But "You don't *Really* need a wheelchair, do you?"

Many wheelchair users use a wheelchair sometimes - and walk other times. This can be hard for people to get their head around - and it's not unusual for even people who see this kind of use to say things like "but you don't really *need* a wheelchair do you".

So I thought I'd share a few relevant moments from my day yesterday.

My usual wheelchair usage pattern is wheels when out and about (with brief moments of walking if safe), but feet as much as possible in the house, because walking where practical/possible helps with my long term condition management.

Yesterday my symptom levels were moderate-to-high (an improvement on the previous day's high symptom levels that necessitated doing little beyond lying still and listening to audiobooks.)

So, I'd been resting in bed and decided I needed the loo - part of me thought using a wheelchair would be wise, but I decided no - it's less than 5metres from my bed to the toilet, with 2 doorframes between to hold for support.

white woman with brown hair curled up in the yoga 'child pose'

I made it 2m. Just past my wheelchair, and pre-syncope hit - 'near-fainting' where #PoTS means my blood doesn't circulate well enough to my brain so I go all weak and flollopy.) I recognised the feeling as it escalates over a second or two, so was able to fold myself safely into kneeling on the floor. Half way between bed and toilet. Just waiting. Waiting for symptoms to pass. Initially with my head on the floor (like the 'child pose' in yoga), and then kneeling upright as seated function returned - waiting for enough function to return to let me go back and get my wheels.

Just after making it to my wheels (and then on wheels to the loo) the grocery shop delivery arrived. This time I listened to my inner sensible-ness and didn't even attempt to walk. Instead I whizzed easily to the door - and from my chair could quickly stack the shopping onto the side, ready to put away. All while chatting casually to the delivery driver.

From my wheels, I then stacked the groceries into piles on the worktop adjacent to the relevant cupboards: the fridge/freezer pile, the cooking ingredients pile, the drinks pile, and the snacks cupboard pile. Once it's all sorted, I go to each pile in turn, then get out of my chair, and stand while I put it away - often supported by leaning on the worktop for balance. 

Repeated bending and standing is a major trigger for #PoTS symptoms so trying to do this while standing would make me crumple even on a relatively good day - and attempting to talk whilst standing and unpacking....impossible. Just impossible. But from wheels, it was totally doable.

Essentially, without the wheels, I'd moved about 2m then needed 10 minutes rest before moving a further 1m. Once I got back in those wheels, despite the same level of symptoms,  I probably moved 10 times as far, while talking and completing practical household tasks - and still hadn't got close to the same level of symptoms!

My part time wheelchair use lets me do so much more - and do it safely.  And from those wheels my world is SO much bigger. So while I don't need my wheels every moment, yes, I absolutely need them to be able to get on with life.

2 box cartoon: 1: without wheels. Stickman sat on a chair looking sad, while a family pass the window outside. box 2 text: with wheels. Image: same stickman in a wheelchair, with the family walking outside. Text below: There is no need to pity me for needing wheels. They are my freedom.


Comments

  1. Thank you for this post. I have been thinking about getting a wheelchair for the days where I struggle to put one foot in front of the other. I have a couple of conditions including Fibromyalgia and hypermobility which affects my pelvis the most. Some days putting one foot in front of the other is agony, yet I resist getting a wheelchair for those days because I would be very embarrassed to be seen by my peers. I have a rollator (frame on wheels with a seat) but I'm equally embarrassed to go out with that for the same reasons.

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    Replies
    1. I can understand your reluctance, but I hope you have gone and got a decent chair by now. Mine changed my life. I can get around very short distances (a few feet) without it, but because of a spinal injury, my legs collapse without warning so I was constantly breaking bones, dislocating fingers etc. I am so much safer with the chair. I han't realized how stressed I was about the constant risk of injuring myself until I was able to move around safely - it allowed me to get back out and do the things I need to do. As much as I dislike being dependent on it, I would not be able to go out to dinner, see my kids singing at school concerts, socialize with other humans or a hundred other things that make life worth living, without the chair.

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