This morning I woke up from a dream in which I was actively part of a community. I felt useful, a part of something, and I was busy! I was sorry to wake up to my current reality. I felt really sad that my dream wasn't my reality. It felt great to feel useful and around people. I knew that there was potential for a tearful and depressing day ahead so I kept distracting myself by reading, thought stopping, and other things. I fought to stay out of that depressed place.
I've been on Valcyte for almost 11 weeks now. This week I have felt much less able to do much of anything. I've had migraines or maybe they are cluster headaches since Tuesday. They start in the afternoon. I was in pretty bad pain Tuesday evening and remembered that my doctor had prescribed lidocaine nasal spray and ketamine nasal spray back when I started Valcyte. They work. They don't take the pain away but I'm probably not using them correctly. I'm hesitant to use ketamine because it has been used recreationally although it's original purpose was an anesthetic for animals. I watched some youtube vidoes of people who had done a lot of ketamine and it wasn't something I wanted to experience. Anyway, I'm grateful they work.
I've just felt very unwell lately with some muscle aches and weakness and increased brain fog. Today I've spent mostly in bed. I'm trying to sort out whether or not I'm crashing because of overdoing it or whether I have some sort of bug or if the Amantadine (an antiviral) is causing some sort of die off or if its because of the Valcyte or what. I still have this illusion that if I can figure out what caused this than I have some control over it.
I think I've been overdoing it and caught a bug.
I've had a lot of trouble sleeping this week. Both Valcyte and Amantadine can cause insomnia (in addition to the CFS). I have to figure out how I can get more sleep.
It's still too soon to know whether or not Valcyte will work but I've been finding myself thinking that if I don't have consistent improvement by 4 months I'm going to make a decision whether or not to continue Valcyte. My doctor said people tend to have an increase in symptoms the first three to four months on Valcyte. I think at this point taking things 30 days at a time feels right.
I'm trying to find a hobby or something but find myself at a loss. I need to build a new life for myself. I still trust that will happen. It's strange adjusting to having my energy levels cut off-similar to an amputation just not visible. I think that getting use to living with an illness like this is similar to adjusting to becoming paralyzed or losing a limb. Only in this case it's losing the ability to create energy in the body.