This blog post is a little different, its more personal and I hope insightful…

This post had been inspired by four things, firstly, and the easiest is, its FM ME/CFS international awareness day. The second was a deeply distressing and hopeful post by Sue March on her blog Diaries of a Benefit Scrounger about her up and coming serious life threatening surgery, entitled Surgical Roulette.( http://diaryofabenefitscrounger.blogspot.co.uk/ )

Thirdly an article on the Daily mail website by Sonia Poulton about Me a very insightful and very much needed exposure of this governments and the NHS’s denial and neglect of the true severity of ME. The article was called All in the mind? Why critics are wrong to deny the existence of chronic fatigue.            ( http://www.dailymail.co.uk/debate/article-2141230/All-mind-Why-critics-wrong-deny-existence-chronic-fatigue.html#ixzz1ueIZmHva )

And finally a blog post by Beth Morris in her fabulous You dont Look Sick blog entitled, Is it Psychosomatic-then. Which looks at why we, meaning long term and chronically ill people tend to make light of our health issues. ( http://but-you-dont-look-sick.blogspot.co.uk/2012/05/is-it-psychosomatic-then.html )

So where to begin…

Well,lets look at today, what am I supposed to be doing… Well we are out of bread, milk, and butter, so normally my ever present ever helpful hubby would pop down the nearest shop or cycle to the supermarket and get us what we need… no problem you say how does that differ from other folks? Well for the most part it doesn’t although it would be nice if i could to do it myself, but if i do that then i may not get anything else done like plant the runner beans my four year old brought home from school this week with instructions to plant it and record its growth… like i haven’t got enough jobs to do… or start to decorate his bedroom… or try to fix my now defuncked washing machine…

But all of this is besides the point because my lovely wonderful hubby has a cracked the cartilage in his knee and has some other problems with his leg and cant really help me do anything much… so the cared for becomes the carer… now normally caring for ones partner is a privilege and something that you would expect to do and I feel no different about that than others, however I am aware that, that is going to require me to do all the things that he normally does for me, that he does to help me stay well ish… as well as everything he cant manage for himself. And that will make the precipice i live on trying to prevent a flare, doubly difficult to teeter on

So how am I today and am I up to the challenge…

I woke up this morning with that feeling you get when you have had to little sleep you know the one, your eyes feel like they are full of sand and your brain feels kinda shrivelled like you haven’t had enough fluid, you’ve got a small head ache that you know is going to become a monster any time now… I feel so tired that i could, if i felt it would make any difference and or do any good, cry my heart out, but quite frankly I’m to tired to summon a single tear. And I’ve had about ten hours sleep… Additionally my back has been in spasm for about a week, it’s the lower back muscles that help you stand, sit, walk, breath… yep and nothing touches it because painkillers dont work with FM. My knees are burning and have been for weeks, and I have a condition in my feet that means walking feels like I’m standing on glass all the time… My shoulders are all tensed up from the stress of just copeing day to day which will trigger a migraine like Fibro headache before much longer, and I’m aware that this has and could go on for weeks before the surgeons decide if they are going to sort my partners problems out, that is of course after he has to have some special scans that require him to become radio active and consequently cant be near our son for twenty four hours so I’m on me own mate…

But this is not a poor me post, well at least not only a poor me post…

I generally feel like all I’m up for is lying on the sofa snuggled under a blanket watching something on telly that requires the few brain cells I have that aren’t either dead or starved of blood, to be able to digest what I’m watching. But and it a big one (no snickering in the back there) I cant do that today nor have I been able to that for a very long time, having a four year old means you cant do that, least not since he stopped needing an afternoon snooze… He doesn’t understand that mommy is to tired or in to much pain nor should he, so I battle on and it is a battle, it’s a full time job just getting up trying to accomplish anything… and retain some self respect…

And this is the crux of the matter, self respect I think its why even on days like today I reply to easy enquires about how i am, with I’m Fine… the magical I know your not rally asking just being friendly but will do the eye roll if I actually bother to try to explain it… eventually you become so disenfranchised by this behaviour that you dont even tell your closest friends, if you still have any, or your new friends that have the same problems if you’ve made some (thank god for social net working) because you have become super sensitive to the I’m asking but I dont really care and will be embarrassed or even not bother to contact you again if you insist on giving me a litany of your health problems and their knock on effects in you life. 

Our society had become insensitive, and we have lost our compassion for people who are having a harder time than us with health or any other kind of problem. We are, and I am generalising here, a hedonistic society only out for number one… In many respects I agree with Ian Duncan Smith that we as a society need a cultural change (http://www.telegraph.co.uk/news/politics/9255348/We-need-cultural-change-to-get-true-welfare-reform-says-Iain-Duncan-Smith.html ) but unlike him however, I do not think we need to become less compassionate but more so.

How hard is it really to spend half an hour of your time listening and trying to empathise with someone in horrendous pain and fatigue when you can walk away scott free and go back to your lives unscathed… is it really such a hard thing?

And what of us the sufferers is it really so hard to tell the truth, to be bold, be brave and risk the loss of someone’s compassion by being truthful and living in the moment…

Is it harder still to tell the truth because for those few moments it makes it real… THIS IS REAL AND I DONT WANT TO ADMIT I’M STRUGGLING TO COPE AND IT SCARES THE CRAP OUT OF ME… We should shout it, be un-afraid, Be honest if we want people to really see us, we cant show them a disguise and hope they can see through it, we must confront our fear and confront their lack of compassion head on, with out the mask… And I am talking to my self here as much as anyone else and yes I know it is hard to tell the truth… Dxxx

Fibromyalgia Association UK http://www.fmauk.org/

 
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