Well……the wheelchair was a flop! Not literally, that would have been very bad for my body, but it has not worked out as intended.
We purchased a wheelchair two weeks ago after a year of me struggling to keep up with my toddler at weekends. Half a day walking and I’m shattered, with all of my lower extremities screaming in unison “why are you doing this to us!”.
Initially I thought I had to accept this limitation, this restriction on my freedom, but as more plans were made for family weekends of fun , I quickly realised I would need more than stubborn willpower and painkillers to make it through a whole weekend. My body, even at the age of 36, just can’t cope with being upright and moving that long, no matter how many rest breaks I take.
So we bought the wheelchair. We used it on the Sunday around a gorgeous farm centre half an hour away from our home. The sun was shining, I had been up and walking all morning and now I was ready to try out my new mobility aid.
It took a bit of getting used to, there was a certain amount of screaming going down small hills, but I felt really good. Soon I was cruising around the farm next to my husband and toddler and I felt sweaty but pretty damn good.
When we got home I had the energy to play with my little boy on the living room floor and even managed to do some cleaning up at home. Sunday night was one of the best evenings after a day out that I have had in a long long time and I felt so relieved about my decision to get a wheelchair, until we got to Monday.
I woke up Monday morning with every joint in my body feeling like it was burning and crumbling simultaneously. I haven’t felt like that since I had the flu last year. It was horrible. Everything from my toes to my fingers and my neck was in agony, movement was agony, even speech was an issue - slowed and slurred (which is perfectly normally for me on a high pain day).
I saw my Osteopath on the Tuesday and we had a very honest and frank conversation about the wheelchair, my pain and what my options were. After a thorough check over she concluded my lower half (which is normally in tatters) was excellent and barely needed any focus. My top half however (neck, shoulders, elbows, hands, fingers etc.) was in a dreadful state. I think I looked like a porcupine at one point in our session as she placed her acupuncture needles.
I now realise that my body is wildly unpredictable. One day my elbows may be flaring, the next it’s my ankle and another day my jaw. It’s like a terrible daily lucky dip where you don’t know what’s going to break down next.
Using the wheelchair part time would not allow me to build up the muscle strength and memory for my body to get used to it. Using it all the time would result in muscle wastage which is also not great, so we returned the wheelchair.
I had mixed feelings handing it back. The uncomfortable feeling of those restrictions on me again and relief that I (hopefully) wasn’t likely to have another full body flare up any time soon.
I’m now exploring my options for powerchairs but it’s been a difficult mental journey doing that. Several times a day I have found myself in a disability imposter syndrome spiral, mentally saying to myself “your not disabled enough for this”, “you should just push through”, “what will people think of you” etc.
My husband is a saint and has pulled me out of that spiral multiple times over the last week. He helped me realise that what I consider “normal” is in fact not “normal” to the majority of able bodied individuals.
For example, when I stand, my knees hyperextend backwards. That’s normal for me because it’s what my body has always done but for him it’s not normal because your joints should not be able to stretch that far. He is in essence, my yard stick, for figuring out what “normal” should look like and feeling exhausted and in so much pain after half a day walking is not normal, especially when it’s been happening for a long time.
I’m still researching powerchairs but I’m trying to be kinder and gentler with myself now. It doesn’t stop the spirals from happening completely but I’m trying to remind myself that my body isn’t “normal” and if I need a little help getting from A to B then that’s ok.