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How long did it take you to 'come to terms' with your dx?

Morning all. I was just wondering about this. I got my confirmed diagnosis of RRMS about five weeks ago and seem to be cycling through all the ‘grief’ stages, back and forth. I know that it’s perfectly normal but I find it irritating, as it depends on how I physically feel on a particular day. If I feel OK ish, I go into a sort of denial mode - and almost kid myself that I didn’t have that dx.

I did a search on the forum for this just now as I’m having one of those mornings when I feel like I’m struggling somewhat physically. It was very interesting and I wondered what everyone’s experience is.

I am getting help with this but would value your opinions as MS-ers. And any tips you might have…

Off to my French class where I feel that I’m about to have one of those mornings where I can’t express myself well verbally - in any language!

TIA.

Louise x

It’s a work in progress. Over the past 15 years, the best I have managed is a series of temporary and unstable armed truces. Then MS breaches the terms of the cease-fire, and all hell breaks loose again until I drag myself, bruised and hostile, back to the negotiating table. Quite honestly, that’s what it feels like. MS does not play fair and it cannot be beaten and it keeps on doing new and worse stuff. But I don’t want to sound too negative - those temporary truces can be long-lasting, and one gets better and faster at coming to terms the next time. MS is a damned nuisance, and it can spring some nasty surprises, but life is wonderful anyway. That’s the main thing.

Alison

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Hi Lou Sorry about your dx,but at least you now have answers. Myself personally have only really come to terms with it fully(dx 2008 rrms). What I would advise mainly is try to carry on as you were before but remember you do have it I.e don’t over do it ,just remember it’s there. Hope that makes a bit of sense ! Having read it back it sort of doesn’t/does to me. Weird! Lol

Hi Louise.

I’m not sure what it really means to “come to terms” with it.

As these things go, I didn’t take it badly, as I’d begun to suspect I was ill for quite some time, and it was almost a relief to know with what, and that I wasn’t imagining it all!

But in other ways, I don’t think I’ve ever come to terms with it - I mean I still have days (after more than four years) when I get cross, and think: “It’s not fair!”, and: “Why me?”, and other not very constructive things.

I think it took me at least a year - probably more - before I woke up in the mornings not feeling shocked all over again that I have MS. Because in your sleep, you forget all about it. Then wake up and find things hurting or not working right, and wonder: “What the heck happened here?”. Then: “Oh yes, I have MS.”

Obviously I still wake up with things hurting or not working right, but it’s not such a shock any more - I haven’t forgotten why, in my sleep.

I think five weeks is no time at all. I don’t think anyone should have “come to terms with it” in such a short time, and furthermore I’m sceptical about what it even means, and whether anyone ever truly does. No, I haven’t “come to terms with it”. I just get on with it the best I can. Or is that “coming to terms”?

Tina

x

Took me about 2 years before the mood swings stopped. Now I just get on with it as best I can and don’t let it rule my life. You’ll get there, promise xx

Hi Louise

I was diagnosed with ms in 2013 with PPMS.

I have come to terms with my diagnosis but I’m not blooming happy about it. I like to think I’m a positive person but some days are harder to get through.

My way of coping, is just to concentrate on the day in hand and let tomorrow take care of itself.

xx

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hi louise,

sorry about your dx, but welcome to the club, sorry if that seems at all glib, but ‘here’ really is where you can question, be sad, get angry or even be funny about MS. i agree with tina about the idea of ‘coming to terms…’, for me it was more a question of just not feeling like myself for an extended period. i had a peculiar time when i was given my dx as my mother died the same week, i’m hoping i never have such a cr@ppy week again, obviously. the dual effect was to just numb me. it took me quite a while to sort of unpick to 2 events, so i could ‘process’ them both, so to speak. feeling like myself again crept up on me, i suppose. i remember slowly realising that my emotions had sort of levelled out again. i think it was about 2 years for me too.

