Hi everyone! Been a while since I have posted. Feeling a bit empty today. This day a year ago all the fun started with my leg and stomach going numb! I was since diagnosised in march witj RRMS. Since then i have started copaxone and just going from appointment to appointment! When i sat down this evening i just thought to myself did this all really happen? Well i ever come to terms with this? R do u just try and get by until ure next relapse then just start all over again? I have so many questions and no answers that it hurts my head thinking about it. Just wondering if anyone has any thoughts on this. I guess tomorrow I will put on my happy face and just get on with it as there is nothing else for it lol. Thanks just needed to write this down. charlene x
I think my first answer to the question in the title of your post is that it may depend on what you mean by ‘better’. Someone I know wrote a song with the lyric ‘Everything’s going to be OK, but only when your definition of OK’s been redefined’. That’s something I can relate to. The times when I try & cling on to what was normal in the past are often the hardest. Letting go is painful, and I can really fight it. But if I’m able to look forward, instead backwards at what I’ve lost, then I find more peace.
I can relate lots to the various thoughts going round your brain though. Generally in life, change happens slowly, and we like to kid ourselves that our futures are safe & predictable. But huge things can change with our lives now, and our futures have so much more uncertainty. And nobody likes living with uncertainty. It’s a huge emotional toll, and I think it’s important to get as much support as possible to help process it all, whether it’s talking with friends, journaling, counselling, or sometimes just having a good kick & scream in frustration at it all.
But I think things can get ‘better’. When I look back now, nearly 12 years since diagnosis, it can surprise me how much has changed, but one of the things that’s surprising is how much I’ve adapted without really thinking about it now. I guess us humans are incredibly resilient. When I was diagnosed I thought my life was over, but I’ve still been able to do loads. Like in the summer I completed a scholarship to learn to fly, which I’d never have thought possible. It takes time to grieve the loss of our old lives though, and grieving’s painful, with all sorts of strong unpleasant emotions like anger & depression. And slowly, over time, I find I’ve changed lots the things I value and appreciate and am thankful for now. There was a time a few weeks ago when I was going down the street in my wheelchair, past a few empty shops, rundown buildings, with a bleak grey sky overhead, and feeling tired & chilly. But then I looked up and saw some trees that hadn’t yet shed their amber & red leaves, and heard some birds singing. And while I could have lots to complain about, I couldn’t help but think that, actually, life can still be pretty bloody beautiful. And I was thankful that I was abe to think that.
You take care of yourself : )
i can’t do better than don’s lovely post!
i agree with him - try to find something to smile about each day, then move it to each hour. before you know it you’ll be smiling more than ever before.
a big problem when you are newly diagnosed is that nobody understands what you are going through.
try your nearest ms therapy centre, where you’ll meet lots of smiling ms faces, can have HBOT (hyper barric oxygen therapy), drink coffee and eat cakes, get a massage and loads of other things.
coming to terms with a diagnosis can take what seems to be forever but then you see a post like yours and realise how far you’ve come.
actually replying to posts on here is good for me.
take good care of yourself
Thanks Dan and Carole for your replies. I will just have to give myself more time to sort my thoughts out and like u say Dan change wat I think normal is lol. Just hard to do when people see u as being fine and have no idea of the complete train wreck u r on the inside. I think I will look into the ms therapy centre and see if there is one in N . Ireland as I have not been told about this before. Thanks again how u r all well x charlene
Good afternoon Charlene,
I live in Belfast and am a member of the Belfast Branch Committee. I first heard of HBOT after meeting another Branch member who told me that they have taken this type of therapy for their MS. I don’t know much about it, that is to say…how do you go about getting it and most importantly…(at least for me) HOW MUCH?
hi jonny and charlene
i go to the one in trafford, near manchester.
it is run as a charity and they mostly fund themselves.
we are asked to become members and i pay £30 a month (although anyone who is financially struggling would be helped).
for that subscription i can have as much HBOT as i want. can have other therapies mostly free or heavily subdsidised.
they have a neurological physiotherapist who is fantastic. a session with her costs £10.
you’d be better to track down the phone numbers for the centres near you.
you won’t regret it. i actually look forward to going.
Hi jonny I have just heard about this form this post and googled to see if there was a place near me. I live near newry and there is one there it seems to b a charity like carole has said but it doesn’t say anything about cost. I will have to ring them and get a bit more information on about wat they do. But it does sound like a good therapy, if it was too costly! Lol I am sure there is a centre in belfast and if not somewhere not to far from it. Hope u r well! Charlene
I attend my MS Therapy Centre in Dundee, Scotland - and this is the very first MS Therapy Centre that opened (1982). Great places, for therapies, support, advice, rants, coffee, cake & lots of laughs! Wouldn’t be without it. My hyperbaric sessions cost £7 pet session, well worth it, and well worth giving it a try if you possibly can. x
per session! X
People keep telling me I should try the hyperbaric therapy there but I’m claustrophobic Does it help? (not trying to take away from the original post, just curious)
I agree with Dan’s excellent answer.
I think the first year was the hardest for me because my first symptoms came on without warning and I was diagnosed just 3 months later when I had the second attack. Like you, I went straight onto a DMD before I had had a chance to ‘take it all in’ and life became a round of hospital appointments, self injecting and constant reminders of the interloper that was MS. What I really wanted was to bury my head in the sand and pretend it wasn’t happening but life kept reminding me that it was real and there had been no mistake.
The following year was easier as my routine hospital appointments were 6 months apart and injecting became second nature, like brushing my teeth. I had joined the local branch of the MS Society, signed up to this forum and found talking to others in the same situation really helped. My MS was stable too and I no longer lived in fear of the next relapse. I came to accept that I could still do all the things I had done before but I needed to plan rest periods into my days to ensure I had enough energy. If I am planning a big night out then I need to get plenty of rest in the days beforehand. (That can be tricky at this time of year but I still try )
I still get a little downhearted if I think back to what my life was like pre MS which is why I don’t let myself do that too often. The time for that is when you’re completing benefit forms because then you need to make the DWP understand how life for an MSer is different. That’s always a bit depressing so I don’t dwell on those thoughts any more than I need to.
Life does go on, you just need to make a few adjustments. I still work, still have social nights out, still take holidays etc. I just need to plan some downtime and make sure I take good care of myself. Keep smiling and on the days that’s not possible then have a duvet day with your favourite DVD/book (and maybe some meds) until the bad time has passed and you can get on with life again.
Thanks Tracey it is reasurring to know that u have had a similar journey to me and that it is getting better for you. Hopefully it will start looking up for me to. Just had such a busy week with work and totally exhausted is an understatement. Hoping a good nites sleep will help my fatigue and chase my blues away lol. Meeting my sister for lunch thats a good reason to smile tomorrow! Hope you are well charlene x
To echo what everyone else has said - the MS won’t get better but they way you feel about it and your ability to cope will. I agree 100% with Don - you mustn’t look back. If I think about what I could do and compare it to today I might end up in a corner weeping. What I concentrate on is different ways of doing things. I might go to meetings in my power chair and need a nap before hand but I still go!
I think one of the major challenges facing many of us is lack of money. Giving up work causes a large drop in income which can be depressing but I would rather be short of money than exhausted!
I’ve never had relapses so I don’t have to live with that worry but I do see my abilities diminish over time but I’ve had MS for 20+ years and life, as they say, goes on