Fibromyalgia Me/CFS awareness Day… Why is the truth so hard?

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.( )

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.            ( )

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. ( )

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 ( ) 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


20 Comments Add yours

  1. seventhvoice says:

    Really insightful post. I agree with you that many in our society are becoming less compassionate toward the suffering of others. I thank you for sharing your perspective.

    1. ravenswyrd1 says:

      Thank you so much, for awhile there I thought I had over done it… but then how can being truthful not be ok… If people have a problem with me then its there problem…:) Dxxx

  2. Jane says:

    Oh Debbie, I’ve been wondering how you do it, with a four year-old, plus all the work you do in the FB group and the Spartacus Forum, and I guess the answer is a combination of your strength of will and the support of your husband. You mustn’t feel you need to carry on with all this Spartacus stuff just now, you’ve got enough to cope with.

    I know I’m not nearly as involved in the Forum etc as you’ve been, but I’m sure I can pick it all up again, with Beth’s help. Please don’t do more than you can, but thank you from the bottom of my heart for the support you’ve given to everyone in the FB group, on the Forum and connected to Spartacus in whatever way. Your compassion, sensitivity and wisdom have been SO appreciated, but now you must prioritise yourself and your family.

    Lots of love xxx

    1. ravenswyrd1 says:

      Hi Jane, thank you so much for offering but to be honest if I didn’t have this stuff to keep my mind occupied, i think I’d loose it more often… lol maybe I was a little to brutally honest 🙂 and if it ok I’d like to continue feeling like I’m doing something kinda important… I’ve just ordered a new washing machine so that’s one problem solved lol Dxxx

      1. Jane says:

        You are VERY welcome to keep on with the work, Debbie – we would’ve missed you bigtime!! You’re such a valuable and brilliant member of the team 🙂 Well done with the washing machine, and I hope things improve at home soon. Life’s a b***er sometimes, isn’t it?

  3. ravenswyrd1 says:

    Thanks Jane… sofa sitting can be so boring lol, I’m sure things will pick up soon… I was just trying out the brutally honest thing… scarily enough I think I like it 🙂 Dxxx

    1. Jane says:

      I’m afraid I always go for the brutally honest – well, I mostly do for re physical, not sure I do re the emotional! Carry on and enjoy – as the saying goes, honesty is the best policy 🙂

    1. ravenswyrd1 says:

      Thanks Jayne… 🙂 Dxxx

      1. jaynel62 says:

        Because you’re (we’re) worth it xxxx

      2. ravenswyrd1 says:

        Lol we certainly are… 🙂 Dxxx

  4. Fiona Goffe says:

    Thanks for the blog…. I relate 100% to it. I have decided to be honest now, and put depressing statuses on FB which has meant most people have stopped commenting (i.e. ‘hidden’ me!!!). This is such an obvious reflection of the ‘real’ world! I’ve been in for over 25 years, have ME/FM, diverticulitis, hashimoto’s and loads of other things that may or may not be related and live alone – no-one every knows how I am or what I’m going through other than through FB!! It’s hard and it’s lonely… but other peoples’ honesty and sharing keeps me going x

    1. ravenswyrd1 says:

      Hi Fiona, I know its a difficult and sometimes lonely place we live in.. but I think that challenging peoples perception of long term chronic illness and disability is important… in the grander scheme of things… in the mean time FB and networks like it help us to cope with the isolation… Feel fee to join UK FIBRO (!/groups/235676626461366/ ) on FB if you like it one of the two groups for FM i run on FB the other being CORNWALL FIBRO for those down here in the wild and wooly country… 🙂 take care Dxxx

    2. jaynel62 says:

      Good for you Fiona, you’re obviously on the ladder of change. Best wishes


  5. I don’t have fibromyalgia, but I do agree with you that the world is becoming less compassionate. Surround yourself with people who understand what you’re going through and who will support you (online counts!) and forget the rest of them. Don’t forget to be a good friend to yourself, too – sometimes we have to learn to give ourselves what we wish others would give us, unfortunately.

    And thank you for your honesty. I learned a lot from your post and will come back to read more, if that’s okay.

    1. ravenswyrd1 says:

      Thanks so much, and id be in trouble if on line didn’t count 🙂 Dxxx

      1. I would be too. 🙂

  6. thank you for the post and thank you for caring xx

    1. ravenswyrd1 says:

      Thanks for reading 🙂 Dxxx

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