Monday, November 8, 2010

Broken and Whole

I am so broken right now. This flu will not go away and I spent the entire last night in violent coughing fits. It was so bad that my sons came in demanding to know if I was okay.

This last year I've been slipping off of some of the physical progress I've made. Last year I was hooping and having so much fun with it. I was taking an arthritic water fit class with disabled elderly people and they were kicking my ass but I progressed quite a bit. I was also happily hiking up the local mountain.

When I was taken off the last of my viral and immune suppression drugs last November (that kept the viruses and graft vs host at bay) I immediately caught the H1N1. I became extremely ill and my immune system was sent into overdrive making the graft vs host flare. So much for all the people who cried foul and said the H1N1 was a mass scare tactic. My son with asthma got dangerously sick and I spent the rest of the year trying to recover. It was well into the summer before I started regaining some energy.

I've gained 23 pounds, gaining back the 15 I had lost to still be 27 over my normal weight. My muscle mass has disappeared, I have huge bags under my eyes and I just feel lousy.

One thing that has improved immensely since last year is my memory! I am sooooooo glad. I was really afraid that I would never be the same egg headed university geek again. I loved my mind before all this happened. I had such huge capabilities in that area before and now that it's coming back I feel a lot more like me. Not physically but mentally.

I don't struggle to remember small things anymore. I still write everything on sticky notes but I can hold an address in my head and even the directions of how to get there. That is lightyears from where I was last year.

My mind is still quiet. My brain used to be in constant overdrive and I could never realax or have a mental break from anything. The first huge difference I noticed in myself during chemotherapy was the quiet void in my brain. I usually had 8 note/sketch books on the go to scribble down all my ideas. Writing them down released some of the pent up anxiety of constantly having the ideas and then perfecting them, detail by detail. It scared me when in the hospital I sat there, empty, no ideas rolling off me into my notes books. The pages were quiet.

I accept this sense of peace and serenity of the quiet mind now that I can focus my thoughts.

So for the body..... The problem with all of my attempts at regaining health is the simple inevitability that I will crash. Whatever I do, it seems to go well for a while and then my body starts shutting down in exhaustion, a graft vs host relapse, in pain or all of the above. So I rest and recover and then try try again until the next crash. The funny thing is, things usually feel fine with the activity and I think, "I can do this! Woohoo!" and then CRASH. I'm off my feet for days, weeks or months. It's so frustrating.

Whenever I discuss this with my doctors, they tell me to do less, tone it down, scale it back....

I've finally decided that after trying wholeheartedly for 4 years, I don't have a clue. So I signed up for a course called Cancer Transitions. I'm really hoping I can get a lot out of it and apply it to my recovery.

So far one thing has stood out to me in it. There is another person who has had a stem cell transplant and that person has the exact same problems as I do. We get going on something, are feeling fine and then the crash comes and we are laid out until our bodies allow us to get back up again. I was so grateful to hear someone else describe what it's like to hit a dead stop and not even be able to will your body to keep going.

So these are my rambling thoughts for the morning.

I am so grateful that I'm so resilient. I'm so glad that I know that the way forward often has relapses where it looks as if we are falling backwards. It's all a part of moving forward. Moving is not so bad, it's the stagnancy that gets to me.

So if this damn flu would just go away....


Jens said...

Yes. You are an intelligent and thoughtful person. I know that. For this reason, I read your blog.

Toboggan said...

What you describe is very much like the push/crash experienced by people with ME/CFS. Same with the brain fog and memory problems. There is little that ME/CFS doctors can do for their patients, either. So, we all just sit and lie fallow, trapped in a world that places high value on activity and achievement, on "doing" rather than on simply "being."

BaldyLocks said...

I have really seen that connection in what ME/CFS sufferers describe. It seems to be all about adjusting to your new capabilities which I don't seem to be winning at.