Loss/Horses
I rarely interact with anyone new & after being sick for 11 years there are few people left in my life. 1 sister (who I don't talk to) is a nurse who "doesn't believe in CFS" and the other sister makes a substantial living giving motivational talks & writing books refuses to talk to me (which I now find very funny!) because she can't "handle" my illness & I should just listen to her anyway, do affirmations, ask myself why I "attracted this illness to myself" blah, blah, blah. If I sound cynical, I am.
A heads up on BrightSided by Barbara Eherenrich, who I really like---she mentions CFS in a negative way in her book. Which I found surprising. I don't have the book but an Internet friend in CO sent me the page...also, Ken Wilber has CFS but calls it something else...he was one of the Incline Village folks.
I rode horses as a kid & young adult--mainly working cattle, then for pleasure. I always figured I'd get back into it later in life...never imagining I'd be sick. A year ago I bought a Quarter Horse thinking, I can do this, I can somehow do this...and I can't. My ex-husband is now learning to ride her and I sometimes go watch him ride. Once in a great while I get on and ride for 3-4minutes at a walk. I remember Susie, my horse of many years--from age 11 to 24 when she died. I only rode bareback (unless working cattle) and my favorite gait was a flat-out gallop. But just getting on and riding is wonderful. Even for 3-4 minutes. Even in a saddle.
I have both CFS & Fibro but if I have to, will only mention Fibro as that seems to be more "acceptable" than CFS. I think the last time I said I had CFS, the person I told said, "Oh, tell me about it! After working all day, then going to the gym, then grocery shopping, fixing dinner, doing dishes, and I'm beat!" I felt like screaming, "I can't do any of those things!"
My dad is 84 & in great shape. He does not want to hear anything about me being sick--if he asks how I am and I tell him the truth--bedridden about 22 hours a day--he says, "that's your problem, damnit! You need to get out of that bed and do something. Get a job!" It's hopeless.
My skin has gotten progressively thicker over the years. I finally stopped trying to convince my friends and family--stopped listing my symptoms, stopped telling them how much pain I was in, about the bottle of oral thrush med in my fridge, about everyday feeling as if I have the flu, stopped apologizing all the time...I don't really care anymore--you don"t think I'm sick? OK. I have enough toxins in my body, I don't need any more outside of my body--I am tired of saying I'm sorry for something I have no need to apologize for. But it took many, many years to get to this point. And a lot of heartache and disappointment.
The only people left in my life are my 35 year old autistic daughter, my ex and my friend in CO, and some friends in Europe I email or talk on the phone with when I feel well enough. I used to be very social, a Type A personality, constantly traveled...when I got sick and stayed sick, friends & family who knew me as this "quirky poet" and "world traveler" drifted off. I got the message that I had disappointed them...
All I will tell anyone now is that I have Fibro. It's just easier and I don't hear those ridiculous "I'm tired too!" comments. Because I am just plain tired of it.