Sorry Shakespeare. I just couldn't resist.
Bad week here in this chronic chick's house. The tumble I took the other week has reactivated the fibro pain in my back. I've had a tough two weeks moving around and sleeping due to pain in my spine and the surrounding tissues. I always get cranky and out of sorts when I can't sleep enough.
To add to the not enough sleep problem the neighbor has been tying their dog up to the tree outside my bedroom window and letting it bark. This happens at all times of the day and night, 8am, noon, 1:30am. Doesn't matter. They are too lazy to walk it so they just put it outside where it barks the entire time. I got woken up twice this morning. I want to shoot it and I like animals.
I also sat on my damaged ankle wrong the other night and crunched several bones. Since then it has swollen up again and just aches all the time. It often hurts to put weight on it but not constantly. I can hardly wait for my chiropractor to readjust it and get it working right again. That is tomorrow.
I also got a call from the CDC to do a telephone survey. Cool, I thought. I can tell them all about CFS etc. But no! It was a survey on sexual harassment, sexual abuse and domestic violence over the entire course of my 50 year life. Man did that dredge up some unpleasant memories. I swear as a woman in the US you can't live out your entire life without getting at least harassed if not actually felt up or raped at some point in your life. It sucks but there it is. Yes, I have been felt up on more than one occasion, the first time when I was just 7. When I was older, I was pawed at by high school boys and coerced by boyfriends that had only their penis on the agenda. My sister and I chased off a peeping tom when I was in my 20s and we think it was probably my own dad. I've had coworkers both feel me up and threaten me in a sexual way when I worked as an automechanic. I even had a customer wave money in my face and proposition me for sex. The manager threw him out. And even in a research setting I was told that I had no right to free thinking since I was a female. I was told that my husband should think for me and had "Why a Woman Can't be More Like a Man" played over and over again in the lab. "Just for fun" of course. And, even now, I've been in a few uncomfortable situations with hubs since getting ill and this is from someone that has been an awesome spouse for 20 years and a great boyfriend 4 years prior to that. Not the most pleasant of phone conversations.
Also, my Mum has been quite sick. This on the eve of her 80th birthday. She never gets sick so we were quite worried about her since she had a odd set of symptoms. It took the doc a couple of tries to figure this one out since it is a fairly rare disorder. She is on the mend though. Once the doc figured it out they got her on the right meds and she is much improved.
Well her treatment actually triggered some anger in myself over my own CFS treatment. You see the illness she has requires low dose prednisone to tamp down the inflammation in her blood vessels. Last year, I had a cortisone shot in my shoulder for an unrelated condition. The cortisone stays in my system for about 30 days. It is supposed to last longer but in me it doesn't. Anyway, while the stuff was hanging out in my body making my shoulder work properly, all and I mean ALL of my CFS symptoms calmed down. I was driving, reading, cooking, walking, shopping, etc. When the month was up I returned to my bedridden self. When I told my ortho guy about the reaction he told me that my doc could prescribe low dose prednisone for the CFS. Of course, when I talked to my doc he said no. It was too dangerous. I've been on prednisone before and had no adverse reactions to it but of course that was short term. So on the way home yesterday from my ortho followup for my knee I broke down and had my first cry. Why can't I get prednisone? Why does my illness have no treatment? My life sucks!! I want a drug that will help with my symptoms and at this point I'm not too fussy about danger. I'm just supposed to hang around the house hoping this will resolve when I know a drug is out there and available but my doc is too chicken to give it a go?? WTF!?!
To give my doc some credit it is probably a liability thing. It would be an off label use of the drug. He could potentially get his license yanked for turning me into a guinea pig but at this point I DO NOT CARE! I WANT TO TRY THIS! I AM SICK TO THE TEETH OF SITTING AROUND THE HOUSE! I am SO frustrated with him. My last visit I went in with a list of odd treatments that other CFS patients have tried with some success. They are low risk so I figured he might go for them. Not a chance. He said no to all of them. I'm to messed up in the head when I'm in the actual office I can't argue my case at all never mind well. And of course I had forgotten to print out papers regarding the treatments to help bolster my case.
