Hi I was diagnosed with primary progressive ms last week. I’ve had no remissions I just get worse everyday. I’ve been put on a 500mg 5 day course of methylphenidate. To be honest I’m not coping well. Everyone beens saying think positively but how can I? I’m no longer living I’m just existing. I can’t even hold my baby grandson. I feel guilty towards my famil, children and fiancé. Half the the time I just feel like ending it all because I’ll be less of a burden. Sorry if this seems OTT, but I’ve got to be honest with someone. I hope someone understands how I feel. I’ve cleaned for a few people with ms and I know how I could end up. What’s there to look forward to? 44 years old stuck in the body of an old woman. I went into a furniture shop last week on my crutches and the assistant said "I can’t see you hopping, are you sure you need those crutches? ". Rock bottom is how I feel.
Emma.
I am so sorry you have this diagnosis. I am sure it is a tough thing to hear and I really do sympathise with you.
There is so much for you to live for! Do you really think your family will be better off without you? I can assure you they wont be. They will distraught.
Please can you see your MS nurse or phone the MS society to get a counsellor. I really think you need to talk to someone who can show you the positives.
There is life after a diagnosis. Please tell someone how you really feel Emma.
PM me if you want to chat, I would be happy to let you have my phone number. I am not diagnosed at the moment, but PPMS is what my GP expects the diagnosis to be. Obviously I dont know how I will feel if I do get the diagnosis, but I believe there are positives to every situation in life.
I am thinking of you Emma, and please take care
Paula xx
Hi Emma, I read pm64s reoply and she has said many things I wouldve said too.
Would it help to look on the PPMS board? There are lots of folk on there who know how it feels to get such a diagnosis. You are in the very early days of being diagnosed. It takes a long time to accept, re-think your life and no one can blame you for feeling so down.
I am suspected of having PPMS myself and am still having tests 14 yrs on!
I have lost my mobility and use a wheelie full time. I need lots of help from others and get really frustrated when I can`t do much for myself.
But I have a great netowrk of help ie
hubby, 3 carers, family for outings and emotional support.
I began using Direct Payments last year and it has enabled me to live a better life than I might otherwise have had.
Please will you see your GP., as maybe you could do with some anti depressants to get you to a stronger place.
Yes, life with such a chronic condition is hard…but I`m sure it is still worth living.
luv Pollx
Emma hello and you sound in a very sad and lonely place.
It is ok to feel like that when the thunderbolt of dx hits you,the important bit is finding ways to get from that point to acceptance. I think you need help to start on that road,which is similar to the stages of grieving.
I cant remember what they are but I am sure someone on here will know.
Its important to tell the family how you are feeling and your fears,they probably dont know how to react themselves so all of you are saying what you think the other wants to hear…and thats often way off the mark.
We always found ways of getting my mom to hold babies with alot of pillows to fully support the little one, but she still felt like she ways holding them as she could look directly down on them.
Your comment on seeing people with profound ms related difficulties mirrors my husbands reaction to my dx “oh god no I saw your mom”. He is now learning that everyone is different and I in no way follow her path.
Please talk to your gp,ms nurse or someone on the society helpline about your feelings so you can get help and support.
As to the comments of the woman in the shop,it probably hurt more as you are emotionally vulnerable at the time. Do not dwell on it,you are only answerable to yourself and you know how much you need them.
Please take care
Pip
Hi Emma, so sorry to hear you’re having such a bad time. I am also PPMS so I do understand some of what you’re going through, although your symptoms sound more severe than mine.
It’s very very hard to come to terms with but, as Paula said, there is life after diagnosis. Lots of people on here very severely affected by MS still have a life and enjoy their life. Aids such as power wheelchairs, mobility scooters and hoists can make life much easier. Having the right benefits can also help and having carers in. Are you getting all of that?
You are still at the stage of being completely overwhelmed. People compare the stages to the stages of grief. It’s very tough to begin with but does get easier with time. You can’t force yourself to think positively so take it ‘one day at a time’. Just deal with today. When it’s feeling very bad just deal with right now.
Please visit us on the PPMS board on this forum. We are a VERY supportive gang on there and all understand what each other are going through. It really helps to be able to ‘chat’ to people in the same situation and know that you are not alone with your symptoms.
