The question I get most often when people ask me how I am doing is about what my daily life is like. What does a transplant recipient who is doing better than before, but who still needs to improve her condition before being functional enough?
Basically, I’m waiting to get better! The recovery period depends on the people, we are talking between 3 months to a year. It is often longer when the person has been in end-stage renal disease for a few years, which is my case. It just takes longer for the brain to readjust to reality.
To help me, they are trying a new drug: an antidepressant/anxiolytic, since I am a lot more anxious than before (you will tell me, a fatal disease and a transplant, it can do that to someone :P) and that my system still seems slow to restart.
Here is a portrait of a typical day to give you an idea of my daily life!
Typical day
7:30 am – Wake up to go take my morning anti-rejections. I feed Serge, one of my cats, so he doesn’t wake me up screaming later 😛 I go back to bed.
9am – I’m starting to wake up for real. In the morning, I have a lot of trouble functioning. Whereas before I woke up and was immediately functional, I now have my brain in mist for several hours. As I can do, I stay in bed, sleepy, until I go to collect enough willpower to get out of bed. There are limits to dragging your feet!
10am – I start the coffee machine and prepare my breakfast. I have breakfast reading the newspaper most of the time, or I read a book. I give the cat his medication, empty the dishwasher, do my morning hygiene and go rest.
10:30-12:30 – As I said, I’m very tired in the morning these days. I often move to the living room to rest on the couch a couple of hours before starting my day. I don’t do anything for a while, regenerating my mental energy. It sounds boring, but I need it!
12:30 pm – Dinner preparation, eating, dinner medication
1pm – I’m trying to accomplish the day’s project. On Sundays, I plan one project a day for the week, ideally for just one hour (as recommended by my psychologist). The goal is for me to resume habits, a certain routine, a daily practice of effectiveness. It’s been two and a half years already that I’ve been off work, I have to get used to it again.
3pm – Maybe I’ll go for a walk, or watch TV a little, depending on how I’m doing. Often, I try to finish the task of the day, which I can not complete for lack of concentration.
5:30 pm – (Start of my more efficient part of the day. I don’t know if it’s my medication that makes me so zombie in the morning and afternoon?) Every other day, I start preparing dinner. The other day, I go do elliptical in the basement for 30 to 60 minutes while Thierry prepares dinner. Lively music and joy on the menu! A refreshing shower is required afterwards.
6:45 pm – Dinner with my boyfriend, and Erika if she is there ♥ Taking medication.
7:30 pm – Taking anti-rejection meds. When the whole meal is tidied, we will sometimes walk together for a 30-60 min. After more than 4 years together, we still have things to talk about, or to discuss. Even silence is pleasant! Otherwise, either we watch something together, or we do a project (washing the inside of the fridge was the project this week). Often, we each do our own things. It’s time to play a computer game, or try to get up to date with my emails (I’m slow but I’ll get there one day)!
9pm – It’s time to do my Duolingo, an application where I have been learning Spanish for more than 1250 days in a row. Hablo en espanol un poquito, pero soy mejor para leer o escribir 😛 If I’m motivated, I’ll stretch at the same time.
9:45 pm – Hygiene routine and evening medication (I know, I still take so much medication! Sometimes I joke that I get enough to feed myself all day! :P)
10pm – Yoga! A few days ago I started a 30-day Yoga with Adrienne program. I’ve been doing it daily ever since. It makes me start to build muscle a little again, and it relaxes me before bed.
10:30 p.m . – Reading in bed until sleep, rarely past 11:45 p.m.
Doing the best I can
Basically, I rest, move and try to relearn how to focus. I’m told that I’m doing everything I can to get better, and now I just have to persevere until there are results. The risk is as always that I do too much and exhaust myself rather than regain energy. I do my best to find the balance! And sometimes, like when I made the instagram post lower, well I rest and that’s it. I do my best!
That’s what my days look like. It sounds relaxed, but it’s a lot for me at the moment. As I say all the time, I see an improvement every week, so it’s going to get better eventually! I believe in it!
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