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breakdown....losing hope...anyone to chat to...

hey everyone. diagonised 2 months ago and got delivery of rebif today…had no idea would cause me to breakdown but maby this is everything sinking in?? i feel like ive been coping really well after been diagonised but maby i was kidding myself. Im happy to be going onto treatment as hopefully there is a light at the end of the tunnel but im so angry and upset… my legs r so badly effected and its the biggest worry for me cause all im thinking is will they every get better or is this me at its best??? just looking for people to chat to who going through/have gone through all this… life really is a bitch and im getting really peed off at people saying ‘it will be ok…stay strong…bla bla bla’ seriously they have no idea!!! :frowning: xxxx

Hi Rose, as a newly diagnosed person, you`re bound be to be all over the place.

Perhaps the reality hadnt set in as much as you had thought, but now seeing the drugs, has confirmed it for you.

How long before diagnosis were you having problems?

Your legs are pretty bad just now, but depending how you respond to the medication, they could improve. As you know, MS is so variable and what happens to one person, may not happen to another.

Give yourself some more time to adjust to the situation. Pace yourself in what you do, and try to look after yourself the best you can.

Have you got good family/friends support? I hope so as it helps such a lot.

luv Pollx

Hi Rosex

2 months is no time at all to come to terms with the bomb shell that has landed in your lap. It will take a good deal longer for you to come to terms with your dx and you shouldn’t beat yourself up for being all over the place and despondent. Everyone on this board has felt like that. There isn’t a single person who has though “Oh goodie I’ve got MS now I can give up work and have an unpredictable future!”

Those people who urge you to “stay strong” are just trying to be helpful. But it isn’t. If you could cure this with a smile and a positive attitude I’d be first in line for a personality transplant. I think you need to cope not overcome.

I’ve never had relapses (and remissions) so I can’t say if your legs will get better – but they might do. I hope so. But or now you’ve come to the right place to meet with people who won’t tell you to “buck up”

Jane

i agree with jane,an ms diagnosis takes time to sink in and get used to,it took me 2 years to come to terms with,i sort of knew i had ms, so thought that when i got the diagnosis that i wouldnt be that upset.how wrong was i, when the neuro told me, i fell into a heap and started making this strange noise,i didnt realise it was me at the time, one of the kind nurses got me back on my feet,and took me into a room while i got myself together,i went through the stages of grief,anger,denial were a few things i had to work through a lot of feelings,its very much like when you loose someone close to you,only you grieve for your good health,so take time to let it sink in,and be kind to yourself,dont try and act brave,if you feel upset then let it out,you will have good days and bad coming to terms with it,but dont try and rush it doesnt work.

jaki xx

i agree with jane,an ms diagnosis takes time to sink in and get used to,it took me 2 years to come to terms with,i sort of knew i had ms, so thought that when i got the diagnosis that i wouldnt be that upset.how wrong was i, when the neuro told me, i fell into a heap and started making this strange noise,i didnt realise it was me at the time, one of the kind nurses got me back on my feet,and took me into a room while i got myself together,i went through the stages of grief,anger,denial were a few things i had to work through a lot of feelings,its very much like when you loose someone close to you,only you grieve for your good health,so take time to let it sink in,and be kind to yourself,dont try and act brave,if you feel upset then let it out,you will have good days and bad coming to terms with it,but dont try and rush it doesnt work.

jaki xx

Hi

It’s such early days and it will take a long while for the diagnosis to sink in. It’s like a rollercoaster ride - but one that you would never choose as you have no control :frowning: It’s perfectly natural to worry about what the future holds, everyone does it and MSers more so. As time passes, you will find it gets easier but for now be kind to yourself and take each day as it comes. I found it helped to keep a diary and try to focus on the positives each day. Try to find one good thing that has happened each day and write it down. You’ll be surprised at how much it can lift your mood :slight_smile:

I was the same as you - just as I thought I was coping I had to ‘choose’ a drug to inject with and then when it arrived it kicked off my emotions again. However mine mostly came out as anger. I became known as ‘the snappy one’ at work as I had no patience for the people who whinge about the slightest little thing when I was still working as much as possible and popping painkillers like smarties and trying to keep going.

I can’t promise your legs will get better but I am sure you will get better at dealing with all the rubbish that comes with this illness.

In my case after an awful first year, my MS did stabilise shortly after starting on Rebif. I have just had 3.5 years in remission (not completely symptom free, of course) and recovering from a relapse now. This relapse was much milder than previous ones so I’m not too disheartened.

The best thing for me is to keep talking to the people who really understand - others who cope with the same thing day in day out. I’ve given up trying to explain to people who just don’t ‘get it’. I joined the local branch and then discovered this forum but however you communicate it’s a big help.

Tracey x

I hope that the comments you have had have reassured you that what you are feeling is completely reasonable and normal.

And if I was able to respond to the ‘stay strong, you will be fine’ rubbish with a flying kick to the throat, I would do!

Alison

Hi Rosex It took me 15 yrs to come to terms with this disease, I was in total denial for such a long time so 2 months isn’t long enough to get your head around it all. Keep coming back to the forum there are so many wonderful people on here that will always be there to support & advise you along the way. ((((Hugs)))) xx

I was told I had MS about 5/6 weeks ago - to be honest life feels like a bit of a blur right now so I can understand.

