I have been ill my entire life. No kidding. Seizures as a small child, pleurisy in grade school, IBS in junior high, severe allergies, hypoglycemia, chronic daily headaches, etc. When I was about eighteen years old I was diagnosed with lupus and then fibromyalgia followed about fifteen years later accompanied by severe insomnia, muscle pain, night sweats and fatigue. I have suffered from depression and bipolar disorder for most of my life and I have widespread osteoarthritis. Yet through it all, I would have called myself a highly functioning sick person. I kept on trucking. I had bad days, I was in pain, I took medication, sometimes lots of medication, but mostly I kept moving, smiling and life went on.
Then… February of this year (2011) I caught a virus. We were out of town visiting family and I began getting sick on the flight home. By the time we landed I knew I was really coming down with the same bug that family we had been visiting had. It was a bummer, but it happens. A few days of yuck and I would be better. Or not…
It is now almost November and I am not only not better, but I am much worse in many ways. The virus went through all the phases of congestion, earaches, sinus pain, sore throat and fever. Only these things stuck around. Through three VERY long rounds of antibiotics, each one stronger than the one before, the symptoms just persisted. My glands became swollen. I had horrible night sweats. Later came the migraine headaches and constant vertigo and the fatigue so crushing that walking to the bathroom became a chore.
I have been to every doctor imaginable…primary care, rheumatologist, endocrinologist, fibromyalgia specialist, naturopath and the consensus is finally the dreaded chronic fatigue syndrome, CFS, ME, myalgic encephalomyelitis. It goes by many names, which according to the CDC is defined as “Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness.”
It is the worst illness I have had to date without a doubt. Many days I lay in bed and stare at the ceiling unable to even stand the movement or sound of the television. Sometimes I can’t even read a book. Brain fog is so thick that I can’t form sentences or do favorite things like cook a meal. I can sleep 12 hours a night and not feel rested. I haven’t driven in weeks because my vertigo is so bad that it isn’t safe and it tires me too much anyway. I rarely leave the house except for doctors appointments because the lights, sounds and movement of the “outside” world are assaulting to my senses and too exhausting to me.
All of that said in explanation, I have to admit that I have been laying down and taking this. I have been afraid, lonely, feeling old, feeble and debilitated. I have projected into the future and pictured myself withering away in bed while the world spins in wonder around me and without me.
NOT ANYMORE! One of the features of this illness has been a plethora of migraines. Last night I conducted a webinar for my group, The Portland Fibromyalgia-ME/CFS Group, from the comfort of my bed – in my pajamas. I paid for this two-hour webinar with a migraine in the middle of the night. Well, it was ONE MIGRAINE TOO MANY and it just PISSED ME OFF! I couldn’t even run a little webinar from bed? Plus, I had help. My co-leader did a chunk of the work so that I didn’t have to. And STILL I got a migraine.
I woke this morning with my head still hurting but my fighting spirit finally firmly back in place. I don’t know how, but I WILL kick CFS butt!! This illness will NOT win. I will not lay quietly in bed while the world spins in wonder around me and without me. I absolutely plan to be a part of that wonder.
So, CFS, ME, chronic fatigue syndrome…whatever you want to call yourself…I may not be able to get rid of you, but I will learn how to work with you and have a full and happy life. So bring it…GAME ON!
{ 8 comments… read them below or add one }
KNUCKLE BUMP.
Bring it!
Amy, you made me smile. Thank you!
You’re awesome, Tamara! Keep that great attitude going!!
Thanks Aviva!
Well said and well written Tamara, you still have that fighting spirit no matter what, you have gone through so much and u are still able to reach out to others…thanks for that!! x
Together we can keep each other going, huh Emer?
I was originally diagnosed with Fibromyalgia in 1990 (confirmed by a pain board in 2004) and diagnosed with Chronic Fatigue/ME about 1996/1997. I feel that it is far easier to control my fibro symptoms with things like a whole food diet, mild exercise like yoga and Tai Chi, and a few supplements. I am actually disabled based on chronic severe migraines, fibro was not a widely accepted disability in the early 90′s. I feel like my symptoms started in 1989, from a flu like virus, that I never really recovered from. I have had multiple fibro indicators by age 11. The chronic fatigue and chronic migraines are the hardest to deal with, and very difficult to control on my own. I often tell my FB Fibro/CFS/ME friends, that I would rather live in increments, …than just exist. My days are a series of being up and laying down. I am a firm believer that research is our greatest hope. Not just in defining our syndromes as a disease, but in finding something that will heal us. The newest research is defining CFS/ME as autoimmune, and even a cancer treatment that has helped CFS/ME patients. To fibro research in showing it is genetic and biologic.
Jacy, there does seem to be some interesting (and hopefully promising) research and treatments on the horizon. Certainly, since XMRV, CFS has been getting a lot more attention. So, even though it seems that XMRV isn’t going to end up being causative, it brought a lot of interest to the illness.