Guys, I’m posting for some input really. Was dagnosed with RR in August of last year. In that time I’ve had 3 relapses. My first attack was complete loss of right arm due to motor/sensitivity issues. It recovered. 3 months after it was left arm, same scenario. Then in April I became house bound due to MS being in my spine and my walking is limited and I piss and shit myself frequently. I’m 24, 23 at time of diagnosis. There’s a good MS team around me but what can they do? I’m clearly gonna get the worst of it based on research attempts to develop a prognosis for newly diagnosed lot - I mean the time scale between first and second relapse. I’ve had 3 in 9 months, more severe then others who have had it for years. Steroids don’t work for me. My MS nurse is lovely and is being positive but I’m clearly fucked in the future as its too for gone for less than one year. My relapses are really bad. Obviously all relapses are bad for everyone but mine had more impact in terms of disabilities then most. And all this rebif or whatever ain’t worth shit. I’ve been down with what is now seen as “two relapses” and the nurse is Supportive but she’s just trying to keep me from topping myself or whatever. But I’m paranoid I’m heading for a ‘worse than death’ scenario and want to be aware enough of reality that I can opt to end it before I’m locked in a shell, a potato, and unable to stop it then. Any comments of whatever sort welcome. Just venting, pretty mad.
Hi Adam,
Sorry to hear you are having so many disabling relapses at the moment and at such a young age. I would have thought that given you are relapsing so often and appear to have a more aggressive RRMS, it would be better for you on one of the more potent dmd’s such as Tysabri or Gilenya. Is this something your neuro or nurse have spoken to you about? This link has more info on ech drug: http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs.I really think this is something you should talk to your neuro about.
Things may seem really active now but things may calm down somewhat, and you may make a good recovery, such is the nature of the beast there really is no way of knowing what’s going to happen. Maybe ask your nurse about a referral to a counsellor? I know it’s not going to make you feel better physically but might help to work through the fears that come with a diagnosis.
Best of luck - I really hope things improve soon for you.
Laura
Hello Adam, Welcome to the forum. I am sorry you are struggling so much. As Laura suggested, have you thought about seeing a Counsellor or ringing the counselling service offered by MS helpline? If not, keeping talking on here, we are all here to help and support each other. The heat isn’t helping. Has your MS Nurse talked about other treatments if your relapses are severe? I’m out of my depth here, hopefully someone with more experience will see this and post. Sam x
Hi Adam Welcome even if under bleak circumstances. I had counselling when first diagnosed and, for me, it helped enormously and I would do it again. Doesn’t change anything but once a week I could vent, shout, cry and let it all out. Catherine Xx
Sorry you are having such a rough time.
I agree with others - your MS sounds pretty active, and my first priority would be to review whether the medication you are on is strong enough and, if not, what your options are.
When you are recently dx, and your MS is pretty active (mine was too) then it is tempting to think that everything that happens in the future, including how you feel about life, will just get worse and worse. Please believe me when I say that this is not the way it works. Having MS is all kinds of bad - no two ways about it - but it is possible to make a good life for yourself, even though MS was definitey not in the life plan. The idea of bravely, bravely coping in the face of adversity isn’t very appetizing either, I know - but that is not what I mean - it is more a matter of genuinely finding ways of being happy and fulfilled, and that really is possible. Do not despair.
Good luck with it all.
Alison
Hi Adam
I’ve just been diagnosed with PPMS and am finding it hard to cope at times too. My progress isn’t as aggressive as yours appears to be but I also panic sometimes when I think of my future. I was until very recently a professional with a physical job and it broke my heart when they retired me due to ill health.
What I’m trying to show you is that all of us have stresses, the cause may differ and so will our coping methods. I’ve been put on anti depressants as I was extremely suicidal before my diagnosis and they’ve been really helpful. You might benefit from them or counselling, or even both. You need help urgently especially if you’re at risk of harming yourself. Do you have friends or family you can speak to? Please see your gp or speak to someone from a help line as others have suggested.
I know my situation is very different from yours but there is a life ahead of you. It won’t be the future you had envisioned but there are ways of managing symptoms and you’ll learn to find or adapt hobbies and interests. As someone who has been in the dark place you’re in please get help, there’s no shame in admitting you’re not coping, in fact you’ve proven yourself to be brave posting and taking that first step.
Please keep posting and letting us know how you’re doing. You’ll realise we all need help at times and there are some wonderful people on this site who will understand more than any therapist what you’re going through as they’ve experienced it too to a degree.
Take care. Cath x
Hello Adam and welcome to the forum. Please, please ring the help line, see a councillor but don’t do anything silly as believe me there is life with MS. The trick is you have MS it hasn’t got you. You will adjust the things you do and can’t do, it’s hard but you will. You’ve made the first positive move by coming on here and telling us how you feel, that’s a sign of someone not prepared to give up. You have that inner strength to get through the worst and it will ease up. I wish you so much luck and send you (((((HUGS))))) to let you know you are not alone. Please keep us up to date on your progress. Janet x
I appreciate the words, guys. I will pursue the stronger meds. To me, the meds are the last roll of the dice. Im really done, though. I spend my time on the couch resting, saving my energy for getting food and travelling to the toilet. I’ve always been a depresses guy as Ive had a lot of issues in my life. Regarding family, I have none to see. I was raised in a cult until I got to Attend unI and I left it at 19. I was disowned from family and struggled to dropping out as I was messed up. Skip forward a few years and I’m done. I spent lots of time in depression and fucked off my short time of life. I’m venting, I’m intoxicated. It’s nice to moan here. I’m not threatening suicide as I’m not really capable of it. But I would like this life thing to be done. I’ve been unfortunate and my one shot in life was spoiled. To be honest; after first recovery I enjoyed the attention I got with MS. I’m just that sort of guy. I’m not built for pressure and stuff. I’m weak mentally. I bitch and moan like this. I really have been unfortunate though; and thats not something you don’t wanna be proud of. It’s a one and done thing; life. And at 24 I’m suddenly crippled. My friends are good to me but they basically are 24 hour carers. Meh, I feel better banging random shit down. Ta.
