Living with ME · ME Awareness

Shepherds & Warnings

Wednesday and a red sky sounded out the morning. By mid afternoon a stranger sat at my kitchen table sounding out my husband and me.

This stranger wasn’t Santa Claus on an early expedition. She was a local welfare officer and so like a previous meeting with such an officer, I scrambled to think of my many symptoms on the hop as I explained the only change to my condition was the fact I’d been pulled off GET (Graded Exercise Therapy) as it had made me worse.

I’m used to the microscope by now and only recently found myself explaining yet again to a family member the concept of good days and bad days and how my symptoms continually fluctuate. Then there was my explanation as to how easy it is to ditch the OCD tendencies I once displayed, detailing when you’re at the kitchen sink and there are ten dishes to wash and you’re struggling to wash seven of them it’s very easy to walk away from the remaining three.

Such conversations are frequent occurrences in my life, as are the microscopes and the judgments and the querying glances.

Now I know I could walk away from them, ignore them and pass no heed as to their tone and voice but I refuse to do so without utilising my voice. And so each time I’m met with a comment or stare, I fight. Providing examples as to what it’s like living in this body and what life altering changes ME has brought to me and to my husband.

It’s sad I have to vindicate myself and my illness so frequently and sad the knowledge and understanding towards ME – a chronic illness  which has been around for decades  – is still not present in today’s society.  When was the last time a cancer patient or an MS or Parkinson’s patient had to justify themselves to the world?

I believe the only way understanding and recognition of ME will ever break through this barrier of ignorance is by using my voice and so I will continue to answer the questions and continue to explain what ME does within a home.

I owe such a fight to the severe ME patients bereft of their voice.


4 thoughts on “Shepherds & Warnings

  1. You always manage to express ME so eloquently and gently yet getting the point across. I totally agree with the frustration of constantly having to describe ME in ten words or less because your family member or friend has lost interest after that. I usually just say that I am having good days and bad days. But we all know that even that has a different meaning for us. And that is not even mentioning the medical profession and other professionals…
    How do we get our voices heard when there are days we can’t even speak or string a sentence together.

    1. Wendy that’s a question I’ve been left asking myself over the past few days and the answer has yet to arrive. All I know is that when I can speak, I will.. I only wish I’d spoken more on Wednesday as that I’m afraid wasn’t a day for more than ten words at a time!

  2. Like you, I don’t get out much. But thanks for reminding me that talking to people is part of the mission of being sick when your illness is not widely understood or recognized.

    I am trying to do that with my fictional heroine in Pride’s Children, but am having a hard time getting back to writing the second volume in the trilogy after we moved, and the marketing for PC Book 1 is down to handing out my card and a brief description when the subject comes up in my new retirement community. Two or three people here have read it – and said not much.

    I am feeling quite invisible.

    At least the new doctors here have not been actively negative; not informed, either, but at least not disbelieving when I say how it affects me. Again, feeling invisible with my symptoms being still, fortunately, those I’ve learned to handle myself. Don’t know what I’ll do when the current prescriptions for painkiller runs out, but I’ll face that later. It’s just too much.

    And I want to keep all the energy I can for the writing, since I believe the answer will come from research sooner or later, and I’m too exhausted to contribute to that.

    I hope your visitor wasn’t the officious kind.

    1. We really do have to be the advocates we can be when meeting others but on the days when we just have it in us to smile and say hi, well then that’s all we can do on that day. It’s not straightforward or simple, that’s for sure.

      At least on your end you have doctors who will hopefully remain in your corner, fingers crossed and given time, neighbours who will learn to understand your limitations and symptoms.

      Time is our only true friend right now. Time will give us our answers.

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