a week with ME … Q3
I know I keep my ‘fortnightly catch up …’ journal posts, but this blog post is a more in depth journal bog post about living with ME.
. . . a w e e k w i t h M E . . .
day 1: Monday …
… we see cardiac diastolic dysfunction in almost every case… there are patients whose diastolic dysfunction is so low/poor that they would fit well into a cardiac ward awaiting transplant…
The whole idea that you can take a disease like this [M.E./Chronic Fatigue Syndrome] and exercise your way to health is foolishness. It is insane. —
day 2: Tuesday …
… ME/CFS has a greater negative impact on functional status and well-being than other chronic diseases, e.g., cancer or lung diseases, and is associated with a drastic decrement in physical functioning. In a comparison study ME/CFS patients scored significantly lower than patients with hypertension, congestive heart failure, acute myocardial infarction, and multiple sclerosis (MS), on all of the eight Short Form Health Survey (SF-36) subscales. As compared to patients with depression, ME/CFS patients scored significantly lower on all the scales, except for scales measuring mental health and role disability due to emotional problems, on which they scored significantly higher. — Frank Twisk …
day 3: Wednesday …
… without health, life is not life; it is only a state of languor and suffering-an image of death — François Rabelais …
day 4: Thursday …
… The people in whom CFS often takes a hold are those driven, workaholic, goal driven, perfectionist, ‘never say die’ characters. This is because these people ignore the normal cues that make us stop striving – they continue despite symptoms of fatigue and pain in order to achieve. The achievement is at the expense of their health. Furthermore, these personalities are more likely to turn to addictions to mask symptoms in order that they can keep going. — Sarah Myhill …
day 5: Friday …
… I have seen three beautiful young girls in their 30’s within the last few years pass away due to this illness, who not only fought their battles with this illness but who played an important role in raising awareness of ME.
Yes you can die as a result of having ME if you become at the severe end of it which 25% do. — Tracey Browett …
day 6: Saturday …
… another day, another migraine …
day 7: Sunday …
… Well, I’m gonna get out of bed every morning… breathe in and out all day long. Then, after a while I won’t have to remind myself to get out of bed every morning and breathe in and out… and, then after a while, I won’t have to think about how I had it great and perfect for a while. — Sleepless in Seattle …
what kind of a week was this …
This was a week that followed a pattern of how most of my weeks are right now. The only words I can use to describe them are heartbreakingly soul destroying …
It was one of those weeks where I got from one migraine to the next and I can’t do, or be bothered to do, anything. Hence, the quotes to help you know I was feeling this week.
follow up …
After the years is complete I won’t follow up with a regular ‘a week with ME …’ because they don’t add anything to the blog as whole and only serve to remind me of how little I do and how much I suffer.
a week with ME … series schedule (March, June, September, December, to be posted either end of the corresponding month or at the beginning of the following month).
Let me know below what you think …