Day three and it almost looks like my fear of failing will come true. It’s been a terrible day (and I am really upset with windows ten always putting my computer to sleep and changing my keyboard to English so it becomes impossible to type). It’s a long story and it’s complicated the same way it always was when I was playing Minecraft on the Lords of Minecraft server (does that still exist?) I’ll try to explain, but I have to start from the beginning. Hoping that Alphaville and the sweet scent of lilacs will help me through this day.
It was my first stay in the hospital, which lasted practically all of February. I had told one of the nurses or doctors that I would often forget to take my medicine. I was wondering if they knew of a way that I could get someone to help me remember. That was a bad idea. The solution they had was that some nurse would come to my home several times per day and that the medicine would be kept in a locked cupboard or safe like thing, which I would have to buy. That did not sound like a good idea to me so I told one of the nurses in hospital that it wouldn’t work and that I would not cooperate with that idea. I refused. That lead to a long discussion with the top dog doctor (whatever you’d call such a person). Eventually we agreed on a compromise, I’d go to the medic center near where I live and pick up my medicine three times a week. I was not allowed to be in charge of my own medicine, for some reason the doctor didn’t want me taking too many. I’m not allowed to die. For some reason he thought I might do something stupid.
Going to the medic center three times a week just to pick up meds doesn’t sound too difficult, does it? It’s easy. On paper it is. For anybody else than me it most likely is. To me it isn’t, but to explain that to other people has been very difficult.
The second time I was in the hospital, which was most of April, there were a lot of meetings about the state of things at home and how we could make it work with the help I’m supposed to have. I tried to explain that for the month I had been at home, that was March. It had been stressful enough to go get my medicine all the time and that the days I was “free” I really needed my rest. Why? How do you explain something so complex you don’t really know yourself. All you know is that you are exhausted from this seemingly simple task. I agreed to have a talk and make some kind of decision together with the people who decide these things. And just so you know, I’m one of the people who decides nowadays. I don’t just say yes to everything, it’s my house and my life and I know what help I want and need. Thing is though I came home from hospital this last time (please let it be the LAST time!!!) in the end of March and I have still not talked to them… so, yeah… hm…
Anyway, I found a post on Instagram, that helps me explain why it’s to tiring. It kind of explains how it is to live with a chronic disease and even if they maybe mean something other than the health problems I have it’s close enough. They said that we get a certain number of energy every day, which probably is true for all people, but for the chronically ill the number of spoons (their way of measuring the energy) they get every day is twelve. Then there were listed how many spoons you used for different things you do in a day. Getting up, getting dressed, watching TV took one spoon each. Taking a bath/shower, blowing your hair would take two spoons each. Preparing food and eating it three, going for a drive also three, going to the doctor four, going to the store was also four. I don’t remember all the examples, but the idea is to add up all the spoons you use in a day. It the number is higher than twelve then you have to take those from the next day leaving less energy for that day. You never get more than twelve though. When I add the spoons for the days I go to the medic center I always need more than twelve and I know that I am very tired the days in between.
The reason today has been such a terrible day started on Wednesday with the usual trip to get my medicine, and doing some quick shopping. In the afternoon I had to go to the hospital to meet my contact person. I didn’t get home until very late in the afternoon. And then I had to write my blog, that began again this Wednesday. Yesterday. Thursday, I had to go with my roomie to hospital so he could meet with his doctor. I drove around a bit, took some great pictures, but once again I came home very late. And then there was the writing. Today I was super tired, but I had to go get more medicine since it’s a long weekend. They don’t open until Tuesday. Besides the medicine I also needed to have some blood tests taken. One of my pills is messing up stuff I have to take a pill for the messed up stuff and they want to see if it’s working. I thought I would be able to sleep when I came home again, but I think it’s been the hottest day so far. No sleep possible, there are more cars with AC than houses in this country. Warm out means warm inside. Getting a little bit cooler now it’s almost 9 pm, but the sun is still up so….
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