Support-the act of bearing the weight of or strengthening

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!

"I understand...."

My elephant has lost a few pounds this morning I think, still sitting on my shoulders, but lighter than it has been for a while. The first thing to recover, when I notice I feel better, is my horrible, down in the dumps moodiness.

"Hooray!" I hear my friends cry in chorus! For, tis they who bear the brunt of my 'sharing the joys of ME/CFS!' (Otherwise commonly known as, 'moaning on' about the pain and my limitations etc!) They are a stalwart group, who's support is the best cushion I could wish for.

I am blessed with many friends who support me in many ways, some willingly and some I think who are totally unaware of what they do and how much I rely on them.

At the weekend it had been arranged that my friend, her partner and two children were coming to lunch. I was having a particularly bad time of it, and anyone else, I would have cancelled immediately. I was, if I'm honest, toying with cancelling them, but am so glad I didn't.

They arrive and slot into our home. And, after initial chats and a cuppa, my friend took over in the kitchen, cooking for 7! She even shopped for it cos she knows that's something I won't have been able to do.

She cooks, serves (waiting on me especially!), and arranges the clearing away operations. The men being 'press ganged' into kitchen tidying and dishwasher 'feeding' afterwards. Then, she scoops me up, with a caring "Let's go get you laid down somewhere." and takes me to the yurt.

She then lights the fire, makes tea, and puts up with a very tired and worn down me. We talk a little, sit quietly a little, laugh a little. She should be bottled and given out on prescription!

And then, after all this, I have to ask them to leave as I could no longer manage to be there, laying down or otherwise. Without any fuss, she tidies away the tea things, gathers up her family, and is gone. She texts me from the car ....

"Thanks for a nice afternoon, don't feel bad about needing to go to bed. I understand. Take care."

Need I say more! All that and she still thanks ME for a nice afternoon! She has no idea that single handedly she has (albeit very caringly, and gently) shaken me up and turned my black mood around, instead I am now counting my blessings with this illness.

I have such healing and comforting relationships in my life, due in no small part to ME/CFS and the elephant I carry. Ok, now I'm in serious danger of getting schmaltzy and sentimental, so I'm off!

But, if ever my friend reads this, I mean EVERY word and more! You are truly one in a million!