PMA and lots of legal drugs are my tips!
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i agree with the ‘lots of legal drugs’, but, sorry if i’m being dense, what does PMA stand for?!
x
Positive mental attitude
ooooooooooooh! gottit, but i bet i’ll be asking you again within the week. the old memory ain’t what it was… more of a , ahem.
x
I hear ya sister
Hi Lou and other posters,
this is an interesting thread. MS varies so widely, so how we deal with it does too. I was a fit fifty yr old having run 3 marathons in 2010. After an 8 mile training run, I developed my symptoms in Oct 2012 - initially unable to lift my left leg and developed MS hug in my left chest. My RRMS Dx came in June 2013 after being messed about by GP’s etc. Dx was a relief as I’ve always been quite fit and healthy and I knew things were very wrong but it’s hardly good news. Two years on I’ve been reasonably stable so I consider myself lucky. Bottom line the Dx could have been much worse.
So coping- you can’t change the dx and need to get on with it. The future is uncertain but will come anyway, so you can either worry and be miserable or you can try to be happy - PMA definitely. Do what exercise you’re able to - I love Yoga. My wife and I have moved onto a yacht and sailed round Britain last year and are hoping to sail for several years, whilst I’m able.
Eventually or tomorrow that may become unfeasible but why worry? If it happens deal with it then. I have MS, MS doesn’t have me.
Do what you can whilst you can, remember the destination is the same for everybody so try to enjoy the journey.
This is just my way, we’re all individuals
good luck to you all
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hi ab,
it’s good to hear about all the different ways of coping with ms, i tend to think of it as a really awkward housemate, really, really awkward! this way i can mostly think of ‘it’ as ‘other’. my heavy duty ms symptoms started VERY abruptly after a nasty fall on ice, in 2003 descended into awful neuro pain, like i said awkward… just keep on sailing and fit a winch contraption to get on and off your boat, later on.
wendy xx
Hi I was dz in 2008, but to be really honest, I do not think I have come to terms with my dz and I do not think I ever will, I know I am ill but still wait all these yrs on , to be told sorry we got it wrong your fine. I know that will not happen but to come to terms with having Ms is to me admitting I have it and I still am unable to do that, I want me to have ms not Ms to have me.but again I put my head in the sand and will never come to terms with my dz . Xx
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I think it took me all of the first year to accept that I had this thing for life! One day I was fine, the next day I couldn’t talk or write properly and a couple of days later a doctor was telling me I needed an urgent brain scan. I ended up in hospital waiting for an MRI scan. I was told that it may never happen again and if anything did happen again it could be 6 months, a year or even 5 years before anything else happened. It took just 3 months before I was back in hospital unable to walk. Huge shock to the system! It didn’t help that, at the diagnosing hospital, their bedside manner was awful and they didn’t take time to explain anything properly. I learnt more about MS from this site than from the doctors.
Very soon afterwards, I was asked to choose a DMD when I was still angry that I even had a lifelong condition. I went through all the grieving stages in those few months and lurched from tearful to angry several times a day. That’s when you find out who your friends are …
The silly thing is that although I used the MS Society website for information, I hadn’t noticed this forum section. I wish I had because then I would have found all the wonderful people that have helped since. By the time I joined the forum I was on a DMD and was coping a little better because my MS had calmed down a bit and I stopped panicking so much. Even so I have received some good advice and support and I try to give the same back when I can.
I think I have come to terms with it now. You take each day as it comes. Enjoy the good days and muddle through the bad ones as best you can. I try to concentrate on what I can do and not think about how life used to be. Sometimes it still catches me unawares for instance when I have a relapse but again you learn to live with it and realise that it’s just a bad spell and it will pass. Life is too short to rail against the things you can’t change …
Tracey x
Wow, this has turned out to be quite a thread! Thanks everyone.
Oddly enough I just received a message from my therapist (sorry, I know that sounds a bit ‘Woody Allen’!) She has another client with MS. He had his diagnosis at 19, and is now 28. He said ‘You know I haven’t felt this good in years, gym, healthy eating, happy thoughts etc. I’ve got meditation tonight and Tai Chi Wednesday.’
Good to hear a positive story even though part of my mind says ‘well, he’s just lucky and hasn’t had a relapse yet…but wonderful to hear of a young man who’s doing so well.’ Think I need to give myself a slap here and not think so negatively! However it did make me wonder about (I presume) the MSers who have integrated the dx into their lives and don’t go on a wonderful forum like this - or maybe they are ‘read only’ people. I think that a good, regulated and official forum is a tremendous help, but I would like to be the sort of person that didn’t need one!
Louise
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I’m not sure I was ever a worrier or given to anxiety, I allow myself 10 minutes of moping from time to time, but no more - it takes away time that could be spent better elsewhere.
I don’t think I ever saw getting a dx of MS as something that had to be come to terms with. My eldest brother had MS and there was always a chance that it could occur in any one of the rest of us siblings, I know that for him it took a very, very long time to come to terms with the dx, but I am a very different character, he would fuss and fret over every little thing, my older sister is similar, me and brother No.2 on the other hand rarely bat an eyelid at anything life lobs at us.
Whilst I am still technically in the ‘probable’ camp - my own fault for not presenting in the correct fashion, always been a bit of a rebel - my Neuro (and her colleagues) are pretty certain I have MS, they’re just waiting for a relapse to put the label on it. My response - fair enough, do you/I need to be doing anything other than what we’re doing right now? No - OK, so I’ll see you in 12 months’ then (or words of that effect). The Neuro’s letter to my GP made me laugh - being referred to as “…this pleasant lady…”.