Life is never that bed of roses you imagine it will become. Look at all your friends, even the richest/healthiest and just listen to them talk. From the outside they might brag about the house/car/relationship/ work achievement but none of them are truly happy with their lot. They all want more or better. We’re unfortunate to have ms but learn to cope with our symptoms. Sometimes it’s easier than others but hey, that’s life and with help we can get through whatever’s thrown at us. You’ve proved you can cope with a lot and are definitely not the weakling you want to portray. Chin up, shoulders back and go and get whatever it is you think will have a positive influence on your life.
You’re the only one that can truly help you. Take care.
Min x
Hi Adam, I completely agree with the advice you’ve been given - counselling, anti depressants and take a new look at the meds you take - but I just wanted to say that i am so sad for you that your family aren’t there to support you. You’ve come a long way to reach independence at such a young age, and you’ve clearly got some good friends who are there with you. I just wondered - and I know this might sound completely mad - but you write so well that you might think about writing a blog. It could be a really good way for you to vent, and could get you some emotional support too. Ok, may be too mad. Just a thought! Good luck!
Hi Adam, I completely agree with the advice you’ve been given - counselling, anti depressants and take a new look at the meds you take - but I just wanted to say that i am so sad for you that your family aren’t there to support you. You’ve come a long way to reach independence at such a young age, and you’ve clearly got some good friends who are there with you. I just wondered - and I know this might sound completely mad - but you write so well that you might think about writing a blog. It could be a really good way for you to vent, and could get you some emotional support too. Ok, may be too mad. Just a thought! Good luck!
Cheers guys. I have appreciated this. I’m working it in my head now. Sometimes I’m mad and sometimes I feel a bit sad. This is just the way. I am deeply paranoid about the ‘bad’ disability. The prognosis is looking pretty bad. But I’ll deal with stuff till then. Even a wheelchair and bungalow council house situation. But vegetable outcomes make me afraid. Thanks for nice words. And I appreciate a compliment about writing. I studied journalism at Uni and was proud of it but I have dulled a bit. I do have a private blog but with hand problems for a while due to motor issues. I have got a phone with big touch screen buttons but it’s not ideal.
Ironically in the sentence talking about my writing skills I fucked up. I meant to say that motor problems impacted on my motivation and ability to write.
Good Luck Adam and stay strong, we are all with you
Colly
[quote=Adam89] I meant to say that motor problems impacted on my motivation and ability to write.[/quote
When that happens, the urge to say, Oh filtered word it - I give up, is so strong. And bang goes one of the things that gives you most nourishment in life. Finding ways around it (voice recognition software etc) just seems ridiculous and who could be bothered? But it is so important to be bothered and stay bothered enough to find ways of doing the things that are important. I am rubbish at this. Please try to do better than I do! It is so hard, I know.
Alison
With your writing skills you could become a huge voice for disabled people and let the plebs of this country see that we are not all scrounging b*stards. That would give you a reason to go on fighting - put your anger and pain to good use.
Btw, I had three, possibly four, relapses in 10 months. Three of those were considered ‘significant’ by my neuro. I was 44 at diagnosis which is also not a good age if you look at statistics. The only good things I have in my favour are that I’m female and Rebif does seem to be working for me. I think my odds are 50:50 of becoming severely affected. However, I choose not to dwell on it and live life for the moment. In a way I think MS did me a favour and I enjoy the little pleasures in life much more than I ever did before. For instance, I will never again take walking or talking for granted.
I know life seems bleak for you at the moment but you need to discuss some other medication which can target your MS. You clearly have a good circle of friends who aren’t ready to abandon you yet. They are like gold dust. I found out I had only a handful of true friends when I was diagnosed. Please don’t write yourself off yet. I think you have lots more to give yet. You just need to find something that puts a fire in your belly and makes you want to fight for life as much as you clearly have done in the past.
I honestly wish you well and hope you find something that gives you a purpose. I hope it’s the writing - I like your gutsy style
Good luck and take care
Tracey x
Guys this thread did help. You’re all lovely. You all overrate me but your kind words made me feel better. I know you’re all not doctors and such but I have to ask: Am I done completely? You can’t say for certain but I’ve been unwell for over half a year now with the aforementioned relapses. The ms nurse is certain I have RRMS and that I will show some amount of recovery. I’m more cynical. I’ve been house bound for a few months. My left arm has recovered significantly and I can smash fools on Street Fighter 4 again. I like to think my walking and bodily functions from my lower half would recover further but I’m deeply paranoid that I’m done.
Have you had any physio? If the answer is no, ask your nurse for a referral. It can take a long while on the NHS but it would certainly benefit you. I’m on the waiting list but I’m impatient so I’m doing basic yoga stretches in the meantime to keep my legs moving. The information I read on the service said that patients benefit from physio as soon as they experience problems with mobility to prevent the problems becoming long lasting. I would say you are more in need than most.
Tracey x
I’ve been told I’m going, also to councilling, but I’ve had no correspondence. Its only been a short while, though. I would like to give it a go and most probably will do soon.
it really works, good luck with the councelling
x