When I started this blog, I started with the premise that I would share with brutal honesty what ME (CFS) is really like.
Today, I thought it important enough to break my self-imposed 5-day withdrawal and shielding to reveal once again the devastation of severe ME.
First, from this day forward, I will no longer refer to this illness as Chronic Fatigue Syndrome (CFS). That is an hypocritical joke. This is not fatigue, chronic or otherwise.
Second, I am angry. How long do I (and 17 million like me) have to suffer like this. How long are we to be relagated to the four walls of our apartment, hidden behind closed doors, masked from the purview of the public and society at large? How long will I be made to wait for a causal link, a cure, or an answer?
Third, I have now been in a severe relapse for several months. I am basically back where I began in 1990/1991. After twenty years of learning how to read the signals of my body and determine my energy envelope (available energy) I now find myself unable to determine what my energy boundaries are.
One trip too many to the kitchen (50 steps from my bed) and that might cause me to crash for the rest of the day. (Crash meaning loss of available energy).
The real challenge for me is that I am part of a small sub-set of ME sufferers who also have Fibromyalgia (FMS). That said, laying 20-22 hours a day causes soreness, pain, and even flare-ups with the FMS. So I have to move positions, walk a little or just move in order to prevent said FMS flare-up.
Of course, doing that aggravates the ME which then raises the risk of crashing from the ME yet again.
It is not uncommon at this point in this relapse for me to repeatedly crash in any given day.
For those who do not have this illness, here is what today (3/17/2011) looked like.
9:30 Got up and ate a boiled egg.
9:32 back in bed – ran out of energy.
10:00 made a cup of tea and quickly mopped floor
10:02 back in bed.
10:30 Colored roots
10:45 back in bed
11:15 Colored ends of hair
12:00 back in bed
12:05 Showered and washed hair
12:10 back in bed for the rest of the day
3:00 Crashed. Unable to sit up or recline and must lay prone. Internal shakes lasted 3 hours.
7:00 sitting up in a reclining position
7:30 Made some tea and ate a few organic ginger snaps
7:45 Checked Email (Blackberry)
8:00 Sent messages to friends (Blackberry)
10:19 Bed for the night – completely wiped out.
This is not tiredness. This is not fatigue. This is a body that is barely functioning. This is a body that is desperately doing its best to hang on.
I spend 24 hours alone, everyday but Friday, where, I have my personal assistant and friend come for 2-3 hours. I have no one to talk to except those by email, text, social networks.
When my eyes act up, I am completely alone, in a darkened room, in total, unadulterated … SILENCE.
If I talk too much when I have visits, I am now crashing. If I use my eyes too much, I am lying in bed with eyes that feel like they are full of the flu, head pain, neck pain, and lymph node pain.
The lymph node pain now feels like a collar around my neck.
The severity of the symptoms is now affecting my ability to eat. One hard boiled egg and a handful of ginger snaps was what my food intake consisted of today.
I am not worried of losing wait. My body is nicely padded with 60 extra pounds. My point here is the exhaustion is making it not only hard to eat, but affecting my hunger levels and what I ate today was all I was hungry for.
Today is merely an example. Every day is different. Somedays I am hopeful I can start moving forward, only to take a small, tennative step and tumble backwards 10 steps.
This is not mere fatigue. This is not a syndrome. This is a serious illness.
I am not depressed. I am not sad. I am ANGRY.
I have decided to become visible because there are too many like me. And I am not even the most severe. I have the knowledge and the memories of times where I functioned at 40, 60, or 80%. Many like my friend Laurel, do not share that experience with me.
You think my day is bad, ask the most severe among us what any given day is for them. I can still stand, get up, walk, shower, bathe. Many of them, cannot.
Today, I’m hovering at 10% on most days.
No longer am I willing to allow the world, our government, or anyone else, to continue on with their lives, acting as if nothing is happening behind the doors of those ill with ME. No longer will I sit here in silence and suffer.
I have become convinced that the way that change will come, is when every day, healthy people understand the devastation that is occurring behind closed doors…in silence. When THEY get upset and start a grass-roots revolt, then I will see change. You will see change. We will see change.
I will continue using my voice to share the devastation this illness brings in a moment when it comes uninvited and ravages my body. I will raise my voice for me…and…I will raise my voice for you; the 17 million other ME sufferers.
No longer will I suffer in silence. No longer will I go quietly in the night. No longer will I accept that this is the best I can ask for. No longer will I choose to allow my dreams and hopes to be ripped from me. No longer will I be shamed into hiding. No longer will I accept mediocre attempts at finding a causal link or cure.
No longer will I remain hidden behind my 4Walls and AView.
Today, I humbly and purposefully open my door and invite you to see severe ME up-close-and-personal.
P.S. While coloring my hair took extra energy, it boosted my moral and spirit…something I desperately needed. It also made me feel a decade younger than my body, again, a needed boost!