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Suffering. Lonely. Need help

Hi all, I’m really struggling now. I got diagnosed with MS 7 years ago. In that time it’s taken my ability to walk, my ability to write, and my ability to see. I’m 36 and housebound because I’ve lost my driving licence. I have no support network, and nobody to help me. I have carers twice a week and that is the only people that I see. I have secondary progressive MS, I’m struggling, and in the last couple of days my arms have got really weak and I can barely lift anything. I don’t know what to do or who to turn to.

I woke up last week with quite severe chest pains, but after a couple of hours they stopped. I rang 111 in the morning and my GP came to visit me. They both told me that if it happened again I would have to get urgent medical help and ring 999. Last night I woke up with the same chest pain. I didn’t ring the ambulance, because if I end up in hospital I have no way of getting back. The nearest hospital is 30 miles from here and I have no transport and no help so I will just be stuck there. I have no money to pay for a taxi. I’m really worried about myself now but there’s nothing that I can do. I have no friends in this area, and my family repeatedly let me down and I’m now at the point where I don’t want to ask them for help. I am on my own in the house and apart from my carer I see nobody. I am lonely and sad and I don’t know how long I can carry on with this. I don’t want to go onto antidepressants as I spent 6 years on them and I don’t see a sticking plaster as a solution to this problem which I will have to live with forever. I’ve also been on the council housing list for 2 years in the highest band I can be waiting for a wheelchair-accessible home. They’ve told me that I’m waiting for somebody to die and that in the meantime I just have to manage. I struggle around on my feet and it hurts, it takes a very long time, and I’m really sick of it now. Because of the length of time it get takes me to get anywhere on my home I frequently wet myself and soil myself because I can’t get to the bathroom. I don’t feel like I’m thriving, I’m basically surviving and and it’s making me miserable.

If anyone wants to be my friend, I’m 36, I’m a nice person and I need people to talk to. Thank you for listening

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Hello @Tingly_B

It sounds like you are going through a tough time and it makes it difficult to see very far ahead.

With regard to going into Hospital and then getting home again, the hospital should be able to organise this. The patient transport services teams should be able to get you home. Admittedly you may have to wait at the hosp for a bit longer than just walking out (maybe the morning or a few hours) and you may go for a bit of a ride on a day ambulance whilst they drop off and pick up others but they will see you right to your door.

We’re a friendly bunch on here so you’ve already go a number of new friends who understand the trials and tribulations of MS. Loneliness can be a challenging thing though.

If you are ever feeling lonely or down then the Samaritans will always lend a non judgemental listening ear. They are free to call from any phone and are available 24hrs a day, 7 days a week, every week of the year. Their number is 116 123. They aren’t there just for people contemplating suicide as many people think they are.

Keep talking on here and others will join in, we maybe suggest some things that might or might not work for you but we will always be sympathetic to your needs.

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Hi Tingly

That’s a whole ton of stuff to be dealing with, and anyone would feel like you. After I was diagnosed, the MS was very aggressive and within 18 months I found myself needing a wheelchair all the time, in pain, awful fatigue, incontinent. It was such a dark time, with no hope. Somehow God got me through it, even though I’d given up on Him, and I know I wouldn’t be here without Him

As Cheetah said, the hospital will be able to organise transport for you to get home from hospital. I’d recommend taking antidepressants. As you say, they won’t take away the problem - but they will help you to handle it. Ask your GP for a referral for counselling though - someone to help you process stuff could really help. And ask for a referral to a continence nurse too. It’s probably worth starting to self catheterise or have a suprapubic catheter fitted, to help with your bladder (I have an SPC now, and it’s made things so much simpler). Regarding your bowels, we’re most likely to have a movement within 20 minutes of eating, so it might be worth being near the loo after eating, in case.

Is there a local MS Society branch near you, or MS Therapy centre? They may well have groups you can join, to chat with people who get it (probably on zoom now

Dan

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HI tingly badger wondered where you had gone.

as others have said the hospital should be able to get you home.

as to council can you not downgrade from need with adapted for now as some places can fit a wheelchair. then once you have moved i would recommend sheltered accommodation as you will have lots of people around you and never on your own, so many nosey neighbours lol. but then you can get your MS nurse and team to organise OT and perhaps they will get you adapted.

many homes can become wheelchair accessible with just ramps.

I have moved again and now my TEAM want me moved to adapted bungalow i know it will take time so i have organised myself already around the place. (see post moving into wheelchair).

I think you answered it actually. Is it your own home or council? not sure where you live but you should have audlt social services team and they will come and assess you, and help you put things in place, and suggest to you transport and other things.

I am same housebound on my own. I have daughter 5 miles away rarely see as she is always busy looking after her horses, and another one 20 minutes away who cant drive at the moment as she has hurt her knee. then of course with covid it didnt help.

