wheelchair or not? (Adults)/general wheelchair stuff

[jo-jo]

Hi Everyone
I have got a question about wheelchairs, so anyone that uses one of is thinking of getting one - your input would be really helpful!!
At the moment I am getting really bad pain in my arms/hands and hips and I am really struggling. I struggle to get myself washed, dressed hair brushed etc. and have the energy to do anything in the day. Anything that I do do totally wipes me out even more. My GP has referred me to this 'lifestyles' thing at the gym. I am not meaning to be negative but if I am going to the gym - that means I am going to have to wear a bra, and I also don't like to go out without brushing my hair. I am struggling so much just to get up in the mornings and I tend to then put on clothes that are really easy to put on and, yes, at the moment I am struggling to wear a bra because of the pain in my arms/hands. At the weekends my mum is able to help me a bit more - but in the week it is too early in the morning - I need to be able to get up slowly and at my own pace. I am sleeping OK but I am still waking up feeling totally exhausted. My pain in my arms and hips has never been this bad before and it is impacting on my mobility. I used to be able to walk independently and more recently holding on to my mums arm for support, but this is now difficult due to the pain in my arms. I am finding the pain in my hips is really bad too and I have been thinking about getting a wheelchair to help me get around. I had a follow up appointment today at The National Neuro Hosp and they think I have POTS and suggested that cutting down on some of my pain meds - this frightens me a lot. He also suggested a medication (can't remember what it is called) that he would ask my GP to prescribe. He wants me to try and raise my bed, be more active and to continue to add salt and drink more. He also suggested cutting down on carbs (? anyone any ideas on this one?). I mentioned about the wheelchair to the nurse and she said she wouldn't support and that I was taking the easy way out. I don't think I am taking the easy way out - I know they are the experts but I know my body and how it is feeling. They are going to refer me to Stanmore but they said themselves that is going to take ages. My mum asked if there was any inpatient rehab that could help me now and give me a boost to kick start me but they didn't know of anything. She doesn't like the idea of me having a wheelchair, as she thinks I will get weaker and it won't actually help my pain or my muscles. We are going on holiday in July and I want to be able to enjoy it rather than struggling.
For anyone who uses a wheelchair how does this all sound to you? When did you start to use a wheelchair and what was the decider to start using one? Not that anyone really chooses to be in one in the first place!!
Gentle hugs xxx

[sheppeyescapee]

I started using a chair when I could barely walk a few steps without being in incredible pain because of my ankles and feet. I had really bad tendonitis and I didn't go anywhere because I knew that I would be in so much pain and wouldn't get anything out of it as the pain would be so distracting. I missed a lot of university, my social groups and everything. The wheelchair give me a new lease on life! I can now walk further than I could before (still far from great), the levels of fatigue I experience now are nothing in comparison to before. Wish I'd done it sooner! I can get out a lot more now, I can get to university, social groups. I can take myself to appointments, go shopping and so on. People say that I shouldn't use the chair, but without it I would be practically housebound.

[Superstottie]

I use one, but only for shopping and days out with the kids. I found that I had stopped taking the kids out as the pain and the fatigue were too bad, or if I did I would manage about an hour sitting at the park before needing to come home. I also found that when I went shopping, I would have to sleep for the rest of the day as the pain and fatigue had got so bad, and even the next few days I would be suffering. I now can ENJOY days out with the kids, and if I get too tired to push myself then my hubby or 12 year old can help me, so we can still stay out. I was very against getting one - it was my hubby who pushed it. But I love it now, I have a life again (well a bit more) and I can actually do my own shopping again, not having to leave it to the idiots at home delivery to choose my food!

I also find that the chair is better for my shoulder etc than crutches, as I hae already destroyed one shoulder using a crutch for many years and now have to do a very awkward hobble on one! BUT, using a chair can also be damaging to your upper limbs - so its important to try one out before you buy it to find out if you are able to push it without causing more pain.

