I’ve had ms for nearly 2 decades now. Highly active rrms I have not responded to inteferon and they are looking at putting me on something else but unsure what ye. I have 4 rrelapses a year which normally render me unable to walk. I’ve ha to give up a pprofession I loved and have had to retrain to do something else. I work part time but is a very stressful job which I’m sure causes the relapses. I can’t afford to give up my job but can’t move to something less stressful as I wouldn’t get as good a salar. I end up taking steroids whilst working due to strict policy on sickness. I hate tthis disease and find I really cannot accept it. I don’t even know ho to sstart. I have a supportive husband and family but have lost a lo of ffriends as they don’t or can’t cope with it even though I don’t moan about it. I feel so much has been taken away from me an my hhusband. I am still mobile but very restricted most days. I’m too scared to use my crutch as worried that I’m giving into it and try to use my husband or just don’t go out. How do you come to terms with something as frightening as this? I can’t even remember what it’s like to be abl to do everything. Just feel so lost. Just wan to do everything I used to with no problemse only tim I feel ok is when iI’m taking steroids. I’ve thought about counselling but that won’t take away my fear. I can’t stop worrying about what will happen to me and my family. Sorr for the long ppost
I really do not think anyone comes to term with any serious disease, after 30 years of MS I have grown to respect it but still despise to limitation it has placed on me and mourn the things which has robbed me of. I agree with Pat don`t be frightenend just live within the constraint it has placed on you. Your life is not over just taken a slight detour. Take care and keep well.
Rick
i’ve had rrms for 5 years and came to terms with it fairly soon after diagnosis.
i used to have a very full professional life and social life but i knew i couldnt keep it all going.
after medical retirement i had a good think
there were certain things i didnt ever want to let go and i was determined to keep them
rick is so right when he talks of giving it some respect because it has really beaten me up when i havent shown it respect.
you can’t go on living with all this fear, give counselling a try or CBT is supposed to be very helpful
as for using your crutch in public, why not try somewhere where you won’t meet anyone from work (that seems to be where the fear lurks for you)
its amazing how nice people are when they can see that you are in need of help.
they dont push past you in the shops
keep coming on here to offload
carole x
Hi, well i cant say to give yourself time to adjust to a new diagnosis, can I?
But what I would like to say is that you do have to assimilate (posh word for a Sunday afternoon!) MS into your life. Continually fighting against it, hankering for the life you used to have, will only cause further mental anguish and upset.
Poeple often tell me I handle my condition well and seem positive …well that is ture, most of the time…I reckon I have accepted my lot.
I have been a full time wheelie for over 9 years now. I use a hoist at home, have a hospital bed with an air circulating mattress. I used to love to colour cordinate my befroom, but it still looks like a hospital ward…so I have to accept that. Of course, it is a single bed, so I feel a million miles from my hubby, in his single bed.
You say you hate this desease…well of course you do…it`s like continually punching the same baddie…who gets up and hits back just as much…try talking to him and making him a part of your life. You dont have to love him, just toleratre him.
I dont think you`ll ever have a peaceful mind, unless you do.
All of us, whose lives have dramatically changed with illness, mourn our former lives…but our present lives are still worthwile, valuable and treasured by our friends and families. If we lose some friends along the way, then were they really our friends? I think maybe not.
If working is causing you too much stress and fatigue, then have a really good think and talk with your hubby, about retiring on ill health. I never thought I would manage financially, when I did that 13 years ago.
We do manage on less money…we have to cut our cloth according etc. it is an expensive business, living with a severe disability…make sure you ahve the right benefits in place and ask the council for help with equipment and maybe house adaptations.
I spent all my payout on a scooter, a suitable car, a wet room, other various things around the house.
I hope you can see a clearer way to live with MS…if you don`t, it will do you in. I am positive your family value you and want you to be with them as long as possible.
luv Pollx
Have you considered going to see someone, like a councillor or a psychologist?
I was under a psychologist when I was dx I saw mine for about 12 months, without her help of showing me to accept my MS, as my neurologist told me being in denial was detrimental to my health, it did take me over 4 years, to come out of being in denial,
Dont get me wrong I still dont like having to ask people for help, I try and do and do as much as I can, and at times still do too much, there are things I will not even try like climbing to get things down froom on top of a cupboard,
Al x
im not in denial, i accept my ms but I HATE IT WITH A VENGENCE for taking my life away
I am not sure that anyone really does, not totally anyway.
Even when active RRMS is being well-controlled (which yours clearly isn’t), the next relapse is there lurking in the shadows, and if it does not actually appear, it can still cloud a person’s day and haunts her dreams. And all the time you (well, I certainly) are worrying about it turning progressive…
Look, if I had the answer, I would be bottling it and selling it for high prices. Something that certainly has been a help to me is counselling. You are quite right: it does not take away the fear, but it has helped me to get the most out of my life regardless. I gave it a go only because I was clean out of better ideas. I am glad I did.
I have great sympathy with the bind you are in at work. It gets to the stage when you just do not have any more to give, and it is an awful worry if you just cannot see a way through that. I expect you have explored options (if any) for being retired on ill-health grounds. But if you are someone who soldiers on, going in to work regardless, it is perfectly possible that your employers are only dimly aware that you are have health problems at all. That’s not a good place to start from, when you are hoping to negotiate an exit package. I wish I had some good ideas for you, but I don’t.
There’s no beating MS, that’s for sure, any more than last night’s opponent could beat Serena Williams’ serve. I think that coming to terms is the best we can hope for, but even then we have to accept that it ain’t a negotiation between equals. MS is stronger. All we can do, I think, is not let it cast a longer shadow on the here and now than it needs to. Worries about what it might or might not do in the future can be such a drain on energy and happiness. Counselling can help to manage all that a bit better.
I hope things look brighter for you soon. Sometimes it can make a real difference when something nice happens: it does not even need to be something big. Just something to give a person a bit of heart and optimism. I hope that the week brings some cheer.
Alison
There have been a few ‘I don’t think anyone ever comes to terms with MS’ answers on here, haven’t there? But also people who have said they HAVE come to terms with it. For me, I came to terms with the disease itself easily and early on. I’ve struggled with and grieved for some of the things I’ve lost to MS but the disease is nothing to me. When people couldn’t tell that I had it and it placed no restrictions on me, why would I care that I had it? Because of the things I might lose in the future? Worrying about that always seemed pointless to me - you might lose nothing so what was the point in worrying? Or you might lose a completely different function or ability to the one you were worrying about.
Is the way that people deal with their MS just an extension of the way that each person deals at their life in general? Probably it is and maybe you can learn, by having counselling or some other way, to deal with it in a different way. But perhaps for some people, they need or want to be angry with the disease, because that’s their way of coping. I can never get my head round being angry with something as abstract as a disease, it’s not concrete enough, it would be like being angry with the rain because you wanted it to be sunny.
[quote=“Sewingchick”]
it would be like being angry with the rain because you wanted it to be sunny.
[/quote] Love that line.