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We want to hear from you: please tell us about your experience of the online community.

wheelchair or not?

RainbowEyes

I have fibromyalgia (and osteoporosis though this doesn't affect my mobility) so my energy is usually quite low on a daily basis anyway, but I'm also on painkillers/antidepressants which make me fatigued. How much I can do can vary greatly, though usually I'm able to go out once in the morning and once in the afternoon. Sometimes more, sometimes less. When I have a 'fibro flare-up' though I find even walking around the house a huge effort. I feel stiff and like I've got a million weights attached to my body and pretty spaced out. My partner wants to take me on some trips which would involve a lot of walking and suggested taking a wheelchair just in case. I'm not sure how I feel about this. I know if I went on these trips I'd need lots of breaks and by the end of the day I'd be exhausted. When we've been on trips in the past I've struggled after a while of walking and end up feeling really spaced out and like my legs don't even belong to me.

I feel so annoyed with myself because my condition can vary so greatly. One day I can take my dog for a fairly long walk (though probably not 'long' to most people's standards) and the next I can struggle to even just walk down the street. I'd like to know people's opinions. Should I consider using a wheelchair on long trips so we can enjoy the day rather than having to leave early? Or should I just cut our trips short/postpone them for when I'm well? I spoke about it with a family member who said 'you're not THAT bad'. But I tend not to speak about how exhausted and in pain I am sometimes. I just try to carry on with as little fuss as possible. Since starting medication prescribed by my rheumatologist I've had a great improvement in my pain. I used to be in severe pain daily, now I'm more tired all the time, get exhausted if I do too much and get 'flare ups' ever now and again, rather than daily.

I'd appreciate your opinions

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Comments

regent

RainbowEyes.
I wonder why you are asking for Opinions when it's obvious that your physical condition and self esteem would be much better if you used a wheelchair to get out and about and not suffer the pain and exhaustion.
I use a wheelchair, i would say to you, dont think about any possible stigma of using or being seen in a Chair....the general public are usually sympathetic, considerate and some never notice.
It's your choice, suffer and be restricted to the trauma's or use a wheelchair.
As an ex Injured soldier, i would say, enjoy the qualities of life while you can and use a Wheelchair......Good luck.

Jean_OT

Hi @RainbowEyes

I guess that you are putting the question of if/when you should use a wheelchair out to the community because you are not entirely comfortable with the thought, which is hardly surprising when you have people close to you failing to recognise your needs.

Ultimately you are the only person who truly knows how you feel and what aids/support you need at a given time. People with fluctuating conditions, who need to use a wheelchair part-time, often struggle with these decisions. It really is a difficult balancing act, which needs to look at your overall physical and mental wellbeing in a holistic way.

Being able to better engage with day-trips with your partner sounds really beneficial: fresh air, mental stimulation, change of scene, quality time together etc, etc. And clearly on days when you have a bit more energy you are in the habit of doing what you can physically (walking the dog for example) to help maintain muscle strength, balance etc .

Sounds like you are already in the habit of planning and pacing around your condition to do what you can, using a wheelchair is really just an extension of that. A tool to help you get the most out of each day.

Hope do feel able to do what is right for you and that you enjoy some lovely days out.

Best Wishes

Jean

Pippa_Alumni

Hi @RainbowEyes, just wanted to say that from a personal perspective, I can completely relate to your experiences of having a fluctuating condition and making decisions about mobility aids. I was really nervous to start using a wheelchair two years ago, but it's honestly changed my quality of life for the better. As @Jean_Scope says, it really is a means of making the most out of each day!

RainbowEyes

Thank you everyone for your supportive replies, i really appreciate it. You're right Jean, I suppose it would just be an extension of my planning and pacing =]
I suppose I'm a bit anxious about people thinking i'm a fraud, especially as i'm young and some days manage to get out a couple of times. I've been fighting with accepting my condition since symptoms started (this includes my other disability too - ASD) but I'm hoping I'll slowly begin to accept myself and my limitations. I find it hard not to compare myself to people my age
xx

GothOnWheels

Firstly you need to think about why you are so opposed to the wheelchair, do you truly belive you won't need it or is it stemming from the family member saying you're "not that bad".

I am in exactly the same position as you (but have recently had an episode so having to be perminently in the chair due to other stuff rn).My mother has always doubted the severity of my issues, and is very much a "not that bad" kind of person, which messed me up for ages in regards to needing a wheelchair. However after being forced into using one full time i have realised; i should have looked into the chair sooner, and this may have even prevented what happened.

