Thought for the Day:

Hope is the thing with feathers
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.

- Emily Dickinson

Wednesday, May 29, 2019

Sick Day

I've had some decent days lately where I've had the thought "my M.E. isn't too bad anymore".

I've been going for short walks, taking the dogs swimming, and taking my dad on short outings. (I've also been on vacation and avoiding working on my next online course.)

Some days, though, I feel just horrible. This is one of those days. I can point to at least three things I've done in the last couple days that might have caused this crash.

It's clear to me I will never learn. I will over-do and over-do til the end. If you don't have M.E., one thing that's really tough for some of us with either mild or moderate severity is that sometimes when we're doing an activity (shopping, taking on the phone, cooking etc.), we don't feel too badly, so it's hard not to keep going.  In other words, to avoid crashes I can't always listen to my body in the moment (e.g. this activity is making me feel awful) because crashes are very often delayed.

For instance, the friend I walked with two days ago probably thinks I'm fine because she doesn't see that it's 36 hours later where I'm curled into a ball on the sofa crying due to the flu symptoms, ache, weakness and utter fatigue.

On the other hand, I certainly know at this point around where that threshold is. So ideally, I should be more careful to avoid the over-do, given how horrible crashing is.

I crashed yesterday but still did too much. Today I can barely walk, my legs are so weak and shaky. My body aches, my joints included. I feel viral and icky. To be quite honest, I wish my life were done. I know this feeling won't last once I bounce back, but right now I don't want to even take another breath (which makes the ache worse). Being in this sick, weak, viral body for almost 17 years is just too much, I don't want to do it another minute.

So I'm here to vent. This is when some better emotional coping tools would help. I have a few, but am often left feeling alone, desperate, and depressed when I'm crashed or relapsed. One technique I use is to remind myself that the worst of this doesn't last - I always bounce back. And while not necessarily a coping tool, I also try to use something like reading or a movie to distract myself. These are also the days where I regret puppy. She needs exercise and I just can't.

Speaking of puppy, a few weeks ago she learned to swim. So here is a video of one of her first ever swims.



Sunday, May 12, 2019

M.E. Awareness Day

Yes, it's come around one more time - May 12th, M.E. awareness day. This June will mark my 17th year ill - not sure if I should celebrate (I'm still here) or cry and scream?!

To all my fellow sufferers out there, kudos to you for enduring this horrible often invisible and dismissed illness.  We are all clearly made of steal - by necessity.

Appropriately, I'm in a crash today. Hot and cold, dizzy, sore throat and lymph nodes and chest/breathing ache. Oh right - muscle weakness and fatigue. Also that indefinable icky achey fluey malaise.  I wish there was some type of alarm that went off when I was over-doing to remind me not to.  It seems that even if I was crashed only a day or two ago, as soon as I'm feeling a bit better/stronger, I  completely overdo.

The last couple weeks have been tough.  I came down with influenza!! of all things at the end of April, beginning of May.  At first I just thought it was a terrible cold and I was being whiney, but then the fever hit. I'm doing better now (just a little coughing).  Then on top of it all my dad has not been doing well, along with heart/breathing issues his memory problems and confusion have increased a lot. I'm over there multiple times a day dealing with something. I won't bore you with details.

Anyways, thanks for all who read my laments.  Everything is not bad all the time. I have some nice things in my life, and puppy has gotten a lot easier lately.  We have a new routine in the morning where I get to lay in bed much longer which has made a big difference.

Here is a good article in CNN! about Ron Davis and M.E. research: http://www.cnn.com/2019/05/12/health/stanford-geneticist-chronic-fatigue-syndrome-trnd/index.html?fbclid=IwAR2iG1tO1tACS_i5y0z0kDeTl6_OGTWb8PhfWRi-aste90--wII9lXArzE0