When diagnosed was your world over...

I know this could be a hugely variable question, just as ms in itself is, but when diagnosed did you think my worlds over, my lifes over, my futures gone, I’m only going to get worse etc… Has it worked out that way for you? Is it as you imagined, or is it not as bad as you imagined?

Yes, yes and yes. But I still don’t really believe and live in hope that things will improve and I get my life as I knew it, back.

Hi I guess you are asking these questions as this is what you are feeling at the moment - you’ve just been diagnosed yourself? I am sorry, it is a shock. We all go through a process of grief. Grieving for the lost you. Look up the five stages of grief, it may help. Just live for the moment - it is such a huge thing to try to digest all at once. Things will get better and you will come to terms with it but give yourself plenty of time. Days can be variable - most of the time I am OK but some days I wake up feeling down, feeling sorry for myself, feeling sad. I think this is totally normal. There are still loads of things to look forward to, you are still you. There are still friends and family in your future, children (if you want them), holidays and work. All these things are possible with MS. Do not give up, you can still have a normal life. Be kind to yourself and give it time, Teresa xx

No, I didn’t think that way either. In fact, crazy as it sounds, it was almost a relief! I’d been feeling ill for years, and was beginning to think it was a psychiatric problem. I’d suspected from time to time that I was ill, but never that it was MS (Rheumatoid Arthritis was one candidate that had crossed my mind).

So diagnosis was almost a lightbulb moment: “So that’s what it is!” Along with: “And you’re not mad!”

The realisation that I’d probably already had it for years was some comfort, as I wan’t dead or in a wheelchair YET, so I had every reason to believe it must be quite slow.

Since diagnosis (over two years) I’ve been feeling a bit more poorly, if I’m honest, but I’m not sure how much of that is down to knowing it’s something serious. I might be more on the lookout for things being wrong, if that makes sense? In some ways it was easier when I could still kid myself it was due to stupid things like my age, or hormones.

But that convenient fiction was getting a little hard to maintain - it was getting harder to avoid the conclusion that I must be ill with something - it couldn’t be just normal stuff that happens to everybody. So I suppose I reached the point where I’d have had to find out, sooner or later. I couldn’t have gone on indefinitely, thinking nothing’s the matter. Just relieved I wasn’t completely nuts, and suffering from hypochondria all these years. I mean, yeah, at one level, I wish it HAD all been in my mind. But I’m still relieved there’s proper evidence now, and a name for it. Proof I haven’t been imagining things.

Tina

I was dx in June 2012, but no I was just glad to have a reason for all my symptoms. Can’t say I don’t get my down days though. I can’t do all the things I used to as easily but have a dear friend with terminal cancer so feeling quite lucky really. I am sure the future may hold some unwanted surprises but the future isn’t here today so I will worry about it when it happens. In the meantime I see it as an opportunity to not put things off til tomorrow. Since being dx I have had my first ever horse lesson and flown by myself to France to see a friend. So life can be fun. Keep smiling : ) Mish x

My initial thought was of Jacqueline du Pre, so yes. When I found out that she had the most aggressive and (then) untreatable form of MS, my thoughts moved to wheelchairs and incontinence, so less so, but still yes. A rather brilliant counsellor helped me deal with that, but then life became a nightmare of terrible fatigue and trying to still work full time in a stressful job, so yes still. And then the light at the end of the tunnel appeared. I retired from work and set up my own business. Lots of rest, far less stress, my MS calmed down, I had time to spend with my family and friends instead of my bed, I took up old hobbies again as well as some new ones, and gradually life became more rewarding than it had been before MS.

MS means having to accept change and deal with loss as things become too difficult: basically being adaptable, but if you can do that, it is still perfectly possible to have a rich, fulfilling and happy life. It is NOT the end of the world by a long shot.

Karen x

This is great to hear guys cheers xxxxx

Hi, I agree with you saying how everything varies from person to person, but I think, for those who have waited an age to get their diagnosis, perhaps it was some kind of relief…to finally put a label on what was causing their problems. For some it may have relieved their feelings of going mad or no-one believes me. These folk may have had time to digest what was going on and they may have already believed they had MS. it may not have been the devastaing news it was for others.

Then there are those who received a very quick diagnosis…one that came out of the blue. These folk could`ve had a very difficult time coming to terms with it all.

Whichever of those camps you find yourself in, please let me say this… I may not have MS, but I do have an equally disabling and incurable condition, but I know a decent life IS still possible with such a condition.

I dont believe it shortens our lives (ok, sometimes it can…rarely), but it does change them from the life we may have imagined for ourselves.

I have been a full time wheelie for 9 years and i rely heavily on others around me, for which I am grateful.

i usually cope quite well with my lot, but occassionally i want a sulky duvet day and why not, eh?

Best wishes to you, whoever you are!

much luv Polly xx

Ah so true that everyone is different and there really is no correct way to react. It is however it hits you. I was a quick dx and went from nothing seemingly wrong with me (apart from a couple of previous ‘trapped nerves’ episodes) to losing all co-ordination use of right hand/arm, balance etc in march to being dx in June. Despite a quite quick dx I was still relieved. I think it also depends on other experiences in your life and whether you are naturally one of life’s optimists or pessimists…although even optimists are challenged at times : ) Mish x