Throwback to the day I got my wheelchair

Using a wheelchair is liberating BLOG

A year ago today I got my wheelchair! I was almost completely bedridden at the time. Walking just a few steps every hour or two just to keep circulation and muscles alive was a chore.

As a family we were house-sitting in the Lake District at the time. It was a long term arrangement, so was kind of our home away from home, but I had been confined to an upstairs bedroom and was unable to get out to see the countryside around me.

I would enjoy, for a few minutes, watching the birds at the feeders outside my window and the gorgeous orchids that adorned every windowsill. Although it was a freezing cold winter, I longed to go out and explore.

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My first wheelchair
The first time I sat in my wheelchair

I have heard many people comment about how they hate seeing the wheelchair in the house because it's a reminder of their disability or they speak of being confined to a wheelchair.

I don't need the wheelchair to remind me of my disability, it is a constant companion that I cannot ignore because if I happen to forget and get up too fast or pick something up or try to help tidy something or prepare a drink for myself, my body lets me know loud and clear that I'm not capable of doing "healthy person activities". The wheelchair doesn't add to that at all.

I never saw my wheelchair as a negative thing. In my eyes a wheelchair isn't confinement, it's freedom. It allows me to move more and go out more than I could without it. It's a liberator, not a restrictor.

I never saw my wheelchair as a negative thing. In my eyes a wheelchair isn't confinement, it's freedom.

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Here's what I wrote on the day:

I got my first wheels!! Messy hair, don't care. Tired and sore, but super happy! Perhaps I won't have to wait months between outings if I can save energy on walking. Still walk hourly in the room and will only use the wheels when I go out, to lessen the impact of outings and be able to enjoy them more. Praise God! Love it!

My Choice of Wheelchair

You might have noticed that my wheelchair doesn't have the large back wheels for self-propelling. That is because I have had some experience of self-propelled wheelchairs when on holiday using rentals and discovered that I am very naughty and lack patience for them. Let me explain...

Having ME/CFS means that self-propelling would require much exertion and energy that I do not have. It causes me a lot of pain and fatigue. The problem is that I am not very good at sitting still and waiting if somebody parks me in an isle while we are out shopping.

When I'm out on those rare occasions, I want to explore and see everything - I will self-propel if I have the option. So we bought a chair without that option - for my own good. 

Me at My Worst

During that time at the house-sitting I was quite weak. At my worst really.

I would colour a little and crochet a little and that's about it. Some days I'd eat one meal with my family, on the sofa, the rest of the time I'd be in my room because being around other people was too much for me.

Crochet first twiddle muff during flare 2017 SQ

They'd come into my room, one at a time,  in the mornings to give me a hug and somebody would carry a tray of food up to me each mealtime. They were all so close, yet I was isolated much of the time.

My First Outing in My New Wheelchair

First outing in my wheelchair

We did go out once during the months we stayed there, it was a lovely few hours at the lakes. My first outing in my new chair.

They carried me downstairs in it so I wouldn't have to exert more than the absolute necessary.

As usual, even just the excitement of an outing costs me, so I paid for it, but sometimes the memories are worth the pain that comes later...

One year on and I'm managing hundreds of steps a day, still housebound, but often I have managed over 1000 steps in a day.

Lately though, for one reason or another, as is common in ME/CFS, I have been less active due to flaring symptoms and I've been struggling to make 800 steps a day regularly.

My Goal for The Next Few Months

Today I started something new though. I walked out to the front door of our building!

It's only about 16 steps from my bed, no stairs, so practically like walking to our kitchen, but the excitement involved in going out there and seeing the outside has an incredible effect on me!

I can walk to the kitchen most times without getting the shakes, but let me dare step out of our flat and I'm shaking all over. Am I getting adrenaline rushes from walking to the mailbox?! It's a wild party over here at my house lol...

So I have decided I need to normalise the mailbox walk. I need to do it regularly so my body doesn't freak out like a puppy going out for walkies!

I popped my head out the front door after checking for mail, almost blew away in the wind, but it was wonderfully refreshing!

These are some of my new goals: the first is to go check for mail daily - normalise the mail walk and then the other is leaving the house, with my wheels, once a month.

I'd like to not wait 5 months before going out again. I hope my body will play along.

After about three months, if all is well, I will try once a fortnight and see how that goes.

I'm very excited for warmer weather and getting out in the countryside or even the seaside.

Here's to a marvellous 2018 - full of little adventures outdoors!

Using a wheelchair: is it confining or liberating?

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  • Sarah Maher says:

    I get this totally. I’ve often thought that I could do with a wheelchair some of the time. What I do have is a little fully electric bike, it’s not a mobility scooter, it was designed more for general pedestrian use, but for me it’s the difference between leaving the house or not. It cuts out so much of the walking which can help a lot. Of course there are times when I can’t use it, and those are the days I feel like I could do with a chair. But the freedom it affords me is so precious. Plus, when I’m up to it and no one’s around, it can go pretty damn fast! But I don’t do that often. 🙂

  • Thanks for sharing such an intimate post. As a wheelchair provider, I learned a lot and gained some insight as a result. Sometime in my line of work, we always try to get the patient the best equipment we can. the big fancy wheelchair with all the bells and whistles. Sometimes, though, we forget that the patient may just want something more simple.

    • Chronically Hopeful says:

      Thanks for visiting, Scott.
      I’m glad the article was helpful. I know what you mean. I worked with disabled children before I became disabled myself, so I understand wanting to offer the best equipment with the most options, but my personal experience has been opposite.

      I sometimes wonder about a mobility scooter or motorised wheelchair, but I’m not sure my body can handle that either. I’d have to test one for a while before investing in such an upgrade!

  • Candice Mes says:

    I have on occasion also needed to use a wheel chair and what supprised me was the feeling and fear of being out od control when someone pushed me. Something to adjust to 😀

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