wheelchair-fibromyalgia

Since July my body has undoubtedly changed. There has been something new going on with my illness and I’m not exactly sure what or why. I’ve been battling chronic fatigue like nothing I’ve experienced before and it has be accompanied by a general sense of feeling really unwell. It has been severe, debilitating and at times relentless.

I have managed to build up fitness within this time and pushed on through and succeeded to an extent. After 5 weeks of slowly climbing up from rock bottom I went on an amazing trip to California and then had a fleeting return back to work. Both were extremely difficult but rewarding and worth it. It’s like I seem to slowly and steadily climb up towards wellness but then, all of a sudden, my grip is lost and I tumble right back down to the bottom and have to start all over again.

I’ve come to accept a few things. I’ve known it all along but failed to accept it as truth. Pushing on through may result in temporary success but inevitably it makes things a whole lot worse. However, not one to be defeated, I have also accepted that a few adjustments may be necessary at times to achieve my goals.

If you had spoken to me at the beginning of the year and told me I would need to rely on a wheelchair a couple of times I would have told you that you were crazy. No way. I was capable and I was managing. I was walking miles each day and I was doing it. The truth is, my body was doing amazing things for me. Amazing things that it simply could not sustain. Eventually it would break down and say “no more”.

The first time I used an electric scooter I was mortified. I was in California, at Disneyland, and even though I felt like hell I was determined I was going to do it all and enjoy it. By 11am, a measly two hours in, I was dead on my feet and struggling to even walk. My husband, bless him, talked me round into hiring a scooter. We had only one day to enjoy both theme parks and the options were 1) go home or 2) hire a scooter.

Like I said, I was mortified. That’s the plain truth. I didn’t feel like I justified the use of one. I mean, I am in my twenties and I don’t look sick. Surely they would think I was a fraud? And what would people think when they saw me?

Well I’ll tell you something. As soon as I sat in that scooter all those worries dissipated. I had this huge smile on my face and I couldn’t stop giggling. It was simply the best decision I made that day. It was like a weight has been lifted and I instantly felt better and I had an amazing time.

The staff at Disney are wonderful and, as for other people, I simply couldn’t care less. Yes people looked. I’m sure many thought, “I wonder what’s wrong with her?” or “she doesn’t look sick”. But you know what? I was oblivious the majority of the time. I was too busy enjoying myself. And any time I did notice I started singing “Ridin'” to my husband and we would be in stitches.

mobility-scooter

“They see me rollin’, they hatin’, patrollin’, they tryin’ to catch me ridin’ dirty”

I have no prejudice against wheelchairs at all. I just did not see myself being in one. Since that day at Disney though, my whole perspective has shifted. You just have to adapt and do anything that will help you achieve what you want to do. I am capable of walking a lot on some days. On others I simply haven’t been capable. It’s just the nature of the illness. It doesn’t make me a fraud.

I have used a chair on another occasion and that was to visit the Enchanted Forest with friends. I rented one and my mum and I gleefully road tested it to make sure I was feeling well enough to go out in it. We whirled around the park and again the smile quickly spread across my face. What a joy it was to be outside in the fresh air after being house bound.

My friends are amazing and were so supportive and totally understood the need for the chair. My husband wheeled me round the Enchanted Forest and I had my tripod and camera to take some photos without even leaving the chair. Without it, I simply would not have managed and would have been sat at home upset and frustrated at missing out. It was the start of me getting out and about again and then slowly getting back on my feet.

I’ve come to accept that I need help and assistance at times. It might seem embarrassing at first but please embrace anything that will help you to get out and do the things you want to do. Life with fibromyalgia is a bit of a roller coaster. There’s some ups, some downs and some unexpected turns. Embrace the ride and do all you can to enjoy it.

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37 Comments

  1. Very good post and thanks for sharing! I too face being in a wheelchair, at least part time for such outings as an amusement park, etc. I completely empathize as I detest giving up this last little bit of freedom over my body I still have. However, if I do not face reality, I will not get to partake in such adventures. And I would rather be in a scooter/ wheelchair and be there than not go at all.

    • Thank you, I’m glad you enjoyed the post. Absolutely! You have the right attitude. I wouldn’t hesitate now. Thankfully I seem to be on the up again but should I have a bad turn I would most definitely use one to help me get out and about

  2. Great post and great reminder for us all about how we need to shift our perspective just a bit sometimes. Just because we ask for the help we need doesn’t mean we can’t do things, we just need help sometimes. Everyone needs help sometimes, so why is that those of us who need it most are the most uncomfortable asking for it?

