Jan. 2nd, 2019 03:54 pm
Utterly Spent
![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
murielleWhen I was diagnosed with Myalgic Encephalomyelitis it was after almost a decade of being misdiagnosed and misprescribed and generally misunderstood. By the time I finally saw a doctor whose practice focused on people with Fibromyalgia, Chronic Fatigue Syndrome and Gulf War Syndrome, I had given up on ever getting help, of any kind.
My GP sent me to an internist, who diagnosed me as having some kind of chronic physical ailment, but couldn't say what; a psychiatrist, who assured me and my doctor that my problem wasn't neurological or psychiatric. I'd seen an herbalist who said it was most definitely physical and he could help, and for a long time I did go to him until I ran out of funds. At that point, I was back to a doctor who just kept telling me I was depressed in spite of specialists' reports to the contrary.
I came very close to being diagnosed a couple of years into the illness when I saw a daily talk-show on the subject. The doctor was from something called the Nightingale Foundation, so named because it was believed that Florence Nightingale was perhaps one of the first victims of the condition. (You'll notice that I call it an illness, a condition, sometimes a disease. Legally it's labeled a condition, I believe, but there is a movement within the specializing medical community to have it classified as a disease.) The guest doctor was the founder of the organization and as he talked I felt as if he was describing my life, since childhood.
Many people talk about sudden or slow onset. I honestly don't know which I experienced. It seemed sudden, but there is enough evidence to suggest I might have had this since I was a child.
For me, CFS/CFIDS/ME, etc., manifests in bouts extreme fatigue. The inability to get out of bed for days, even weeks. Barely having the energy to lift a cup to my lips, or hold a pen. My normal experience is that when I go to church once a week--something I love to do, and without which I would have no "outside" life at all--I am useless until Wednesday or Thursday. So my "week" often doesn't start until Thursday. This week, I have no recollection of Sunday at all, (I go to church on Saturdays.) Monday, I slept all day and night with only a few short breaks when I got up to use the bathroom or eat something--I try to take my meds and supplements on schedule--and I slept most of Tuesday. Today, Wednesday, I have been mostly in bed.
So now the question is, do I take a bye this week, or do I sacrifice?
It is possible that taking a bye might give me enough of a rest to recuperate for next week. Or, there's a possibility that trying to hang in and keep playing might push me over the edge to a really bad relapse.
This is where I am. This is my struggle. What do I do?
At this point, I should decide within the next few minutes because if I'm leaving this season, I don't want to waste a bye on myself. On the other hand...well, I am not a quitter and I hate throwing in the towel.
I'll hang in and see how it goes.
My GP sent me to an internist, who diagnosed me as having some kind of chronic physical ailment, but couldn't say what; a psychiatrist, who assured me and my doctor that my problem wasn't neurological or psychiatric. I'd seen an herbalist who said it was most definitely physical and he could help, and for a long time I did go to him until I ran out of funds. At that point, I was back to a doctor who just kept telling me I was depressed in spite of specialists' reports to the contrary.
I came very close to being diagnosed a couple of years into the illness when I saw a daily talk-show on the subject. The doctor was from something called the Nightingale Foundation, so named because it was believed that Florence Nightingale was perhaps one of the first victims of the condition. (You'll notice that I call it an illness, a condition, sometimes a disease. Legally it's labeled a condition, I believe, but there is a movement within the specializing medical community to have it classified as a disease.) The guest doctor was the founder of the organization and as he talked I felt as if he was describing my life, since childhood.
Many people talk about sudden or slow onset. I honestly don't know which I experienced. It seemed sudden, but there is enough evidence to suggest I might have had this since I was a child.
For me, CFS/CFIDS/ME, etc., manifests in bouts extreme fatigue. The inability to get out of bed for days, even weeks. Barely having the energy to lift a cup to my lips, or hold a pen. My normal experience is that when I go to church once a week--something I love to do, and without which I would have no "outside" life at all--I am useless until Wednesday or Thursday. So my "week" often doesn't start until Thursday. This week, I have no recollection of Sunday at all, (I go to church on Saturdays.) Monday, I slept all day and night with only a few short breaks when I got up to use the bathroom or eat something--I try to take my meds and supplements on schedule--and I slept most of Tuesday. Today, Wednesday, I have been mostly in bed.
So now the question is, do I take a bye this week, or do I sacrifice?
It is possible that taking a bye might give me enough of a rest to recuperate for next week. Or, there's a possibility that trying to hang in and keep playing might push me over the edge to a really bad relapse.
This is where I am. This is my struggle. What do I do?
At this point, I should decide within the next few minutes because if I'm leaving this season, I don't want to waste a bye on myself. On the other hand...well, I am not a quitter and I hate throwing in the towel.
I'll hang in and see how it goes.
no subject