The Invisible Brick Wall

Imagine for a moment that you lived your life always trying to avoid colliding with an invisible brick wall.  (If you have M.E., I probably don't have to write another word - you 'get' the analogy).

For me, life with M.E. is like life with an invisible brick wall.
Since the wall is invisible, I obviously don't know where it is at any given time.  Experience has given me a good sense of where it might be lurking, but I can never be sure because it moves around.

So any time I do anything at all requiring energy, I risk a painful collision.   I hit this wall and hurt myself, and it can hurt pretty badly - the damage can take days or even weeks to recover from.  I mean it's a brick wall, not an invisible goose-down wall.

I hit the wall hard this week.

Monday, I had my cardiologist appointment where I did a test and then he spent a long time in consult with me.

Then Wednesday, bored and sick, I decided to do an errand to the gluten free bakery…which isn't far. The thing is, I knew where abouts the wall was that day, and I needn't have even left the house to ram my head up against it.  What I'm saying, is I knew there was a risk.  But I went anyways, and since then have been in pretty bad shape.

Another time, I may have done that errand without consequences, but not this time.  I'm on day 5 of the crash, and while I thought I was a bit better yesterday, today I'm much worse again.  I have weakness, shakes, weird facial/eye twitching, sore throat, painful lymph (arms), breathing ache/heaviness and dizziness….even a mild headache.

Personally, December is always a hard month for me, even M.E. aside.  I am affected by the lack of light (I use a full spectrum lamp to help with this) and I am often stressed about Christmas. How do you shop when you: a) have very little money, and b) store outings usually cause crashes (actually, I'm doing pretty well with the online shopping this year).  I also usually travel to see family and then endure a 2-4 week crash in January, not to mention time with people who like to either ignore the fact I'm sick, and/or treat me like it's an emotional/mental illness. Fun times!  This year also includes my parent's 50th wedding anniversary.  Right now I'm too sick to travel, but hopefully in a week or two I will have picked up.

All I can say, is that if I make it through December with only minor damage/consequences, I will be happy.

On a complete aside, I've been doing some reading on POTS, and it's quite an interesting condition.  For one, there is a lot of disparity in the research looking at the M.E./CFS - POTS connection.  I've read studies that say as few as 20% of M.E. patients have it, to as many as 90% have POTS or at least some form of OI (orthostatic intolerance).

The cardiologist I saw suspected in my case, the POTS/OI was triggered by the severe Mono infection I got, the one that also triggered the M.E. since the OI symptoms were there from the get go.  Reading through the symptoms of POTS, it could almost be my soul diagnosis, except it doesn't explain any of my immune issues (fevers, chronic pharyngitis, painful lymph nodes and a propensity to get certain infections easily).  Also, pure POTS patients don't get post exertional malaise (PEM) -  so far according to research, PEM is unique to M.E.

I have been having fun using my blood pressure heart rate monitor when I'm feeling especially poorly.  It doesn't seem to correlate exactly to how poor I'm feeling, however, I can sense when my heart rate is pretty high, just because my hands turn purple from blood pooling, and I get a sense of anxiousness/needing to lay down.  I really don't need to do more than stand up to for my heart rate to jump 50-70 beats higher than when my legs are elevated, and into the tachycardia zone.  Especially as I start the drug, it will be good to be tuned into my HR so I know what 'improved' feels like if the drug actually helps.