What did you find as the best way to cope with your MS diagnosis?
Ashley Walsh was diagnosed with MS in January 2016. You can read her three step guide to making your diagnosis a little easier to deal with here > http://mssoc.uk/2iWxxMz
it was my 50th birthday the week after my diagnosis so i arranged a party and invited all my friends old and new.
i could tell at a glance which friends were horrified and which were keen to help.
they have been a godsend.
i arranged tickets to see live bands and even went to festival number six at portmeirion.
carers tickets meant that i could invite a friend who was into whatever i had got the tickets for.
around that time i saw Sigur Ros at blackpool winter gardens.
roger waters at the MEN arena, manchester.
war horse at the lowry.
the water boys at bridgewater hall, manchester.
so now i have good memories of that time, along with the nightmares.
now iâm not as well off but absolutely have no regrets about splurging on tickets at that time.
carole x
1 Like
Thatâs really admirable. Carole and Iâm pleased to hear that you had support from friends - itâs so important to have a trust network around and by the sounds of it they mustâve had a good time being treated to some of those concerts.
It has been a couple of years since my fateful âwell at least it is not cancerâ meeting with a GP⌠and i am still unsure whether the news has truly sunk in.
I maintain, the worst aspect of this disease is the uncertainty; the prognosis for speed of progression, the extent of progression, what symptoms this progression actually involves. So many questions. So few answers. But all humanoids, being self aware as we are, are burdened with uncertainty and so life does not become so complex; MS is just one more thing to worry about.
My mother had MS and i intimately witnessed how bad it can get. Perhaps the uncertainty of the future helps me cope with the presumption that my fate will not come near to that of my mother?
Also, i have had the resources by which to formulate a pro-active, push back against whatever this disease might decide to do with my frail white matter;
- i adhere to the Swank diet (proven, very long term, but not scientifically constrained results) with the best quality foods i can find
- I commenced the most effective, first line DMD available.
- I listen carefully to my body; avoidance of any and all stress; committed exercise, adequate and high quality sleep.
I have basically taken the diagnosis of MS as an excuse to treat myself to only the best of everything.
My neurologist once told me, âthose who live well with MS live WELL with MSâ. If you hit the bottle, smoke cigarettes and essentially give up on caring for yourself, MS will figure quite prominently and is likely to add to your troubles.
I also have a relentlessly optimistic attitude. I even toy with the notion that my neurologist is a qwack and that i had one isolated flare up (relapse) due to circumstances at the time, with the MS diagnosis being a mere exaggeration / err on the side of worst case scenario.
Coping strategy: Pampering oneself - proactivitism - optimism - realism.
4 Likes
Im not coping.
tbh I feel broken, life feels unreal, and at the moment I cant find any hope. I cant stand the 8 loud noises in my head, the declining hearing, dizziness, the flashing lights and blurred double vision, muscle pains, electric shocks and all the other s****. Im terrified because it is all getting worse so quickly and the health service seem to be doing nothing to help. Iâm terrified of being deaf and blind with loud noises roaring in my head and visual disturbances where my sight once was. I miss the job I loved and lost, the wife I loved and lost, the home that strangers are now living in, the happiness I use to feel in even the smallest things, the great health that I took for granted, the arguments in the pub.
I feel like I have died and that Im looking at an empty shell that has taken my place. I want to know how to find a way forward. There is so much more I wanted to do in life and now my head is too noisy to even sit and read a book. I loved my life and now i cant stand it. I loved who I was and was quietly proud of some things that I have done. Now I feel ashamed of the broken, whinging, self-pitying person that Ive become. I dont want to die but Im finding living so hard at the moment. I know all you guys have gone through the same and that I ned to be stronger. I use to be pretty strong I think. But after 12 months of unexplained hell and now an explanation which is worst than I ever feared I dont think I hav much left. Every minute now feels like torture. I know this is a rant and I know this is a positive thread and Im sorry. I feel like Im falling really fast. Writing this Im for the first time really crying. I feel so sad.
