Forum

Don't know what to expect?

I’m still fairly new diagnosed. Somedays are bad, some are good (ish) but I know there are people with MS a lot worse off, then again I’m only 25 so I’ve got a long way to go. I try to be as positive as I can but the unknown scares me. I don’t know anyone with MS apart from a neighbour of a relative of mine who I knew when I was really young. All I can remember is him “existing” in his wheelchair for years, not able to do anything and it scared me then. He died last year at 56 years old as a result of a serious chest infection (so I’m told). All I do is worry about the future. I know it doesn’t help but I can’t stop. I’m worried ill end up like that poor guy or worse. I don’t know what to expect for the future. I don’t know if I want to know the worst case scenario but what am i facing here, how do I cope?

Hello hun.

as you are still newly diagnosed, your brain is running wild with what ifs? and how will I end up?

We have all or are all still battling with those thoughts.

There are folk here in their 70s, who have had MS for donkeys years. Many of them dont use a wheelchair …ever.

Then there are those who do use a wheelie full time and still enjoy life. I am one of those.

I never imagined my life would go the way it has. I have lived with a disability for 15 years now.

What I tell myself is this;

Right, I cant alter the fact that I cant walk, but what else can I do? I search for answers in ways to manage things more easily.

There are folk out there who`s job it is to help us. And i seek them out. These could be;

Occupational Therapists…you can ask for a home assessment. They come up with ideas we may never think of.

Physios…they dont only help with exercises, they are full of ideas too.

MS Nurses…they can refer you to other agencies to help us.

Your mind is stuck on the sad experience of your relative who died at a very young age. You dont have to follow in his footpath…but please try not to dwell on that so much…it wont help your mood.

Life has been very cruel to hit you with MS at such a young age, I know. But there isnt a single thing anyone can do to change that.

What we have to do is not battle against it…it will always be there, but instead we must accommodate it into our lives and make the best of it. We must pace ourselves, in an effort not to over-do it.

I always believe in putting my energy into good thoughts. i cant afford to waste my precious energy in negative thoughts. Of course there are times when this is extremely hard to do.

But we HAVE to survive somehow and survive you will…just give yourself the chance, yeh?

Keep coming here for support, advice and friendship, yeh?

much love,

Pollyxxxxxxxx

Hello hun.

as you are still newly diagnosed, your brain is running wild with what ifs? and how will I end up?

We have all or are all still battling with those thoughts.

There are folk here in their 70s, who have had MS for donkeys years. Many of them dont use a wheelchair …ever.

Then there are those who do use a wheelie full time and still enjoy life. I am one of those.

I never imagined my life would go the way it has. I have lived with a disability for 15 years now.

What I tell myself is this;

Right, I cant alter the fact that I cant walk, but what else can I do? I search for answers in ways to manage things more easily.

There are folk out there who`s job it is to help us. And i seek them out. These could be;

Occupational Therapists…you can ask for a home assessment. They come up with ideas we may never think of.

Physios…they dont only help with exercises, they are full of ideas too.

MS Nurses…they can refer you to other agencies to help us.

Your mind is stuck on the sad experience of your relative who died at a very young age. You dont have to follow in his footpath…but please try not to dwell on that so much…it wont help your mood.

Life has been very cruel to hit you with MS at such a young age, I know. But there isnt a single thing anyone can do to change that.

What we have to do is not battle against it…it will always be there, but instead we must accommodate it into our lives and make the best of it. We must pace ourselves, in an effort not to over-do it.

I always believe in putting my energy into good thoughts. i cant afford to waste my precious energy in negative thoughts. Of course there are times when this is extremely hard to do.

But we HAVE to survive somehow and survive you will…just give yourself the chance, yeh?

Keep coming here for support, advice and friendship, yeh?

much love,

Pollyxxxxxxxx

Hi Anon,

Unfortunately, the very unpredictability of MS is what some people find the hardest. We know we are ill, but we don’t know how bad it might get, or how we’ll be tomorrow, next week, or in ten years. All we have are the statistics, which tell us only a minority of MSers end up as full-time wheelchair users, and about a fifth will trace a relatively benign course, which does not result in severe disability.

Unfortunately, statistics are only of limited use, because they can’t make predictions about our own individual case. We don’t know where in the statistics we will fall. But it is perhaps some comfort to know that dying at 56, after years already in a wheelchair, is definitely NOT the average or typical scenario. Nobody can promise you (or any of us) it won’t happen, but the odds are rather good that it won’t. Of course, I’m in no way trying to make light of MS, or pretend it isn’t very serious or even life-threatening, for some people. But learning to accept you don’t know (and won’t find out, except with hindsight) which straw you drew is part of coming to terms with the illness.

I think most people try to face it one day at a time, which means accepting how it is today, and not dwelling too much on how it might (or might not) be in future.

Of course, that doesn’t mean closing your mind to contingency plans about what you’d do if things deteriorated badly - where to get help etc. But it’s important to get the balance right - not waste periods of relatively good health worrying what happens if it doesn’t stay that way. You will cope with that when it comes - IF it comes.

As MSers, we are more aware of the uncertainties of life. We treat reasonable health and long life as gifts, not a certainty. But (not to make you feel even more morbid), I’m sure we all know someone, or have at least heard of someone, who left the house in the morning fine, never to return again, because they had some shocking, pointless accident. Everyone’s life is uncertain - even people who think they’ve got it all mapped out. We’re just more aware of it than most.

Tina

x

Hello anon,

I was diagnosed last year at the age of 27. The way i manage to cope is by being ignorant towards my own ms. Not the best way to go but it works for me. Starting on dmd’s did help me settle into having ms, finally doing something about it. Instead of waiting for the next attack.

Their are plenty of horror storys about, but ms is very much different from person to person. I know someone early 60’s had ms since teens and very much fit and healthy.

It takes time to adjust to having an illness, but we get their in the end.

Goodluck,

Darren

best advicei had is to ‘live for the day’ dont look back,and dont look into the future either, make the most of what you have now,when i was diagnosed i told myself i wouldnt waste time worrying about something that may never happen,i said i would worry about it IF and when it happened,it worked for me,i didnt start coming on the forum until i really needed to.i was too busy living my life,and i wanted to forget about ms,for as long as i could,i am so pleased that i managed to,dont waste time on it until you absoloutley have to.

jaki xx

Hi,

You will find a lot of support here for you.

My Mother died of complications as a result of her MS some 30 years ago, at that time little was known about the disease. The internet has opened up forums and you can track the progress that has been made in slowing down the progression of MS by way of drugs/lifestyle changes.The next step is some form of cure, so try to keep active and positive as you don’t know what’s around the corner. My strategy was to build up a support team of Neuro, MS Nurse, friends and family and to live one day at a time. The forum is part of that support time and I really appreciate it, I am sure you will to.

All the best,

Peter