    • Thanks Julie. I think a lot of people who have fibro are natural go-getters and so it is hard to realise you need to slow down and sometimes accept help. But I’ve come to realise that making some adaptations and asking for help when you are down is better than being stuck doing nothing. That’s when the negativity creeps in for me- too much time to think when you have nothing to do.

  3. corrin garland Reply

    Thank you for your post I had to give in 4 wks ago and get a wheelchair. My boyfriend takes my dog out for hours and I’m left at home. He stopped inviting me to come with them because I was so slow and got tired too quickly. As a birthday present my bro and mum gave me the money for a chair. I hate the thought that I can’t go out on long walks without the chair. I will say they a couple of weeks ago we packed up lunch etc and walked to the next town on an old railway. In minutes I was laughing and joking and felt ok to be in the chair. Will only use for days out etc but I feel like I have more freedom not less. Xx

    • Hi Corrin, I am glad you found the post helpful. That’s brilliant that a chair is giving you so much more freedom. I think that’s the big plus- it enables you to do things you may have otherwise missed out on 🙂

  4. Thank you Thank you! I love this post! I am stubborn and hard headed. My husband will be the first one to tell you that. I have other issues besides Fibro and there are times I need to use a wheel chair and I refuse. I am over weight but it is due to medical issues. I have Lymphedema and Lipedema and my legs suffer and constantly in pain. I feel like people judge me oh look at the fat lazy woman having to use a wheel chair. I NEED to change my way of thinking instead of just pushing through the pain.

    • Hi Linda, stubborn and hard headed… yep that describes me too!! 🙂 I have finally realised that anything that helps me to get out and do more is a positive, whether it is temporary or more permanent. It’s sad that people do judge but I think you just have to take on a filtered view and not concern yourself with strangers out to ruin your day. So long as you have the support of those who love you that’s all that matters. I do wish I had my own wheelchair back when I wrote this post as I would have found that I was able to get out more than I did. I am thankful to say that my health has improved but I still have days where I wished I had one so I could do more than I am capable of at present.

    • That’s how I feel! I am obese partly because I am not very mobile and partly because the depression caused by constant pain has pushed me into emotional eating. Whenever I am using a store scooter I feel like everybody is judging me. They must just think I am lazy! My new electric scooter is being delivered this afternoon so I am trying to prepare myself mentally. I need to get over this fear of what people think. It’s also extremely hard to accept that I’m 31 and need a wheelchair.

      • Bless you Angie, I have to use a mobility scooter also because of so much pain. I completely understand. I have all the same problems as you. I am so glad you still get out. I am so glad that I do also because I have stayed in so long and now am able to get out more.

  5. Best decision I ever made was to lease a power-chair from #motability, even though I still feel a bit weird sometimes when I go out in it 🙂
    I don’t get out much but I get out 100% more than I did before and see friends now and again too, I even get out for lunch dates with friends, when my health lets’ me of course!

    I used shopmobility scooter service for the first time in April this year………. I was terrified of crashing, falling off it, knocking someone over but within 10 minutes I got the hang of it enough to control it 😀 I also didn’t want anyone who knew me to see me because I was back on my old stomping ground from 20years ago 😮 I didn’t want to have that whole conversation as to why I was disabled, it was bad enough explaining the walking stick at 23years old to them, it just winds me up in the wrong way, brings me down and generally leaves me feeling negative about myself.

    I remember the feelings of not wanting people to see me and the anguish of people talking over my head like I was invisible I don’t know how I managed to get over those insecure feelings but now I love being out in my chair and when people stare I just smile at them and say hello 🙂

    You look great on the scooter and look like your having lots of fun too, scooters n chairs give us that bit of independence and saves us energy so ‘our’ batteries don’t run flat so quick 😀

    Great postive post, fluffie hugs and smiles to you 🙂

    xxx sian 🙂

    • Thank you! I am so glad that you are able to get out and have more independence now, that’s wonderful. I understand the feelings you experienced but I am happy you were able to work past them. I think anything that helps us live better is a big positive 🙂

