wheelchair or not?

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

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 

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.

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