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Hi everyone or anyone

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Oh this is great, actually found something to talk on but now
seems to be that many rules that I am unsure what to say….
My name is Annie, I am 55, I have had ms at least since I was 20, now I have end stage SPMS and I feel a wreck….what should I say well somebody please speak and I’ll say “hi” cause that bits allowed….

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Hi @annie1 welcome to the club no one wants to be a member of.
Please don’t worry about breaking ‘the rules’, so long as everyone is respectful and courteous, most things are allowed…

I’m sorry you have end stage SPMS, that must be really difficult to deal with. It sounds as though you are feeling really down, but you don’t have to feel alone with it all. People here are very friendly and will offer support as best they can.

Do you have any support at all that you can call on, and I’m not just talking physical support, emotional/mental health as well?

Please keep posting, someone will always get back to you.

Kind thoughts
Willowtree x

Hi Annie
Say whatever you like! Pretty much anything goes as long as it’s not about race, religion, politics or advertising something…

I have SPMS too but mine isn’t end-stage (to be honest, I’m scared to find out what that means in detail).

Start by telling us about yourself if that helps. It’s not a trophy but 35 years is an awfully long time to carry MS around with you. I’m on half that…
Graeme, 59

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Hello Annie

As Willowtree and Graeme have said, pretty much everything’s allowed. Just don’t swear, advertise anything, and generally be nice to people and you’ll be fine.

Many of us (me included, um quite a few times!) have been ‘moderated’ (had text removed from a post) for breaking rules. But let’s face it, some would say rules are made to be broken :face_with_symbols_over_mouth::laughing:!

You are very welcome to the forum. 35 years with MS deserves a medal. I’m up to almost 25 now and while I’m not at ‘end stage’, I’m a physical wreck too. (I started to detail all that’s wrong or just doesn’t work but it began getting depressing and boring so stopped!)

Sue

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Hi for getting back to me…
I’m hoping end stage MS just means it’s as good as it gets….
Just been pushed so fast around a shop, that now I am home I can’t see again - and this was the husband…!!!
I have so many different things now that have become problems for me,
I wouldn’t know where to start…
I would like to know if many of you have managed to stay married??
Cor it’s difficult….

Hello again Annie

Yes, I’m married. You and I are a similar age - I’ll be 55 in 2 months. And I got pushed around the shops by my husband this morning too.

When you say ‘managed to stay married’, how long has it been for you (ie the ball & chain)? I met my husband almost 5 years after my MS began although I didn’t find out about the MS until 6 months in to our relationship. We then got married 4 years later. This could be a completely different situation for you?? It’s still a difficult thing, remaining with your husband. He may not have MS, but he still has to live with the beast.

By ‘end stage’ MS, I think that tends to me something maybe worse (yes it might be possible!) than you and maybe me. Have a look at: End stage MS | MS Trust

I’m a full time wheelchair user, can’t walk at all. I have significant bowel and bladder problems and a whole variety of other permanent issues. I’m a long way from end stage though I can see it coming eventually.

You sound a bit (maybe more than a bit) cheesed off with life today. If you want to offload here, feel free. We don’t mind being a sounding board. There’s probably plenty of symptoms some of us will be able to recognise.

Sue

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Oh yes, sex! Apparently we can’t talk about sex either. How could I miss that one?

A shame really - talking about it is pretty much all I can manage these days…

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Hi Sue, my MS nurse told me I was this in a letter…I always take everything I’m told…best way when my memory doesn’t work as good as it once was…
I started with a very bad case of chicken pox when I was 18, never really felt like I’d gotten over it.
Well 37 years later I like to think, when I remember, that I do understand slightly better.
I never managed a career for being too tired or ill. Been married since 1994 and have 2 grown up little ones now! And 2 grandchildren!
I seemed to go through a phase after the schools summer holiday, of having a week in hospital then a few weeks of trying to rest and weeks later back to coping again.
I was diagnosed in 2014…
At last - I had been walking to school during nighties holding on to lampposts while dizzy. My eyes never seemed to focus….
Anyway thanks for listening to me I bet most have got similar stories.

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Who says we can’t talk about sex? So long as we’re not too graphic or use any gratuitous language.

Anyway, there’s far too many of us who can’t do it anymore so the nearest we get is talking about it (me included)!

