This morning I was wondering how I was doing. In the last two weeks, I have been writing an article on dialysis patients and transplant receivers in Ukraine, but I can’t concentrate enough to write it decently, even if the search for information is over. I’m not achieving what I want in my writing, I’m too distracted by everything. But hey, I accept my condition, and I decided to write about it this week, instead 😛 Next week, it will get better, I will manage to finish my article 😛 Or not. But I’m trying.
Since the beginning of the week, I have been trying to accumulate spoons so that I can babysit my 9 months old niece today. I still had a hard time collecting them. The good news is that I succeeded, I babysat my niece for 5 hours and it went well! I still have enough energy to finish my day, but I know that I’m going to eat cereal for dinner, because I’m too tired to eat anything else. Totally worth it, would do it again in a heartbeat.
The last 3 weeks have been hard on me. Even though I’m off work, I still have some responsibilities in life. We still try to share the chores equally between my boyfriend and me. I want to write one article a week for this blog. I try to do some exercises to stay in shape. I want to do activities with my daughter-in-law, and create positive memories for life ♥ I want to boost awareness of Polycystic Kidney Disease and organ donation in the province of Quebec. For the past 10 years, I have been a caregiver for my father, who is 86 years old; it involves a couple of hours per week.
I can do what I wantto do, but every time I do something, it’s always a little bit beyond what I can do.
But I want to keep it that way. Otherwise, I won’t get anywhere, and that would be far too depressing for me.
Between the responsibilities I want to do, I have little energy left for entertainment. I even have trouble playing video games, it makes me too tired. Thierry gives us Kung Fu lessons on weekends, and I spend my time asking that we slow down, so as to not vomit. My cat wants to play with me in the evenings, but I’m in distress because I have to go to bed. I wanted to can vegetable broth with our scraps from the last few months, but I finally froze everything. … You see what I’m talking about.
I spend a lot of hours just waiting to get better. I spend a lot of time managing my spoons, and cancelling things to keep some. It’s not perfect, but I’m trying.
Thinking about long-term
These days, I’m trying to see the fact that my kidney function has stopped dropping as something positive. I don’t need to be on dialysis, even though I have a lot of symptoms. If there ever is war here, I will not find myself without dialysis equipment. Yes it means more time without having a kidney, but it gives me time to one day start writing my book. It gives me time to raise awareness of the disease. It gives me time to watch Star Trek.
But my brain is fighting back. But when will I have my children? What about my career? I would like to see my friends, but I need Thierry to come with me to drive me because my friends are far from where we live, and I will not be able to drive, see them and drive back alone. How long is this constant wait going to last?
And there my brain strikes back: well that’s your life, deal with it lol. It’s okay, I have a fabulous partner, we are even more in love after 3 years, I have a fabulous niece and sister, good friends, salary insurance, a good brain to still mobilize me and be useful sometimes. I have a job that I love that awaits me when I return. I have dreams, projects, and the chances are good that I will be able to realize them one day.
That’s what I try to keep in mind. It’s not perfect.
But I’m trying.
¯\_(ツ)_/¯
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