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The Dreaded "R" Word.

Like many other people, I am currently experiencing an MS relapse, which, whilst I know is not the end of the world, nor even anything like it, I am struggling to deal with. Without wishing to bore anyone, I was diagnosed last October after almost a year of being pretty much ignored by Doctors and being told that my symptoms were in my head due to stress. I finally managed to switch doctors and suddenly everything changed. Within weeks I was referred for an MRI and finally diagnosed with RRMS. Strangely, this came as a relief to me, at least now I knew what was going on. After a relapse in January, things settled down and I’ve enjoyed a period of good health, until last Thursday. I managed to keep things to myself until Sunday when the changes in my balance etc became too obvious to hide. I then had to tell my husband that I thought I was having a relapse. Doctors appointments on Tuesday and again yesterday confirmed it. For no reason at all, I felt that the bottom had fallen out of my world.

Some many months of good health had allowed me to almost forget the MS, although my husband tells me that I have been in denial about it, which may or may not be the case, I just don’t know. I know that Relapses are all part of living with MS but I’ve been well for so many months that, stupidly, I was stunned to have a Relapse.

I know that it is silly to be feeling like this but I just can’t help it.

I would love to know how other people deal with it.

Struggling!!

Toffee.

Oh love, I`m sure so many others with RRMS will absolutely identify with what you are saying.

I dont have MS (was wrongly dxd with PPMS for 11 years), but I do take an interest in those that do.

Have your much needed vent on here…family and friends will (hopefully) be supportive, BUT no-one knows how frightening and debilitating a relapse can be, like those who experience it.

Hang in there hun, for better days, yeh?

luv POllxx

toffee

love the name btw!

firstly its not stupid! all u r experiencing is all quite normal (whatever that means!)

u ask how others cope? for me, expect the unexpected!

thats not flippant but very true. i have had ms over 9 years and not much surprises me any more. it still hurts and i am constantly adapting on a daily (?minute?!) basis but whats the alternative-become angry, bitter and resentful? no thanks then no-one would have time for me and quite rightly so!

vent on here, scream do whatever you have to in order to get through each day.

take care, ellie

1 Like

Hi toffee,what your feeling is normal. i still feel surprised with MS and ive had it 22 years… i went 7 years without a relapse and i really thought that i would never get another one,

but boy when i did i just couldnt believe it…it lulls you into a false sense of security quite a lot…i am now secondary progressive and you dont usually get relapses when you turn secondary progressive…but i still get them.they are just more severe and last longer now…

J x

relapses are indeed a kick in the crotch. but they are the precursor to the beloved R word: REMISSION!

it is a fact that the enjoyment of life’s peaks are enhanced by the endurance of the troughs.

your brand of MS is not progressive and so good days, better days are in your future.

to quote the phrase that i push through my brain whenever hung over: “this will not last forever!”

in the meantime, are you on any DMDs to help prolong the time between these pesky relapses?

Hi Toffee,

please don’t think anything you say is silly, of course it’s not! With RRMS sometimes the symptoms do seem to hide away for a time, just long enough to lull you into forgetting they’re still there, then jump up & bite you on the bum when you least expect it! So you’re bound to be a bit shocked by what’s happened to you now. Maybe it’d help to chat to your husband about how you’re feeling, instead of trying to hide it? Have you spoken with your neuro about DMD’s, that might be something to think about. I know at the moment your world has collapsed, but try to remember that you’re not going always feel this bad, things will improve. See if you can get to see an MS nurse too, they are worth their weight in gold! And remember that if you need a rant, come on here…everyone knows exactly how you’re feeling.

Rosina x

Oh Toffee

I can totally relate to this one. I went 4 years without a relapse and although I still had good days and bad days on the whole I felt reasonably well so I did forget how bad things can be. Then I began to feel more fatigued more often until I was out shopping with my son one evening and bam I couldn’t walk! I had to phone my nurse at hospital the next day and ask for steroids.

Like you, it really came as a shock and my emotions were all over the place for a while again. It was almost like when I was diagnosed and it was like going through the grieving process again. The whole anger, denial, acceptance etc thing again.

Like the others, I would say that what you are experiencing is perfectly normal. I went through another dip when I then had another relapse and my neuro said I would need to change DMDs. I clearly don’t cope well with change !

One day, perhaps I will learn to cope with this condition. It does get better again of course. That’s the remission part. I’ve been well now for 10 months so I’m enjoying life while I can and making the most of it.

That’s why this forum is so invaluable. It’s there when we all need a bit of support. Come on here and have a rant whenever you need to.

Hope things improve for you soon, hun

Tracey x

Hi Everyone,

Just wanted to say thank you for all of the supportive messages. It’s been a huge source of comfort to me.

I’m slowly adjusting to this relapse and trying to get my head around the (hopefully very temporary) change in my daily life. I know that life will, at some point, return to normal (or as near to normal as MS allows a person) and I’m striving to be as optimistic as I can, although it is tough, as you all know.

Thanks again, your support means everything.

Love to all.

Toffee.****