I am having to learn to deal with my issues through therapy (well hopefully if i can ****** get any), and i have come to realise this is from my mother and not me - she has since all but admitted she doesn't want a disabled child because it makes her look bad.

In my case, having a wheelchair as a back up (using it to carry your stuff when you're not sat in it, which may in turn mean you're able to walk for longer) would be increadibly benefitial, as i get increadibly upset with myself for having to cut things short, and get worse when stuck inside.

Ultimately it depends on how you feel about it all, but it is deffinately worth having a proper think about.

I hope this helps and good luck x

Quinlan1

If you want a better life go for wheels when you take that first wheels which take a lot of guts your wonder why you did not end of day your not in so much pain grumpy and longing for bed more for a cuddle
Think how partner feels they want to share life with you and they can’t do it now they dont like seeing you in pain and upset is hard for them to deal with to you need to work togather
Your always get people saying you not in pain you look well you can do it just walk away they not people you need

thara

Why are you against using a wheelchair? Can you honestly manage without a wheelchair? Or are you being influenced by a misinformed well meaning family member or friend?

A wheelchair can be a good thing. I felt the same way last year when we were trying to order a wheelchair for our son. Right up to the day it came I was frequently oscillating between nervousness and excitement for him. Looking back a year later while I and my partner understood that his particular diagnosis meant that running was technically out of the question my mom hoped to see Noah walking independently instead.

She was unreasonable and completely unrealistic. I was trying to deal with my own feelings about his first ever wheelchair and she was not helping me at all. But my negative feelings vanished the minute I saw him mastering his wheelchair. By the time he was 18 months old he had totally figured out how to use it properly. We got a loan wheelchair from the hospital at first.

Later on we were able to acquire another wheelchair through other sources of funding for him. A wheelchair is just another way of getting around. If you see your wheelchair as a tool for independence and freedom then you will find it easier trust me. Do not let your wheelchair stand in the way at all. If my son (a small child) can quickly become accustomed to a wheelchair so can you.

Hugs.

Trekster

RainbowEyes said:

Thank you everyone for your supportive replies, i really appreciate it. You're right Jean, I suppose it would just be an extension of my planning and pacing =]
I suppose I'm a bit anxious about people thinking i'm a fraud, especially as i'm young and some days manage to get out a couple of times. I've been fighting with accepting my condition since symptoms started (this includes my other disability too - ASD) but I'm hoping I'll slowly begin to accept myself and my limitations. I find it hard not to compare myself to people my age
xx

Hi I've just joined and I'm a fibromite (cool term for fibromyalgia patients) and have asd as well.

There are some excellent communication cards you can use to explain why you need a wheelchair some days but not others. They also have a section for asd as well.

I use a wheelchair from time to time. I need to use it more than I do. I'm often too exhausted to take my own wheelchair out of my motability car and appear fine when I walk to folk that don't get it. I 'furniture walk' where you hold onto walls, handles, tops of tables as you move around.

I bought my wheelchair after saving up for six months and not going out for fun. It cost a few thousand pounds but was well worth it. I can do more when I'm using my wheelchair, I can use it on the stage of karaoke which helps with my singing. I can wait in queues. When I feel talked down to people I tell them I "have a degree" as there is the misconception that wheelchair use affects intellect.

mossycow

Hello! I'm a little biased maybe cos

I LOVE MY WHEELCHAIR ♿ ♥!

My disability does my head in.. Pain, fatigue....

But my two wheelchairs enable me. On some days I do out in my power chair and I don't feel disabled... Tis fab!

Now, saying that... 5 years ago I could have written your posts. I won't assume how you feel but I felt a bit like I was putting my condition on show, and that needing a wheelchair was some kind of symbolic step towards it being worse etc.

But I've learnt that a wheelchair is only like a hammer or a spanner... It's just a tool to make something easier.

PROS

For me using a wheelchair outside the house means I can go out and still have energy to feed the family for example when I get home

It means less stress when out...

If something unexpected comes up it might be easier like say a friend invites your out when usually you'd have to come home

I am much more fun when I'm less tired and in pain. We have a much better time.

In my power chair I can zoom off and do what ever the heck want!

CONS

Wheelchairs cost money BUT! there are ways to have help and ways not to spend... Which I'll post later as I'm really tired today. But basically, how about boring a good one from a charity.. Say British Red Cross. And having a go?

Was the best thing I ever did for my body. And just because you have that tool as an option you don't have to always use it.

curiousmom1996

This is a personal decision to make.

My son uses a wheelchair for mobility and long distances as well. It allows him to develop his independence and freedom too. I love my son’s wheelchair.

I’ll share a story now:
The other night I parked at a restaurant in town. My son and daughter were in the back of the car. I pulled up in a disabled space and set our parking disc on the dashboard of the car. The guy checking was about to ask me questions when he spotted me getting out a wheelchair from the back.

Without Logan’s wheelchair I would probably not be using that at all. We take him everywhere in his wheelchair. We’ve been to museums and shops and restaurants with it now. It entitled us to higher rate mobility DLA and a Blue Badge too. Having a wheelchair can be a good thing.

axwy62

Like many people, I dithered for months about 'giving in' and starting to use a wheelchair. I had conflicting advice from professionals - some said leave it as long as you can because you'll lose what mobility you have left as soon as you start using a wheelchair, others said I should just use a chair when I absolutely couldn't get any further without it, yet others suggested just using a wheelchair on bad days. Nearly all of them pointed out that I wouldn't be able to self-propel a manual chair.
I eventually bought a fairly basic manual chair but as predicted I could only move myself about 3 inches, so I was totally reliant on someone else and actually got to the point where I didn't go out alone at all, not helped by the fact that it's nearly 50 metres from our flat to the lift and another 50m from there to the car, which I simply couldn't manage to walk any more.
My husband decided he'd had enough of that and sourced a second hand power chair for me and now I feel like I have my life back. I go out most days whether or not someone is able to go with me and I've even travelled abroad to visit relatives alone. I can still walk around the house if I pace myself, but my mobility has actually been stable for over a year now plus my quality of life has improved enormously.
With hindsight, I'd have been much better off if I'd bought a powered chair early on. I'm absolutely certain it would have made no difference to the speed at which my mobility deteriorated, and thinking back to the days when I struggled to get to the loo because we'd been out somewhere and I'd had to walk from the car, it might even have slowed it down. Regardless, I don't care, I love my wheels and I wouldn't be without them.

Topkitten

I didn't have the complication of a partner when I decided I needed to try using a wheelchair and I found a charity that would loan me one for 3 months to try it out. I was 54 and a part-time user but for me it meant that I could manage to take mum out and go for a coffee much like we used to. The wheelchair was manual and that was 7 years ago. I did buy the loaned chair cheaply (£60) but, after a couple of years had to purchase (£500 ish) a new much lighter one in order to be able to still lift it in and out of the car.

I did find I had a few problems with my arms when first using it because they had to do the work instead of the legs. I also needed to find fingerless gloves in order to grip and move the wheels properly and to avoid getting blisters on my hands. I have never had anyone around except for my son who could manage to push me on the few occasions I used to see him.

Three years ago, when I changed my motobility vehicle I opted to get a mobility scooter that would fold down and fit into the boot. I also purchased and had fitted a hoist mechanism to lift it in and out as I was unable to lift it myself most of the time. I have found that thus gives me even greater mobility but at a price (£3500) which included a second battery which I left in the car in case it was needed.

Whilst it has been a great help using the chair and scooter there are some things to remember. Everything has it's limitations.

Getting into and out of and manoeuvring around in some buildings, especially old buildings, can be challenging at times especially with electric scooters or chairs. There is also the problem of getting your arms used to the effort, especially if your weight is high, or having with you someone capable of pushing you and tipping it to go up and down kerbs, for example, with manual chairs. An electric scooter or wheelchair is a good idea once you know you need it but can be expensive and the controls can take a bit of getting used to, to avoid collisions with other people. Electric ones also have a limit to their battery charge and you always need to remember to go less than half the distance before turning back. ALL wheelchairs and scooters can have difficulties over grass or mud especially if the ground is wet.

Most of these things are never considered by those that can walk.

Another thought is to consider a scooter's balance as going up and down steep slopes can be tricky on smaller ones like those that fit into the boot of a car. I managed to fracture my spine when exiting a bus using the ramp provided because I forgot to turn it round and drive it out forwards. Turning it round inside the bus was difficult. I weighed 14 stone at the time a lot less than when I first started using a chair.

Hope this helps and isn't too long or confusing.

TK

Chloe_Alumni

Hi @RainbowEyes, how are you getting on?

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