The "chronic" in chronic illness

warning: long, meandering, kind of complainy post - read at your own risk.

Have you ever had the experience of a friend or family member getting acutely ill?  Maybe it was cancer, or a car accident,  a heart attack or appendicitis?  Well very often friends and family "rally round" that person with support and empathy.

Sadly, it's different when you have a chronic illness and especially M.E.

For starters, when an illness is chronic, people loose patience with the ill person.  Who wants to be supportive, empathetic, and helpful indefinitely?  It's a lot to ask.  Life goes on...that's just the way it is.  People need to engage with their daily lives (work, family, activities, social) and can't be rallying support around the ill person indefinitely.

I remember the first year I was ill being amazed that while I believed my role in things was so important/essential, everything I had my hands in seemed to continue on fine without me.  And after a year or two, my presence in my social and work life was becoming something of the past, while I slipped into the insular life of daily illness and its subsequent restrictions.

I had a really bad week last week, feeling terribly ill and fluey every day.  The post art/printmaking crash I think.  It hurt to breathe, sore throat, dizzy, and beyond exhausted.  I cried when I tried to hang some plastic on the windows.  My arms were shaking.  For hours afterwards I watched as my muscles twitched and I felt significant pain.  This was probably after less than 2 min using my arms.

Today, the sun came out!!!! We've had a grey week.  I went outside to pull a few weeds and felt my chest/breathing ache come on immediately.  I went from squatting to standing and had a black-out and my arms almost instantly began their neurological madness along with the weakness.  I was instantly out of breath.  While I had been feeling only mildly ill laying in bed, the rush of "illness" that came on when I tried to do something was overwhelming.  I was like "wow, I am SO sick.  How can I be SO sick everyday for so many years?  How is this possible?".

I mean if a healthy person were to have that experience, it would blow their mind how sick and weak they were.  I don't know how else to say it? As weak as the worst day of a severe virus.  But those of us with M.E. live with it every day, sometimes for years and years.   Can you believe this is our 'normal'?

If they would get rid of the "chronic fatigue syndrome" label it would help with people's awareness and dare I say potential for empathy or understanding.  Part of the problem is everyone feels fatigue in life so people hear "chronic fatigue syndrome" and  immediately they think they understand.

But the fatigue of M.E isn't anything like "normal" fatigue.  The only comparable fatigue I felt as a "well" person was the fatigue of influenza....or Mono.  Not even my worst cold virus can touch the fatigue of M.E.  And that's saying something as I could carry an 80 lb canoe a km without a break and I trained for and ran a 1/2 marathon the year I got ill.  Do those experiences come close to the fatigue of M.E.?  They don't even touch it.  It's like if someone told you they had stomach cancer and you said "oh yeah, I know what that's like, I had the stomach flu once"....but no one would ever say that, would they?

I never use chronic fatigue syndrome anymore.  I refuse to.  I also usually refuse to tell people what I have at all.  I just say "an immune disease" which is perfectly true -- or else I avoid it all together.  Of course it's not like I'm out meeting all kinds of people so it doesn't come up too often.

My friend Sh and I were talking today.  (She is a phone buddy/support who also has M.E.)  We got to know each other early on in the illness for both of us, mostly through email and phone.  Early on in our friendship, we were both convinced we would get 100% better. We were both fairly young (late 20's for her, early 30's for me) when we got ill.  We were both physically very active, living full happy lives when we got hit.

Along with talking to someone who fully understands what it means to endure this  illness daily, we always share stories of the ridiculous things people say to us and the assumptions they make about us because we don't "look" ill.

We were also discussing how things have changed over time.  Now that we've been sick 10 years, we are no longer considered 'young people'.  We now have a resume of seeking help from the medical field (of all things), of "laying about" for years on end.  We are now middle aged women with a history of chronic illness, a smallish resume in the real world, and a history of 'complaining' and failing in society.  It definitely shifts how people on the outside treat us.

Not only that, most the people we meet never experienced that healthy well woman we once were, so they only know us as low energy, introverted, unsocial and cautious people.  They have nothing to compare us with to see the vast contrast between who we were, and who we are now.

My point in all this babbling being mainly that it sucks to have this illness.  Mostly because, as my old specialist said, "you guys were born 50 years too early".  Medicine doesn't yet have the knowledge (or on the whole the desire) to investigate or treat us.  And while I've read several times that there are over 4000 research studies that have found biologic abnormalities in M.E., I have yet to meet a Dr. outside of my specialist who has read one of them.  Because of this, we are generaly dismissed by both the medical establishment, the public in general, and unfortunately often by our own friends and family.

My other point, is that despite being sick 10 years, sometimes I'm still surprised and taken aback at how sick I am.

That being said, I'm crossing my fingers for a better week this week.