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Needing some "virtual" support...please - Page 2 - Carers UK Forum

Needing some "virtual" support...please

Share information, support and advice on all aspects of caring.
So, so sorry to hear of this latest blow. I do hope that things may not prove as bad as you fear, and that treatments will help with the condition. This may sound naive and ignorant of me, but reading your post I guess I was struck by the phrase 'non-progressive' which does, at first sight, at least sounds better than the alternative....

Getting bad medical news is always horrific (and I've been through this with my late husband, so I do know what it feels like to be where you are and the ground cut from beneath you and you fall into that dreadful black hole of fear and disbelief), BUT, little by little, the mind 'gets used to' it, and you start to think looking forward (yet again) and coming to terms with what will need to be done now.

And, again, I don't know whther it can help or not for you, but there is always the 'comfort' (????) of knowing that it could have been a worse diagnosis (bleed on the brain, and so on). That's 'cold comfort' I know, but it could have been like that as it was.

B ut, right now, as you say, life just seems to be hammering you yet again, and I am so sorry that you have had this news to cope with now on top of everything else.

Kind regards, Jenny.
(((Hugs))) ladybird
Bad news is always like a sledgehammer - worst case scenarios go round and round the brain. Best to find out more and work out the implications then.
In the meantime - look after your son and (((((more hugs)))))
More (((hugs))) from me, Ladybird. You have more than enough to contend with without this. A silly question but does "non-progressive" mean that his condition will remain stable without further treatment? What are the next steps?
Thanks you lot - isn't it amazing how a few kind words from people you don't know can make such a difference?

Yes of course we're all on a roller coaster of emotions at the moment. My baby boy (ha, ha 34 years old) had to start his course of steroids this morning 12 tablets for three days to start with, reducing to two a day for days 12 & 13 and I put off waking him so he didn't have to take them as I knew it would make it all so real - silly eh?

He will have a lumbar puncture in the coming weeks and at that time we will be able to ask the Neurosurgeon all the things that we have since thought of and will no doubt build upon in the next couple of weeks. Once he had said "I'm very sorry to tell you this but........" the rest of what he said went completely over my head - he may as well have been talking in a foreign language, I took very little of it in.

I know nothing about MS, but everything I've read so far points to the best scenario being this has been lying dormant for years and he's had one small episode and may never have another or maybe some infrequent, but manageable ones. So that's good. However it does seem that with MS it's impossible for there to be any reliable prognosis so that could mean the worst possible scenario, but I'm trying to veer towards the positive as the Neurosurgeon was reasonably emphatic that there are no signs of "aggressiveness" and if it is going to be a bad scenario, normally the first "episode" manifests itself in a far more aggressive manner so we have every reason to be optimistic (I'm not sure optimistic is quite the right word, but you know what I mean).

I do feel that all those plates I've kept spinning around have fallen down today and there's no one to pick them up. I suppose it's a case of getting over this initial shock and getting our heads back into a better place. I feel like I'm mourning for the life my son should have had in the first place, and the little quality of life he has had has now been cruelly ripped away from him and I'm not making any apologies for feeling like that as it's my prerogative as a Mum to feel that way.

How many people here have said "Why us? This is not fair". - Everyone probably. Now it's my turn. Looking after my Dad has brought up all the normal challenges and frustrations, but he is just old & frail -life taking it's natural course if you will- but this is a totally different ball game.
Hugs from me. Such a lot to deal with but you know we're all here for you, even if it's only virtually.
Sorry to hear this Ladybird - Be kind to yourself as well as your son. (hugs)
Huge hugs from me too, so b**** unfair. You all have more than enough to deal with already.
I've sent you a pm.