M.E. Awareness Day

Today is M.E. Awareness Day. Today is the today when M.E. patients all over the world from their beds or chairs try and spread the word about the existence of this disease. In Northern Ireland an M.E. support group has managed to get several public buildings turned blue (the colour associated with M.E.) and last year they managed to get M.E. trending on Twitter – something that they are attempting again as we speak.

If you are a regular reader of my blog, then you should by now understand what M.E. is and how it effects a patient. If you are a new reader, I recommend you have a read of some older blogs.

Today I don’t want to go over old ground and explain in detail the impact a chronic debilitating auto-immune disease has on your health. Let’s just leave it at the fact that it impacts on every aspect of a sufferer’s life causing extreme fatigue, pain and brain fog.

Today I want to celebrate patients. There are few diseases out there so misunderstood and so poorly supported by the medical profession. M.E. patients therefore should be celebrated for their ability to keep on fighting for proper medical support in the face of a society and a medical profession that often abandons them to their fate.

They should be celebrated for waking up each morning and retaining the determination to get out of bed and get dressed despite their pain and exhaustion.

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They should be celebrated for retaining hope that they can have a positive future despite a seeming inability to even begin the process of changing anything.

They should be celebrated for supporting strangers from all over the world experiencing the same illness for this enables people to feel less alone. This enables people to keep up the fight despite the odds being against them.

They should be celebrated for allowing their experiences lead them into new careers as writers, doctors, M.E. experts, forum moderators plus many more careers. They should be celebrated for choosing a career within which they can spread the word on M.E. or provide suitable medical support for those who are still ill.

They should be celebrated for retaining a sense of humour about their illness when the other option is to cry.

They should be celebrated for crying in despair when their other option is to keep it all in as a dark shadow over their lives.

They should be celebrated for training themselves to become M.E. experts when faced with doubting Thomas’s in the medical profession. They should be celebrated for the fact that they know more about their own illness than 90% of the medical profession.

They should be celebrated for seeing their illness as an opportunity to change their lives and that of their families for the good despite all signs suggesting otherwise.

M.E. patients could be considered victims of this disease. There are definitely days, weeks and months where feeling like a victim is the reality of how we feel. There are always dark days where being a strong fighter seems an impossibility. There are days where hiding in bed pretending nothing is wrong is the greater force in your life.

M.E. patients are not victims however. They are strong willed, determined, caring, loving fighters. They prove themselves day after day to be worth fighting for. They represent a wealth of intelligence and good character just waiting to re-enter the ‘world’ and be a force for good.

So on M.E. Awareness day just take a moment to recognise that these people exist. Take a moment to recognise the incredible job they do each day by simply getting through the day.

Add a blue M.E. ribbon to your Facebook or Twitter photo, share this blog, comment or simply recognise the amazing group of people out there in your thoughts.

Add a blue ribbon to your Facebook or Twitter account

See also my new blog: Me Opinionated! Really?

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8 thoughts on “M.E. Awareness Day”

  1. Okay, my version of fridays talk. Dad can send his as well.

    Dr shepherd inspired confidence and was so caring and understanding even when asked the daftest questions.  The meeting itself was run crappily.

    He recommended work by  a dr willie weir, n,irl. Infectious diseases guys he thinks can be very on the ball for m.e. Also a prof peter beard? ! Glasgow, physchiatrist . Prof anne mcardle, liverpool on muscle research. Prof david nutt, imperial college on sleep.  Sodium oxybate.  Royal free (ucl) collecting blood samples for research purposes.

    Results of san fran meeting etc on me assoc website so I will ignore that bit.

    Reckons on a genetic predisposition but not hereditary.. v. complex.

    Drug rituximob? Maybe a good drug. Low cortisol levels often associated. Neuron inflammation in the dorsal root ganglion.. the knotty bit.. check online supplement.   Recommends a PET scan. Important  to screen for adult onset coeliac disease. Check cortisol levels

    Modafinil treats nacrolepsy helps some me. Rituximob used for lymphoma,  in norway hopeful results. Uk trial to start. 

    As I said speaking to him privately he said bristol specialises in physical side. Nuneaton area guy endocrinologist, he finds good. Asked about neuro physiotheraphy looked blank so I glossed over it. He was asked about himself.  He reckons 70 % of what he should be on his best days.. has tried everything .. pacing only thing helps him. If he has a bad time he has to go back to square on with complete rest but ‘recovers’ quicker now. When speaking to me he said did I mind if he sat down .. feeling low.  

    Q10 seems to be what the audience found most helpful. 

    Ok dad probably heard other stuff.

    Might help but I think you know all this. Mum

    Sent from Samsung tablet

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  2. Hi Karen
    I started reading at work and had to stop!
    It became my awareness day share.:-)
    Also yesterday a fellow sufferer and distant colleague who has struggled and been in denial for 10 years with the resultant boom and bust took a nose dive yesterday. It was the first thing i could think to send her.

    Thankyou so much
    Lorraine.

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    1. Wow. To think that something I wrote may in a very small way have helped someone who was feeling low is extremely moving. It’s not why I started to write but it is certainly motivating to hear!! Thank you.

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