Mbl00dyS takes far too much away from us. It’s a symptom of MS. If we can talk about numb feet, then I want to be able to talk about what else is numb!!

Sue

I say “Fuck” more often than I used to. Could this mean I have MS? :stuck_out_tongue:

Probably. I say boIIocks more than I used to. Do you think I’ve got it too?

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(Bet you get moderated :face_with_symbols_over_mouth::scream:)

i would have my hubby was with me from the start we believe 1999. but sadly i lost HIM in 2017 he had COPD.

I am PPMS. I am housebound. I dont go out as i cant not on my own anyway.

@Ssssue she has a wonderful marriage. I dont see why being sick should change anything in a way, it bought me and hubby closer together, as i could appreciate his limitations and he could appreciate mine.

I must admit i do swear more then i ever did. Maybe they should add that to the list of symptoms for MS.

Hi Everyone. I swear all the time. When ever I trip. That’s more times than I eat food a day. lol :laughing:. My Name is Glen. I am 55 and am told that they reckon I have had MS since I was in early 20s Found out October 2019 and December that year I had a bad turn. Having UTI again. So decided to give up work as was killing me. But the boredom is terrible. And I am sure I am Pissing my wife off. Sorry I swore. How do you find life with your partners. How do you handle them going away. I feel very lonely. I hope you can all help as its getting to me now. Sorry I sound a right case. G

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Hello Glen

Welcome to the forum. It sounds like you’re in exactly the right place. Excessive swearing now counts as a symptom of MS (see above).

Are you really bored now you’re not working? I don’t have time to get bored. But that’s because it takes so long to do anything. A minimum of a couple of hours just to get up, wash, dress (with assistance), eat breakfast and have a go at the crossword in the paper.

I’m sorry you feel lonely. Let us know what we can do to help.

Sue

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Hi Glen
We have much in common, give or take. I’m 59, so a bit older than you. Probably had MS since my early 40’s but only identified as such at the start of 2021, having been misdiagnosed with Lumbar Spinal Stenosis about 10 years ago. Never really had RR but a few CIS, then the MS became progressive in 2016 and I gave up work in late 2020 as with dodgy pins, trip hazards made construction sites unsafe places for me to be.

Like you, I’m pissing my wife off too. It’s tough on our wives as our immobility is causing them to make adjustments to their lives too.

So you’re not alone! :+1:
Graeme

Hi Graeme,
You sound like you have so much in common with me. When I was 23 remember getting really bad headaches and everything I sneezed it stank it was a smell that I have never smelt. I trouble with my eye. Stated falling over. And they did tests Then about 30 went to Canada to see my Uncle, had a limp going on plane and after flight stood up and couldn’t walk. And couldn’t walk for 2 weeks. Went different places for it. Stayed there 3 weeks so last week I could walk again. I reckon relaps. But loads went on and I had this no I have this until I was 53 and was able to pay private for a neurological Doctor and he sent me for Head and spine MRI and goes back and see him and he said you Have MS. 5 leisons in brain and 3 on spinal cord. And I am in SPMS.
I know I get on my wives nerves. I can’t do this and can’t do that. I have told her that she should leave and get a better life with out me. But she won’t go. She says she has married me for better or worse.
Now going to be a bit personal How’s ya sex life. I find it a let down. Do you take anything to help you in the bedroom. I can’t understand how I can’t perform but every now and again I will get morning glory. How’s that work ??? lol :laughing:
Glen

Hi Sue. Same here. I wake roughly 4am to 5am. Some times fall asleep and get up at 10 ish. And then usually stuck in front of TV for Homes under the Hammer. Then I go out to sink to do washing up. As I perch on a stall doing it. But I do find its boring as no one to chat to. I love to chat. I was a Driving Instructor so always chatting or trying to stop a young lad or lass from killing me. Lol. My wife said find a hobby like ya Dad did when he retired. So I going to get knitting needles and wool. What do you get up to in the day.
Glen x

Just wanted to say thank you for kind thoughts….think I’ve made history now with those.

Iam sad cause my life is too difficult for me now….February - I lost my Dad to COVID.
October - I lost my mum to Alzheimer’s….
I am the eldest of four, but since they took over parents care, they don’t want to know me now as my ms meant I couldn’t help with there care. So now I am alone :see_no_evil: