I've been feeling a bit guilty for not blogging much lately as well for the emails I have yet to send. I haven't been able to muster up the mental energy to write. Also, I've felt too depressed from the Valcyte and I just don't want to blog about depression anymore.
Today though, I've been given a reprieve from the Valcyte depression. It's nice.
I also see a little glimmer of acceptance on the horizon. So I have what my doctor calls "a profound case of CFS." It doesn't mean I can't have a life that I enjoy.
I've been doing a lot of thinking since my talk with my CFIDS doctor yesterday. I cried after the conversation and felt the heaviness of grief, sadness, and self pity sitting on my shoulders. I'm tired of that trio. I really am. While I think it's important to be with the feelings, at some point I have to say enough already. I'm also fed up with all the ways I beat myself up about all the ways I fail people because of this illness. I'm tired of wasting energy with these thoughts.
Being hit with this and having my external life taken away takes awhile to get used to. I've found there are no books on the emotional impact of having this illness but that's another topic.
I had a phone consult with my doctor. I'm 66 days into taking Valcyte. Last week I had so much fatigue that I had to cancel lunch with my sister. She was not only coming over but bringing lunch leaving me with nothing to do but sit and talk but I was too fatigued for that. I've also been having increased muscle pain. Not just achiness but pain along with cramp like sensations in the backs of my calves. The muscle pain was fairly intense. My doctor didn't know if it was from the Valcyte side effects, the cfids itself, or that the Valcyte is working on something. There are simply no answers. I won't know anything for six months.
I asked again what he thought the cause was and this time he said mitochondrial dysfunction. Prior to this his answers have varied from brain inflammation due to infections (bacterial, viral), toxins (mold). But this was the first time we've talked about the mitochondria. I'm aware of Dr. Myhill's recently published article. My doctor said some people have a chronic viral infection that damages the mitochondria-treat that and things improve. Others, have a hit and run infection that leave the mitochondria semi permanently damaged. He said the only way to fix that is "through stem cell therapy which costs $15,000 and you have to go to Mexico." I don't believe that's the only answer but who knows.
I think and fear that I fall into the latter category of a hit and run infection. My RNASE L was normal but the quantification was somewhat high. My NK test was normal (although it was run through Quest Labs which just reports a number and doesn't provide a panel. Quest Labs is good for testing for a few things just not NK function).
This is why I cried yesterday. If it's a hit and run infection, I have permanent damage to the mitochondria which is the most important part of the cell in terms of energy production. Also, a majority of mitochondria reside in the heart muscle which oftentimes leads to heart failure secondary to mitochondria dysfunction. Dr. Cheney believes that cfs is a way the body prevents the heart from failing.
So I turned my research efforts toward understanding mitochondria dysfunction. I spent a little time studying it today. The many supplements I took last year in an attempt to treat this failed but I was also living in a moldy toxic environment, hadn't treated lyme and babesia, and hadn't treated viruses. I started back on d-ribose (5 grams 3x daily) hoping this will ease some of the muscle pain and achiness.
What I was confronted with after talking to the doctor yesterday was the very real possibility that I might not get much better than this and maybe the only thing I could do was prevent myself from becoming bedbound. My true belief is I will get more functioning back but maybe not as much as I'd hoped.
I'm trying to come up with some ideas for how to live a life I'll enjoy regardless. I used to do stained glass many years ago. I'm finding myself really interested in starting that back up again. To do that I would need to take a class and get some new supplies. To take a class I need a little bit more energy.
I also need to figure out a way to get licensed or let it go completely. I may need to let it go because the process of getting licensed is quite stressful and takes a lot of energy. It's just that I was so close.
In the meantime I have to figure out how to get rid of a wasp problem that is preventing me from being able to sit out on the back porch and read. I swear these wasps are gunning for me. Everytime I appear they show up like bullies sending me scrambling to get back inside (which is hard to do when one doesn't have energy). They are building two nests right near the door. Today I thought I would fool them by taking out the garbage by going out the front door instead of the back. It didn't work though.
I think it's time that I claimed my sense of self back from this illness.