it’s only natural to want to get plenty of information about MS, but try not to ‘overload’, as it can sometimes be overwhelming, you can end up trying to look at what’s happened in the past, where you are now and where you might be going, at the same time as trying to factor in all this information. it can become very tangled in your mind. i’d recommend finding out about relaxation exercises, and, perhaps developing a stretching routine, as it helps to keep any muscles that spasm stretched out. apologies if you’re a yoga instructor or anything else where it seems like i’m trying to teach grandma to suck proverbial eggs!

take care,

wendy x

Thanks so much everyone. What I find really strange is that now I have a dx, I really notice when I get a symptom. e.g. when something just kind of falls from my hand. I know that I had niggly things before, but I didn’t notice/allow myself to notice them.

I went to my French class and was fine (we do use some English as well!) but when we were reading aloud in turns from our novel (there’s three of us in the class plus my friend who is a language teacher) I really got brain-freeze again when I had to read out a date!

The physical symptoms improve slightly as the day goes on. I had really heavy legs this morning and found going up the stairs at home was hard work. It’s feeling better now, though I’m still not about to go on ‘Strictly’, lol!

Good advice and v grateful.

xLouise

hi again louise,

yes, when you do look back over the last years you suddenly realise that there was a weird symptom here and there but it only makes sense once you have your dx. you suddenly find yourself viewing your life from a brand new perspective. well done on attending your french class. give yourself a break, the dx itself is enough to impact your concentration without dealing with symptoms too.

wendy x

This made me giggle but its exactly how I feel. I’ve learnt to pick my battles or at least maintain calm until the need to attack arises.

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hi

i was scared and worried by my symptoms before i got my dx.

my neuro wrote to me to say the mri was indicative of ms.

to be honest i felt more relief than anything.

i was on long term sick leave and using a walking stick.

whenever i saw myself in a mirror i would think “who is that imposter”. because although i knew my name and knew my family, i just didn’t look like me.

so i had my hair died pinky/mauve and cut quite short so when i saw myself i thought wow!

i got my actual diagnosis the week before my 50th birthday so i did a big roundup of all the friends i’d lost touch with and we went for a meal at a greek restaurant.

i was so positive it was sickening.

that was in 2008 and i’ve had some pretty rough times and felt on a big downer but i’ve got used to the ms merry-go-round and know that it won’t always be like this.

best to take it one day at a time. don’t look too far at the future

make the most of what you have and can still do.

wishing you peace of mind.

carole x

Hi,

I was diagnosed 19th January and I feel much the same as you. Reading everyone’s comments helps as it really helps you to understand that just about any thought or feeling is completely rational, which at times is hard to realise when you are having a moment of despair! I suppose the hardest thing to cope with is the unknown future… But no one can help with that! So hey-ho, it could always be worst; I am taking each day as it comes and trying not to beat myself up too much thinking about the ‘why’s’ when they are totally outside my circle of influence. (Just read that back to myself… Bit deep even for me!)

Hi again. I didn’t feel too brilliant this afternoon - aching all over, nerve pains in shoulder arm and foot - and I kept thinking about that figure of one person in 1000 in the UK having MS. I wouldn’t want to bet on a horse with those odds, so I’m feeling pretty miffed about being one in 1,000 - although we all are, aren’t we? It’d be nice to be, for example, the one in 1000 who wins a fabulous competition, or has something good happen to me, against the odds. Ugh, sounding sorry for myself now. I’ll stop!

And I do keep thinking about this time last year, when I didn’t know that any of this was on the horizon. Mind you, I’m a bit of a one for looking back rather than looking forward - bad habit I know. As Wendy says, the dx does give you a new perspective on life. Particularly for me, being 62 - I’ve always been a bit anxious about the future in health terms i.e. cancer, heart, and for me the big one, dementia. I don’t like knowing that I’ll probably get one of those - well, we all die of something - but I have the definite and very real diagnosis of ms.

