7 replies to this topic

[Ratchick]

I feel rather awkward even posting here, as I don't have an SCI. However, I'm finding it really difficult to get advice on a wheelchair. I suffer from nerve damage and constant pain in my abdomen and back from various medical issues, and it's at a stage now where I only get out of the house literally to go to the doctor, and I struggle even to walk more than a few feet. As a result, I've been basically housebound (and bedbound) for most of the last five years and finally given into the fact that I may need a wheelchair to get around.

However, I'm finding it impossible to decide what kind of chair would be best - I'd assumed folding, as even with a chair, I struggle to remain active because sitting itself causes excruciating pain, but in all honesty I am completely lost. I'm only 33, and confused and feeling really rather low about the whole thing. I just don't know what to look for, what would be good or bad, or even what is a good price range to go for.

Unfortunately, my GP has been no help, as I'm not basically paralyzed and can walk albeit a short distance, and even the local physio department has not given me any advice. So I'm rather unsure where else to turn. I don't expect to be going out without assistance any time soon - I can't drive and my current high dose of pain meds would prohibit me learning anyway! So I expect I'd always be with someone driving me to and from places at least. The only exception would be a direct train journey to visit my parents at Christmas, and I'm aware that I can get help from station staff to get on and off trains. While my upper body strength isn't appallingly bad, it's not great, and one of my medical problems may well cause difficulties with movement of one or both arms periodically. I share a house with two people who are godsends helping me out practically as my husband could not handle my health issues. However, my best friend/housemate does usually accompany me most everywhere.

If you feel that I shouldn't be posting here, then I totally understand. But if anyone could even point me somewhere more appropriate or give me some advice, then I'd be grateful. I have no idea if I've given you enough information to even go on, but thank you in advance, and I hope I haven't offended anyone by posting in the first place.

Andy

[airart1]

why dont u go see a neurologist and get a mri and find out whats wrong and fix the problem instead of being drugged up and bed bound, your only 33, are u content with living this way the rest of your life? really dont understand why not find the problem and try to fix it? but as far as a wheelchair goes i would say a light weight folding quickie, if your back pain is so bad u dont get out of bed then u sure wont be able to pick up a solid frame chair, unless u are going to depend on someone doing everything for u.............why not see a doctor?

[dangerousdave]

You need a specialist and he will need a MRI
Get a referral to a neurologist

As for chairs your choice is as big as your wallet - and it will be easy to spend a lot of dosh on a pile of rubbish so .....

Fixed frame, suitable cushion, palm of hands on centre of wheel spindle, fixed or adjustable back cushion, chair width and wheel camber
Thats just for starters

Keep on walking for as long as possable befor you enter the chair forest of options

[chrisarnold6]

That's excellent advice. It's truly amazing how poorly informed some GPs are about these issues.

Two manufacturers rated well are Cyclone and Tilite. These offer choices of both rigid and folding chairs; BUT the referral for MRI scanning/neurological appointment is the number one priority.

[airart1]

u've got to start somewhere, and just living with something that u don't even know what the problem is, is really not a logical option, it could be something cracked and if not fixed, become permanent, see the right doctor, fix the problem!

[Ratchick]

Thank you all very much for your replies.

I have been to a whole number of docs, pain clinics, neurologists, urologist, gynaecologists, surgeons. Sadly, my problems aren't fixable I'm told, despite repeated assessments (yes, including MRIs). I probably should have made that clearer. My issues started as gynaecological problems and unfortunately have spread to include urinary and gastrointestinal issues, as well as neurological damage, a whole lot of scarring and ligamentous issues throughout my pelvis and abdominal cavities, causing intense pain in my back, abdomen and pelvis. On top of that, I have a condition that causes massive amounts of infection, abscessing and scarring under my arms (among other areas), which can limit my arm mobility as well.

Believe me, I do NOT want to be like this - drugged up and in constant pain, and if I could do anything - anything at all - to avoid it, to fix it, I would. Sadly, I've worked my way through so many docs (including those who do know what they're talking about) and every single one of them has thrown up their hands and said they honestly can't see a way to "fix" me. Trust me. I've been fighting with this since I was in my teens, and I've been in constant pain since I was 18, which is a long time to go without a full night of sleep!

Sorry, I don't want this to sound like a pity party - to be honest, I try my best to just get on with things, and I know they could be much worse. But as I've been told by every doctor I've been referred to that more surgery (and believe me, at one point I was having 2 ops or more a year trying to resolve things) is just going to worsen things and pain management - as far as it goes for neurological pain - is the only real option, then I have the choice of staying at home and managing just to walk a couple of hundred feet in agony, or I can stay as mobile as I can in the house, but at least have an option to leave the house (alone or with others) which I really don't have now. Hence why I asked for advice. I'm really sorry if I've caused any upset or offence - I know that many people with SCIs would be grateful even to be able to walk a few hundred feet, and believe me, I don't intend to just stop mobilizing completely. But I don't honestly see any choice right now if I want to be able to actually try and HAVE a life outside of these four walls. I cannot stand being unable to do things like I used to. I miss working - I had a fantastic job in IT that I loved, friends, a social life, a partner etc. I did this all despite the pain. But eventually I suppose the pain became stronger than me. And that is the fact that I struggle with day after day - I can't stand depending upon others for things that I should be capable of doing myself.

Anyway - thanks very much for the feedback. It seems it really is very overwhelming, and I will do some more research into finding some fairly local mobility shops or advice centres, and ask their advice, try some things out, and see what works best. I will definitely bear in mind the suggestions that you've all made. Once again, I really am sorry if I have caused any irritation or offence, as that really wasn't my intention.

Regards,
Andy

[dangerousdave]

No offence taken Andy , but remember that these so called mobility companies are there to make a profit
Get proper assesment and advise, preferably from a wheelchair clinic or mobility outlet attached to a hospital
As well as stopping and talking to a passerby active wheelie - iv'e talked with many people over time and havn't considered the chat as a waste of time

[airart1]

plus visit the suppliers as well, if its like the states, theres 20 different ones around the hospitals just in nashville, tn. especially talk to the docs and see which ones they like the best, but definately check them out first, here in the states, we have horror stories over wheelchairs........sounds to me u might need both electric and maybe a manual...........sorry about the condition, sounds painfull and having a hard time, shame they cant do more than be drugged up.......