Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, June 28, 2018

Just passed my 7th sick-iversary

I'm usually aware of my sick-iversary (June 5) as it approaches and then I blog about it on the day it happens.  I like to use the anniversary date to reflect on the "big picture"-- to discuss where am I in my treatment plan and what I think are reasonable goals.  This year I completely forgot about it until yesterday.  I suppose that says something about how I'm now accustomed to being sick all the time.

I no longer hold out any hope that I will somehow spontaneously get better.  That doesn't even seem like a glimmer of a possibility.  I've also now tried just about every major treatment that ME patients use for ME (at least among those that are affordable to me and that I've deemed worth the risk), and none of them have led to great improvements, although some may have helped pause or slow the decline.  So the conclusion is:  If I'm going to improve significantly, it will take a medical breakthrough.  For that reason, I find myself visiting the ME message boards less frequently because I don't think it takes daily monitoring to know about a major breakthrough.  If there is ever a big exciting discovery, it will be impossible to miss.  There will be articles popping up on Facebook and other ME new sources which will spread throughout the community virally.  So now I wait.... 

4 comments:

  1. I feel very similar Patrick. My 8 years ticked over 21st June. I hold hope but not as strongly as before, plus I crashed out massively on Saturday so that just makes it feel even more unlikely.

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    1. Crashes have a way of casting a negative light on everything don't they? It's so frustrating.

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  2. For what it is worth, I am here waiting with you ❤

    Unlike others, I've had it for as long as I can remember. There is no part of my life that ME has not touched as I grew up with a parent who was also afflicted. I hold on to the desperate hope that I will one day know what it is like to have a 'normal' body. A 'normal' day. The concept is as fantastic and magical to me as any sci-fi book or film I've ever encountered.

    I don't even care if it happens when I am 80. I just need to know what actually living feels like. :)

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    1. I have had the same thoughts many times. Even if it happens when I'm 80, I will take it!

      Thanks for stopping by and I'm so sorry for what you're going through and the fact that you've had it for SO long. It's truly not fair.

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