Hi everyone. I’m new to all these forums. I was diagnosed in may 2020, the very first lockdown we all had. My brother was diagnosed 10 months before me so been a very trying 18 months or so. I don’t think I have really come to terms with having MS at all but I’m trying to be as normal as possible. How and when did everyone come to terms with your diagnosis?
Truthfully i keep thinking i havent. I am convinced its a mistake. The neurologist got it wrong even after all the years of trying to get a diagnosis for me.
Strangely enough yesterday I said to my daughter being told you have a life long disease is just too much. But in my heart I know as slowly things are going downwards. I worry for my two girls. I often wonder if my eldest is worried she has it so i try not to be weak in front of either of them, or go on about my symptoms.
I was brought up with my grandad with parkinsons and when we came back from abroad and we would stay with them, i would help with his care. I was only very young but i loved him a lot. he was a lovely kind man. Then sadly my dad got sick he was RAF did a stint in Christmas Island and slowly over the years deteriorated. The MOD doctor said he had Lupus so i had to watch him slowly deteriorate with that and also eventually he was diagnosed with Cryoglobulinemia. Over the years pop lost mobility and was always fatigued in terrible pain especially in his feet. We were never allowed to get near his feet. I do the same I often wonder if he actually had MS.
His cryo, effected him badly his kidneys slowly got worse etc but that could have been down to lupus too. so i was never really bought up in normal healthy home. My mum was the healthy one.
so hve i excepted my diagnosis just not sure, but i have learnt to live with it.
Hi & MS takes over and to be honest after a 5 year nightmare I have not yet come to terms. It seems individual for all.
unique and complex are two words uttered frequently
Welcome to the forum. What a hell of an introduction you and your family have had to MS. Both you and your brother diagnosed relatively close together. Then Lockdown made it even harder.
I kind of like CC and Cruella’s comments. CC, ‘truthfully I keep thinking I havent’, and ‘it’s a mistake’. (Not really cruel) Cruella, ‘unique and complex are two words uttered frequently’.
Personally I don’t think it’s an unhealthy thing to not accept MS. Let’s face it, I accept people coming to visit who I invite and I like. I plan some nice food and lay in (or set Mr Sssue the task of buying) nice wine and am very happy to d9 so. If someone I don’t know, or dislike just appears on my doorstep at 6pm and demands a gin ‘n tonic, a share of my dinner and a few glasses of wine then complains about the quality of the food and drink, I’d be royally plssed off and would happily show them the door.
So yes, after some years, I’ve come to some kind of, ‘OK yes, it’s here, it well and truly has me in its’ s0dding grip. I didn’t invite it, I don’t want it, but I have no chance!’ I don’t think that exactly counts as ‘acceptance’.
But we are often asked this question but people who are recently (ish) diagnosed. Some people say they’ve learnt to accept it after time. Others that they’ll never accept it. It’s all a matter of keeping a perspective that allows you to live your life as best you can despite MS.