lost as a person. My identity has fundamentally changed, and particularly for the man I married. No longer am I the person he married, but a chronically ill person with extra needs and requirements. The vow “in sickness and in health” is really being tested in this situation. On a personal level, my career has disappeared. The hobby I used to most enjoy, walking for miles at a time, no longer.
It’s hard, if not impossible, to know what the next few months, or even years will bring. I hope however that with the help of this blog, I will be able to process the varied emotions that come my way.
For my readers, thank you for joining me on this journey and I hope you enjoy the words to come.
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