Feeling very down… Is there ever a time I can do things normally again? Been feeling bad since Christmas last year, with numb hands and arms and l’hermeittes…with other bits n bobs… And when I walk my legs go all tingly. Now, on a day trip out with mum to a food festival I kept falling into her… Can’t keep being like this, used to being up on the hills walking, biking and being daft… so much has changed in a year… Moan time, again, sorry x Jo
Huge hugs Jo Are you on anything like Pregablin for your symptoms? i currently have mobility problems but still try and keep as active as i can can’t remember what feeling ‘normal’ is too. its hard but try and stay positive.sending you positive vibes H xxx
I just wanted to write and say hello, I’m not sure if I can or know how to help. It may depend how long ago since you were diagnosed. I am sure you know each person is very individual with symptons etc. Things will probably get better to a certain extent-may be you are in relapse? I know its hard-I had 2 in 2 years and now on rebif 6years-no more relapses. I am sure you know after a relapse, things never get as good as they were but things do get better. I hope this helps. Claire
Hi… Had 3 relapses in 8 months, in which time I have always had certain symptoms that have never gone away. Only had first attack last Xmas, preliminary diagnosis in February, full diagnosis after 2nd relapse in may. … I didn’t know it was a relapse. LP and mri’ s all positive. Bit scary as I live alone with my 6 year old boy, who does spend time with his dad. Had last relapse for over 3 weeks now, getting worse. Start copaxone in next week or so when it arrives. Ms nurses are getting me something for pain on Monday… Can’t remember it’s name… Begins with a ‘g’ ??? Any help.??? Bit hard to comprehend sometimes, especially as what should have been such a fab day turned out a bit pants xxx Hugs much appreciated J xx
Hi Jo, can totally relate to this feeling lass, have been living with this more particularly over the last few months. It is difficult when you realise that what is normal is generally your baseline now! I am generally one who has a very positive outlook on life but cannot get past the point where I was so active and spending days in the hills and only able to look up at them and sigh! I have just come back from an area I have done a bit of walking in and thoroughly enjoyed greatly, not now though. Hmmmmmm! Anyway, not sure if I can do anything other than send hugs to you. Take care Willie
You moan away - there is plenty to moan about. The uncertainty of MS, and the unanswerable questions (will I feel normal again? etc) are particularly hard things to deal with. The immediate issue is the symptoms you are struggling with now (and I hope you see improvement soon), but underlying questions about simply having MS, and what does that mean, are always there, and hard to ignore, particularly on a bad day. It is easy to say things like, just make the best of every day etc, etc, although that is a sensible approach, but a hard trick to pull off, especially if you are having a day when MS is being too in-your- face, and (perhaps) not helped by the people who love you noticing how it is affecting you, and suffering with you. In the longer term, I guess we sometimes have to redefine ‘normal’! But there’s a good life to be lived, despite MS, so hang on in there. I hope tomorrow is a brighter and nicer day for you. Alison x
Hi Jo, Just wanted to add (((((((((((((((( hugs ))))))))))))))) to those already offered. Chin up eh? Anne x
Hi Jo I think pretty much all of us feel or have felt like you do. Ages ago my wife wrote a song that had the line ‘Everything’s going to be OK, but only when your definition of OK’s been redefined’. And that’s something I can really relate to. I’ve changed, and am still changing, what I mean by ‘normal’. I think that’s an important lesson to learn, but it’s still a bitch of a process to go through. Take care Dan
Dan’s wife has hit the nail on the head “redefining normal”. I find it profoundly depressing to think back about what I used to be able to do. I have had MS so many years now that I can’t really remember the “normal” me but I’ve only got to watch my daughter do a job in a few minutes that takes me hours to be reminded with a jolt. MS sucks there’s no escaping it but I try to think about the here and now - they say that the past is a country that you can’t visit and I try to keep it like that, I put my healthy self along with me as a teenager, a young mum etc etc. It just grinds you down if you concentrate on what is lost. Hope you are feeling more positive today. The sun is shining here in Yorkshire and that certainly puts a smile on my face. Jane
Hi Jo, Well if it helps, I’ve been in a similar situation. A year ago I lost feeling from my chest down to my toes, and in one of my arms - it was the most frightening experience of my life. And l’hermeittes happens regularly for me. Similarly, I had trouble walking - as I couldn’t feel my feet or legs! Of course the symptoms got better, as I’m sure they will with you … that being said, there is always something left behind. I agree with the others, that your definition of ‘normal’ changes with MS. I am grateful that I can go for a run regularly, but of course by the end of the run my legs are numb because of that attack, but that’s the new normal. My right hand has been numb for a year, so I guess it’s permanent now, but honestly I’m grateful that I can still feel my keyboard and work, as well as hold a pen … I never thought I’d be grateful for these things but I am. At least I can have a ‘normal’ work day, even if I’ll never be normal in the way I once was. You will feel normal again I think, but your definition will change, and that’s ok. Well it sounds like you’ve had a really tough year, with a lot to adjust to. But if you’re just starting copaxone (that’s what I’m on), you have something to feel hopeful about. I know when you’re in the middle of a relapse, it’s the worst, but this relapse will pass - that’s what they do. You’ll have better days. And I think it’s really healthy to moan, so moan away! Hope today is better for you, KK
just want to say thanks for all the hugs and words of encouragement. spent today doing “not a lot”, hasnt really helped, but had a bit of time to reflect on some of the posts on here… so thank you all . glad i found this place, so much more positive than some other places. jo xx