You are not a burden to your family… of course not. How can somebody you love be a burden? They are no doubt struggling to come to terms with it as well, but they will get there. Sometimes people do come out with platitudes like ‘think positively’ or ‘you look really well’ but really it’s because they don’t know what to say. They will get used to it in time.
Please remember that even with PPMS symptoms come and go… so symptoms that you have now will not necessarily stick around. New treatments for PPMS are being researched right now. There is hope for new treatments soon.
That assistant in the furniture shop!!! This is what happens when we have a government and a media that makes it sound like we are all faking it!
I hope the 5 day drug treatment helps.
Thinking of you Emma and big (((((((((((((((hugs))))))))))))))) from me.
Pat xxx
Hi Emma
MS sucks and so to Progressive BUT we are a mad group/bunchand we get by, try not to let IT take over your life save some space for us! It’s the gorilla in the room but you can get around himM
Hi Emma
Yep, it really sucks when you get this diagnosis, but honestly there is still a good
life to lead with ppms, and by joining these forums will really help you.
~At the moment you are probably grieving for the person you think you have lost,
but that person is still there…it’s you. Take one day at a time Emma, it will get
easier, just give it time please.
In the meantime have a word with your GP as anti depressants may just help you
at the moment.
Sending you some (((((((((((((hugs)))))))))))))) to let you know that we really do understand
and care.
Pam x
Hello Emma, and welcome to the site.
I am RRMS so I cannot really understand the impact of being diagnosed with PPMS, but I do know that what the others have said on here is absolutely true: there is life after diagnosis and that life can still be good.
However, it can take a long time to begin to believe this and sometimes we need help to get there, e.g. I saw a counsellor who helped me loads. So, for now, you’ll have to try and believe us - we wouldn’t lie to you.
Take it one day at a time - be kind to yourself, and to everyone you love and who loves you - one day you’ll realise that things aren’t as bad as you feared and be so glad you hung in there through this horrible period.
(((((hugs)))))
Karen x
Hi Emma I was dx in Dec and am still reeling from it. However, you will get to grips with it. As several have said, the key is to take things day-by-day and take it easy. Your family will not see you as a burden but I am sure will want to help and support you. Things may level out and your MS may plateau and not progress. I hope that is the case for you. Thinking of you, I know how you feel, Teresa xx
See Emma? There`s a lot of folk here rooting for you.
luv Pollx
There sure is. We’re all here for you Emma.
Pat xxx
I just want to say a huge thankyou to everyone who has replied to my first comment. I’ve tried to reply to you all but I apologies if I haven’t I’m getting slightly confused. But thankyou once again xxx
Hi Emma, I’m sorry to hear you are in such a dark place, it’s a horrible horrible feeling but there is always light even if we lose sight of it, it will come back. Your family/fiancé all those around you love and care for you. All the wonderful folks on here are full of kindness and compassion that I am often overwhelmed by the beauty of human kindness that I lose sight of. I’m thinking of you and sending you a big big HUGS! Hugs, cuddles and warmth. Allen x
big hugs are sent your way xxxxxx
big hugs are sent your way xxxxxx
Big hugs from me too ,
Sam xx
Hi Emma x I can’t add much more than the others - only more hugs accross the ether xxxxjenxxxxx
How are you feeling today?
Pip
Hi. 2 things amaze me about this site. Firstly the warmth and care I’m getting from you all. For that I thankyou all so much. Secondly is the positivity. THAT amazes me. But I just don’t or can’t quite get it. I wake up everyday with what feels like a death sentence hanging over my head. I’m the very first one in my family as far back as my parents can remember that has MS. I’ve lived my life as a law abiding citizen, brought my children up to be the same, would do anything for anyone (although I’m far from perfect) yet I feel like this is some kind of punishment. Your all such amazing people. Xxx
Its not a punishment at all its just one of those things that happens but takes some getting used to.
As you must of said to others when hearing of illness etc oh it always happens to the nicest people well it has YOU.
As we have said your mind will reel for however long it takes for acceptance to settle,but its not life threatening only life changing,so thats the first positive.
Have you spoken to your gp or ms nurse yet about your problems coping with the dx, as the sooner you get help the better?
You say you are amazed by the positivity and care of the people on here. We have been where you are whatever label of ms we have, but the number of responses show you too have light at the end of the tunnel…its just little steps at the moment to get to it.
Take care
Pip