M.E. on wheels!

18 Apr

Earlier this year, at the grand old age of 28, I made a purchase that I thought was decades off.

I got me some wheels! Sadly not a nice shiny Porsche or Audi TT, not a car of any kind. Nope, I bought myself a…..wheelchair.

My wheels! Photo by Jess B.

My wheels! Photo by Jess B.

The decision to buy a wheelchair was not an easy one for me. I was worried that by buying a wheelchair I was giving into my illness, that I was letting the ME / CFS win  and that would mean my ME / CFS would get worse.  I worried that it would make me fat(ter) as I wouldn’t use my legs as much. I worried what people would think of me for buying a wheelchair and that people would think less of me if they saw me in a wheelchair. I worried that people would think I was letting my ME / CFS get the better of me. Basically I worried a lot (which of course didn’t help my ME / CFS in the slightest).

PROS OF A WHEELCHAIR

Then I took a breath, got rational and thought about all the pros of buying a wheelchair. It would mean I could get out more. The energy saved by not walking would mean I could do more out of the house. This would make me happier and give me a bit of my life back. It didn’t matter what anyone else thought. Bottom line if it would help me improve my situation of ME / CFS then it was a no brainer, I had to buy a wheelchair. The question then became, why hadn’t I bought one sooner?! I can’t take total credit for this mind shift. It was my GP who actually made it hit home how useful a wheelchair would be. He said to me ‘it’ll give you back some control over your life. It will help you feel in control of your illness. I think you should definitely do it.’ So with that validation I took the plunge.

AN ENERGY SAVING DEVICE

And you know what, it has been brilliant. Having the chair in Philly has been a Godsend. It has meant that I have been able to go out and see much more than I ever could have managed if I’d been walking or if we were reliant on taxis for every outing. I haven’t gone out everyday, the chair is not a miracle worker, it hasn’t (sadly) cured my ME / CFS, but it has helped me feel in control of my illness and enabled me to have a little bit more ‘of a life’. Without the chair I wouldn’t have managed the 13th street shops or the Macys’ Flower Festival. Last weekend we went to the lovely Rittenhouse Square area and wandered around the bookstore and the surrounding streets in the Spring sunshine. I was more tired than my ‘usual’ the next couple of days, but not totally wiped out and I’ve got the chair to thank for that 🙂

Philly LOVE sign on UPenn's Campus. I wouldn't have managed the visit without my chair. Photo by Jess B.

Philly LOVE sign on UPenn’s Campus. I wouldn’t have managed the visit without my chair. Photo by Jess B.

I’ve maintained my paced walking, on my better days at any rate, so my fears about the chair making me fat have not materialised – gluten free gluttony has taken care of that all by itself! Having the chair just means more flexibility and that more options are open to me. It is an energy saving device, that’s all. Life with ME / CFS is a little less restricted a wheelchair. We’ve planned a trip to an outlet mall and with the wheelchair, I think / hope, I’ll actually be able to do this without totally wiping myself out and last for more than half an hour. Clothes shopping, and all other shopping for that matter, has been pretty much restricted to online for me so it will be so nice to be able to peruse clothes in actual shops.

West Philly Street, a 'walk' around my sister's neighbourhood in my chair.Photo by Jess B.

West Philly Street, a ‘walk’ around my sister’s neighbourhood in my chair.Photo by Jess B.

My wheelchair is a snazzy little number. It’s a light bright shiny royal blue. It is lightweight and folds up small for ease of travelling. It has a dual break system which is essential for me not hitting the deck, there have been a few near misses! You don’t realise how bad pavements are until you’re sat in, or are pushing a wheelchair. The slightest uneven paving stone causes the chair to tip forwards and my family to cry out ‘ooops’ or ‘Jeessss’ – not sure what I’m meant to do other than get my hands out so I don’t face plant onto the pavement! Thankfully I’ve not fallen out….yet. My pushers are very good, and we’ve all gotten good at spotting dodgy bits of pavements, of which I can testify there are a lot in Philly! The curbs here are also quite high and the slopes down to the road at zebra crossings dangerously steep. Thank goodness for brakes! My mum quickly learnt that the slightest slope, the kind of pavement that doesn’t even look like it has a gradient, equates to a strenuous workout when pushing a wheelchair (or me in the chair at any rate!)

HAPPY MEMORIES

My dear Nan lived until she was 94 and it wasn’t until she was in her late 80s that she ‘gave in’ and bought a wheelchair. I know Nan would share my views on the wheelchair. It enabled her to do much more in her later years than she otherwise would have been able to do. Nan would also share my (slight) fear of falling out of the chair. One incident that has become infamous in our family history was when my family and Nan were on holiday in Gloucestershire. We were visiting Oxford for the day, having a lovely time wandering around the narrow cobbled streets and looking at the beautiful colleges. The key word in that last sentence is ‘cobbled’. Cobbled pavements and wheelchairs are a dangerous combination. My Dad was pushing my Nan when the chair caught on a cobble and tipped forwards. Nan held on for dear life and somehow managed to stay in the chair as Dad pulled it back.  For a long time after it was my Dad’s running joke that whenever he was pushing Nan he would pretend to tip her out. I’m smiling just thinking about this, happy memories 🙂 Nan, I now know exactly what you went through!

Provided you trust your pusher, which I do (honest!), the wheelchair isn’t a stressful experience and has been a huge asset on this trip. I want to say a huge thank you to my Mum, Dad and Sister for pushing me about. Mr B you’ve got all this fun to come when you arrive in Philly next week!!

And where did I get this wondrous thing? Amazon of course, you can literally buy everything on that site!

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20 Responses to “M.E. on wheels!”

  1. fibrofaery April 18, 2013 at 11:12 am #

    Great post! ♥ I’ve been contemplating getting some wheels too – but have also really worried over the decision. Hearing how it’s helping you though is so wonderful, I think it’s about time I bit the bullet and bought one too! xxx

    • myjourneythrume April 18, 2013 at 1:25 pm #

      Thank you so much for your lovely comment, really glad that you enjoyed my post. I’d totally recommend getting a wheelchair, I know it’s not ‘cool’ but it has been such a big help. You should definitely get one 🙂 Jess xxx

      • fibrofaery May 5, 2013 at 9:24 am #

        Hey! After reading your post I decided to go for it!! 😀 The first one I got was SO heavy though, so it had to go back 😦 I’m on the look-out for another one though! 🙂 Also, I hope you don’t mind, but I popped a link to this post on my blog at http://goo.gl/SyJGM Hope that’s okay! xxx

      • myjourneythrume May 5, 2013 at 4:46 pm #

        Hey, of course! that’s absolutely fine, thanks so much for the link! I’m really happy my post helped you decide to get a chair. I’ll find the link for the one I bought and send it to you as it’s a lightweight one. Jess xxx

  2. Wendy M April 27, 2013 at 11:22 pm #

    I’ve been using a mobility scooter for the last year and it is wonderful- as you note with regards to the wheelchair, it allows me to do more in the world than I could otherwise. I agonized over the decision to get it but as soon as I sat down and started to use it, I was ecstatic at the realization that i could be out and about without being completely wiped out within minutes. It is good to read about your good experience using it as a pacing tool too.

    • myjourneythrume April 28, 2013 at 9:02 pm #

      Thanks so much for your comment Wendy. So nice to hear someone else’s positive experience. Now I only wonder why didn’t I get a wheelchair sooner?!

  3. tiredtechie May 4, 2013 at 12:16 am #

    Hi Jess! I just found your blog and I’m loving it, though I’m very sorry you’re sick (as am I). Congratulations on your new wheels. I’ve thought of getting an electric wheelchair or scooter myself, perhaps even one of those all-terrain models that can go on trails. I don’t think Amazon has those. 😉 I do have a rollator which is an absolute life-saver in places where people normally stand, like museums, art galleries, etc. I do get some funny looks, since it is normally only the elderly who use them, but people are also very nice and rush to open doors for me. It does take a certain amount of courage to be so visibly disabled, since it can make other people uncomfortable, but if it helps us get out and about I’m all for it!

    • myjourneythrume May 4, 2013 at 7:20 am #

      Thanks so much for your comment. I’m really sorry to hear you’re sick too. I know exactly what you mean about being visibly disabled. It does take courage but as you say if it helps us then that’s what really matters. People do look at you differently when you’re in a wheelchair and some even talk differently to you too. But you get used to it and now I’m much more oblivious to it. The rollator sounds like a good idea too, anything that helps 🙂

  4. tootietazzy August 1, 2013 at 11:50 pm #

    I am glad I came across your post.

    I recently spoke with my doctor about a chair but am still apprehensive about actually using it. She has referred me to OT again since they helped me with equipment for around the house a few months ago.

    I figure that I probably will end up getting one, I just have to get past that first time of using it in public. My main worry is the fact that I am the driver. What are people going to think when they see me get from the chair into the driving seat of my car.

    Thanks for your post. It has been helpful as far as me seeing past the wall that I have been seeing since my appointment with the doctor and hopefully I’ll be able to start enjoying things a bit more than I have been over the last 7 years.

    • myjourneythrume August 2, 2013 at 11:54 am #

      I know it’s easy for me to say but try not to worry about what other people think. I did for so long and made my symptoms worse and missed out on so much because I didn’t want to use a chair for fear of others looking at me. You get used to it surprisingly quickly and mostly I’ve found people to be kinder to me when I’m in the chair, it’s a visible sign I’m not well and they open doors, get out the way, let me go first in the queue etc. I know exactly how you’re feeling about it, I was exactly the same, but please just think of yourself and your health. Do what’s best for you. Nothing else matters.

      • tootietazzy August 5, 2013 at 2:42 am #

        Thanks for taking the time to reply. I bit the bullet yesterday and used one of the ones provided in supermarkets. My partner was great about pushing me around and because I wasn’t as tired when we got home, he said that we should just do that from now on.

        I think the hardest part for me was doing it the first time, and, having people look at me. I’m very self conscious so do anything that I can to not attract attention.

        Again, thank you for replying.

      • myjourneythrume August 6, 2013 at 12:38 pm #

        I’m so glad to hear you used a chair at the supermarket and saw benefit from it. It’s hard not to be self conscious about it, I hate that aspect too, but I think the benefits of being able to do a bit more without feeling horrendous afterwards makes it worth it.

  5. Emma Jane March 28, 2014 at 9:57 am #

    I don’t need a wheelchair to get about in any more but I push it and put my shopping on it. I never have to stand up in line for anything – I just sit in the wheelchair and then get up when it’s my turn. I get funny looks but I don’t care! Great blog! Hope you get better soon – in fact I hope that for everyone with this awful illness.

    • myjourneythrume June 24, 2014 at 8:24 am #

      That sounds like the perfect use of a wheelchair! I hope you are feeling better.

  6. Mems Godfrey June 28, 2016 at 12:38 pm #

    Firstly, I love your blog! So helpful and encouraging to read. Also, I wondered whether you could recommend a chair? I understand if not, but i didn’t realise how many types there were and my husband and I are at a bit of a loss what to go for. Thanks!

    • myjourneythrume June 28, 2016 at 3:59 pm #

      Thank you! So glad you like my blog. I would definitely recommend getting a wheelchair. It really helped me to be able to get out when I was at my sickest by extending my energy if that makes sense – as I didn’t have to spend energy walking / holding myself upright to stand up I had more energy left to actually enjoy doing something and lasted longer at it. Having a chair also made travel possible both ease of movement at the airport (though airports have to offer a free mobility service which I used before I got my own, it was so much easier having my own) and to visit places once in our destination. I can’t remember now where we got it from, I’m wondering if it was just Amazon, I will look back and try and send you the link. I know we went to a local shop to try them out before buying it online – cheeky I know but keeping costs down was essential. We got a medium weight one I think, sturdy enough to give a comfortable ride (with foot rests and padded arm rests) so as not to spike myalgia pain but not too heavy for my husband / parents to push and lift. Hope that’s helpful. Will try and find the link to where we bought it. Jx

      • Mem Godfrey June 28, 2016 at 9:28 pm #

        You star, thank you! That is really helpful advise. I’ve seen a few on amazon but i may find a shop first to try a few out, that sounds like a great idea! I used assistance at the airport last month, so glad i did. Made the whole journey so much easier. But now we’re home I’m looking at getting one, so that like you mentioned, I’m not stuck at home. I want to go to London, but last time i did it near on had me flat out for a week after. Not in a hurry to repeat that. Thank you!x

      • myjourneythrume June 29, 2016 at 7:38 pm #

        https://www.amazon.co.uk/gp/aw/d/B00687I5QK/ref=mp_s_a_1_2_a_it?ie=UTF8&qid=1467225189&sr=8-2&keywords=simple+life+wheelchair&pi=SY200_QL40&dpPl=1&dpID=51KPbKUnk2L&ref=plSrch

        This was the chair I bought, Simple Life Mobility Ultra Light folding transit travel wheelchair. I’d definitely recommend going to a local shop and trying them out. London is hard, though I did use mine here but avoided the tube. I think it’s worth getting one, anything to improve quality of life is important as it helps boost mood etc. Jx

Trackbacks/Pingbacks

  1. I got me some wheels!! ♥ | Fibrofaery's Blog! - May 5, 2013

    […] wasn’t until I read Jess’s awesome blog post on her new set of wheels, that I started to realise how much I was missing out on in life, by not […]

  2. My Journey Thru M.E. Part 3: 2013 Turning the Corner | my journey thru M.E. - December 5, 2014

    […] much agonising about whether I really wanted to ‘go there’ I bought a wheelchair which meant I was able to go out for longer than a gentle 20 minute paced walk without totally […]

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