2nd time onto the forum, diagnosed with PPMS in October and working as busy Special needs Teacher. But since divorce in February living alone and feeling very lonely. Only divorcee amongst my friends, and only one with life changing diagnosis! So life not really worth living at the moment, or indeed for the foreseeable future. How does anyone find the energy to keep going. Already on anti-depressants and had counselling, but it doesn’t change basic rubbish facts of life!
Bump
Hey cheer up just think of it as a whole new adventure, I have such fun with my MS I never know what’s coming next. Seriously though it sounds tough and coping with stuff must be difficult. I can impart this piece of advice:- you can have MS or MS can have you and I would advise the former. A mate gave me that advice over 20years ago his wife had let her MS rule their lives and not done a lot of stuff she could have and missed out by never laughing. I treat this as an adventure and have fought it for 20 years and still laugh in its face but now I can’t run away but my electric wheelchair provides me with an escape rather than running shoes now days. Smile and the whole world smiles with you. Cry and your a miserable old git which is how I describe myself on Twitter. You’ll find it gets easier but learn to fight one battle at a time. Pace yourself and fight on your terms, if work gets too hard tell them you have rights to be accepted as a disabled person and you are just coming to terms with that, ask for help and don’t be a martyr I speak from experience on that one. If you don’t ask they won’t offer.
Have fun X Don
I suppose what Don is saying is always look on the bright side, very good advice. I do sympathise with you though it must be tough especially on your own. I hope that this forum gives you some support, sympapthy and friendship. I like to make a joke of my condition and laugh at it too when I can. This does not always go down so well but there you are.
John
Hi there.Life can be damn hard sometimes. I was diagnosed in November. I waited a long tiime for a doctor to tell me what I already knew. It was still hard to hear.
I developed a way of coping with the MS roller coaster. Everytime something happens that I don’t expect or like, I think “plot change!”. It probably ounds really silly to other people but it helps me get though each day!
Take care of yourself.Life is tricky just now but things will settle.
K
Oops, not sure how I missed this.
Hello and welcome, I hope you’ll find that there’s some support and company here.
Sonia x
Hello & welcome to “On my Own”. I know exactly how you feel, I was in the same position not long ago. After my divorce in 2000, I loved my freedom, had just moved into my own apartment and led a great life & successful in a demanding job. Five years later, ill health meant I couldn’t work. I had no financial worries but my health was worsening.
In Nov 2011MS diagnosed & my driving licence revoked. My family was horrified but I kept thinking I’m still me with a label. Little by little I felt alone & didn’t think life was worth it, I knew I’d never do anything daft but I felt alone, that no-one really understood and I felt I was a burden.
But I was wrong!! I saw my gp, put on antidepressants & referred to an MS nurse. She was great & arranged various things, private counselling, a fab support worker from the ms society came to my home. I went to a lunch club - the 1st time I saw others with ms in varying stages. I made 2 good friends there. I took part in exercise classes, a lift from an MS sufferer. I also went on a 5 day break with the MS Society in Wales, which was great fun. It all helped me to regain my positive approach to everything. My family realised that although I look well, I have serious cognitive problems.
You’re right that nothing changes our diagnosis but we do have a choice of making the most of life & having a good laugh…or allowing the few words of “You have MS” affect us and become withdrawn & lost.
I really understand & sympathise with your situation, but believe me, there is loads of support via this site, the facebook site and various meetings/activities of the MS Society. I wish you the best of luck xx.
Thanks to everyone who responded to my post. It means a lot that so many people care. I think I need to link up in real life with fellow PPMS sufferers. I did try a local ms group, but everyone there already knew everyone else, so my friend and I sat there like lemons. Not sure if I’ll return, they knew I was having a particularly bad time, but it felt like one more battle to fight that I couldn’t face.
Hi, as well as the forum here, there are a few good groups on facebook - Women with MS, it’s a really friendly group and because just women, lots of stuff gets talked about so pretty handy for advice etc. I still haven’t gone to my local MS group either. I know I need to but I do feel all kinds of mixed emotions about it
Sonia x
Hi, I am new to these posts, but would like to join you. I was dxd as benign MS 20 years ago and I was lucky enough not to have any real problems for about 10 years. Then my walking, balance and fatigue became worse and are now really bad, resulting in falls in and out of the house, my use of walls and grab rails inside, and mobility scooter outside, becoming essential.
