Hi,
i’m Jayne and have been diagnosed since early Spring with RRMS but have only recently started trying to get my head around the diagnosis.
I desperately miss full mobility and independence - and I really hate the slow climb back to ‘normality’.
My illness came as a bolt out of the blue - symptoms started within 6 months of being widowed at 43.
I’m looking for any positives that can be gleaned!
Jayne
Jayne.
Life can be a bastard. But you get through these tough times with hair on your chest and strength to your character.
I went through a stress filled time in the weeks / months preceding the relapse that confirmed my diagnosis too. I think it is safe to say that stress / anxiety / profound sadness was the direct catalyst towards earning the MS Badge for many of us.
And so now here you are.
For me, the toughest thing to come to terms with when i was diagnosed just over a year ago, was the extent of uncertainty. There is no way of knowing how bad it might get nor how quickly. But the fact is, whilst we feel we have reason to fear the worst, it truly might never happen.
You are looking for positives? Well that is a good start! The simple fact that you are conscious of that is what is required, suggests strongly that that is what you will find!
It is easy to become overwhelmed when considering all those things you can no longer do, or struggle to do. I would recommend you keep a diary; within it, list all the symptoms you endure, but also try to describe whether there is an improvement or decline in the symptom / its impact. You could also note the context in which anything arises / vanishes; for example, if i exercise vigorously my right leg feels like it is on fire for about 12 hours. I no longer worry about this though, as i now expect it. And if it doesn’t happen, i feel like i am getting better in some small way!
Another positive thing, is to get proactive. I have modified my diet by adhering to the Swank diet. I miss my beef steaks and stinky cheeses. I used to eat three eggs in a single meal, and now i am limited to two a week. No more microwave meals, and certainly no pizza or fast food. Milk from a cow has been replaced by that from an almond!
i don’t pretend to understand why the diet is supposed to work; but the advice seems compatible with a healthy lifestyle; it costs me nothing extra; it might benefit me; i feel empowered by doing it!
in addition to this, get on a DMD. and do it now. sooner the better. do not take no for an answer. if you have RRMS, you are entitled to some narcs!
finally, i indulge in healthy denial of my diagnosis. no really! i have had (what i categorise as) one relapse. and although not fully recovered and thus symptom free, i figure this was one freak and unfortunate incident that scarred a neuron somewhere. i prefer to think of my neurologist as a quack. he rushed to diagnose me with MS, coz then he could tell his buddies at the pharmaceutical giant that he has found another desperate user to push their pills on to.
But… the one thing i was prepared to listen to my neurologist about, was his advice that “those that live well with MS, live well with MS.” i.e. those who exercise, eat healthily, drink in moderation, do not smoke, get adequate rest and essentially take good care and pamper themselves, will live a long and mostly able bodied life.
MS is an opportunity to appreciate the things you have, the things you can still do, and to treat yourself like royalty.
good luck with your ‘blue skies’ thinking.
Hi Jayne I’m new too on here I’m too less mobile as I was or liked to be. It always gets me down ( guess you know your limits) im still trying to go further. Keep strong Diane xx
Oh dear, my sympathies on your loss.
You must be wondering how much more crap things can get, and if there is any reason you’re having such an appallingly bad time lately.
The short answer is no - it’s not lifestyle related, and it’s certainly not payback for anything you’ve done. Not that I’m suggesting you think that, but when a horrible thing happens, or especially a string of horrible things, almost everyone wonders “Why me?”, at times, and: “Could it be anything I did?” It’s normal to think: “Why did I get all this crap, when others haven’t?”
But there’s no justice or logic in it - Fate is blind.
It’s not uncommon to experience initial symptoms, or a flare up, not long after a traumatic event (physical, emotional, or both), but there’s no proof the trauma is what actually triggers MS. It’s more likely the disease process had already begun, but at a level you had not yet noticed - but any stress can make symptoms more pronounced.
I took my diagnosis quite well, and in some respects found it almost a relief, as unlike you, I’d been feeling unwell for some years, and was at a loss to know why I couldn’t just “pull myself together” - I hadn’t suspected major illness.
Touch wood, I’ve not been severely affected, so far (just short of my five year anniversary of diagnosis, and suspect I’ve had it a lot longer). BUT, I think it took at least two years for me not to wake up in the mornings and still feel shock at my diagnosis. In my sleep, I would forget, then wake up with all the miscellaneous reminders of something not being right, and think: “Oh no! I have MS!”
