Unadulterated Relief

As a teacher I have spent my career trying to instil in students a sense of the importance of respect: respect for each other, themselves and the world around them. I try and teach them that respect does not have to be earned. They should assume that everyone deserves respect from the off. If they live this way, then nobody will feel ill treated by them and respect should come back their way.

Since becoming ill, I have had to consider whether reality matches the ideal that I preach daily. Unfortunately, not everyone understands this basic human right of respect. Today’s blog is not meant to be a moan however but a celebration.

Yesterday I cried, I cried and I cried and I cried. The sort of hysterical tears that you can’t control as much as you want to. For once these were not tears of frustration, pain or anger but of sheer unadulterated relief.

Relief that somebody who understood M.E. deeply had shown me some respect. As always with this illness you have to go it alone, you can’t just sit back and assume the medical profession will guide you appropriately. In my search for my right to informed, respectful medical treatment I came across the National M.E. Centre. A charity that offers a free support service to patients suffering from M.E.

Yesterday Sue, a support worker, called. It took a few minutes to lower my defensive guard, a guard being built up by the lack of understanding about what is wrong with me by those in the medical profession. I don’t doubt those I have come across so far mean well (though maybe not idiot consultant) but I always fear that a lack of understanding could led them to suggest inappropriate treatment. Her specific questioning, the time she took to listen to my responses and clarify what I said forced this guard to just fall away.

She was kind, caring, realistic, human. More importantly she understood. I have never doubted that I have M.E. – I can tick off most symptoms on the list. It is only when somebody who truly understands the illness says you have it, that you can be sure. This was a relief in itself.

Not everything she said was good, there are realities to face that I didn’t realise I had to. She made me trust her however and this trust means I don’t have to face these realities alone. She is sending me information and will call again in two weeks to support me further. The knowledge that there is now somebody out there who gets it, who has lots of experience with M.E. gives me hope, hope that with their guidance I can begin to make progress, I can begin to stabilise and find a way through the myriad of symptoms and potential treatments.

Far beyond her practical suggestions, her caring yet professional support is what has filled me with this hope. Little does she realise that she has also brought relief to my husband and my parents. They have been desperately searching for a way forward for me. While I am not foolish enough to think that there is now a guarantee I will get better and get the service I need, there is at least someone there who understands.

Now I feel my fight for access to a pain clinic, a proper M.E. consultant and an occupational therapist is backed up by somebody’s professional opinion. I will still have to fight and there is no guarantee I will get to see any of these but at least I know I am fighting for something worthwhile.

So today my positive thought is – having experienced the deeply emotional impact of being respected yesterday, today I must ensure that I don’t judge people, until I know them. I must respect the fact that I don’t know what makes them the way they are. Equally, I must fight for the rights of others to be respected. It appears just a tiny bit of genuine respect can have a far greater impact than I have ever realised.

The National M.E. Centre

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7 thoughts on “Unadulterated Relief”

  1. I found this statement on their site which is positive: “We recommend and endorse the Canadian Consensus Document. We regard it as an extremely important contribution to understanding the physical basis of the condition. Future research should be directed to further defining the pathophysiology of the condition together with identifying the sub groups, which undoubtedly exist, with the illness complex currently termed ME/CFS.””

    Here in N.Ireland we are petitioning for CCC to be formally adopted.
    https://secure.avaaz.org/en/petition/Minister_Edwin_Poots_Fully_Adopt_CCC_for_ME_in_NIreland/?cHCXadb

    Only once a move like this happens can we be sure to be free of harmful psychiatric approaches and graded exercise therapies.

    Best wishes with your future care. I look forward to hearing what they advise for you.xx

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  2. Hi Karen,

    My heart has gone out to you struggling with what is happening. The frustration, fatigue and illness is ( as you say ) is made so much worse by the lack of anyone stepping in and taking care of us, advising us and making us feel that there is a route forward.

    Reading this post today it’s such very good news that you have found this support – it makes such a massive difference. ME / CFS makes our emotions more deep and sensitive and affects our over all health profoundly.

    Finding someone to advise and listen will alleviate some of those peaks and troughs – all of which are understandable when so unwell.

    Blogging is an effort when you are feeling rubbish. I wanted to say that I enjoy reading your posts – I identify with a great deal of what you are saying.

    If you are having a bad day and wondering if people out there are taking notice, they are.

    Thank you, keep on blogging ( no pressure – recovery is more important ) and I am wishing you all the best with your steps to feeling better now you’ve found the right support. I’m looking forward to reading more about it.

    Take care, rest as much as you can and more so – it is the top number 1 thing that is essential to a path to recovery.

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    1. Wow, thank you so much for your incredibly kind words. It is such a relief to have found somebody who gets it!

      I’m really enjoying blogging but I need to make sure to balance it with like you say rest!

      The support that it is out there on the internet is also so key to feeling supported and making progress. I value all of the blogs, forum discussions etc.

      I hope you are having a good day,

      Karen

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  3. Hi Karen,

    I am so glad you have found respect and understanding! Only a person like us with a “contested illness” could understand how good that feels. I am not from the UK, but I seem to remember some UK ME people not being big fans of Esther Ranzen who seems to be leading this org, though Dowsett, the founder is respected, I believe. So what I’m saying is here is maybe a flag that it would be worth it to go on a forum like phoenixrising or mecfsforums.com to see what people think about this org before following their recommendations or soliciting donations. The only UK org of which I am aware that everyone agrees is worth supporting financially etc 100% is Invest in ME, so I support them even though I am not from the UK.

    The fact that the person who talked to you endorses the CCC is good and they do say on the website they endorse the “Canadian consensus document”, they do also prominently endorse Fukuda.

    In any event, I am glad you have found some respect and that is worth something on its own independent of their exact position on the disease. Much good luck in healing!

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