I just want to sleep

Someone asked me how long recovery takes. My answer? Longer than this. Today is day 58 post transplant. Maybe I’m supposed to be doing better than I am but I’m home at least for now. My team goes so fast from encouraging me to rest and let my body heal to expecting me to get up and start joining the real world. My last doctor appointment I was admonished to gain three pounds and try a couple outings. I’ve left the house twice other than doctor appointments but I feel like I go begrudgingly like I have to do it. It’s still cold outside and I like my bed and I’m not ready. Did you hear me? I’M NOT READY. My family members wake me up at 9:00 am to choke down approximately 20 pills with a carton of Boost Breeze nutritional drink and I’m back asleep by 9:30. I sleep until 10:30 when I wake up again determined to get up but I fall back asleep until 11:30. Even at 11:30 when I manage to stay awake I don’t actually get out of bed until 12:00 or 1:00. What do I do during that time? I lay there in the quiet trying not to think about how my hands won’t stop shaking and how sick I feel. Sometimes I listen to music but turning on the TV is the best way to guess that I am getting up for the day.

Thursday I had physical therapy. I haven’t been back since the transplant. I made appointments but it didn’t work out for me to go because I had to go to the stupid hospital. My dad has been here taking care of me and I feel awful because I ignore him all morning while I sleep and he is up and down the basement stairs doing laundry. I’m sure he is bored with me but he never complains. He just wakes me for pills and lets me be. My PT had to do new assessments since I missed so much time while I was in the hospital. He says I have some muscle strength but no endurance.

My dad was nice enough to point out that he could tell I was on steroids again because my face is puffy. The doctor scolded him and warned that might’ve the worst thing he could say to me. He said that I look thin but I still weigh a lot for a girl. I do have a changed appearance since transplant. I may have a perma-tan from the radiation. The skin on my body and face is a shade or two darker than it was pre-transplant. I have new freckles and moles and existing ones are darker. I’m going to have to see a dermatologist regularly to check for basal cell carcinoma. I do have new hair coming in. It is growing thick and dark on my head with a smattering of either blonde or gray, I can’t decide. It’s too soon to tell if my new hair is curly or straight. It’s called chemo curls because some people get curly hair when it grows. I can feel my eyelashes growing in. My eyes are irritated from the regrowth. The eyebrows are growing in sparse and wild. I’m going to have to go for a brow wax as soon as they get a little thicker.

My new goals are to balance sleep/awake time and try to do a little bit more around the house. The doctor is wanting proof that I’m getting better through weight gain and independence. I’ll do what I can. I still feel worlds away from eating, sleeping and functioning like a normal person.

Posted on March 15, 2013, in Uncategorized. Bookmark the permalink. 4 Comments.

  1. One day last year, my (very awesome) dysphagia professor from a few years ago either commented on or posted a link to your blog on facebook. Ever since, I’ve been silently following your experiences.

    I wanted to let you know that I’m rooting for you! Sunny, warm days are ahead. Your appetite and activity levels will be back. Positive vibes are coming your way from northeast Ohio.

    Just keep swimming 🙂

  2. One step at a time. If all you can do is get out of bed for ten minutes, then that’s great. Maybe tomorrow or the day after it will be fifteen minutes. I’m sorry you’re struggling to regain your strength and feel so much pressure. ~Catherine

  3. For you it is really “one step at a time”. Please know your readers are sending support long distance!

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