Hoe you find something that works for you! x x

[Kattykins]

I will ditto all that! I have borrowed a manual chair for a few weeks now and it is just amazing how much less tired I am. I use a shopmobility electric one for playing around town. Now that really does give me complete independence!

I hope I get my DLA appeal sorted out so I can get one of my own!

[AnnaH]

I've got quite a collection: a manual wheelchair, a lightweight boot scooter, a heavier pavement scooter and a walker/rollator with a seat. Although it takes up space in the garage, having the mobility aide for every occasion actually helps me live my life, because I can always get out and about.

As for your hair, have you considered having a short style? There are some lovely, feminine styles around that would take very little maintenance. I can even go out without combing my hair as the style doesn't tangle (it's quite short). Failing that, stick a hat on your head!

I have seen bras for disabled people online that take very little effort to put on, and are front-fastening with easy-to-use fasteners.

I'm thinking an appointment with an Occupational Therapist could be very useful for you. There are many ideas, gadgets and techniques that could make your life easier.

[Carli34]

Hi Jo-Jo

although i don't have a wheelchair i do have to use a mobility scooter when i leave the house as i can no longer walk without chronic pain in back hips knees ankles and feet and thats on a good day. If i need to go out on a bad day then i have to rely on my mum to take me where i need to go.

I have had HMs all my life but only been diagnosed for 8 years and just recently i have been diagnosed with Fibromyalgia too which only makes things worse. I have only recently turned 30 but in the last few months i have realised one thing and that is it doesn't matter who thinks what or what they say i have to do what is right for me and if that means putting up with people looking and laughing at me cause i need to use a mobility scooter then so be it it means i can have a sliightly better life at home with my kids and to me thats all that matters.

I too struggle with bras and i find that although on some days i can't wear them at all some days i can but some days if i can't wear a proper bra and have to go out then i wear a sloggy bra with no fastenings or underwires they are a bit like crop tops i guess but i find them more comfortable then normal bras.

I have now had my hair cut shorter which as much as i love it medans i have to wash it everyday but like you i struggle with this but before i had it cut short if i was in to much pain i would just wash it and the pull it back into a ponytail although it wasn't always done properly at least it looked better them having to leave it down and unbrushed.

Carli x

[sueiz]

The key phrases here for wheelchair use are "pacing tool" - does it help you conserve energy & so get more done, or actually manage to enjoy a day out?
Also "social inclusion" - does NOT having a chair/scooter mean you are more or less housebound, and therefore isolated?

I have a manual wheelchair which means I can get out and go round the shops for an hour or two, although I do need someone to lift it in/out of the car, and to push me about as I can't self-propel for long or on any kind of slope or rough surface or my shoulders do horrible things! I also use my local Shopmobility scheme for round town - it has to be pre-booked which takes the spontanaity out of it, but better than never getting into town at all..

My understanding is that you can request a referral to wheelchair services through your GP.

Hope that helps you decide.

[Ames]

Making the decision to start using a wheelchair was one of the hardest things I ever did - and probably the best. I've gone from basically not being able to join in anything/being exhausted and in pain and scared to go out and do much for fear of getting 'stuck' away from my car to being able to go out and about and do most of the things I want to do. (I'm still exhausted and in pain but it's easier)

The decision for me came when I realised that I would actually be less disabled IN a chair than OUT of one! My mum was very worried that I would give up on walking all together but even she agrees it's fantastic. I still walk the short distances I always used too but now I can do much much more too.

I did have a manual wheelchair but just couldn't push it myself. I now have a lightweight rigid frame with emotion wheels. It's absolutely incredible but cost a bomb, and each set of batteries only lasts about a mile. (But I can lift it in and out of the car myself - with some difficulty)

Despite all of this, and the fact that my knee surgeon has told me I've got to stay on two crutches until my next surgery (over 6 months) because me knee is so unstable it's very very risky walking on it (not even allowed to swim) I am still constantly defending my choice to use it. Seeing doctors make me feel like I'm a lazy faker who enjoys the attention of being disabled or something , but I still wouldn't go back on the decision.

