Friday, April 10, 2009

Valcyte Update and Stuff

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.


Jozephine said...

Just to let you know I find your blog very useful and you are part of a community, albeit an online one.

Hope the headaches pass soon.

At Home on the Rock... said...

I find your blog very useful...and am thankful for it. Your posts, links etc. are so beneficial to me. Many times, I can hardly believe what I am reading...because it's *exactly* what I've said or the way I would describe how I'm feeling. Although many CFS articles/places describe CFS, the words used don't describe exactly the way I'm feeling..but yours do. Like in your profile where you say "It was as if my cells weren't getting enough oxygen" When I read that.... I was like "YES YES...that's exactly the way I describe the way I feel. (Most places just say "extreme fatigue" or similar...but it's soooo much more than that...just like my cells aren't getting enough oxygen)

At Home on the Rock... said...

I should have added in there...I've just recently been dx with CFS (Dec/Jan). I am "in training" to get myself out of this as much as possible. I know it will take time, a lifestyle/attitude change etc., but blogs and sites like yours are helping me in my quest to improve.


JoWynn Johns said...

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.

Yes, that's a good analogy. It takes a long time. You've already come a long way.

Renee said...

I find your blog very helpful, too. I always look forward to reading the info you find to share with us, and your honesty about what you are feeling and what is happening to you. It is how I learn, grow, and become encouraged. Your comparison of having CFS as like losing a limb is very clear in my mind.
Thank you so much for what your bring to us all even when you are physically so ill.

Anonymous said...

I also find your blog useful. I'm in a situation similar to yours: I'm young, and until recently had a budding professional career and led a packed life blessed with all that I could ask for, before I fell ill with CFS around 6 months ago. I've been going through a similar path of trying to research my way out of this, taking Bruce Campbell's self help course, dealing with disability benefit issues, dealing with all the losses, etc. I haven't tried a lot of medical intervention, except for antidepressants and sleep meds. I've been taking the Martin Pall antioxidant supplements that I buy through Prohealth, which I think are helping even if a little. I'm finding the concept of pacing the most uplifting at the end of the day; I really appreciated your post from Dr. Myhill's site the other day.

On the analogy to adjusting to being paralyzed or losing a limb, it's something that's also crossed my mind. But I've also thought, "at least I'm not paralyzed." We can at least hope for improvement. About a month ago, I pinched a nerve in my upper left arm and lost about half the power in it for about 2 weeks. I was scared it was some neurological problem and it was all I could focus on. Thankfully my strength returned to normal, and I'm grateful for it!

Thanks so much for your blog and hope the aches go away soon.

Kerry said...

How I (and imagine all with CFS) can relate. I too am always looking for a "focus" a "hobby", something to wake up to each day and feel excited about doing (even with CFS).

Have to tell you that I find your blog to be such a help on my own journey...Today I'm linking to it to share your Pacing post, which spoke to me on Friday when I was having a better day and NOT pacing myself.

It is tough when we have to spend more of our time in bed then not (as tough emotionally as physically). Send you warm vibes for greater energy, less pain and more sleep soon.