  6. Mandie1975 Reply

    I came across this post while searching for opinions about whether or not it’s “acceptable” for someone like me to use a scooter or wheelchair. I was diagnosed with fibromyalgia/cfs a year and a half ago – after months of tests (nope,its not MS either). I am still struggling to accept without “giving up.” I hear “don’t let your illness define you” and yet I’m also told I need to learn how to live with it. This issue has been one of the biggest struggles for me. Do I REALLY need a mobility aid? On good days I can walk, as long as I can rest frequently. On bad days, walking across the house to get a glass of water sounds like too much effort. My husband sometimes pushes me in a wheelchair. I hate it. Mostly because I can’t control where I go. I want to see something 3 steps away, it’s right there. But then we are past it. Do I ask him to turn around? So I’ve decided to try an electric scooter. I get to steer! It gives me just a little more independence. But then I asked myself – is using a scooter like accepting defeat? Am I giving up on the idea of a more active life?

    Thank you for sharing your experience and how it actually helps you get out more. I need to keep reminding myself of that.

    • It absolutely is not a defeat 🙂 You are getting your independence back and it is helping you to get out and live– embrace it and know that it might not be forever either 🙂

  7. Your article made me feel so much better about needing a wheelchair. I am 31 and have had Fibromyalgia since I was a young child (although I was not diagnosed until recently). I can’t walk without heaps of pain and after 10 minutes I am in tears and can’t take another step. I have recently accepted that I will need an electric wheelchair. I can’t use my arms without a lot of pain, hence the electric one. I am getting mine delivered this afternoon. I am a little excited to be able to do what I need to do without as much pain. But at the same time, I am freaking out about what people will think. I have already been told that I am giving up. So I am having mixed emotions. I googled Fibromyalgia and wheelchair to see if others had to do the same thing. It’s nice to know that I’m not the only one. Only Fibro sufferers would truly understand. Thank you! 🙂

    • I’m so happy this post has helped you. I recently purchased a scooter of my own, which I will be writing about very soon. I’m sorry to hear you have fibromyalgia but it sounds like you have made a really positive decision for yourself. I hope that once you start to get out and about and you’re feeling the benefit that your fear will dissipate. Try not to project your own thoughts onto others as we can often be harder on ourselves. Just smile and hold your head up high, you are doing your best and that’s all any of us can do 🙂

  8. Thank you for this post. I too am a fibro warrior, I liked to call it, for 15 yrs now. I am 35 and do not look sick. Lately my fibro and body have been doing alot of fighting against me. My latest is I lost my gallbladder at the beginning of 2015 and became lactose intolerant because of it. In the beginning 2016 I started having heart rate issues. So now on top of my daily fibro I have to deal with this sporadic heart rate increase. I have gone thru more relentless testing and I think in the past two year I have learned more about myself and my fibro than the 15yrs prior. I still have a hard time asking for help, it will still make me feel like a failure. But I have been blessed with a wonderful husband who has been with me thru it all and two kids who keep me going. I guess I needed to vent for a bit, thanks for listening. So back to why I loved your post. It made me feel like I am not alone and that feels great. Good luck to you and your family.

    • Hi Shaunna, thank you for your comment and please know that you are not alone. I’m sorry you have been dealing with this for such a long time and have faced other health problems along the way. I too have issues with increased heart rate and palpitations at time, they are really unpleasant so I empathise. Asking for help is always tough, especially when we so desperately want to do things for ourselves. I’m pleased to hear you have wonderful support in your husband. Thank you. Stay strong and keep telling yourself that you’ve got this

  9. Dona, thank you for you honest open article. Clearly it has touched many. I have Fibro and C.F. I had the same early experience with up and down you did. Five years ago my body crashed . I’ve been in a chair since. I wanted other readers to know. Most insurance companies , medicaid included , will pay for a custom wheelchair if your Doctor prescribes it. Find out before paying for one out of pocket. There is no shame in needing help . Don’t hide your illness , it only causes you unneeded pain in the end. Thank you again.

    • Hi Kathleen,

      I’m sorry to hear you crashed. I know the feeling as that’s how i describe what happened to me a couple of years ago. I am slowly building back up and wheelchairs/scooters have been an important part of that. You are so right that there is no shame in needing help. Thanks for sharing that tip about insurance, I am sure that will be helpful for others to know 🙂

  10. Jennifer Hoof Reply

    Would love to talk! I have fibromyalgia and docs think something else may go on cuz in may 2016 I started to turn for worse. I have to use a wheelchair on long outings.