Does anyone know what Prof Grahams views on wheelchairs are - he's my last hope for some understanding in 4 weeks?

Amy

[missymoo]

I have certainly been thinking of using the motobility ones at shopping centres. I am worried that I will embarrass myself coz I haven't a clue how they work or I might run someone over!!!
I find it so difficult walking for long these days. I usually go with my mum who has similar problems and also needs to let go of and take the help. My hubby is even worse!!
After reading these posts I think I will take the plunge next time and use a scooter. If I do then my mum and hubby might do so too.

If I could get my hands on a scooter of my own - and my hubby or mother not use it all the time, then I definitely would use it.

[Rosie]

Hi mussymoo

Usinga scooter or chair from shop-mobility is a great way to find out how they work and to see if they suit you. If you are worried about controlling them, just remember to turn the speed setting down at first and you can't cause much too much damage. I find that people using leap out of the way when they see you coming, and you get a whole new perspective n life!

Rosie

[Es*]

For me, this question is a lot like 'to car or not to car' and the answer is 'yes, always for the M25, never round the shops, sometimes for other stuff of in between those extremes'. It's a method of getting to A to B, and taking into account your personal skills (e.g. one of my friends cycles hundreds of miles, but most of my friends don't have either the correct kit or the inclination for that, and some of them find that their lives wouldn't suit it either; they need to take kids or bit luggage or whatever it is...) it may or may not be the right choice for you, and if it is the right choice for one event/activity/time, then it may not be the right tool for another job at a different event/activity/time. If you're posing the question, then yes, it's probably a really good option for some of the things in your life that without a wheelchair you're finding hard or impossible to access. And you might even find it has added benefits you hadn't thought of (carrying more stuff, having a decent seat wherever etc) and/or negatives you hadn't considered (it's a bit of a proprioceptive disaster on occassion, drop curbs are lacking in places etc)... and that's fine...

[Sez]

I got my chair when I was nineteen and it completely changed my life. I also have a mobility scooter, but it's in dire need of new tyres and a new battery, so right now it's a very expensive, very large coat rack!
There was a lot of concern about me "giving up" when I went to my GP to discuss the possibility - not from my doctor who has always thought I have a "good attitude" towards my EDS, but from family and friends. However, seven years on, I'm still not as reliant on it as everyone assumed I would become. It's a fabulous tool which means I get to go to places I wouldn't see otherwise (I actually joined English Heritage at last because having the chair meant I could actually access places), and I'm able to go out and about with my OH, when even on good days I would end up stressing about getting parked close enough to places we were visiting, or sulking because I couldn't access the pedestrianised section of town. I'm another one who finds crutches and walking sticks are just no good for more than getting from car to somewhere I can sit down, as they cause so much stress on my unstable wrists, hands and shoulders, and even with walking sticks, etc, the pain in my lower back, knees, hips and ankles becomes unbearable after a few steps.
I still get around the house and my office, on good days, without any walking aids because I'm able to take it slowly and sit down when I need to, but having my wheelchair has definitely opened the door for me for so many aspects of life that I was missing out on.
Quality of life and social inclusion are so important, and now that I've been able to reclaim parts of my life that I loved, like visiting exhibits and art galleries, or even just going out with my best friend to browse the shops, I won't ever look back.