I had to give up teaching pole dancing/fitness and doing pole myself - bit tricky when you don’t know if you’re holding on to something or not, especially if you’re 9 ft off the floor, upside down, holding on with just your hands/arms - and I must admit I was seriously aggrieved about that, particularly on the day I took my pole down at home and packed it away, but it didn’t last very long - my view being that I was going to have to give up pole at some point. OK - so I was thinking nearer 70 than 45 but what the hey.
I still do Taekwondo - I train with a great bunch who have even got stuff off the MS-Society website to try and understand what I may or may not go through and how they can better help me to achieve a black belt. I have multiple ice-packs at the ready to avoid over-heating during training, ice cubes in my water bottle and if necessary I’m out in the school yard to cool off. I have bad days and good days, and everyone at the school rolls with it.
I can’t walk as far/fast as I used to, and I often use a walking stick for balance when out and about, which is preferable to face planting in the middle of the street - I just take my time and don’t let others rush me - Did I mention I’m a stubborn so and so given half a chance?
TheresaB that nearly (im male though:) what my neurologist put… was it Dr Petreckzsky? Or is this what neurologists always do as its not a nice subject and to make u feel better 
Hi again Louise
I’ve never thought of myself has needing this forum, although I understand fully what you are saying. I do read around the subject of ms but it’s just great to talk things through with like minded people…it’s good to share
It’s just like another facebook-only stricter
xx
I think a lot of people will say relief. We tend to know long before a formal dx that something is wrong and it can be comforting to realise that we’re not simply mad.
I’m new here today, so hello! I was 36 at my RRMS diagnosis with a three and a six year old in tow. Eventually I went temporarily blind, lost my speech, all feeling below the neck, heavy legs, numb feet, excruciating foot cramps and useless numb hands etc, etc, etc! I was terrified I would end up in a wheelchair within a few years and, although married, worried sick about caring for our children. I was on Betaferon for many years. Well, that was in 1991 - the ‘kids’ are now 26 and 29, I’m 60 this year, we’re still married and I have never used a wheelchair! Life has been unpredictable, scary at times, worrying daily but, really … is that any different from anyone else’s life? You simply cannot tell what is going to happen to you, even when well and symptom free. My dad got Alzheimer’s and Parkinson’s, my brother’s got HIV, my husband prostate cancer, my sister in law breast cancer and my wonderful daughter has bipolar. I’m probably better off than they are most of the time. We all just try to get by as happily as we can. To be honest, I don’t really think about my MS much … only when it hurts or lands me painfully on my back because of my constant foot drop and what I call ‘fizzing feet’ (hence my moniker!) I get exhausted at the drop of a feather have pain in my right hip because of my left leg’s stupidity and drop everything, especially if it’s expensive! I’ve had MS for 24 years now. The Internet was in its infancy and there were no self-help groups to log into and chat with like-minded people back then. It was very lonely. Yellow Pages was all I had and that was pretty useless, unless I wanted a plumber There are so many ways to connect, discuss, find out and ask for help now - even films on YouTube to give help, advice and occasional laughs. Lots of organisations, books and websites will try to answer anyone’s queries. MS can be horrible, I know but don’t let it define you, consume you, change you for the worst. You are you and that will never change. I don’t have a faith in any god but I do have faith in me and believe in me. Hopefully, you will come to the same conclusion. Good Luck for your life and may it be as happy as you can make it.
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Wouldn’t we all, Louise, wouldn’t we all.
Alison
This is a really interesting thread and I wanted to add my two penny worth. When I was diagnosed, I was simply convinced that the doctor was wrong. As I deteriorated over the next couple of years, I accepted the diagnosis. I was never angry or bitter over it, although I have been very sad at times, when I have had to stop doing things I wanted to do.
I am not in good shape now - my walking is very slow and I use a wheelchair or scooter when out of my home. But I feel that MS has given me many things, as well as taking many things from me. I feel that I must live this life, the only one I will have, as well as I can. Does anyone else feel that?
I know what you mean. I wish I could say it has spurred me on to great things, because I am very conscious of my own mortality, and that none of us “own” tomorrow - no matter what we may think. I think a lot of fit and well people are completely oblivious of this.
But despite this insight that I think few well people share, I wish I could say it had made me a better person, or made me seize the day. I still put off or avoid things because I’m “too tired”, even though I realise now it’s unlikely I will ever NOT be too tired.
So in principle, I agree, but in practice, I’ve fallen short. I still tell myself: “there’s always another day”, even though, another day, I’m likely to be more ill, and so even less likely to do it! Sad but true.
Tina
x
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Just wanted to say thanks again for your wonderful posts. They’re all so helpful. Theresa B - I was lost in admiration at the pole-dancing thing!
When the specialists write to the GP’ after a referral, they always (in my not inconsiderable experience, lol!) say ‘thank you for referring this pleasant lady’ (or gentleman in the case of my husband) Must be in their 'how to write a letter to a GP ’ training!
Louise
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hiya
yes sewing chick-i agree-this is the life i have got so live it!
or as my brother told me play with the cards u have been dealt!
i have never asked ‘why me’ preferring to think ‘why not me?’
ellie
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