CHRONIC PAIN - Trying to adjust to losing my mobility and using a chair

[Worrysaboutalot]

I have recently been diagnosed with a rare neurology condition which has also led to me struggling with my mobility.

In my house with no shoes and a stick (crutch) or two, I am fine to get from my sofa to the stair lift OR stairlift to my bedroom/toilet. Plus I know which walls I can lean on and have a stair lift (I was falling down far too many stairs before it was fitted)

Outside I use a powerchair, as the few stairs I take inside are so much more difficult to do in shoes and on varying unlevel surfaces. Every step is very hard to take even on the flat, it feels like I am wading though thick waist high mud. It is very hard. The consultant said this is because I get no or incorrect feedback from my leg, plus I lose track of my legs when I am not looking at them! Which is fun, not!

Being in the chair is freedom, happy, looking forward, it is also difficult, hard and painful (my nerve damaged legs spasm and cramp)

I also struggle because should I be using a wheelchair in my situation. The adult social services lovely lady said I was choosing to use it, rather than 'needing' to use it.

In one way she is right but how can you live your life if you are limited by only taking 10 steps before you need to sit down and recover. Assuming you didn't trip, fall or have your ankle give way from under you. Honestly if I didn't use the chair I would be housebound in my 40's!

So I feel guilty about using the chair, even though I can't see a way of getting my primary kids to school and keeping my own sanity along the way.

Having done a lot of googling, apparently I should be referring to myself as a part time wheelchair user or an ambulatory wheelchair user. Not sure of the difference but thought someone might be able to tell me.

1.How do I accept that I need to use the chair?
2.How do I not feel like a faker for using one?
3.Any advice!

What a stupid thing to say! Where is it written if you can put one foot in front of the other even if is painful or only walk across the room you must carry on until you can no longer take a single one!

There are plenty of ambulatory wheelchair users. So you may need to go out shopping but once in coffee shop you can slowly manage to walk to loo without one doesn’t make you a fake. The assumption that a wheelchair user are totally paralysed is just lazy from society.

I think that’s why so many people use mobility scooters even when they can’t walk without one. As they seem to be “I’m not really disabled”

Accept it’s a really positive thing and you can now go miles and miles and get everything done that you need to do verses being housebound. It’s a mobility aid not a give up equipment. All this rubbish about being “wheelchair bound” is horrid and ablest language.

Having said that I’m a wheelchair user for 15y or so and I do know it’s a big leap and people do treat you differently. Talk to you differently and that can be hard to get your head around.

And of course the Uk has along way to go access wise. But do post particular issues I’m sure we can offer advice. Whether it’s ramps, or what to do when rains, or how to carry shopping!

I’m so cross about that lady though, was she assessing you for a chair? Or was it for another matter? Where I live they don’t give you a power chair until you are unable to move a manuel wheelchair inside. So even if you can manage to move room to room you don’t qualify for outdoors one.

Then when you get one on the NHS I have to sign saying it’s for indoor use only!! Bloody stupid. Like I would buy one myself to use outside the house and have space to store 2! So either they expect you to do this or know you are going break rules anyway.

I can walk a great deal more than you, and refer to myself as wheelchair user. Because that's what I am: a person who uses a wheelchair!

I'm not wheelchair- bound, so I don't say that.

Occasionally for clarity I say "part-time wheelchair user" or "I use a wheelchair for outdoor distances". I've never had anyone struggle to understand this!

Please, please do not be made to feel guilty by a patronising idiot from social services who probably strapped quarter of a ton of metal and a petrol engine to her arse in order to come to your house!

She was choosing to use a car and didn't need one, because after all she could have spent an hour walking to your house instead...

Bet she sits on the sofa and uses the TV remote control, too, rather than getting up to change the channel. But like the car, that's not called a disability adaptation (even though for me it is one) because she likes to use the remote too...

I don't know what this weird behaviour is, but I've noticed people who are not disabled merrily use every shortcut and lazy method offered to them, and even brag about their "time-savers" and "life-hacks". But for some reason the same people get all cats-bum face about disabled people using devices and techniques to make their lives easier.

In fact for you, OP.

And I strongly second what Akire said, especially:
it’s a really positive thing and you can now go miles and miles and get everything done [...] It’s a mobility aid not a give up equipment.