3 Likes
Sorry for negative tone.
I know this thread is about coping and not about not coping. And I know that people waiting for a diagnosis will be very anxious and probably the last thing they need to hear is someone saying that they cant cope. So I want to stress that from what I have read people do cope and live full lives with MS and some even find that it led them to do lots of positive things that they would not have done otherwise. Im just in a dark place because of the severe tinnitus and deterioration in my vision. And I know that I might wake up one morning and feel âyes, maybe there is a way throughâ. So apologies for the negative vibes guys and good luck with what ever you are dealing with.
Rupert
BobâŚsounds like youâre going through it a bit at the moment. Chin up, keep going, we all understand here, and some of us have felt the same way ourselves. Itâs my stubborn nature that thinks âF*** this, this stupid disease wants to beat me and Iâm not having it! It wants to wreck me? Come and have a go if you think youâre hard enough!â
1 Like
bob
iâm so sorry to hear of the rough time you are having.
thereâs a well known platitude âthis too will passâ.
i believe in that though.
are you being treated for tinnitus?
my husband has it and copes by listening to hawkwind at high volume through headphones.
ageing hippy he is!
the flashing lights must be awful, have you tried those black glasses?
if you can find things to help you cope, then it may pass in time.
hydrotherapy is great for painful muscles and mindfulness meditation is a good fix for everything.
hope you get some relief soon.
carole x
anon
i got medical retirement.
you need to see occupational health at your workplace.
good luck
carole x
2 Likes
Bob, our Helpline team is here for a reason and talking to someone can really help, it sounds like youâre having a tough time but youâre not alone. Please get in touch if youâd like to chat, the team can be reached on 0808 800 8000.
1 Like
I really enjoyed reading this, Paolo. I especially like how youâve taken and in your own words, âthe diagnosis of MS as an excuse to treat myself to only the best of everythingâ.
Thanks for sharing.
Oliver
My diagnosis came in two stages. My first attack was in December 2000. After a night in observation at our local hospital the doctor in charge referred me for an MRI scan. I was told that the scan showed evidence of a relapsing-remitting neurological condition. MS wasnât mentioned by name. The first thing I did when I got home was to go online and look up relapsing-remitting neurological conditions. The only thing that came up was MS. I thought âIf canât be MS. If it was that serious, theyâd have told me.â That was how I saw MS in those days, a serious condition that would have a diagnosis given gently, almost as if it was cancer.
A few years later I had a significant relapse. I went to my GP who told me that I have MS and managed to get me an appointment with a neurologist. This time the feeling was relief. Now I knew what was wrong with me and could figure out ways of coping with it. I went online again to find out more about the condition, this time with a more level-headed approach. I told my family and some friends about the diagnosis. Reactions varied and I even found myself reassuring people that it wasnât terminal!
In some ways, though, I also went into a state of denial. I applied for DLA, and got an indefinite award that included high rate mobility. This told me that I was disabled, but I would always describe myself as less able. After all, disabled people use wheelchairs and I could walk, albeit not very far or very fast, and always with some kind of aid. It has taken me ten years to accept that I am disabled. The clincher was a visit to Leeds Castle last year, when a woman at the ticket office took one look at my walking sticks and offered disabled admission. There arenât many good things about this condition and Iâll take what I can get!
1 Like
The only way to cope with it is - in your own way. Donât let anyone tell you that you should feel this or that, it perfectly legitimate to feel how you feel. Remember, some people will have a very benign course, and some wonât, and they will have very different views on how to cope.
Psychologists, so-called experts, whoever - they donât have MS, and whilst they may be able to offer advice thatâs all it is - advice.
You just have to learn to live with it (as you donât have an alternative), it is the new normal for you, and whatever way you deal with it, whether it is point-blank denial or screaming into a pillow, is ok.
And how you view your diagnosis will change over time, and that is ok too.
