I’ve been very unhappy lately. I was first diagnosed Relapsing- Remitting in 1999 and then Secondary Progressive in 2007. I’m still just about walking though my speed, distance and balance are much reduced. Now there are some things I can no longer do and others I can’t do easily. I was always very happy with life and able to cope but now, with this loss of mobility impacting my life in so many ways, I’m struggling. For example, I feel a loss of status - I am less competent and thus feel less important in society. I wonder why my pretty, intelligent girlfriend would want to stay with me. She says she loves me and won’t leave and, over the short term. I believe her. In the long term she has to find someone else - she’s got a lot of good life ahead of her. I can’t let her waste it. I’m trying not to give in, for example, I’m learning how to do very basic modern jive dance - of course that’s nuts and I’ll never get very good because I can hardly move my feet. I also try to walk some way every day - it makes me feel better. I hate being disadvantaged by MS. I hate multiple sclerosis - what a sh**** disease. I managed cope with having MS while the symptoms were mild but now? What I need are coping strategies for permanent loss. How do other people manage? Surely not everyone with progressive MS is this miserable. What do you tell yourself? Of course I’m depressed but I think I could get better if I only knew some coping strategies. I’m not ever going to be religious. I can’t and won’t turn to God. Best wishes, Paul
Hi Paul. My coping mechanism was to try and do everything I did before my symptoms and reality caught up. My first major symptom was optic neuritis in my left eye and then both. I was registered blind 6 months after it was apparent the damage was permanent. At that point I was a possible Devics candidate as I had no other MS sytoms. I plodded on through life, perminatly on sick leave from my career and using any excuse not be branded blind. I went to music festivals (my main hobby so to speak) used my friends to help me and ignored the fact I cought not see much further than 2 feet… Then my mum was diagnosed with terminal brain cancer and I had my first huge relaps. I could not walk properly, could not speak, could not pee and spent along time in hospital and rehab. This was the point that my coping strategy to that point started to fail. It was evident that I could not do what I did as I was just not mobile enough. I lost my job, my career and my source of income and promptly had another relaps. Stupidly I still bounded through life doing the same things. Going out with my mates, going to music festivals and generally pushing myself way ro far. This year I said good bye to Glastonbury featival. I went as a guest of the disabled camp site. Second time of doing so and it’s brilliant. However I realised that I have been fooling myself if I did not think I was ill and needed help most of the day. So in the last few months I have changed my strategy yet again. I am ill, I can not superman and can’t do the things I did last year. I am in tremendous pain and should embrace the drugs given to me and not stop taking them because I am going to haveots of beers. I need help, so I now seek help and I am not alone. I have marriage issues, I suspect a lot of us do, and I feel the same as you in that my wife didnot sign up for this when we got married. However what be will be and whilst I am working on it I won’t stop her from doing what she wants. I want to do stuff as yet not sure what. However I have found a little peace at the moment, it dose not stop me ranting on bad days or feeling down, but I no longer have that manic “I can do eveything and try and stop me” attitude. I now pick my fights and if it works great if not, well ok never mind. Not sure if this is what you wanted to read really and I am in two minds posting it but an expeiance shared etc. Best of luck Paul
Hi Paul It’s a bugger isn’t it? My diagnosis came straight in with SPMS so it is all I have ever known. For me, one of the hardest things to come to terms with MS is the uncertainty and unpredictability, anything can happen. My preferred coping strategy is to take each day as it comes and make the most of it, enjoying the simple things. A cup of tea with a good friend on a sunny day in the garden. I refuse to wreck a perfectly good day by worrying about what may or may not happen tomorrow. But we each need to find our own way with this and over time suspect I might well need to change my strategy. Your girl friend also needs to cope in her own way. We mustn’t forget that it is tough on partners as well but don’t assume she will react in a specific way. She has the right to choose how to live her life and may well feel that spending it with you is not wasting it. My OH has been brilliant but his coping strategy has been to go a bit OCD, it’s annoying but he has deal with this in his own way. Would you consider counselling? My experience of life is that it’s not what happens to you but how you feel about it Take care, you will find your own way through this Anne
Thank you for your thought-provoking setting down of a dilemma that many of us will recognize all too well. I have read the (also thought-provoking) replies with great interest - it is so helpful to learn how others cope with the trials and tribulations of MS. One theme that keeps coming up is adaptability, and I agree that this is key. One coping strategy might work well in certain circumstances (‘just getting on with it’ for instance), but it might then be tested to destruction when things take a turn for the worse and ‘getting on with it’ is no longer an option. That’s the time to tear up the rule book and find yourself a new coping strategy. For me, this is one of the hardest things. Even as I come to terms with (for instance) the fact that some hangover damage from the last relapse is not going to go away, I know in the back of my mind that, somewhere round the corner, lurks the next MS custard pie, and that wil present a whole new raft of problems and I will need to adjust to that too. And the next one. And the one after that. That’s why it’s such tough stuff. It isn’t just coming to terms with one set of problems and then you draw a line under that, and you’re all set. Over the years, and with a lot of struggling, I have got better at just enjoying the moment. For instance, last year I took a creative writing course and really enjoyed it. But first I had to get over the hurdle of thinking, ‘Is there any point starting, when my eyes are so wonky and my fingers don’t work well on the keyboard - wouldn’t it be awful if those things got worse and stopped me writing…it would be better not to start…’ In the end I got over myself and thought, ‘Sod it. Just start the course, enjoy the moment - it is the here and now that matters.’ So that’s what I did, and that was good, but it will keep on being a struggle every single time, I know. Coping strategies are always work in progress, I think. Alison x