She was assessing me to help me.

She did help in the house giving me a bed sitter upper, a bath board, one grab bar in the bathroom, toilet cage and a perching chair which I use in the bathroom whilst I brush my teeth, as I can't stand that long.

We self funded a stair lift for safety reasons even before we knew what was wrong with me. As I was too dangerous, my husband saw me leaning very far over on the way down the stairs, which if my grip had given way (which it often does) I would have fallen down stairs breaking my neck or worse! So he insisted we got a stair lift at that point which I have a love/hate relationship with too!

I didn't realise what I was doing or why but the consultant explained I was visually checking each foot was on the next step, as I had no sensory nerve feedback which would normally tell you that information.

Then we self funded a manual wheelchair to be pushed in and later on we self funded a powerchair, as our area only give manual wheelchairs to people who can neither push to standing with an aid or walk a step. I can walk several steps, so no wheelchair help for me. We emptied our savings to self fund

But the 'you are choosing to use a wheelchair, you are not a full time wheelchair user', discussion. Was in relation to me trying to get out of my house. I had 6 steps between my front door (which was also replaced with a low threshold one, my parents paid for that one) and the pavement and I needed some kind of wheelchair ramp to get my self funded chair on.

They refused to help as my wheelchair was not prescribed to me and I wasn't a full time wheelchair user. As I only use it 100% outside and 2% inside in my hall!

I cried, my DH firmly asked them to leave and he hugged me and said we will sort it out. We luckily bought a second hand ramp from eBay and my DH and his friend fitted it themselves. Instead of a £7k proper ramp we have a £500 (it is really lovely) ramp.

So now I can get out of the house on my own...independence!

You are claiming PiP right?

PerkingFaintly Thank you. Lovely posts :)

I don't get the wheelchair bound thing at all. As I explained to my 8yo (who isn't coping with me being ill) The bad thing is the illness that made mummy's legs not work right, the good thing is X, as X is brilliant and takes mummy everywhere. (Where X is my name for my chair I mainly love the freedom X chair brings me)

It is silly to feel so guilty about using a mobility aid. I even carry two crutches on the back of my chair in case of emergencies, so it is clear that I can do some steps. But I blurt out to complete strangers, "It is OK, I can walk a few steps. Things could be worse! "

You are so right, everyone else wears shoes, cars, trains and in the home remote controls and cooks in an oven rather than in a fire pit outside, lol. Thank you you made me laugh, I needed that.

@Akire

You are claiming PiP right?

Yes, I have some great advice on Mumsnet, who helped me though 2020, which included applying for PIP and getting a blue badge.

I now have a medical driving license, as I need hand adaptions and hoping to get a mobility car in April 2021. So I can leave the village and find a new job :)

I would consider complaining about that- if you have any energy left!

Are you perhaps being 'too proactive' by their standards? Should you have waited until you'd had a series of falls, or were no longer able to stand from seated? How infuriating.

Ah, OP, that's wonderful that the various bits of kit are giving you freedom!

@picklemewalnuts

Are you perhaps being 'too proactive' by their standards? Should you have waited until you'd had a series of falls, or were no longer able to stand from seated? How infuriating.

I got my second neurological referral, after I fell to the floor three times over a weekend. I went in black and blue and demanded and got a second referral. Which isn't like me at all, but I was so angry that I was still falling.

A year earlier at my first neurological referral, that consultant told me to "wear walking boots and bd more careful" and dismissed me after a 10 minute appointment.

A month (ish) later I fell down the dentist stairs, I screamed as my ankles bend back on themselves (nothing broken), upsetting my kids who were with me.

Falling over and down stairs have been regular in the last 3 years of my life.

Alongside dropping things, including a full cup of tea down myself! I don't drink hot drinks any more.

But none of that is relevant, I am only middle aged and even helping myself it took months to get out of my own home. If I had waited for them it would of been years!

I guessed they would help us more, maybe I was asking too much.

Doctors do say silly things. When I was in my 30s and had bladder problems they say things like “can you not get to the toilet in time” well yes in theory but normally you get more than a seconds warning. It’s not like I was taking 2h to go to the loo!