  11. Mandie1975 Reply

    Since my last comment in November 2015, I have been blessed with my own electric wheelchair. I was just about to buybuy a scooter when I decided to test drive a chair instead. I’m so glad I did! I have found that my arms and back get much less fatigued (and pained) since I can sit back and use only my hand to steer. Anyone considering a scooter: please think about back support and arm fatigue before you decide.

    I also wanted to relate something I heard at an airport recently. An attendant was pushing two elderly people in airport-supplied wheelchairs. Without any attempt to speak quietly, a woman turns to a perfect stranger and says, “You know, they don’t really need those chairs. People just use them to get ahead in line and then they walk on the plane.” It took all I had to keep my mouth shut. So judgemental! And so ignorant! I would so happily go to the back of every line, if it meant I could stand/walk for that long! The inconvenience of having to use a wheelchair far outweighs any desire for special treatment someone might have. Find the ramps, get through a door, get past people who ignore your need to have enough space to go around them etc etc.
    I didn’t say anything because I wasn’t using my chair at the time. But I wonder, if I’d been in my chair, would she still have said it?

    • Hi Mandie! That’s wonderful to hear that you now have an electric wheelchair. Since writing this post, I’ve actually bought myself a scooter 🙂 You can read about that here if you would like. That’s a very important point you make about arm fatigue and back support! I am very lucky in that respect with my scooter. As I am so tall, I can put the tiller down low and cheat by using my legs to drive it if I want to. And my chair is pretty comfy. However, if I needed to rely on it more than I do, I would agree that a power chair would be a better option.

      People can be so ignorant. Many think of disability as being black and white– you can either walk or you can’t. Of course, that’s simply not true! There is a huge grey area and disability is very individual. Having used a wheelchair through airports, I can agree it isn’t about getting special treatment and avoiding lines. There’s typically a lot of hanging around, going round the long way and it’s far easier for those who are abled. People don’t appreciate how lucky they are sometimes.

  12. Hi, discovering this post today is exactly what I needed. I have fibromyalgia, arthritis and hypermobility. Within the space of a few years I’ve gone from being constantly on the go to practically housebound and severely depressed. Today my doctor decided to refer me to wheelchair services and I’ve been upset about it all day, refusing to accept i need one and feeling like a fraud because sometimes I’m fine. Your post however is helping me to look at it more positively so thank you:-) x

    • Hi Angela, I am so pleased this post has helped you to come to terms with your referral to wheelchair services. It is great that you have the support of your GP and I hope your referral appointment goes well. I see my scooter as enabling me to do more and, though I was very reserved about it, having it has been nothing but a positive experience. I don’t use it all of the time, just when I need it. And that’s perfectly okay 🙂 I can completely understand all your feelings as it is a difficult adjustment. But I hope you are able to come back and comment in the future, telling me how much your life has improved because of your chair. Good luck!

  13. Jacqueline Reply

    I just came across your blog, and wanted to thank you for posting something so personal and inspiring. After years of pain and problems, which just kept getting worse, I was finally diagnosed with CFS and fibromyalgia.
    It’s gotten to the point where it feels like I’m walking on two broken ankles and can barely make it a few minutes down the road without needing to stop, and journeys now take twice as long.
    I had considered a wheelchair once before, and worried about the upcoming specialist consultation about it, for exactly the same reasons.
    I was mercilessly ridiculed by a few for using the walking stick, because they couldn’t see something wrong with me and because sometimes had a good day without it, and the fear of being considered a fraud was overwhelming. But your post has inspired confidence to do whatever is necessary to get my life back and be able to get out of the house again.
    So thanks again.

    • Hello Jacqueline,
      Thank you so much for your kind comments about my blog, it really means a lot to me. I am sorry to hear you have been diagnosed with fibro and CFS. It’s awful that you were ridiculed for using a walking stick 🙁 I am sorry you went through that. I am so pleased to hear that this post has helped you to feel more confident about everything. It’s difficult learning to adapt but if we want to live life as well as we possibly can, it is something we need to do. Good luck!