[Fiona-Jane]

hiya,

i got my chair about 3 weeks ago and it's made my life sooo much easier. i'm yet another one that can only manage on my crutches for very short distances before i need to sit down due to the pain, often this meant i had to sit on the floor when out and about and it got very embarrassing. i can now go a little further than i did on the sticks but the key difference being that i'm already sat down so just have to stop when i need to rest so no more stressing about where i can sit! i still use the sticks (or crawl, which is sometimes easier) when i'm in my flat cos its small and not much walking is required.


it means i can actually get out and about now and i'm sooooo much relaxed! many people have commented about how relaxed i am and apparently you can see it in my face and posture, and i have less problems with the frequent muscle cramps i get across my shoulders. it's still there, but so far reduced that i can easily manage it now so clearly stress was making it worse (i'm naturally a crampy person so even if i had no stress i'd still get them ). today is a fab example of how it's changed my life- i was able to go shopping to my local high street! and on my own! first time in a long time that i've been able to get out like this by myself! so it's a fabulous day!!! i only bought a few cheap tops in primark (vest tops are only £2 at the moment) and a can on deoderant and lightbulbs in wilkinsons but i was alone!

i have an ultralight TiLite chair thats only about 12lbs with the wheels off and i can get it into and out of my car without any major difficulties. it's a bit tricky when my arm muscles are tired (like after i've been out and about for a while) but i can still do it without too much bother and as i'm getting stronger it's getting easier- i got the whole chair dismantled and into my car in under 60 seconds today, a record for me (although it was raining heavily so that may have sped up the procedure! ). the chair is so light that i'm becoming able to lift it into the car one handed (i put it on the passenger seat of my car when i'm driving, and in the boot if someone else is driving me).


it's given me back my independance, without the same levels of crippling pain that i used to get when i was still able to get out and about on my sticks. and although i've only had it for a few weeks my back and hand pain has dropped a lot so i'm assuming the injuries that were causing the pain have finally started to heal. the instability will always be there so the joints pop out just as often and but as the starting pain is lower, when one comes out it hurts less to fix it .


i've had several people say that i would get lazy and not walk at all, but these are usually people that didnt understand my condition and once i'd fully educated them they understand when i use it. dont know how my doctor will cope cos she was the one that decided i was faking all those years (although i plan to see a different one in the future.... obviously). but to be perfectly honest- i dont care. effectively she works for me and so has no right to decide what is best for my health and wellbeing considering she has been wrong sooo many times (and i was right all those times.....). all she needs to do is give me the information and let me make the decisions. no one else has the right either- it's my life, so it's my decision. . i need to use it and thats that. i'm not gonna loose the ability to walk as i do hours of physiotherapy everyday. most people only go to the gym once or twice a week for an hour or 2 while i do 5 hours of physio (and a little cardio a day too) every single day. that usually shuts up anyone with 'lazy' comments cos i do far more exercise a month than most of them have done in a year!


and i plan to use my chair to when i see prof graham's colleague in december- purely because i cant manage the walk from the tube station. it's a long way to their clinic from the station if you have mobility problems and cant walk more than a few meters! in fact, all my hospitals are too far away from stations for me to manage to walk anymore! so if any make nasty comments i'll just remind them of the distance!


but i LOVE my chair! it's fantastic and given me my life back! and my view is that if you're asking yourself the question of whether you need the chair or not, that answer is usually that you do! but i'd recommend doing lots of arm and upper body conditioning prior to getting one (a few months worth of it) and getting an ultralight chair to reduce the chance of breaking yourself when using the chair


Fi xx

[Ames]

Fi,

I'm really pleased you've found the wheelchair has made so much difference to your life, it has for me too. Just thought I would check if you've checked if the tube station you'll be using is accessible..... because most of them aren't! (and obviously crutching up stairs slowly might be possible but carrying a wheelchair up won't!). I'm going to be going to see Prof G in my wheelchair too so my mum doesn't have to take the day off work to come with me but worried I'll come under attack for it, I've yet to find a doctor that understands that using a wheelchair to go out is a better choice than basically being stuck in the house.... is it THAT complicated?!

Amy x

[Fiona-Jane]

hiya,

i live in london so usually quite familiar with the accessible stations, but it frequently seems that although you can safely get to the platform you can rarely actually get on the train due to the step and gap! luckily the bus network is good so i get off at a station i know i can access etc and finish the journey on the bus

fi xx