Jo x
My problem has always been - symptoms/relapseâŚfeeling apprehensive and sorry for myselfâŚconfirmed dx and then DMTâŚand then ânow I should be over it and move on with the future, shouldnât I?â Not the case at all, and Iâm still cycling through all the stages of grief, two years on. Iâve only realised this recently (with professional help) and Iâm glad as Iâm now acknowledging how absolutely furious I am to have MS!
Louise
Thanks Oliver. I will give them a ring. Ive also emailed the local MS group.
Rupert
Thanks for your reply Fractorious and for your kind and encouraging words. I hope you are doing OK atm.
I dont disagree in principle with what you say. After some getting use to, I could could say f*** off to the tinnitus, even when it got louder and louder. But now I kind of feel that Im confronted wth something which will keep getting worse and that I only have a limited ability to cope. I can tell the MS to FO but it always has the last word because the symptoms keep getting worse. Sorry, to sound negative. I will try and get through this.
best wishes
Rupert
Thanks for your account. Im not sure why but it made me smile. A rare occurance atm.
Rupert
Thanks Carole
Hope youâre doing OK this morning.
Funny thing is that when the tinnitus started it was just two quiet noises which my (now ex) wifeâs very light (âladylikeâ) snoring was enough to cover up, despite her denials that she ever snored! Now it is 8 plus loud and seemingly alternating noises, which I cant seem to cover up even with loud music. I guess Id count more as an aging punk than hippy and it would be the Clash for me. Hope your husband is coping ok with the tinnitus. But make sure that he doesnt have the head phones so loud that the tinnitus gets worse.
Best wishes
Rupert
Hi Louise
Hope your symptoms are not too troublesome atm.
I think feeling apprehensive and sorry for ourselves is 100% natural. We have a lost a lot and have a lot to grieve for. I think we need to be gentle on ourselves and recognise how much we are doing despite the direct and indirect impact of MS. But I hope that things start to get easier for you and you get to do most if not all the things you wanted to do before the MS hit.
best wishes
Rupert
Thanks Rupert. Not feeling too miserable although feeling very achy and tired today but thereâs always that âwhat if and what happens whenâ feeling which tries to pull you down, I think. Paolo is right - itâs the uncertainty of things which is infuriating, although most things in life are uncertain.
Last night I had a lovely meal in a restaurant with family. Great evening but I noticed two couples on another table - an older couple with what looked like the younger son and his wife. The older man got up to go to the loo - he sort of lurched from table to table, holding on to chairs, in a way that convinced me that he was another MSer. He made his way back and retrieved his sturdy walking stick to go back again. On the other hand, this was on a first floor, no lift - and weâd both managed to get up the stairs! I find myself paying much more attention to other disabled people since my dx. Itâs sort of always there in the background, isnât it?
On a lighter note - I applied for a blue badge about three months ago, never thinking I would get it. I was delighted when I did as driving into a disabled space is much easier, especially at my branch of Tesco! I spend too much time and money there but itâs so much easier to get in and out of the car now! So this was the silver lining in the clouds - you have to take it where you can get it!
Louise
1 Like
Hi Rupert.
Thereâs no need to apologise. Our diagnosis can be a massive kick in the gut, so itâs perfectly normal to feel youâre in a dark place. It can feel like a bit of us has died, and we need to grieve the loss of our old lived. I found I could relate to the classic stages of grief.- denial, anger, depression etc. Theyâre not nice things to go through, but are normal, and even necessary if weâre to move on with our lives. The final stage is acceptance, when we can build a new life. Itâs been a long hard slog, and my faith has kept me going despite many a dark night of the soul. But life does move on. Time can heal. And as you say, it can lead us to do lots of positive things as a result (Iâm a wheelchair user and done a tandem skydive, learnt to fly with a scholarship from the charity Flying Scholarships for Disabled People, become a member of an NHS committee that funds research, got cheap tickets to see Pompey lift the FA Cup (being a wheelchair user does have its perks!)). Life is possible.
Dan
2 Likes