I see the neuro again in a couple of weeks and I’m really desperate to get the appointment over with, partly as I have everything crossed that he’ll say it’s RRMS not progressive and also to be prescribed something to help.

I had the short sharp high-dose steroids and they didn’t fix me but I’m not as bad as before I took them so trying to stay positive. I’m self-employed and not debt free so I seem to spin from fighting spirit to sheer terror in the space of minutes.

My husband and family are great but fear of the unknown gets me every time.

Take care and remember, you’re definitely not alone

Sonia x

Hi

I just want to say I think you are coping well. We have this assumption that coping well means never feeling emotional, or at least only feeling ‘positive’ emotions, and we’re always meant to have a stiff upper lip.

Personally, I think that’s a load of rubbish. I think if people are like that then there’s a good chance they’re repressing stuff, aren’t in touch with how they’re genuinely feeling, or are in denial. Denial can be a necessary thing for a while when something like getting MS happens - it helps protect us & gives time for our subconscious to start to come to terms with it. But eventually we need to move on & face up to what is happening to us. Denial is the classic first stage of grief, and we need to grieve our old ‘healthy’ lives. The subsequent stages aren’t fun to experience - things like anger & depression. Feeling them doesn’t mean you’re coping badly, it means you’re experiencing feelings that are normal & understandable. I think coping well & being strong mean admitting what you’re feeling & sharing it, not bottling it up & acting like everything’s normal.

And it is possible to move on from those stages, and to begin to come to a place of acceptance when you can begin to rebuild your life.

I hope the Rebif works for you - it was brilliant when I was on it, and it really helped to stabilise things for me.

Dan

thank you all so much for support…its amazing how much all these words from people going through the same thing really helps… :slight_smile: nurse is comming round at 10.30 so first injection happening soon… please god im praying for all to go ok… thanks you all…xxx

Hope it all goes well, it does get easier.

Don’t be strong - have a good cry, shout, scream, rant - whatever helps. We are all here for you.

Tracey x

1st injection over with-yeahhh!! and it didnt hurt atall(that was what was most worrying me-wimp i no) isit weird that i am waiting for the side effects…am feeling very tired now so am guessing its the start of them…but heres hoping a good furture awaits… thanks for support peeps :slight_smile:

There you go Rose!

The injection wasn`t as bad as your were contemplating.

I`m glad your replies have made you feel better.

Remember that next time you`re on a downer.

Emotions can be good one minute and then all over the place the next.

luvya!

pollxx

Well done. The first one is the worst one (oh, I’m a poet lol). Keep coming back to tell us how it’s going; it’s all helpful for anyone having to make the decision. Hope you make it through the night with no side effects

T x

That’s great - well done. Onward and upward.

Alison

Hi Rosex

I just wanted to re-iterate what everyone else has said. I totally understand how you’re feeling. I was diagnosed in Dec 2011 and I was absolutely fine about it. My symptoms were quite mild and I just thought, ‘oh well at least I know what it is and if this is as bad as it gets I can live with it.’ Then, a couple of months later, I had a bad relapse. Couldn’t walk or see out of my left eye. I was put on Rebif injections and thought that was it. End of the world, wheelchair, the works. I was in a black pit of depression and felt totally isolated. I didn’t know this forum existed and didn’t know anyone who had MS. The MS nurse was great but everything was from a clinical point of view, not really much emotional support. But I’m not complaining about that. That’s not her job. Anyway, I’ve since recovered quite well and my vision is back to normal. I can walk again (albeit with a limp and my left leg is still a bit weak). I found someone at work who has lived with MS for years and she helped me a lot. I have had more relapses but none as bad as that one (I’m now on Gilenya). The main thing is that I got over the depression and feel much better both mentally and physically. I now have a much healthier attitute towards MS. I was a bit arrogant in thinking that I could deal with it without any support and I’ve learned a valuable lesson.

You’ll probably go through the whole range of emotions. This forum helps. Finding someone to talk to who could understand was the best thing for me.

Best of luck

JZ

Hi Rosex

We are all here for you to chat to when you are feeling down. We have all been through the same emotions and we truly understand. I promise it does get better. I remember lots of tears whenever something new happened. It was awful when I had to start using catheters and I remember crying to the delivery man when he delivered them for the first time. It takes a while but you will get there. I promise.

Remember we are all here for you whenever you need us.

Shazzie xx

ok so i really didnt get any bad side effects after first injection?? is this normal??? isit just being kind and when i do next one willl get hit with loads?? isn’t it bad that im waiting to feel terrible from dmd? god im going crazy!!!

im going ascot on friday with some friends so am just praying i wont suddendly feel like death? whats other experiences of side effects of rebif/treatment? how did you all feel after? did it vary week to week/day to day?dose to dose(as obviously im on lowest dose for first week and it goes up) thanks for comments…xx

I didn’t get any side effects at all when I first started it. No flu like symptoms. I remember I took 2 paras before I njected for the first couple of weeks. My MS Nurse said that would be a good idea just in case.

Shazzie xx