My walking is getting more and more painful and difficult, does anyone use a wheelchair and did you feel embarrassed at first.

[Lucyw]

I really don't want to use a wheelchair but I just don't know how much longer I can manage without one. The pain in my legs, hips and back is so painful these days I can't seem to be able to lift my legs. I think I'll feel so embarrassed if I see someone I know. I just don't know what to do?

[trisha64]

i was bought a wheelie zimmer by my ex ,, the first time i used it i was absolutley mortified ,, but do u know something im at the point where i dont care now ,, im grateful to have it because i can get around a bit ,,so look at it this way it will give you a bit of independace ,, and when my daughter was wheelchair vbound last year for most of the year we found people on the whole wwere far more considerate ,, sorry for typo hands very bad tonight ,, x

[tofty]

hi lucy i get terrible pain in my legs from hips to toes and my daughter wanted me to go in a wheelchair today wen we went around BnQ but i wudnt ,so i know wot u mean.its a terrible situation we r in isnt it ? we look well but if only they new .if u feel u need a wheelchair hunni then u have one luv tofty xx

[Sarah-Jane]

I was fine until my hips became extremely painful last Feb [2011] and became housebound for several months unless taken out and left with only a few paces to get where I needed to be. I was so stressed about being housebound that I insisted I wanted a wheelchair. My husband was the one who didn't want me in a wheelchair and he finally admitted he feared I would always be in one if I had one. My answer was 'do you really think I want that?' so he gave in.

I have my own wheelchair but have put on weight and needed another one. I put out a plea for one on Freegle and got a reply that led to me getting one via my doctor. Did you know that your doctor can refer you to your DGH wheelchair service? I didn't and now have a lovely wheelchair, just the right size too! It will never be mine, but I do not mind that. Saved me a lot of money too. You may have to wait though. My local lady organised a chair delivery even though they are meant to measure you etc and put you on a list! My is self propelled, and I refuse to be ignored in it. If anyone does I speak to them directly. I love the freedom it gives me, although I still cannot walk the dog with it! Ha ha.

We have to get over our pride a bit to accept we need help but it is worth it. If you can, get a light weight one, and if you buy your own you can jazz it up a bit. I had to get a cushion too, with the coccyx cut out bit [its in red tartan and folds so easy to move about] Be careful you don't get one too hard or you won't be able to go shopping in it as it may get painful. Actually your local haberdashery may be able to get you a cushion made to suit your needs and colour choice!

If you claim DLA [disability living allowance] you might be able to afford to get yourself a car or a mobility scooter. Get on the Mobility Scheme too so you are fully insured, so is the scooter/car, and they repair it if there is a fault or damage and if you break down they are affliated with the RAC who will collect you and the vehicle and take you home! How about that!

I hated my scooter, it made me feel disabled. However, I can now walk the dog, and strange as it may seem my young cat comes to if its around the block! We do look a sight but I make a point of smiling at everyone, and everyone has been lovely - even a bunch of teenage boys! And thats after I have dressed the scooter up a bit. I hated the seat and felt that the whole thing was for old people, although I have seen young using them. So I got a car seat cover to put over the seat. I didn't like the design as it was so I have sewn butterflies all over it! You know the ones you can get as patches to sew on or iron on. Be careful though because the fabric is not suited to the iron. I burnt it! Oh well. And I added sequins! So now it is definitely mine and I hope people don't think I am mad, just excentric!

I am still in work, but do not know how much longer I will manage to stay there, I rang up Access to Work [via Jobseekers Plus] and they said 'what do you need to get you back to work?' as I had been off for 5 months and had to get back. So I said my husband works shifts so he could either take me or return me but not both - so I am getting a taxi for the ones he cannot do and they came to my work, assessed it, told them what work they needed to do to make it disabled accessable . The other thing was getting around the work site [school] so I was measured for an electric chair, which the school had to partially pay for. I also have a computer chair to walk around the class rooms with and sit on whenever I need to. I went back to work last October.

Things are kind of working out for me, but my FM is getting worse and I may have to pack work in. However, if you are working, do not reduce your hours as the final settlement will go on the new hours not the original! Also get in touch with Social Services and get them to allocate you a Social Worker and an Occupational Therapist who will assess your needs at home.

Good luck and I hope all this information is useful. Have to sign off now as I have had a migraine all day and it may come back if I don't get to bed!

Night, soft hugs

[purpleblossom in reply to Sarah-Jane]

Hi Sarah Jane!

I'm fairly new to the forum. Your post really resonated with me. I've been using Access to Work as well to get back to work, they've been so supportive. Don't know what I would have done without them in fact. Hope you feel better and the migraine has subsided. I used to get a lot of migraines and still have to take good care to try to keep them under control. I find that lying in bed under the covers in a completely dark and silent room (after taking a triptan!) often helps. Hugs,

x

[Sarah-Jane]

Forgot to say, ask your doctor to send you for Physio for your back etc and maybe Hydro Therapy too - its lovely in that deep warm water, but do ask them if they have treated people with FM as they need to know your limitations and not push you too hard, too fast.

Good luck.

[Hidden]

i have asked my gp for these therapys and was told there was no budget left this year!

lucy get your wheelchair, motor scooter. walking in pain making outing impossible and you end up irritated, angry, then tearful.

i was embarrassed and it took me two years before i got one. my teenager get a big funny over it. but i crack jokes about it and she also prefers to have her mum able to shop with her again than not. you get over the embarrassment and i only use it when i know we want to visit the main shops and will need to walk for a couple of hours.

they sell second hand electric ones quiet reasonably now. go treat yourself you deserve to be in less pain and getting out socially is good for us all.

ps a bonus is others show you more consideration too xx

[jazher]

Hi, my legs hips and ankles are gradually getting worse it is excruciating somedays but i always findthat if i give in to the pain and sit down constantly it makes them worse.

