When I was first struck down with the M.E & pushed myself to keep working, I ended up pretty much housebound for a year. Once I started feeling able to get out again I soon realised that my legs were no longer my friends.  They didn't work like they should be doing & when I tried to walk even the smallest of distances I would end up feeling like I would collapse with a combination of pain & fatigue.

If I went out it not only wiped me out but I suffered badly with pain for several days afterwards.   So I was stuck in a bit of limbo knowing what to do.  I began thinking (but kept it to myself) about maybe needing a wheelchair.  Who wants to have to use a wheelchair & accept they cannot walk much anymore? I eventually plucked up the courage to say it out loud & I can't say it was very well received at first by the other half. But I suppose it's such a big thing to accept & not easy for others either.

I can't remember exactly the first time I used one, it may have been when we went away & I borrowed one. It was the only way I could get around but I felt so self conscious. However I would still probably be stuck in the house now had I not done it! The alternative to using a wheelchair was to not go out!  And when you have been stuck in the house for a long time, it sends you a bit crazy & cabin fever kicks in.  So to be able to get out, even if briefly, it makes a big difference to how you feel mentally.

I ended up using wheelchairs or mobility scooters (as I've mentioned previously!) when I went out shopping, as you can hire them at shopping centres etc.  Then after a while I went to see my doctor about it & got referred for one.  So not long after, I had my own brand-spanking-new red wheelchair to give me a new lease of life!

I felt very awkward when I first used it & I pretty much had to have a driver (!) with me too as my arms were no longer my friends either.  I clearly remember the first time I went on holiday with it & was at the airport.  People kept gawping at me.  Yes I know people look when things are a bit different. Human nature I guess. I was still adjusting to having to use it & I remember a girl, who can't have been much older than about 12, staring & staring & staring at me. Instead of ignoring it I could feel myself getting more & more wound up & I just snapped. I practically shouted at her & asked what she was staring at! The poor girl!!

People also treat you differently when you are in a wheelchair.  You get the pity looks. A lot. You get people who rudely walk straight in front of you & pretend they haven't seen you. When they clearly have but are just rude. Or ignorant. Or both. You get people who don't even acknowledge you & who talk to whoever is with you rather than actually making eye contact with you. Erm yes I do have a brain. And ears. And a mouth.  Oh and an actual personality of my own!

I accepted a long time ago that I need to use a chair but think I have only fairly recently really felt that there is no need to feel ashamed or embarrassed about it. Or when I see someone I know & I am in it, there is no need to try to hide! If people have an issue with it then it is their problem not mine.

I recently went for a reassessment for a new wheelchair & was told my other one, which I have had for 8 years, was far too big for me & I looked lost in it.  Perhaps another reason I felt self conscious, as it was so damn bulky!  The good news was that I would be getting a new one.
One that actually fits properly & that is a lot lighter. And that has back support in.  My daughter will no longer be able to sit on it with me as there is no room, but she is 5 now so really shouldn't be anyway!! I asked if I could add glitter to it & was met with a very resounding "no". So I had to pretend I had been joking.. which anyone who knows me will know I wasn't!

I had it delivered a few days ago & to my absolute delight the lovely man told me that I can in fact decorate it any way I want, providing I don't intefere with the mechanics.  So as we speak I have new zebra print wheel trims & I am waiting for some sparkle to arrive for it. Mad? Maybe. But I am proud of my wheels & can't wait to show them off.

Watch this space, perhaps I will end up on Google under 'blinged up wheelchairs'. And oh that would make me so proud ;-)



  1. I'm also a mum of one, occassionally on wheels. I have FND & CFS and in July made the big decision to get a stick, then a wheelchair.
    I don't drive (my working life consists of years as a commuter, now self employed working from home). The school run is my biggest challenge. A mile each way...a mobility scooter has been suggested but I've also been advised to wait (a month) for my CFS rehab. My wheelchair is great when hubby is around to push me but harder on my own. My arms get weak so I end up rolling in a curve. Pavements are less smooth and level than they would have you think.
    I'm glad you've got permission to decorate! Nice stripes. I got a metallic blue chair but haven't had a proper referral yet.
    Happy rolling :)

    1. Thanks for your comments Sally & sorry only just replying. Yes very tricky doing it on own when no strength in arms! An electric one would probably be better really.. hope your appointment goes well & they can help xx

  2. This is a great post Ali. Thanks for sharing the link with me.
    Emma Xx

    1. Thanks Emma , hope it helped a bit xx

    2. Thanks Emma , hope it helped a bit xx


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