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Housebound and today I want to scream

Hi all,

I’m 37 and housebound. My car is getting sold tomorrow. I know it needs to happen because I can’t drive anymore, but 20 years behind the wheel is a hard thing to give up.

I feel incredibly claustrophobic today, and I just want a different view than these four walls. I can’t get out. I can’t even see enough to go to the shop. I’m usually ok with this illness but today I just want to scream and I just want to see something what. I want to go for a long walk. I want to be amongst the trees in the wood and its never gonna happen again and I’m meant to be ok with that.

If anyone has any words of encouragement for me today I’d be really grateful. It was my birthday last week and I hope that this is middle age because I can’t live through another 37 years of this.

Thank you

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Aw my Tingly friend. How utterly miserable you sound.

And I’m not surprised. It’s hard giving up your car. Your freedom and independence. I’d love to be able to just get up, leave the house, get in a car and drive to wherever I like.

We’ve just got a new Motability car. It’s lovely, and fully electric (very smug given the queues for fuel just lately). It’s officially ‘my’ car. But in reality it’s my husbands. I haven’t driven for nearly 10 years although I only finally decided to not bother renewing my license this year. I love the car, but I’m completely gutted that I will never drive it.

I’m used to the lack of independence now. But I still hate it.

I felt really peeved this summer by all the people swimming in the sea. I would love to go in the sea. But I can’t walk anymore even a couple of feet and i certainly can’t swim, even if I could get over the stones on the beach (I live on the south coast).

I truly am middle aged, at 54. In January I’ll have had MS for 25 years. I don’t want another 25.

Sorry, I’m not encouraging, I’d love to be. I just know how it bloody well feels.

Sue

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Thanks Sue

I am largely ok. I think it’s today, losing the car etc. I’m annoyed that covid meant I couldn’t go out and over that time, my eyesight has failed to the point where I can’t be on the road.

Sometimes I wish someone had my back. I live alone and have no partner and I’m expected to soldier on but I’m bored, I’m lonely, and today I could use company and a trip out

Same but different. Nothing like so life-changing.

I can still drive and my mobility issues are mostly centred on my left leg so can still drive an automatic.

The kids wanted to go karting yesterday and I said yes. I figured if I could get in it I’d be fine.

Just walking around the place had made my leg numb so by the time I was in the kart I couldn’t control it. Leg foot kept resting on the left pedal, which in a kart is the brake. I came in after one lap. I used to be good. Used to race cars. Another box ticked of thigs I can no longer do.

Trivial compared to losing my road car, as you have just done. Just saying that I’m on the same path as you, just a bit further behind. We must all be strong and concentrate on the things we can still do.

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Hi Tingly,

Your post brought a tear to my eye, I am so sorry that you are feeling so naff. The frustration at the restrictions imposed by this poxy disease is enormous. I wish that we could offer a tangible solution. Sometimes a ‘rant’ is as good as it gets. Are there no local organisations that could offer to take you out for some kind of visit? I know that the effort involved can be far too much but the enormous benefit of getting out to see nature and beauty could make it worthwhile.

I am happy to share pictures of old adventures, but only if beneficial, I would hate to reinforce your frustrations.
Sending virtual hugs and best wishes.
Mick

Thanks Mick,

I don’t think it would help. I can kind of deal with it if I convince myself that there is no outside. People aren’t walking, talking, driving, meeting friends etc etc etc. I just don’t need to see reminders that there is in fact a world out there!

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I drove an automatic for the last three years with hand controls and it was great.

I have nystagmus now. When your eyes are gone there’s nothing you can do

Hello Tingly B, belated birthday wishes for last week. I’m sorry that you’ve been feeling so housebound, it’s a tricky one (I know). I had to let the car go in 2015, partly because of eyesight problems but sometimes when I think back to it I just feel so lucky that there was no road accident look back on. I’ve nothing to add to Sue and the others but how far out of the house can you get under, your own steam? Maybe there is one small incremental step beyond that?

My nystagmus is bad and I can’t see well enough. I’d go out on my scooter but I can’t see dropped kerbs.

I really don’t feel safe going out on my own

Can’t thing of anything to boost your spirits right now I’m afraid However I can sympathise with you with the drving stuff. I’ve been driving since I was 17, 2 weeks after birthday, 41 now. Had been driving for a living test driving until MS complicated that. Am still driving but not for work, well not right now due to relapses but will get to that later. Didn’t really use the car much after I stopped working maybe 1-2 times a week and not very far due to bathroom concerns and double vision worsening throughout the day to the point that glasses I have wouldn’t be good enough.

Several years ago some young… to kept it civil lets say idiot who was too busy on his phone to notice the slight kink in the road mounted the kerb hitting my parked car writing mine and his car off.

Wasn’t using it much anyway and could get a lift to the hospital so I didn’t relpace it. 18 months later and stuck in due to Covid I got another. Not as nice as the one written off but at least it drives. Use it once a week to shop. Though I’m now on my second relapse since July. First included major Diplopia/Double Vision. Sight was just about back to normal and I’ve relapsed again with Optic Neuritis this time. Car hasn’t moved, I’ve been sitting in it once a week and running the engine so battery doesn’t go flat.

Considered selling it but it’s parked under a tree and desperately needs a wash…I’d tire before I finish soaping it so hoping Optic Neuritis recovers enough so I can drive legally and take it to a car wash though I’m prepared and expect it won’t heal that much so may need a car valet to come to me. I get scared now anyway. Been driving again for just over a year and can’t handle roads above 50mph or Coventry Ringroad which is 40mph without getting scared. Saying something when I’ve done 150mph round banked bends all day for weeks when I worked driving.