Its left a lot of people alone and isolated. I am 70 you can message me anytime. are you on facebook as this is my home now. my friends on there most never met support me every day.

sorry you are having chest pains could it be hug? i have sometimes i always check my stats i know ha ha Dr Kildare. I take my BP and my oxygen levels and pulse. its always normal, so i put it down to hug and or anxiety stress. BUT always if your not sure get seen. ok.

as others have said hospitals have a duty of care to get you home.

p.s if your council what about an exchange?

I feel for you. everytime i want to go out i have to find someone to take me. now i am deemed housebound so doctor comes here, but i have to get my dog to vets what a phaff trying to do that as i need my wheelchair only my daughter can lift it (its not that heavy) and i am too scared to go on my own in a taxi. I have no confidence.

I feel like a prisoner everyday. I get sick of this BEEPING disease as it has robbed me of so many things, i try hard not to let it but it still does.

glad you found your way back to us. xxxx Sue will i am sure be chatting to you. xxx

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Hi Thingy,
So sorry you are suffering so much at the moment. I also have SPMS and it hard. Really hard! There is help out there.is there an MS centre near you? They will have a range of things to help, also meditation. I find that calms me down and enables me to cope a little more. Take care!

Hello, sorry what’s the name and where abouts in world are you? :grin: Happy Monday!

Hello , I’m so sorry to hear that your ms has greatly affected you , unfortunately it’s the cruel reality that ms has the potential to rob us of so much , and that in itself is heartbreaking & soul destroying:((

I was diagnosed with ms back in 2007 and I have a lot of problems with walking & mobility, along with spasticity. I’m trying to work on building strength, but some days I get so fed up with the state of my health, and feel down in the dumps (something I’m sure most of us can relate to).

I’m sure the hospital can arrange transportation for you, also please call the ms society to get some advice from them. There’s also a ring and ride service which is a door to door service that you can book for a small charge . Please check if ring and ride operate in your area.

I think age uk also do a door to door transport service for those who are elderly or have mobility issues, so that’s another for you to consider.

Also please see if there is an ms centre near you ,it would be great for you to socialise with other people .

And last but not least please keep posting on this site , we’re all here to help each other !!

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@Silver_queen lovely post hun.

Reality hit me hard yesterday. My dog has a lump under her belly, been there awhile but i have noticed it has grown a little. so i made appointment with vets.

That was the easy part.

Finding a way to get there was the challenge. Not many can put my wheelchair into thier boots. either not big enough or not strong enough. so finally the vet agreed to meet me in the car park and holding my breath my daughter said she would take me. Holding my breath because she has let me down at last minute before. she lives off grid with numerous animals and sometimes she has emergency so cant take me.

anyway that worked out ok. but when we got to the vets and the vet came out to me and took my Lucy away it broke my heart seeing her being carried away like that. I felt i had let her down. Then when the vet brought her back to me she was pulling her to get to me all happy and i got my cuddled and just then for a split second all was right in the world again.

when i got home i sat in the bathroom and bawled my eyes out. I am just SICK of being limited. sick of my brain sapping my confidence, the monkey chatter on my shoulder who keeps telling me dont do it you will just suffer.

If there was a fairy godmother I would ask her, please just one day give me the strength and courage to just be normal again.

Mine started 2000 and over the years drip by drip its taken the old me away.

OK i put a good face on it as others need hope but sometimes i just have no strength left to smile.

I feel kind of that my journey is nearly over. But something inside of me says come on girl fight, so i try. No one wants to read depressing posts they want positivity. I positively try to be positive but even the hardest of us sometimes crumble under the weight of all this trying.

xxxxxxx being disabled is made way too hard. for example yes you can get transport thats if it turns up in time. then they collect you at say 9am, and do a round robin before you even get to destination this can take 2 hours and peeing oneself. then you sit and wait to be collected after an appointment and again wait wait and round robin again. so all day for one appointment.

if i had the money i would start a taxi service for disabled people. But a WAV (wheelchair access vehicle), and collect disabled for a small charge and take them to appointments. Many places I visit too like the opticiens, what a hoot. my eldest took me and i had my electric wheelchair. first obstacle no access to get in no ramp. when we finally got in, no space to move. that was a bust.

everything is designed against us. even my SHELTERED BUNGALOW which should have been designed for disabled elderely was designed the opposite way. everything is out of reach. to get to the laundry(not allowed washing machine), is like a mile hike up a slope lol and the rubbish area. the paths outside are all on slopes and bumpy, the scooter storage is trek to get too. big gate to get outside to take the dog for walk, try to open it driving a scooter. Nah being disabled sucks at the best of times, but hey ho we are meant to smile our way through it all lol.

This is what makes me smile and has gotten me through some bad days, my kids in kenya i am supporting through the pandemic, i paid for them to have bananas with their gruel which they have for lunch. It makes me realise what the hell have i got to be miserable about.

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Hi Tingly

I am sorry that you are having such a tough time. You are welcome to message me anytime although I am old enough to be your Mum and have two daughters just a little older than you!

Have you looked at Shift.MS this site tends to cater for younger people and they have a buddy network so might be worth a try.

Take care

Sue

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