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everything is going wrong...

Having awful week…feels like my life is worthless and I’m just so angry at this disease and what it’s doing to my life… diagnosed in April, was in hospital for urine retention but my legs were badly affected since Christmas,got gradually worse since April but I thought they might get better,that maby I was still in relapse but everyday it looking more and more likely that this is me and this is it…I’m 26 and have a bf of 6 years who is not coping well at all…he’s told me now he feels like all are dreams are gone,he doesn’t want to get married or have kids everything I want,I no id be brilliant mum but no it would be hard as yes I can not keep up with them but how do others cope? also feel like our whole relationship has changed since I got diagonised…I dint think he seems me as the girl he loved before I think he just sees the ms and he cent handle it… I feel so lost and tbh I’m so scared he will leave me and don’t no if I will cope on my own.

Also I no I sudnt ready things on net but just read that if you are more effected with leg problems,co-ordination rather than eYe problems u are more likely to progress quicker…Will my legs ever get better or is it just a downhill spiral from here. Would my Neuro tell me if things were bad as he’s diagonised me with rrms but is he just monitoring me in the first yr? How would he diagonised that compared to spms…does the Mri tell him this?

Sorry all this prob very muddled I’m just a bit of a mess…

Hi. I’ve just read your post and had to reply. I’m so sorry you’re having a hard time of things - my heart goes out to you. It sound like you’ve a lot going on in your life which must be overwhelming. Ok so firstly if your neuro has dx you with rrms he will have done so for a reason. If he’d wanted to monitor you then he’d have probably said rrms was possible but a diagnosis could only be made at a later date. If you need reassurance, do you have an ms nurse you could call? Have you looked at DMDs or discussed any other medication with your neuro? Please don’t look too much at the Internet. You’ll always find something on there to alarm you and justify your fears. We’ve all done it and all been scared by what we’ve found! Ultimately ms is individual to you and won’t necessarily follow any trend. I think, with time, you and your bf will come to terms with your ms. It’s a good thing he’s truthful with you, even though its painful to hear. At least you know what he’s feeling and he may be working his way through a typical reaction to shock. The right person for you will have the same life plans and I hope it all works out well for you. I think it’s right to want to fight ms, to refuse to let your spirit be beaten but I’d say being angry, although understandable, is draining. It’s understandable you’re muddled. Maybe try and separate all your areas of worries and address each individually. If they are all merged under the ‘ms’ banner it might be difficult to differentiate I really hope things get better for you. Jane xx

Hi

I’m sorry you’re both having a hard time. If it’s any consolation, what you’re both feeling is normal, and many of us will have been there. Getting a diagnosis like MS is incredibly unsettling and, as you’re obviously finding, it throws up all sorts of questions & fears about the future.

Getting diagnosed can be a bit like suffering a bereavement, and we may find we experience similar feelings to someone who is grieving - denial, anger, depression etc - as we grieve the loss of our old ‘healthy’ life. However the final stage of grief is acceptance, and then it when you can start to re-build your life, and move on. Although it may feel like it now, your life is not over. You can still dream dreams and achieve things, even if those dreams & achievements end up being different from what they used to be. I think it would be good to find things that you enjoy doing, that give you a sense of worth and accomplishment. And I know how scary the prospect of your bf leaving you is. However, personally I don’t think it’s a good thing to try & stay together out of fear. If that’s the case, it’s possible he may become resentful of it. Instead of looking to him to be your sole source of support, find those things in life that energise you and make you feel alive, because that’s what he needs most from you - an ‘alive’, energised you, not a ‘dead’ you.

I’m afraid I can’t answer your other questions about diagnosis though. But as Jane says, there’s all sorts of mis-information out there on the internet. But MS is a variable disease, and we’re all a bit different. However have you got an MS nurse you could speak to? They should be able to help with your questions, and also tell you about any drugs or treatments like physiotherapy that can help.

Dan

Hi Anon

Jane and Dan have already given you excellent replies.

I would add that it is early days yet and a lot will change as you both adapt and get used to your new situation. Would conselling help you both? Your MS nurse or GP can refer you for this. The MS Society Helpline is also a valuable source of support 0808 800 8000.

The future course of your MS is unknown, both because of the nature of the disease and because of the current advances in its treatment. A lot is changing and there is every reason to be hopeful.

The future is by no means as bleak as it may appear at the moment.

Good Luck

Anne x

Hi Anon, Read the excellent replies youve had here, it is, I felt anyway, very much a grieving process, just as Dan said in his reply. MS is a hard road, but there’s help out there, all of us on this site are travelling that road too. Dip in and out of this site, the folk are soooo knowledgable and helpful, take care Jools X

Agree with all the others. I am 32 and went from feeling relief as I had finally had a reason for everything that was going on to complete anger as you describe and depression really kicking in. I decided to try counselling again hadn’t had a previous good experience. This really helped me work through my feelings, it was a slow process but I have managed to work through it. I just want to encourag you that yyour feelings are natural and there is light at the end o the ttunnel. Having this disease has made me more focused on what I want to do and achieve. Sending you hugs Barney

I completely agree with other replies. Good luck with it all. Alison

thank you everyone. you are speak such sence and i do no everything will take time and this will probably be the hardest year for me and bf and if we can get through this we can get through anything. I do feel conselling might help as havent talked to anyone and feel my bf need it…hes so angry and pissed at life and everytime he sees me struggling to walk it kills him and i no that so i try not to show him how things are affecting me which i no is not easy to hide… I just want someting to go my way…my legs to get better.has anyone else been badly affected with their legs but they returned to normal at a later date?

My boyfriend is hoping this stem cell treatment might come about soon…hes even keen for us to look into going to usa to do it? what everyone opinions on this??

thanks so much for replies.

xx

Hi Anon,

The previous replies are great and very true. Don’t forget how powerful your body’s own fight back reall is and it really is too early for you to give up. It must sound like a bad joke to you, but do try and relax and take a breather. The body is so much stronger if we do.

Best of luck

Moira