Which brings me back to spouse... Yes, he loves me. Yes, we are getting along way better. Yes, our marriage is recovering. However, I can NOT talk about my illness in any way or he gets wonky. Sometimes it is a little wonky but often he gets angry. So much so, that reasonable conversation is no longer possible. So the idea of me explaining things to him so that he can go to the appointment and actually advocate for me is beyond the realm of possibility at this point in time.
Which brings me to my final rant of the evening, my new waterbed. We got it three weeks ago. While I sleep really well on it and it is great for my sore joints, it smells. It is like going to sleep wrapped up in a brand new vinyl shower curtain every night. The smell has abated somewhat. The room no longer stinks. However, I'm a stomach sleeper so my face is inches away from the mattress every night. When we first got it the smell made me nauseous. It isn't that bad anymore but I have to wonder what horrible chemicals I'm inhaling every night. I really don't know if we are going to keep it. We haven't had that discussion yet.
Okay, so on to the drugs. I saw my shrink today and unloaded most of the above on him. I left out the CDC phone call since that is another can of worms for another day. Of course I was crying the whole time. It has been that kind of "me against the world" week. Also I just cry at the drop of a hat these days. Must be a hormonal thing from the illness. I used to be so stoic.
Anyway, after he explained that he in no way considers me clinically depressed, he suggested maybe I take something to even out my moods. So I'm thinking drugs or no drugs? Prosac is the only antidepressant I've had any luck with in the past (I've gone through three major bouts of depression over the last 50 years) but that was before CFS. Dr. Komaroff told me that anything that affects the central nervous system is highly reactive with CFS. I've already had severe reactions to Gabapentin and Effexor so that whole class of drugs is off limits. I took Prosac over 20 years ago so I have no idea how I will react to it now. Also I don't feel depressed. I have bad days and occasional bad weeks but I'm not classically depressed just really tired of being sick. So here is comparison of my symptoms:
Depressed me:
"I'm worthless"
"I'm shit."
"Why would anyone like me/want to be friends with me/etc?"
"I'm a terrible parent."
"I'm a terrible employee."
I mope around. I don't want to do anything. I'm not interested in doing anything. All I want to do is sleep and hide. I'm not happy. I'm not angry. I'm emotionally flat.
CFS me:
"I'm angry at my primary doc."
"I'm angry at the CDC/NIH/CFS research funding/etc."
"I'm angry at my CFS doc."
"I'm angry at hubs."
"I'm angry at my illness."
"I'm angry at my broken body."
I cry at the drop of a hat. I'm so angry I want to punch walls. I want to yell at people. I feel like everything is a fight. I feel like I am on my own fighting with no help. But on good days I do stuff. I cook. I enjoy the outside and the sunshine. I enjoy the flowers in my backyard. I like going out for rides with my son. I love going to farmers markets. I'm often happy. I love it when my son and his girlfriend come over. I love it when my friends come over to visit. I love it when my Mum comes to visit. I love spending the quiet hours of the morning curled up with my cat on the couch watching Hulu or Netflix.
So, do I want to be drugged so that I'm not as angry? So that I don't cry as often? So that I'm not suffering? So that I'm not in emotional pain? So that I "level out" my emotions? Is going through the darkness of this illness something to be fixed with meds?
There is this idea that we need to walk through the darkness and not turn away from it. That the darkness will make us stronger. I've been through lots of darkness in my life and I know I'm very very strong. I'm a fighter. I don't give up even when I'm crying.
There is also the Buddhist idea that this is all illusion and impermanent and will change soon anyway so why get attached to it in the first place. Maybe that is what I need to remember. I get angry because I am wishing for things that I can not have at this point in my life. I am wanting. In Buddhism, it is wanting that is the root cause of suffering.
I need to figure out how to let go of the wanting. Then I won't need the pills. And, I'll be stronger for it.
