I was diagnosed with PPMS in April 2014. Any thoughts/ideas from other people on how to help my brain process this whole MS malarkey. Thought I’d be “over it” by now but constantly on my mind. Pain and fatigue an issue.
First time on the forum so bear with me. Thanks.
Hi Kirsty.
Living with something as mammoth as MS (in my case it is HSP… similar to MS), takes some doing.
But the thing is this, all of us on this forum either has it, something similar, or cares for someone with it.
There is life after a diagnosis. We are here to verify that. A good life can still be achieved , but what we need to make that happen is a good support network around us, be that personal carers, an MS nurse who listens, a GP who doesn’t dismiss our fears, a neuro who understands the desease and whatever medication, or diet, or supplements that really make us feel better.
Friends and family are really important. If they don’t 'get it , then you can be banging your head on a brick wall…so don’t let those folk bring you down…hard I know, but don’t waste precious energy on something you can’t change.
And that’s about all my best advice hun!
And NEVER beat yourself up for having a bad day! If you are having one, then curl up under your duvet, eat your favourite food, watch rubbish telly, then go to sleep. Tomorrow is another day! (Scarlett O’Hara)
Love Polly xx
Hi Polly.
Thanks for the reply. Definately try and get the rest days but guilt still pops in now and then.
My hubby is a good support and although friends are aware, life goes on for them and as I don’t look ill, I don’t like to keep reminding them.
Neuro dr wants me to see a psychologist to help process the MS, as it’s always on my mind. He also wants me to start neuropathic painkillers in the thought if I’m not in constant pain then it won’t be constantly on my mind. I can see what he says but to me,at the mo, taking tablets is a big deal.
I know I can do this but need some extra help.
long term conditions are poop.
Love Kirsty. X
There is no time scale for when coming to terms with anything. it cannot be forced, there can be no expectations, it is entirely subjective.
MS is especially bull5hit due to the vast variety and severities of the symptoms and thus prognosis.
I think the only thing you can reasonably expect to do, is to manage your day to day challenges, whilst trying to maintain an optimism for a future that is still undecided and never foreseeable.
Maintain the courage and endurance to fight the good fight; look after yourself nutritionally, psychologically and physically. Do not neglect your meds, your vitamins, your sunbathed mushrooms, your trips to the neurologist, the blood test labs etc and just do your best to continue to muddle through this joke called life.
All the very best to you.
Thanks. I’ll get there. No need to push acceptance I guess. Slowly but surely.
a whole relatively meaningless vocabulary has evolved around m.s. - e.g.
‘acceptance’ - ‘coming to terms’ - ‘processing the m.s.’
I suggest you stop trying to get ‘over it’ because it’s impossible to get ‘over it’
We have a nasty condition which will gradually get worse. It will very often be in the forefront of our minds because it is a very variable condition and new symptoms come and go - old ones may reappear. We may feel fatigued for no apparent reason.
Our daily life is influenced by something - m.s. -that we have little or no control over and the danger is we can become obsessed with the m.s.
Hi hun, i was finally after ten long years diagnosed February. What made it even worse for me is I was diagnosed and my mum died the same day in hospital before i could finally tell her what had been wrong with me. I found that harder then anything to cope with.
I am not sure you can get over the diagnose, you can just get used to it and learn to live with it. I have been living with it slowly on and off since 2000 but the next big crash was in 2006, so basically from then.
The pain is the issue for me. I have tried all the MS drugs for pain non suit me. I have now settled on a very good diet which is high in B12, D, and lots of good stuff like omega 3 and 6 etc. I dont eat salt or high sugar and eat a Mediterranean diet oh and i dont drink either or smoke. It does and has helped my fatigue.
You have to learn to pace yourself. Dont push yourself or set too high a limit only for you to fail.
This year just chill with it, and get used to it. It really does get better with age and time. You soon learn to listen to your body. I know if i get any signs of vertigo or feel nauseous it means i have overdone it, so i slow down again.
Just try and be normal as much as you can really.
People say to me, well you look so well really, and I say to them, I am not ill just NEUROLOGICALLY CHALLENGED lol, they love that, and it is true. I am not ill per se, in actual fact in the grand scheme of things I am healthier then most people I know.
So dont rush acceptance, just be yourself, enjoy your life, and then one day you will wake up and the first thought will be of something entirely different, like the sun shining … it really does you know even with MS.
Hi Kirsty,
I like to think like someone stranded on a island.
It isn’t the life I expected and it isn’t the life I planned for; but it’s the only life I’ve got.
So I have a look around and see what’s available to make it bearable.
When I’ve got the hang of that, what have I got to make it good?
So what’s good for you, given your limitations?
Anthony