In the post 2 below this, where I refer to my not writing about J’s MS, Heather Anne said “However, I think that it is also comforting for those of us who have a loved one with MS in our lives, to know that there are others out there experiencing the same thing.”
When J was first diagnosed, I read everything I could, and then some. I posted to bulletin boards, to newsgroups, to yahoo groups. I used MS chatrooms, I tried support groups – I craved information on this disease, and I soaked it up. J didn’t want to know all that – she still doesn’t – but she wants me to be able to answer any questions she has. That’s not so much the case now, but it was back then.
I used to drink, and I drank a lot, every day. I thought, on the odd occasion of giving up, but didn’t. I’d read on websites, newsgroups etc these stories by people of how much better they felt when they had got ‘dry’. Eventually, when everything was just right, I stopped the booze, and yes, much of what I had read became true – it is nice waking in the morning and knowing what you said the night before, it is nice not wondering if all the shopkeepers realise just how much alcohol you are buying. But the difference is that what I read in those messages was that there was a positive result if I quit drinking.
This is not some “Isn’t my life shit” sort of post, I’m thinking out loud and trying to be objective.
None of the MS information has any positive outcomes, unless you are in that lucky (!?) few who have one relapse long enough for the dx and then hit remission. It just doesn’t get better, there is nothing you can do – even science has no clue as to cause / effect with this one. So reading all that I did became very depressing, very depressing indeed. I unsubscribed from all the newsgroups, stopped using the chatrooms. I wanted – and still want and need – to vent about it all, to get the noise out of my head when things are bad, but what I can’t do is put J into a domain which she does not inhabit at all. That’s just not fair on her.
My daughter’s friends know she has a blog – she likes showing it off – and they know I have too. When we think of the net, it can blur into an almost faceless entity. It can seem that we are writing for someone, or no-one. We can look at our stats and see these hits from the Far East, from the America’s, from Europe, yet it’s also maybe the house down the street that’s looking. Is it fair of me to write something which will adversely affect how a neighbour may see her ? No … I don’t think it is.
And if I write – and do it here – how I feel, not only does that bring her into it anyway, but because it’s my writing, my point of view, it’s inevitably going to be a subjective view, and at times a very selfish view. J may have the disease, but I’m living with it too. Do I want someone to judge me on what I may or may not feel about a situation ? Someone who in all probability will never be in that position but will all too readily hand out their judgements ? No I don’t, that’s not fair on me. I am allowed to feel the whole range of emotions about this, and to not be criticised for that too.
The thing is though that I cope better when I do literally write it all out of me. It’s helped my mental health problems, and it has helped before when J has had a bad patch. So I need to write, but just not here. I haven’t sorted what the solution to that is yet.
I could go to one of these ‘Meetings for carers’ type things, but apart from the fact that such a place really isn’t for me, it doesn’t actually change anything does it ? At least at an AA meeting (not that I’ve ever been to one) the goal is something approaching better health (among others) – what’s the goal of going to a carer’s meeting ? Meeting someone worse off than you doesn’t, in reality, make your own situation any better. It may put it into a perspective, but it does not make it better. And with MS being the disease it is, it could well as be a foretelling.
So yes, it is comforting to know that others feel the same way, it can be useful for getting those nuggets of information which are generally hard won and little known, but right now, given where things are at, unless I can contribute positively to that, I have to exercise control over what I write and that means leaving the MS out.