Firstly I NEED to say that none of what follows in any way refers to you, my friends. You are my support, my outlet and for all this I thank you.
I fly through my world very much alone. Most of my close or extended family are somewhat less than supportive, the subject of my health is rarely discussed or acknowledged. If I do venture to talk about some aspect of it, maybe because it is particularly difficult or worrying, then I'm met with almost universal indifference.
I know that it could be an attempt at denial by people who love me, but it never feels anything other than rude, hurtful and demeaning. I am left with a nagging doubt about how much they actually care. So, as a result, over the years I have learnt not to venture much information, as just keeping it to yourself is safer than trusting that others might acknowledge, and when they don't it hurts too much to keep putting yourself through.
Like sitting at the top of a steep hill, on a bike. Do you risk something, be a little brave and trust that if you ride down the brakes will stop you, or do you get off and walk, keeping things safe, cos the brakes didn't work last time, or the time before, and you got hurt.
Not the best analogy ever, but hey, sorry, ME-brain!
This is tough enough when it's the people you see occasionally, high days and holidays, but what about those you live with, the closest family of all?
I have been struggling for 10 years, trying to make my hubby aware of my illness and symptoms. You'd think he had a handle on it a little by now, but it appears not. Not only does he leave housework etc for days/weeks, till whatever has put me in bed has passed and I'm vertical (however wobbly!) again, but most weekends he sends me out to do things, the latest being to manhandle and collect 2 sacks of pig food! This is just typical behaviour, by no means the only examples dear reader!
I try to say what is happening to me, what I'm experiencing, especially on the days things are teetering and I really need to take extra care. I try to make it 'user friendly' and relate to things he might have an understanding of. Such as my almost perfected 'my muscles have no power today, lifting that mug of tea feels like it's a bucket'! I know, I know, genius!
Over the years I have come sadly, and reluctantly to the conclusion that he isn't really bothered. I reached this conclusion by the same method as we were all diagnosed, by a process of excluding all other causes first!
I tried the 'he's scared', no go.... then there's the 'he doesn't understand cos it's such a hard thing to get your head around' no go, after all these years and lots of explaining. I've comforted myself with the 'he's just hiding his head in the sand and hoping it'll all go away' no go....10 years, total indifference when I, or any of my friends speak about it has lead me to diagnose..............
A severe case of U.M.S. (Unsupportive Male Syndrome) with tendencies towards CCL (Couldn't Care Less)!
Not an easy diagnosis for us spouse's to live with but I'm doing my best!