Life on Wheels

Wheelchair with ME CFS

I don’t know about you, but I had always viewed the use of a wheelchair solely for those with spinal cord injury / paralysis or the elderly. I certainly hadn’t thought it was just as acceptable for those with invisible illness such as chronic fatigue syndrome (ME CFS). 

For months, prior to my diagnosis, I had been getting worse. My ability to get through a day of very basic activity was reducing and I couldn’t explain why. I was going from being able to walk for at least an hour to barely walking 200 metres. Yes, I had had repeat infections, and was on a whole variety of medication, but this did not explain the lack of mobility. 

The diagnosis I received of chronic fatigue had been a lightbulb moment. Granted there was a period of anger, depression, disbelief, all pretty standard in coming to terms with a chronic illness. (A post on the stages of coming to terms with chronic illness coming soon.) But once those feelings had been processed, and I had actually given myself permission to feel those things, I could start to move forward. Literally and metaphorically. 

When your mobility is getting worse you either have 2 options. Give in to it and become house- and likely bed-bound or take the bull by the horns and do something about it. The latter is what I chose to do. 

Wheelchair with ME CFS
Life on wheels with ME CFS

I bought my first wheelchair. People said to me, why have you gone from using a walking stick to being in a wheelchair in the space of a month? I had a lot of questions to answer, both from others and my own mind. It wasn’t that my mobility had so starkly changed in that time, it’s that it had been changing very gradually for a number of months and if I didn’t do something about it, it would definitely get worse. 

Chronic fatigue syndrome (ME CFS) is characterised by its post exertional malaise, the body’s inability to recover from the slightest amount of exertion. Since being diagnosed with ME CFS I haven’t had nearly as frequent infections as I did prior. This tells me one thing, that I was seriously overdoing it before. I needed to find a way of conserving energy, and quickly, to avoid a further deterioration. 

Therefore, I introduce you to my wheels… 

Karma Ergo 115
Karma Ergo 115
Karma Ergo 115

Not the Rolls Royce Phantom of the wheelchair world, but neither is it the Ford Fiesta (dodgy analogy I think?). It’s a middle of the range, not too heavy, not quite light enough but it’ll do, wheelchair. And it’s got a pink seat! 

For those of you interested in the specifics, it’s a “Karma Ergo S115”. I try not to think too much about the fact that the word “karma” is stamped all over it. Feels like my wheelchair is attacking me personally! 

My wheelchair allows me to go to the shops and not have to sit in the aisles on the floor from the exhaustion. It allows me to visit places I may have avoided before. Granted I’m not yet strong enough to get myself up long hills (turns out self-propelling yourself up a hill is seriously hard work) but I’m learning about the places that are wheelchair friendly and the places that most definitely aren’t. I’m no longer housebound, and I’m actually achieving some stability (ish) where I can plan a bit more carefully from day to day and generally, know which days will be good and which will be harder. My wheelchair allows me to obviously rest whenever I need to. Just stop propelling! 

And do you know what’s really fun? And I’m actually being serious here… toddler daughter sitting on my lap! She absolutely loves it! Granted it adds quite an extra weight to have to propel around but it most definitely solves the how-am-I-going-to-attach-the-pram-to-this, or rather how on earth do I get around the shops with her and my wheelchair, dilemma. 

Wheelchair with ME CFS
Life on wheels with ME CFS

So, last but not least, are you a company owner yourself and want to know whether your location is wheelchair accessible? Would you appreciate the input from a wheelchair user and the chance to be mentioned on this blog? Contact me here

mummying and me

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