I’ve been back living with parents so car is pretty much my only independance nowadays :slightly_frowning_face: Decided if I do end up selling my car I’m going to buy a steering wheel and some driving games for my Playstation with some of the money. May not be able to drive and if my vision is screwed it really won’t matter crashing in a game as it’s no damage or injuries. Got a old driving game during July’s double vision and whilst usng a controller is not a steering wheel I didn’t do too bad with uncorrected double vision and managed to complete it. No getting scared drving above 50mph either :grinning:

Not sure if you could use a steering wheel or even a controller but if thats something you’d consider trying maybe it’d help compensate with the lack of driving to a degree

I have nystagmus. I can’t see anything more then a foot away from my face so thanks for your suggestion however it wouldn’t be possible.

Hello Tingly B
I just want to tell you how much we are all together and often feel as you do right now.
I am not at the stage you find yourself in but have lately had quite a dip in health.
I tell myself to focus on what I can do and not dwell too much on what I can no longer do.
Here always for each other and sending a virtual hug your way.
All my best wishes.
Mary

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Hello Tingly B, what kind of scooter have you got, I’m interested to hear about it?

I have two. I have a Travelscoot which is extremely easy to transport and very easy to handle but it’s really for shops. It doesn’t fare well in the wet and needs a flat concrete terrain.

I have a Breeze off road scooter which needs a trailer to transport and as a result it lives at my dad’s and I’ve only used it once.

Both require me to be with someone who can be my eyes. I shouldn’t really be on a scooter as I can’t see enough to drive.

Yeah I see that now that you’ve pointed it out and I’ve re-read it. Must have been in one of the many Optic Neuritis blindspots. Should have moved around some or just closed my left eye when reading. My bad :frowning:

Optic neuritis never went away for me leaving me with blind spots.

I now have nystagmus. It’s hell. To the point where I wear a blindfold at home and am learning to be blind because looking out through these eyes makes me want to gouge them out.

Crikey TB, that really does sound horrible. I looked up nystagmus the other day when you first posted this thread and thought then how bloody hard it must be to live with.

I don’t watch television now because I can’t remember for eg TV series. So I read, but I don’t remember what I’ve read either. So there will come a point where I can’t see the point in books.

I do end up spending a lot of time on here, because I can for some reason (!?) remember stuff to do with MS. And I think it helps me to help other people. Plus I get the chance to be very silly from time to time!! (That makes me happy!)

Do you listen to music and/or the radio? Maybe audio books? To be honest, I’ve tried listening to books but tend to fall asleep and lose the plot!! (Some might say I lost that a long time ago!)

Sue

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It’s extremely hard to live with.

I can make it ok with illegal substances and despite me metaphorically screaming at them about it, doctors have labelled me a druggy and don’t want to know. So I’m going to get through my degree without their help. Needless to say there are no medications they can offer me.

I listen to a lot of podcasts. Unfortunately/fortunately there isn’t a lot wrong with my brain and I absorb science like it’s running out. I’ve got two years left until I earn my degree and I got a distinction last year so I’m on track for a first or at worst a 2:1.

MS has taken my hand writing and my eyesight not to mention my concentration and it’s giving me a lot of fatigue but you can be damn sure I will graduate.

And then if I can’t get a job that accommodates me I’ll kill myself but I’ll worry about that in a couple of years. And don’t think I’m joking because I made my peace with that as soon as I got diagnosed. What I’ve got is turning out to locked in syndrome. I’ve planned my funeral and there’s money in the bank to pay for it.

My degree is all I have in my life. I started it before I got diagnosed. I completed 3 years, and then I got diagnosed. I had a 5-year break and then sat down with myself and I said it’s better to try and fail than never to try at all and here I am earning distinctions. I’m never going to be able to get the job that I was originally aiming for, but that doesn’t mean that I can’t get a job involved in the field.

Otherwise I would have nothing to do with my time. I have no real friends or family and no partner. Without my cat I would be alone and over lock down I came pretty close to ending it. She gets me out of bed in the morning and keeps me going. She’s my best friend and my confidant. The reason I moved here was to be close to my uncle and a week after the move he killed himself and I can’t wait to see him again.

So it’s not all bad. I can learn and feed my insatiable appetite for scientific knowledge. I just can’t leave the house ever again.

Sorry Sue that makes it sound worse than it is.

I’m really grateful that I can still study even though it’s long and hard but I will get there.

I just hope some job wants me bad enough to provide me transport etc as I am afraid for the future and I don’t know what I will do after this…

But none of us know what’s around the corner eh! Just got to try and stay positive and get to graduation day 🧑‍🎓

Being honest, I get it. Sometimes wishing it was over happens to many of us.

Personally I bloody hate what’s become of my body. I’m so ‘needy’ all the time. I moan at my husband for not pulling my pants up right. Honestly, I cannot believe this is what my life’s become.

I am a paid up member of Dignity in Dying. A full time member of the right to die lobby. I’m scared stupid that I won’t be capable of taking the action needed when life becomes intolerable.

So yes, I get your frustration. I’m with you. Sometimes you have to let the beast that is your utter horror at what’s become of your life out. That doesn’t mean you’re about to end your life tonight.

At least not until you’ve attained your degree. To retain that ambition, or desire to achieve that, is so important. To get that will be a massive thing. I admire that in you. To retain that wish to study, to complete the degree, whether you get a first or a 2.1, it’s the degree that counts (obviously the grade is a big deal and I don’t blame you!)

And if the illegal substances make your life a bit easier, then good. I’m a firm believer in whatever makes your life easier is OK.

So with a smoke and a cat, with an essay in the bag, hopefully there are moments that aren’t completely horrible for you.

Sue

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