I’m not SPMS, but had a pretty disasterous year last year and progressed loads. I was expecting a change of dx, but although last year’s damage is permanent, I’m still RRMS and now in what constitutes my new remission level. My history of dealing with sudden changes that MS has brought to me in the past 14 years has been to be really down for a few months and then to get my act together mentally and move on / find a new direction. The being down is my grieving period I suppose. Then, basically, if I can’t do something any more, I find something new to do. One of the biggest mental changes for me was going from a very fit martial artist who competed internationally to, about six months later, someone who needed a walking stick to just stand up for a minute. My coping mechanism is that I’ve assigned taekwondo in my mind as “something I used to do”, along with loads of other things that I have done in my life both pre- and post-MS. And now I do “helping people on Limboland”, “learning Spanish”, “lunching with X”, etc instead. My other coping mechanism is to remember that absolutely nothing is certain with MS. I had a bad year last year. It does not mean that it will happen again. But if it does, I will adapt again - I’ve done it before, I’ll do it again. And there is a whole host of meds, equipment, etc to help me. I guess that is another coping mechanism. I am happy to pop pills and to use a stick and wheelchair if they will help me live a more satisfying life - and they do! Can I just add that, like Anne has already said, your girlfriend has the right to choose who she wants to be with - and she wants to be with you. Relax, enjoy, let it be. Worrying about it might just put strains on your relationship that actually end up in her leaving, and making both of you miserable. Last year I told my husband that I would understand completely if he chose at some point to walk away. He said he would never do it. We left it there. He knows that if he changes his mind, I will understand. Nuff said really. Incidentally, I kind of understand why your girlfriend is sticking about - you sound lovely Karen x
P.S. I forgot to say that even with progressive MS there is no inevitability with the disease. MS can burn itself out and ‘plateau’ so the future is really not worth worrying about, anything is possible Good Luck!
Hiya Paul, We can all identify with your feelings, I try divert my attentions as much as is possible to what I can do, and do them well. I have to remember its my disease and nobody else’s therefore they will try do right by us but feel at a loss when they cannot help us, therefore in some ways we have to help ourselves. Walking as much as is possible is a brilliant idea, I call it my decoking strategy where the body’s circulatory system gets a flush through and the exremeties a good workout. Muscles and bones need gravity, as we need to part of the upright world as much as is possible. Even when we cannot be upright we can exercise, laugh and be part of whats happening out there. Hobbies, goals and adventures should be your goal, things youve wanted to do but never had the time, share new things together. Im sure your feeling insecure because you dont like whats happening to you but Ill bet your bottom dollar your girlfriend doesnt think the way you do, dont forget depression is all part of ms too. We mourne what we’ve lost yet seek knowledge and life for our book has only just begun, go forward with a smile and make people happy and in return you too will feel at ease with your life. Best wishes bren xx
I dont have a dx but i have enjoyed the post and the replies, Very thought provoking. You can feel a sense of struggle, then the pondering and then the best conclusion for the time being…all very positive stuff I think. A good outlook to have in life. xx maria.
Hi A couple strategies I have are related. One is to find voices that validate what I’m going through - things that are able to help me grow as a person despite of, or even because of, being ill & suffering. Things like this short talk here really help - http://www.ted.com/talks/lang/eng/aimee_mullins_the_opportunity_of_adversity.html Also, I’ve found a lot of help from engaging with spirituality, which can have an appreciation of the value of our dark night of the soul. So the other strategy I have has come from that. It’s a simple exercise that was devised by a man a few hundred years ago. He was a knight whose leg was smashed in a battle. He ended up stuck in a bed for a year as a result, robbed of his identity & who he thought he was, and he ended up developing a few different exercises. You don’t have to have any spiritual or religious faith of any kind to do it. At the end of every day or week, you ask yourself what were the things that energised you, or where you felt alive, like you were being yourself, or where you felt yourself being nourished. And then you ask yourself the opposite question - what were the things that drained you, where you didn’t feel like you were being yourself etc. Over time you may find there are recurring things that come up for each question, and so you know to choose those things that bring you life and to avoid choosing those things that drain you. As an example, from doing this regularly I know that being in touch with nature somehow feels really good for me, whether that’s cloud spotting or watching nature documentaries or having a drive in the country Also, after I’ve done some writing, either creatively or in my journal, can give me a buzz. I also know that going straight on the the computer after I’ve got home from work leaves me really knackered. So I know that when I finish work I should just get a good rest. And if I’m feeling dry somehow, then half an hour spent looking at clouds or writing can really refresh me. Hope that helps Dan
I wonder if you will read this? It’s a while since your origional message. I was wondering how you are managing? I have PMS so have some understanding of your condirtion and yes eveyone experiences MS differntly but I’ve found that other ‘m.sers’ know what I mean when I talk aout painful numbness etc!
I’ve always found it most useful to be as positive as possible. THere were times when I could’ stop feeling sorry for myself but a good friend suggested that I might be depressed. THANK GOODNESS FOR ANTIDEPRESSANTS! My husband agrees.
If you haven’t tried them, then give them a go.
More energy, better sleeep, able to be more positive- that’s what they do for me.
Good luck. Sue10
Hi You might finger mindfulnes helpful. It’s a form of meditation that gets you focussed on the now rather than the random thoughts which pass through your mind (and can often be negative - the human condition?). Google it. There’s lots of information out there about it. Hope this helps. Ann xx
Best check the date before replying to this post, as it’s over two years old.