It still doesn’t take long to remind me in the mornings - I always wake up with something hurting, or a problem with my waterworks, or whatever. But nowadays, it’s more like: “Yeah, yeah - it’s you, I know.”, rather than: “OMG, I’ve got MS!”
So even the very traumatic, and the abnormal, can become normal over time. I won’t say I’ve accepted it, because that almost sounds like saying I don’t mind. Of course I mind - I’m not a masochist! But the extraordinary does become ordinary, when you’ve lived with it long enough.
It’s not on a par with a bereavement, and yet it is, because whilst it never, ever goes away, you do adapt, and it becomes less strange and less shocking. I’m never going to embrace it, and I suppose I’ll always feel a bit hard-done-by, but I understand it’s the way life is now, and the way it’s going to be, and I don’t get such a fright every time I wake up. I’m also long past the: “must be a mistake” stage.
My biggest relapse to date, which was also the one that led to my diagnosis (I’d had smaller ones before, which I’d ignored), did take almost a whole year to recover properly, and I never quite returned to as good as before, but about 98% there, I’d say. The 2% wasn’t anything awful that I minded very much - mere niggles and nuisances, nothing catastrophic.
Like Paolo, there are some things I no longer worry about, because I expect them. You start to notice some things follow a pattern. If something happens every time you do something, but doesn’t get any worse, and you don’t drop dead of it, after a while, you ignore it. I know that sounds weird, but you really do just roll your eyes and say: “Oh that again!”, and get used to it.
Tina
x
Hello Jayne. How are yer ? Was going to put my pearls of wisdom, but compared to Paolo and Tina, my wisdom would look like a child’s crayon drawing next to a Rembrandt… Sorry for your loss, and sorry you’ve joined this particular club. ( But it can make you smile too…) Andy
Thank you all for your messages of support.
After browsing some of these boards I guess I’m tremendously lucky - I’ve had Tecfidera since February, I have a MS Nurse who I see every three months and a marvellous community physio who comes to my house.
My main problems are in my mind - accepting the changes!
Hi Jayne, I’ve been diagnosed for 3 1/2 years now after losing my mam and having my third child. It’s been tough at times and finding the right meds to suit has been quite challenging…all sorted now. Positives are my hubby does more than he did to help and work are acceptant to my condition. My 2 teenagers are thoughtful to me and appreciate when I’m fatigued out!!! Keep healthy and try and stay active…you’re not alone xx
Hi Jayne,
Like Carraboy has said I won’t give you anymore pearls of wisdom but life goes on and you learn to cope with whatever happens. You are still you and nothing will change that even when your body says different. Rest when your body says rest it gives you more energy, just keep your chin up and remember we are all here for you. (((((HUGS))))).
No amazing insights from me either. I’ve only been diagnosed for 4 months, and one thing that’s stuck with me is what the MS nurse told me. Take lots of breaks. Do half an hours cleaning, then have a break, and repeat. I’d been doing that myself anyway, due to feeling exhausted, but it was a relief to hear it from someone else. I wasn’t lazy, I was already managing my fatigue as best I could. Listen to your body!
I also kept a diary. Nothing fancy - just made a calendar in Excel (a month a page), and noted down any symptoms I had. This worked better than just a list of dates, as it was easier to see visually how often I have symptoms. I wrote down anything and everything, no matter how minor it was - even if I thought it was nothing to do with MS (but not if I knew it was nothing to do with MS, due other medical conditions I have), and how long it lasted. I’d been given the metaphorical ‘slap on the wrists’ by my Neuro Consultant because I’d been ignoring symptoms and blaming them on being overweight and getting old for years. My MS nurse was very impressed and said it was very useful, and has taken it away to go through with my Neuro.
Fingers crossed, now you have been diagnosed you can work on a plan to move forward and manage your MS. I don’t think I’ve really come to terms with my diagnosis yet, and my hubby definitely hasn’t, but that will come in time. Everyone on here is really nice and chatty, and it’s lovely that some are really so very knowledgeable, and others have a great sense of humour that brings a smile to my face!
Jayne,
The positive aspect of a diagnosis is that you can stop speculating and fearing the unknown. Whilst there are no certainties you can start to take steps to cope with your new circumstances. I agree with Paolo , ensure that you are comfortable and confident with your neurologist and specialist nurse, and trust that they are making sure that access to medication is not delayed. Do not be afraid to make a fuss. Some people are more concerned with targets and budgets than giving you the very best tools to help you maximise your chances for the best way forward.
All the best Mick