Sunday 13 November 2011

Supportively speaking

There are many things that can help you live and manage Fibromyalgia, some physical adaptations can help, adjusting things to fit around life as it is, not how you want it to be. If you work getting as much help as possible, etc however one of the most overlooked and yet the single biggest source of help is a support network of people. If you don’t have one then this debilitating condition can and does rob you of so much it’s very easy to fall into despair.

I’m extremely lucky I have a fantastic group of friends and loved ones who pick me up when I’m down, give me a hard stare when being foolish and join in the fun when it’s on offer. I feel like I want to make an Oscar speech naming everyone - but if I left one person out and they felt hurt id feel terrible so I won’t. Except to say they know who they are so my lovelies this is dedicated to you

You may be thinking – everyone needs people to turn to sometimes, that’s true but if your life is often reduced to the narrow confines of your house and maybe even your bedroom then being able to express how you feel is vital, having practical help is often a godsend, although I have experienced both sides of the coin. I lived alone (except for the teen) for 18 moths before I moved in with lovely man.

Struggling to cope with even the most basic of tasks can leave you unable to do more than spend the day on the sofa, eating a bowl of cereals and watching crap on TV, tweeting or loosing yourself in (insert game of choice) – what ever, the point im making is without any support, facing a lifetime of pain alone is not one anyone should face. Sometimes family and friends don’t understand, and tell you to get a grip and move on accept it and you will be fine.

I don’t think I can really get across how seeing the same four walls 24/7 at times is demoralising, the “how was your day darling” conversation is grim, do you talk about getting stuck on the stairs, not making it to the loo quick enough or a text telling you they will be late home fills you with dread, not because your worried but because your desperate for a cup of tea and scared you will injure yourself because your hands are bad.

You become adept at plastering a smile on your face, and maybe, just maybe, manage to get dressed 10 minutes before your loved one walks through the door, doing the washing up or starting dinner when your day has mostly been spent in bed or the sofa/floor/chair delete as appropriate.. It’s a game, they know your bad, you know your bad but the I have to be “normal” becomes important. Of course not every day is spent like this, good days are treasured and you pack as much in as you can. You score 10 points for every activity you manage

 Bake/get drunk/see friends/go shopping/drive too fast/make love on the kitchen table/stay up til 10pm.

Having a safe supportive place to go to becomes ever more vital, just admitting to yourself, I feel crap, I cant cope or what do I do when I feel like this is often the only thing keeping you going. No one wants to be a burden or endlessly offload to their loved one or friends, no matter how much they want to know. I’m not saying this is the case in everyone’s life, I am generalising to an extent. For instance, no matter how brilliant LM (Lovely Man) is, on bad days without his support id be a smelly, hungry, desperate, unkempt woman.

At the moment accessing support online is crucial for me; besides LM and the teen (good, for cups of tea) my brilliant group of friends and family are now 50+ miles away. You see, I moved cities in the summer to live with LM  it was a daunting thing, Id lived in the same city for 20 years, had friends I could call on at a moments notice. It was not an easy thing to give up but loving the silly sod meant I was prepared to do it, of course with modern tech I can keep in touch but that simple thing of popping in for a cuppa is sadly lacking.

This is more serious that I usually write, I try and make light of things while being honest, but after a bit of a tough time yesterday (tough as in a row) I sat in the car and sobbed thinking I so need to have a chat, time out to calm down and be with a friend, it bought it home to me in stark reality that I need to do something about it and soon, and how much I have come to rely on the internet support group I’m a member of.

They are funny, thoughtful, inspiring and put up with my wordiness – its not always about Fibro we share the ups and downs of our life, give up our spoons to help anyone who needs it. It’s a relief sometimes to just say it as it is, and not have to explain every nuance of Fibro, to check out and share your worries, fears and pain. So if like me, you have Fibromyalgia and you are struggling to be “normal” but don’t know where to find that support then try looking here:

UK Fibromyalgia – an excellent website full of information and a supportive online forum & support group info

Fibromyalgia Association – a UK charity working on behalf of Fibromites, there is a forum and support group info

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