I often wonder if they tell people who break arms or leg skiing down mountains “you need to be careful” as if getting up to go loo or bending over is considered such a reckless dangerous event they need tell you off for it.

Assessors whose job it is to restrict use of funds say all sorts of bonkers shit (to use the technical term!)

A wheelchair is to help you move faster and more effectively for longer. If you were using a bike or a car they wouldn't say "ooh, you're just choosing to be lazy, why don't you walk?" (ok, some might, about the car, because people are idiots).

Glad you've managed to get PIP. Wheelchair services in the UK are really shit, hardly any better than America where you're screwed without insurance. You're probably better off buying your own if at all possible anyway.

A month (ish) later I fell down the dentist stairs, I screamed as my ankles bend back on themselves (nothing broken), upsetting my kids who were with me.

I’m currently you, if you hadn’t used the chair. Please, whenever anyone is being a knob and questioning how much you “need” your chair, think back on the incident you mentioned here, and how fortunate you were to escape serious injury.

Four weeks ago, my leg went numb under me. My ankle collapsed with an almighty snap, the pain was wild, and it was like a horror movie, honestly. No broken bones, but my doctor said “not to celebrate just yet” - I tore some ligaments, there was/is a huge bruise, I damaged it so badly that I bruised and traumatized some of the bones, I’m in a cast, on blood thinners, and in the wheelchair now anyway, and I’m still having to ice it for swelling and heat (over the cast) after four bloody weeks. I just can’t believe how badly it’s gone, all because my leg went numb. I have no idea how long of a recovery I’m facing, and it will probably be more difficult since I have a muscular condition.

SO. Please, PLEASE, don’t ever try to force your numb limbs to work out of embarrassment or misplaced shame. You’ve been fortunate so far that you haven’t been injured worse (I know it’s hard to think of being fortunate when you’re still ill and already in a wheelchair), and you definitely need that chair! Also, if it helps, think of it this way: you’re actually saving the NHS money by NOT getting injured. So anyone questioning your wheelchair need or cost is quite an idiot.

That is a disgusting comment from the lady assessing you. I would argue you do need a wheelchair because its unreasonable to restrict your mobility to only 10 steps. I can walk, but I do use a wheelchair for distance. My disability has been lifelong and it took me a long time to accept using a wheelchair. However for me it has been fabulous- I can go for days out and enjoy them without worrying about pain, or finding somewhere to sit or ruining DH's day. It's easy for people without mobility problems to pass judgement on whether you need a mobilty aid but they don't live with your condition day to day x

RightYesButNo Hope you heal as fast as possible, despite your muscular condition. (((hugs)))

you’re actually saving the NHS money by NOT getting injured.
That is right! I never 'fall over' in my chair...I might fall out at some point but that is another story, lol

Jackparlabane Yes, if they had actually helped me, it would of cost them £7k, so they saved a lot :(

But the Adult SS was very nice lady and she did help in the house, so it wasn't all bad.

@Akire

Doctors do say silly things. When I was in my 30s and had bladder problems they say things like “can you not get to the toilet in time” well yes in theory but normally you get more than a seconds warning. It’s not like I was taking 2h to go to the loo!

I often wonder if they tell people who break arms or leg skiing down mountains “you need to be careful” as if getting up to go loo or bending over is considered such a reckless dangerous event they need tell you off for it.

I hear you. I have a long term bowel condition but because of this newish neuro problem. I can't feel my bladder or bowel. So I have no idea when I need to go. So my watch alarm goes every 2 hours during the day and that is my reminder to take my pills, drink some water and go to the bathroom.

If I forget it just comes out, yuck. I have to carry a clean up kit and a change of clothes wherever I go and thank goodness for waterproof pants and pads for outside journeys. I live such a glamour's life.

That said I no longer have the hot/cold fear, pain and panic of knowing I am going to have an accident and desperately trying to get somewhere private preferably with a toilet. That is darn difficult and I have a lot of sympathy for you. It is hard and you sound like you are coping well (((hugs)))

Rosieposy89 Thank you for your lovely post. In particular this bit...

It's easy for people without mobility problems to pass judgement on whether you need a mobility aid but they don't live with your condition day to day x

That is so true and I am going to try to remember that in the future.