I am on no medication and feel I should have another dx as I feel sure I have PPMS from reading about symptoms etc. I do not seem able to get through my GP and the MS Nurse said I was not likely to see a consultant as there was a long waiting list - even for someone who really needed to see him. I am just getting worse and worse and my legs and arms feel so heavy constantly.
Any suggestions?
H, hope your feeling more positive, any new group is difficult to join it may be worth sticking with it till you find your niche.
Good luck
Pauline xx
Hi Frothy, firstly let me say I’m so sorry your post got overlooked. The problem was that you posted on the end of another thread… no problem… but it means you didn’t get noticed. Always best to hit ‘new thread’ to start a new topic. Benign MS!!! The very words make me angry!!! I too was initially dx with it… I too now use a scooter and a wheelchair and after changing neuro’s I finally got a dx of PPMS! Technically, MS can be described as ‘benign’ if there has been NO SYMPTOMS for 12 to 15 years!!! So NO Frothy… you have NOT got ‘benign MS’. Can you go back to your GP and ask to be referred to another neuro??? That was the only way I got a proper dx. If you do have PPMS there is no medication that will treat the MS itself, but there are med’s that can help some of the symptoms. If you are in pain then you should definitely be getting something! I think it does sound like PPMS esp if you are not getting definite relapses but just progression. See your GP and explain your concerns. Hope this helps, Pat x
Hi Frothy, So sorry you are having such a rotten time…I do agree with all that Pat says…my MS nurse told me not so long ago that she doesn’t really believe there actually is such a thing as benign MS…how can it possibly be benign if you are suffering so? I think another consultant would be the best way forward for you…let us know how things go for you but in the meantime a BIG welcome to the forum. Nina x
Hi and welcome.
Whatever you call it, progression is just so demoralising so I’m glad you’ve found us
Your diagosis does sound like it’s a bit vague, secondary now maybe? You need an answer from the medically trained, that’s for sure.
Wshing you luck on that score anyway
Sonia x
Thank you all for your replies. Where do you find “new thread” I can’t see it, sorry. I am lucky in that I have no pain - even though I have a beautiful black eye at the moment after a fall. I will ask to see another neuro consultant to get another diagnosis. I sometimes feel like I am wasting their time though when I keep getting negative replies. Thank you for your welcome though. Frothy
Hi Frothy, Sorry I missed your post, cause I was replying to onmyown who started the thread.
Simple reply from me is certainly isn’t acting as benign !! And I’m no expert.
Definitely ask for 2nd opinion, don’t forget you could talk to your pals team at the hospital about it if you feel an advocate would help fight your corner.
Best of luck
Pauline x
Frothy,
to start your own ‘thread’, come out of this one (“Coping alone”) and go back to the “Primary Progressive MS” header.
Tick the boxes you feel apply, to select what your thread’s going to be about and the first blue box on the left of the page just below this says ‘New Thread’, click on that and you can start posting.
Sonia x
Hi to both of you. The advice you’ve been given has been excellent and I can’t add much but wanted to welcome you both to the forum and say that it is very difficult trying to cope on your own. Nobody without ms will really understand how you feel and what you’re trying to manage. This forum is a lifeline where anything bothering you can be discussed. Nobody will judge you and no matter how frustrating or embarrassing you find your symptoms you can be reassured that you’re almost certainly not going to be the first to experience or ask for advice about them. If you don’t feel comfortable asking something using your profile you can do so anonymously but don’t just sit and fret alone.
Getting a dx of ms is quite devastating, many of us diagnosed recently will tell you that as it’s fresh in our minds too but don’t ever feel you need to cope alone. You’ve taken the biggest step coming here and introducing yourselves, it only gets easier now. There are some lovely supportive people here who have first hand experience of many of the symptoms and challenges ms has to offer and they’re happy to help everyone. No matter how long they’ve had the illness they might need help and support themselves and we might be able to provide that. All I can say is be kind to yourself, concentrate on what you can do and don’t be afraid to ask for help when you need it.
Take care
Cath xx