Louise x

the horse analogy’s a good one, saddle me up. folks… i would be off to the ‘knackers yard’ of course .

wendy xx

lou, if your pains are too much, do go see your gp about pain relief options. there are a variety for both muscular AND neuro pain. if you do decide to go for the pain relief option, remember, if a med isn’t working for you, once you’ve given is a reasonable test run (check with doc/pharmacist how long it should take to be effective), don’t be afraid to go back to your doc, to talk about other pain med options. take it from this old nag, it CAN take time to find the pain med/combination of pain meds that works for YOU.

wendy (again, sorry, my brain won’t save my hands!)

xx

Hi Louise,

i personally haven’t came to terms with it but I do remain positive. We used to do a lot of walking. Living in the North East of Scotland there is some lovely walks.

Now and again I’ll have a memory of a lovely walk or someone will remind me of how far I could walk just a few years ago and I get a bit down. Then I will think of something nice like a giggle from my grandson and that soon brings me round.

Focus on what you can do rather than what you can’t.

Mags xx

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5 years and still counting! First relapse 1999. Next not until 2007. Finally dx 2010. I’m trying to be an ostrich really but new symptoms keep reminding me of my dx.

Not sure I’ll ever really come to terms with it…

I actually accepted it straight away. I only really gave it any thought when I went to A&E presenting with double vision and pins & needles up to my waist and was kept in on a ward full of ladies having IV steroids. I didn’t know what MS was and had absolutely no experience of it at all. I’d pretty much guessed my diagnosis when I got it six weeks later. I had a bit of a cry on the way home (I’d been to the hospital by myself) but got home and started the process of ringing round everyone including the bloke I’d met for the first time three days before. He stuck around for the next eight years though which I’m sure helped the way I reacted to it. I remember my old boss ringing me back the next day and asking if I’d got any sleep - I said yes and he said that he hadn’t…

But I was absolutely determined to carry on working, buy a house right from the word go and that’s exactly what I did. I’d moved about 40 miles away from home two years before and my mum asked me if I was coming back - she got a very firm “no”. In fact, I’m glad I’d made the move because I think if it had happened whilst I still lived at home, I’d still be there now.

When I did go back to work the following week, I made the decision to tell people (it never actually entered my head not to tell people, not knowing anything about the DDA) as I’d been off sick for six weeks and my boss at the time stood with me whilst I told my team. A couple of the girls were crying but I was absolutely fine. I was just really puzzled by everyone else’s reactions.

I never went through the grieving stages that people talk about but then, I’ve been lucky and had a relatively mild course. I actually found it hard to deal with the annual MS support days laid on by my NHS Trust at the time as they were full of negative and bitter people. I just don’t feel the need to bare my soul about it every five minutes so don’t go to any meetings and prefer just to get on with my life full of “normal” people. I also worked with a woman who also had MS for eight years and her negativity, bitterness and refusal to listen to any of the advice SHE’D asked for made my life hell and, in the end, I just had to cut myself off from her. She was even keeping track of my relapses!!

Don’t get me wrong, of course there have been times where I’ve thought “why did this have to happen to someone as dynamic and brilliant as me and not one of the no marks I went to school with?” but those moments have been few and far between. I have had a tough few years as Rebif stopped working for me and then Gilenya was an absolute horror story but I’ve been told recently by a top neurologist that to be this far down the line (fifteen years since first presenting) to have no active lesions, to have an “almost normal” physical exam is “nothing short of remarkable” so I have to hang onto that. It’s early days with Tecfidera but I’m still hopeful I can get back to where I was three years ago and remain positive for the future.

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hi mags,

i always remember a few walks where i’ve been in woodland and come across lots of bluebells, or walking on the north yorkshire moors, or around whitby, i wouldn’t be able to negotiate any of them now. but i have great memories!

wendy x

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Absolutely this. I remember going to Alton Towers a few months after being diagnosed and finding myself really angry and frustrated that I couldn’t cope with all the walking - so I just didn’t do it again. Now I lie in bed and eat cake instead!