If i keep my usual routine of walking up to school twice then it seems abit better but also if i walk any futher it hurts too much later and i feel it all when i fiunally go to bed.

I cant win at the minute with them i dont know what to do for the best.

I am in two minds what to do and i am even thinking of asking the doc for strong pain pills.

kel xxx

[Ebony]

I have got to the point when i find it difficult to walk, so much pain in my hips, legs and back. I also have dizzy spells and felt quite a few times that i am going to fall but thankfully I haven't. My lovely partner bought me a motorised scooter, it was second hand but its great and I don't bother what people think about me being on it. I have a place for my walking stick on the back. I am happy to go out on it.

I also have a motobility car, this is my third car through them, driving makes me feel normal, i have to have an automatic but then many 'normal' people do.

It means I can visit my son without having to ask my partner to go with me every time

If having a wheelchair means you can go out more then get one and don't worry about what people think !!!!

[squidley]

I find walking difficult I don't use wheelchair but I use a 4 wheel rollator with a seat attached. I suffer from oestroarthritis in my knees and left hip as well as suffering from fibro. I was a little embarrassed when I first used the walker but the relief this provided soon outweighed what people thought. If a wheelchair helps you that is all that matters.

[Sue15197]

I use a wheelchair/scooter out of the house. It's embarassing the first few times, but after that I was ok. It was other people's reaction that amazed me, the first time my sister saw me in the town centre, she cried. I've seen people who I've not seen for a while and they are very retiscent to come towards me. To be honest its them who have the problem not me, I do not need that.

[66Amanda66]

Hi, i have just been put on the waiting list for a wheelchair and have been told i will have to wait at least 18 months, that is ridiculous in my opinion.

I am also getting to the point where im in so much pain walking i really feel i need a wheelchair now, but i will only use it when absolutely necessary as i dont want to become reliant on it.

I also feel slightly embarrased about it but if needs must etc......

Amanda x

[babebatista]

My walking was so bad, I was referred to OT, to come and assess my house for adaptations. I was given a walking stick, and a three wheeled walker that has a seat. I was also referred to the Wheelchair place. I had to wait for a while but without I couldn't go out. I only use my wheelchair to go out into town and to go into the hospital for apt. My husband is my carer so I only go out with him. I was a little self-conscious at first and I was scared that people were going to stare at me. However in the end I realised that all of these things are helping me to still live my life. I've got an illness which has affected my mobility so I have to find a new way to cope to still live my life and if that's by using a wheelchair ect, then fair enough. I have suffered with my back for years, scoliosis since I was 16. It's not great but it helps, along with my meds, all of these wheelchair, walkers, sticks ect, it's pain relief. That's how I look at it. Don't be embarrased if you need to use one, use it. It helps you. Helps you get around xxxx

[Elsbeth]

Bit more info on the mobility scheme... if you don't want a car and you get higher rate mobility then you can actually use the money to get a scooter/wheelchair. If you have a car then you can't do that obviously but as has been mentioned the DLA pay your insurance for 2 drivers (as long as they live with you or within 5 miles of your home), new tyres as needed and breakdown cover. Also when you get Higher Rate Mobility you are then tax free on any vehicle you own.

I use an electric wheelchair on bad days and I honestly don't care what anyone thinks of it. I stopped worrying ages ago about what people think. They are not in my life and matter none to me. For me now it is more important to make my life easier and if that means using a chair then so be it.

I do understand the initial worry but lets be honest, most people are too wrapped up in their own stuff to wonder why you are in a chair.

[Gracie59]

If you can get a free wheelchair in your area, grab it now before they change their minds. My elderly mother-in-law has had a free wheelchair for the past 12 years. Now they have told her she will have to pay for the next one. Always the most vunerable that get hit the hardest - but that's going off topic a bit.

[cobweb]

My mobility is now dreadful - walking around even a small shop is almost impossible, but I swallowed my pride a couple of years ago & bought a mobility scooter - & it has transformed my life! I now have the ability to go into town if I want to & can once again enjoy country 'walks' with my dog. Without it I would be housebound. Try hiring one from shopmobility (in most big towns) once you get the hang of it I'm sure you'll never look back & will soon wonder how on earth you managed before! Good luck!

[ChrisLUFC]

I'm so sorry for you, Lucy. I gave in last June when my dad came round with a wheelchair he had bought for me. He knew it was useless talking to me about it so he just went and bought it. It's made my life so much better - I can get to my appointments much easier and my husband can take me out and about. I have the same symptoms as you and sooner or later you know it's going to happen, so go for it.

[purpleblossom]

Wow all the above posts have been really insightful. I do understand what you are going through. I found it really difficult to start to use a wheelchair, being young and still having family members who simply don't understand what I am going through and expect me to cope and be well. But you come to a point where you weigh up the pros and the cons. Will your life be better with the option of using it when you need to? Will it enable you to go out where otherwise you would have had to stay at home or politely decline because you couldn't manage the walking etc? These were the type of questions I thought long and hard about and after several months of sitting at home not moving anywhere and realising I wasn't getting better I knew that the wheelchair would give me independence and that I had to stop caring about what other people thought of me. Saying that, I do completely empathise and did also feel very embarassed at using my wheelchair in front of certain people, as I was quite image conscious etc. But health issues change you and force you to change your outlook on things and prioritise. Your health comes first, not others' expectations of you and how you should "look."

Hope that helps. Hugs.

[PedroMota]

i use one for large distances for the same reason.

nothing wrong with that