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What one thing about MS would you want everyone to know?

Hi,

I’ve been asked to talk about MS and obviously my point of view is just mine and I’m lucky; RandR MS, bladder, bowel, pins and needles, heat intolerance, fatigue etc are all problems I deal with on a day to day basis but I look ‘normal’ and people are very surprised to hear I have MS. There are so many parts to MS which make life difficult but I was wondering what you guys feel is the worse one for you?

I’d like to give an honest talk but can people cope with tubes in different orifices!!!

Thanks,

BFx

Hi BF, I think that point exactly, that we can look perfectly ok but doesn’t mean we feel it! And also that it’s different for everyone and there are different types.

Good luck with the talk (or maybe as they say in the theatre ‘break a leg’). What a great thing to do! (the talk I mean… not breaking a leg…

Pat x

Gosh, Pat took the words out of my mouth!

I was already thinking the same, when I’d only read the title of your post, but not yet the content.

Then I saw you’d mentioned yourself that you look “normal”, and most people are very surprised.

Of course, that’s not true of everyone, but I think “normies” need to understand that it’s hugely variable, and that many of our problems are hidden, or perhaps only there sometimes.

Most people I tell are so surprised that I sometimes wonder if they think I’ve got Munchausen’s or something (psychiatric condition where the sufferer feigns illness), rather than MS.

Nobody has ever accused me outright of lying, but sometimes you wonder whether the unspoken thought is: “Why would a healthy woman like that say she had such a terrible thing?”

I think the popular expectation is that somebody with MS would be very visibly disabled - and of course, many are. But I don’t think there’s much awareness of the subtle and often hidden nature.

Tina

I’d say pain, as many people do not realise that pain can be a symptom of MS. Some pain I can manage (fortunately for me) such as burning legs which have been with me for around 10 years but other pain such as the knife like pain in the middle of my back, has not been as easy to deal with. Also ‘the hug’, muscle hug is with me most of the time and I just wear baggy clothes and rarely wear a bra. ‘The hug’ when nerve pain is involved has left me rolling around in agony for around an hour and nearly calling an ambulance.

Good luck with the talk BF.

Wendyxx

Hiya,

Apart from the usual having to give up large chunks of my previous life because I can no longer do them (going dancing, walking my dog for miles, running, working, etc). I’ve only recently realised how expensive having this stupid disease is! I don’t know if you saw my earlier post, but…

I drive an automatic car - more thirsty, and more expensive overall than a manual

I live in a bungalow - more expensive to buy than a house with stairs, although I rent mine cos I can’t get a mortgage on what I earn - more expense.

I’m giving up work soon

I use my tumble drier more often than I would if I could hang up washing outside

I bought a mobility scooter so I can walk my dog

I’ve recently had to replace my plates and glasses because I smashed them all due to being clumsy through MS (I bought plastic ones this time)

I pay Tesco to deliver my shopping cos I can’t go round a supermarket and then put the shopping away when I get home.

I am constantly buying flowers or making cakes to say thank you to friends who have done something mundane to make my life easier (cleaning my house, walking my dog, etc)

Good luck with your talk,

Luisa x

Hi, I have obvious walking problems, my walking is very poor, the best I can manage is with my push along walker, or if I don’t have that, I always have to hold on to something. I think the assumption is that because I can’t walk and I have ms I must be very ill but other than my poor walking I am absolutely fine, I’m not in pain, I don’t suffer fatigue , I don’t feel in the least bit ill. I sometimes find it hard to convey to people that I can’t walk but other than that I am fine and I can run my household, look after my children etc. Hope your talk goes well. Cheryl:-)

It’s not fatal

Wb

Will someone please remove this Elephant from my foot so I can walk normally he’s really making me tired?

Good luck with your talk.

Janet

I think the one thing I’d like people to know is IT HURTS!!

The pain I experience when trying to pick up my twin grandsons:

  1. the pain in my heart when I look at their faces as they wonder why I don’t pick them up like their other grandparents.

  2. the pain in my arm and shoulder (my only good one that is) that lasts for days when I capitulate and try to pick them up and cuddle them like a Mamma should!

  3. the fatigue I feel after trying to keep up with them for just a couple of hours - this is lasting for days.

Would I rather not see them? NO WAY.

Try putting these feeling into words and pictures. The limp and useless arm I can cope with but the heartache hurts.

Ann

Hi all The inability to walk very far any more. Teresa xx

The fact that sometimes people don’t believe me about my symptoms and therefore i don’t get the help i need. This includes family,friends,my GP and even my neuro! This means that i now tend to suffer in silence but this can be an incredibly lonely place to be.

Teresa.x

That I havent got dementia because I forget big chunks of things,we have already talked about this is the most frequent comment in our house.

Pip

There’s a sort of three-in-one with MS in my case.

No one day is the same. It’s very frustrating and a bit depressing.

On a bad day, I have lots of nerve pain, which is linked with fatigue and balance/eye focussing problems.

With RRMS, I have days when it’s stable and I can plan ahead, but there are no guarantees.

Stupid disease.

Fatigue, the hidden symptom, that few understand, other than fellow MS suffers.

Take care.

Chris R.

I. El. (Eng). (Rtd).

I know its going to be a bad day when I get out of bed and miss the floor.

fatigue! and pain, what doesn’t kill you makes you stronger

For everybody its different, every day is different, and just when you think you have a handle of how its going to behave it does something stupid again and you have to adapt to something new (its a bit like being a parent to an unruly child).

Hi BF

I thought about this for quite a long time and I think the one thing that I would like to get across is FATIGUE.

So many people seem to suffer from it and yet it is hidden. I was a teacher and found that because everyone had been to school they considered themselves experts in education. It’s much the same way with fatigue, everyone’s been tired at one time or another so they think they know what you mean. They need to know that a sit down and a cup of tea won’t sort it out and that fatigue is to tired as shed is to block of flats.

Jane

Thank you so much for such a wealth of responses and I find myself associating with so much of what you all are saying. I suppose it was a stupid question really as MS is so diverse and there are so many parts to talk about that you can’t really pick one…if only it was that easy!

I shed a few tears reading AnnAlf’s response as I can’t always do the things other mums might do and there’s a part of my heart that breaks whenever this happens. If everyone could live a day in my brain and understand the psychological as well as physical limitations MS leaves us with I am pretty sure people would appreciate and enjoy parts of their life they take for granted.

I like to think of myself as lucky, not to have MS, but to be able to appreciate the here and now, as MS leaves you knowing that tomorrow might be alot worse than today and so to enjoy what you have now.

Thank you again for your time and responses, your help is as invaluable as ever.

Kind regards,

BFx

For me one of the big things is the amount of extra hassle it can make to simple trips - is somewhere accessible, will there be a dropped curb for the wheelchair, will there be a toilet, if I’m somewhere where’s only an upstairs toilet do I think I’ll have the strength to walk up the stair in a hurry if I need to, if I have an ‘accident’ what will I do, if I’m going away for the weekend or out for the day will it be too tiring for me, if it’s summer will it be too hot for me to go out… Nothing’s simple anymore.

Dan