  14. I, too, had an experience in ‘breaking down’ to make the decision to use a wheelchair for the first time, and really, all subsequent uses. I really don’t go any where but doctors, church, and grocery store but on this particular day I’d done more than usual and my last stop for the day was to be the grocery store. I was so tired, but more than that my pain level continued to raise higher and higher. By the time I’d gotten from my car to the carts, inside the store, I was ready to go home! I looked at the electronic wheelchairs then at the cart I had … thought of the things I needed to shop for & chose to put the cart back & get the wheelchair. The BEST decision I ever made. That feeling of relief I felt when I sat down was so good! I don’t always use a wheelchair at the grocery store unless I Really Have to … but if there aren’t many available at that time – I leave them anyway in case someone else comes in who might need it more. What I DID find however, was that grocery stores are NOT stocked for those who HAVE to use a wheelchair! I’m not sure what their solutions could be but I DO believe that they should use wheelchairs as they try to figure it out!!

    • Hi Becky, I can totally empathise with all you say. I am glad you were able to make that decision for yourself and have felt the benefits of it. It’s good that you have that option available to you if you need it when shopping. It’s a shame that not everywhere thinks about accessibility as much as they should. It may be worth speaking or writing to your local store and highlighting the problems you have encountered as I am sure you will not be alone in your experiences.

  15. Debi Barham Reply

    I retired a few months ago. And had been hiding the pain for years but the fatigue and brain fog along with ADd and bipolar meant quit or get fired. My work was generous. I finally got my handicapped placard and a Rollator. Best things I did for myself. I use the electric sometimes in the store and the other customers will go out of their way to be helpful not to even mention staff. I’m so grateful I got to work till eligible for retirment. I so appreciate this two items that help me conserve my energy. Accepting anything that gets you out in the world is not defeat it is a big shout Here I come I’m not finished living!

    • Thank you for sharing Debi! This is great to hear. I love your attitude towards life 🙂

  16. Mary Jo Sminkey Reply

    Wow, this article came up on a search for wheelchair use by fibro patients and I sure can relate! I have been using a scooter but my particular issues cause me to develop increasing levels of pain when I’m locked in a sitting position, so even a scooter becomes intolerably painful for me after a few hours, so I’m currently trying to find a wheelchair that will work for me, that can recline and elevate my legs particularly when I am not moving. But the frustrating thing I am finding is that wheelchairs simply are not generally made for patients that are both active but still have use of their legs and may need to adjust the chair back as well. So you either have to get an extremely heavy and expensive power chair that has power adjustments (which cost new over $20K, and are extremely heavy and hard to transport….something I definitely do NOT need) Or if I want a light, folding wheelchair that I can easily travel with, and fit in say, a cruise ship stateroom, the only ones that recline have to be adjusted from behind, by a caregiver. And I could only find ONE company that even MAKES a lightweight folding power chair that can both recline and elevate the legs. It’s extremely frustrating, that there is so little thought for people like myself that need to use a wheelchair but cannot tolerate being locked in a sitting position all day because we not only do have feeling in our legs and pelvis, we have a lot of pain in those areas when we cannot adjust our position regularly.

    • I too am only aware of powerchairs with that ability. It is frustrating that this is a need that isn’t well thought of. Is there any way you could fundraise for your chair? I know someone who had a lot of success with GoFundMe. It could be worth considering as it sounds like this would have a big impact on your quality of life.

  17. Pingback: Part-time on a Mobility Scooter – Overcoming Fear, Embarassment and Feeling like a Fraud – Free-Wheeling

  18. Carolanne Connolly-Brown Reply

    hi i found this post while i am trying to decide if i should purchase a wheelchair. I have fibro and M.E apparently, i say apparently because i have been told by one doc i have both and told by another you can only have one. i suffered M.E for 12 years before going into remission for a number of years then i developed fibro. I have a manual chair at moment, which i use for distance walking but i cannot always manage to control it due to painful hands and arms. I also use crutches but at times these make my pain worse especially my upper body. i want to buy a lightweight powered chair that gives me freedom and control. I have no intentions of using it all the time i just want it so that i can get around when i need it. I am currently at university full time and i do a lot walking around the campus but that is as much as i can manage as I am stopping and starting. I was worried i was going to be worse off with a chair but i think as long as i use it in a balanced manner i will be okay. thank you for your post it was super helpful.

    • Hi Carolanne, sorry to hear you are suffering from fibro and M.E. again following a relapse. I too suffer from both, though my underlying cause I now know is Lyme Disease. My personal view is that there is a lot of overlap and that it is possible to suffer from more than one of them. I think from what you are saying, a powerchair would bring you a lot more independence and reduce the pain and fatigue you are suffering. I say you know your body best and what is best for you 🙂

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