I was diagnosed June 2012 & i’m new to this forum lark, so please be gentle. I have different emotions on a day to day basis but the common ones include; anger, apathy, depression, etc. The uncertainty of the future is the biggest worry & the lack of control over my own destiny vexes me greatly - Advice please!
Hi Daedalus I was diagnosed in September 2012 and on occasion (like today!) still feel the same as you. It does get better and it’s such an age old cliche but each day at a time and deal with it as it comes. Trying to second guess what’s next is a fruitless exercise in needless stress !! Xx
Thanks Mrs H
Its nice to know i’m not alone in feeling like I do, recently attended my first ms consultation appointment & I was in a blur, just so much info to take in.
I’m told not to worry but its hard not to.
Best advise I can give, is to live one day at a time. This can help you avoid being overwhelmed. Works for me!.
All the best,
Hi Daedalus and welcome to the forum.
I just wanted to say I hear you x
It irritates me when people go on about the 7 stages of grief or whatever they are and how one should be feeling bla bla bla. It’s a massive thing to come to terms with and I dont really have any advice sorry. Most days I’m fine, some times I’m so crushed I struggIe to function. It’s normal to be feeling as you are. Do what ever helps you / make’s you happy right now but most of all be kind to your self.
Hi Daedalus and welcome,
I was diagnosed in Oct 2012 and I’m also brand new to the whole forum thing.
In my experience so far everybody on here seems really friendly and supportive, so you’ve come to the right place.
I am on the same emotional rollercoaster that you are, so you definately are not alone there, from what everyone else posts we all are on it or have been on it. Its more popular than Alton Towers, the queue must be massive!
Hi, I know how you feel. For me it kind of feels worse knowing. At least before I had the delusional hope I was going to get better. And when friends forget that maybe once upon a time you’d have been over the moon about being asked to join them on doing the 3 peaks or doing a charity boat row, but now all it does is makes you sad to say no. Try to just get on with doing the things you can do and know that lots of people here know exactly what you’re going through and will always listen. Take care Lynn
I was diagnosed in December 2011 and for the first few months my head was spinning. I felt like I was in a glass tunnel able to see the world around me but unable to touch or interact with it. I think what you’re feeling is perfectly normal and if my experience is anything to go by, you’ll soon start to come to terms with it. It just means making some adjustments and it’s a cliche but life really does go on!
I had quite a bad relaspse recently so I’m stopping Rebif and starting on Gilenya. More uncertainty and worry. I was always a bit skeptical about these forums but this one really does seem to have sensible comments and has helped me a lot.
Best of luck. It will be fine!
Welcome to the forum
I was diagnosed four years ago and still feel like a novice at times. I too went through the rollercoaster of emotions and, even now, I still have my ups and downs.
I have been very well (on the whole) for over three years and some days I can even forget about the MS for a little while but then in March I had another relapse and had to have steroids which mess with my emotions anyway. Once again all the old uncertainties cropped up and I was back on the rollercoaster for a while.
I’m recovering quite well now and have just held a successful Cake Break raising £265 although that was exhausting! To reiterate what others have said, life does go on, I still work 30 hours pw, still take holidays, still have an active social life etc. I have to allow myself time to rest, of course, but apart from that I still carry on as normally as possible.
Take care and be kind to yourself. Give yourself time to adjust, you will be okay …
I’m not a new dx (95) but I can remember the emotions you refer to.
I wanted to comment on control of your own destiny. Actually I don’t think anyone has that – some people may have an illusion of it but outside forces have a nasty habit of knocking budgie of the perch. Granted MS will limit some of your choices but it won’t take away your free will. I read somewhere that none of us are really in control of what happens to us – only the way we react to them. I think that is very true with a chronic condition. I’m not advocating the happy-clappy-don’t let-this-thing-beat-me c**p just that you can still live the sort of life that you want to live even with MS.
Uncertainty about the future is a bugar I agree. After 15 or so years of stability I’m secondary progressive. However life is still good and although I’m not in the future I might have chosen pre diagnosis I still live an independent life and make my own choices.
Can I just echo everyone else and say we all know what you are going through. I am now 10 years since diagnosis and sure life changes but there are always new ways of doing the old things you used to enjoy (hiring a tramper to go for a long walk with friends for instance) or new things that you might never have thought of before for you to fall in love with. For instance I’m newly in a wheelie and can no longer get around on my own feet or easily participate in sport or so I thought … but I have just discovered the joys of wheelchair basketball which I absolutely love and what a joy to be part of a sports team again (even if I have to spend the day before practice in bed storing up some energy!) I think having a chronic condition like this just throws into sharp focus what everyone is going to have to face at some point - that life is short so make the most of it. We all have bad days (or weeks!) but a good day will follow but maybe it will be just be a different kind of good day.
Hope you feel brighter soon,
Can I just say a big thanks to everyone who responded to my debut comment/topic, I have always been a shy/reserved kind of guy & just to have words of advice is a big help. Big decision coming soon, Tysabri Y or N - Wish me luck!
You are right, Tysabri is a big decision. I have been on it for nearly 3 years. Any questions feel free to ask as there are quite a few of us on it, so you will get a good range of feedback.
Ms drugs decisions are hard, but their is people on here with the experiance with most drugs that i found very helpful.