Just as a new day brings new hope, I was hopeful in the new Dr. we found.
I diligently and meticulously prepared my medical history, chronicling every detail of my ME/CFS journey from beginning to end. I carefully documented everything I went through in my quest for a diagnosis. I included all the specialists and doctors I visited, all my symptoms and set backs I experienced and all the tests I endured. I noted the name of my diagnosing Specialist and his important relevance in the ME/CFS community, as well as links to the document he prepared. I included photos. I wrote, tweaked, organized and tweaked some more until everything was in perfect order. On appointment day, I arrived early, in order to be organized, clear-minded and ready.
He was very personable, polite and not arrogant in the slightest. Great I thought and my level of hope increased.
He started taking my medical history and in the blink of an eye, it became obvious that hope was unfounded,
* Poof * Just like that, it was gone.
I no sooner had the words "CFS/ME" out of my mouth, when he uttered the most dreaded words by folks in the ME/CFS community.
"The most important thing with Chronic Fatigue ..... Syndrome (he almost didn't include the word syndrome), is diet and EXERCISE." (emphasis mine)
My heart sank..... but, it got even worse.
He went on to say the way for me to build up my stamina is to increase the amount of exercise I do each day. Start off slow, then add a bit more in each day and within a little while, I'll be as good as new!! Who knew?? (sarcasm there)
Whenever someone with ME/CFS hears another person mutter these words, it's more than obvious they do not know or understand ME/CFS, not even the basics.
To add insult to injury, he didn't want my prepared history. He didn't seem interested in treating "me", the whole me with the condition and issues I have.
I wanted to scream and tell him that advice was akin to telling a diabetic to increase their sugar intake each day in order to increase their tolerance to it. Half a cup today, full cup tomorrow, one and half cups the next day and so on. Keep increasing it and gradually you will increase your tolerance to sugar. Voila!
To those with a broken leg -- just take that cast off and run that broken leg off!! Each day run a little bit more -- one km today, two tomorrow, three the next day and before you know it, that broken bone will be all fixed up.
When it's looked at it in those terms, it sounds silly, doesn't it? We would never do it! However, the advice he gave me is as detrimental to someone with ME/CFS, with the same (or perhaps worse) negative effects. I know this from first-hand experience. I know this from others in the ME/CFS community.
There are so many other things that operate on this principal as well, like driving a car on a flat tire. Does doin that re-inflate the tire? No, of course not and continuing to drive on it makes it worse which causes further problems.
It is the EXACT same way with ME/CFS.
It's really not rocket science and yet for whatever reason, it seems so hard for most in the medical community to grasp.
To say it was a disappointing and frustrating appointment, is an understatement.
I should not have been so surprised and on some level I'm not surprised (because this thought process seems to be common place - most of them buy into it.) However, I was hopeful. Hopeful that this one may actually be the one, the one who understands the way ME/CFS actually works, the dangers of exercise and the reason why that thinking is so dangerous. I should have known better than to get my hopes up, I know that.
It feels like this illness will never be understood by the medical community. It feels like they aren't even trying to understand, that they want to continue on in the denying, unbelieving, ignorant state they've always been in.
Why is this?
When, will they get it?
Why can't they understand it now?
I have fought long and hard to improve my health to the level it is. I cannot and will not allow anyone to cause me harm or make me backslide to a low level of health, simply because of their ignorance.
Back to square one I suppose.
Frustrated but still trying to keep the
Balance........despite the chaos!