Friday, 7 September 2012

Medicine, food supplements and routine

Right before leaving the Fatigue Centre, I got some food supplements. Oh sorry, did I say some? I mean I literally got a bag full. And I mean literally: a bag full.
After the Fatigue Centre I had my blood shot and quickly after that Abunai came around the corner and then my leg went in a complete cramp. Just doing the normal daily things was hard enough as it was with this leg, so I was first recovering from that for a week, before starting something new.

The last few days I’ve tried to figure out what things were needed to get my recovery plan for my fatigue moving on. One of these things was using the food supplements that I got from the Fatigue Centre. They gave me a food supplement plan for three weeks. If it catches on, we’ll see after that what we’ll do with this. At least then we know what it is that I need. If it doesn’t catch on… Well then that’s not it, right?

I sat down with my mum and had a good look at what I need to take in. Are you sitting down? Well, ready or not, here it is: Nine pills in the morning, two pills in the afternoon, five pills in the evening. A few of these pills in the morning need to be taken with breakfast. Those two pills need to be taken before 1 pm. These pills give me some more energy, that’s why they’re all timed. This basically means that I can’t ever sleep in. What if something happens in the middle of the night, robbing me of my sleep, so I need some more sleeping time? I know this sounds petty, but with my Chronic Fatigue, if I don’t get enough sleep, it can REALLY ruin a day. Also, I don’t have a job, so keeping a steady routine is hard enough as it is.

There’s another thing. I need to fix my eating times around my food supplements. Another thing that throws off my routine. I also have to remember taking this many pills in the first place. I’m used to taking pills in the evening and/or morning, but this many AND in the afternoon too? Another break-in in my routine.

I’m sure this all sounds really petty to most of the people reading this. I can understand that. I mean hey, if this is what I need, then I should simply do it right? Actually I totally agree with you, but my body seems to disagree with this.

As I’ve told before, with the whole Fatigue Centre thing, changing my routine is a VERY difficult thing for me to do. Just changing one or two small activities during my day is fine, but I’m talking about the big things. When I have to work my own schedule around something for a long time, this causes stress for me. This has always been the case. A new school? A week of crying (even when I’m looking forward to that school!). A new job? Complete stress and some crying too. All these things that cause most people some amount of stress, causes me to cry and freeze. My whole being just says ‘NO’ to it. Of course, I can apply logic and force myself to do it. This doesn’t make it any easier though. My body keeps refusing.

At one time I had to take some antibiotics three times a day. In the morning and in the evening went fine, but I kept forgetting to take the one in the afternoon. Did I just not care? Nope. In fact, every time I realised this in the evening I got really frustrated with myself. I simply kept getting back to my old routine without realising it and forgot all about the antibiotics.

This problem with big routine changes has actually been one of my most obvious autistic traits. I never noticed it, because I can handle small routine changes and a child gets offered quite some routine. But then I went from primary school (I never changed primary schools) to secondary school. I was actually counting down the days until secondary school, because I absolutely hated the time in primary school. The evening of the last day at primary school and the three days after that, all I did was crying. I couldn’t even properly explain why, because I didn’t know why myself. All I knew was that I was scared of something, didn’t know what as I was looking forward to secondary school, and that it caused me to be upset. Now I know that I was scared of the change in routine.

This is what happens with my medicine and food supplements too. It’s not that I don’t see that it’s important. In fact, it’s not that I feel it’s bad to take them either. I actually really want to take them and figure out if that’s the thing that I need. Still, I’m scared of the change and I’m not sure if I’ll be able to keep to that new routine.

Remember this if you ever see someone struggling with a new routine without being able to explain why please. It’s not always the lack of will. Rather talk to them and figure out together how you can make this change into the new routine easier.

I know this helps for me. I have to say that my mother and sister are being a great help in this. We were going over all the options on how to make this easier. We thought of maybe starting with just a few pills, but that doesn’t take away the times that I have to stick with and the pills were also dosed to fit in three days, so I don’t think that’s a good idea. We also thought of post-its with the amount of pills, when to take them and in what way (with water, melt it under your tongue, etc.) to take them. We’re probably going to do this. Next to that, I’ll probably also put a timer on my phone to help me remember to take my pills.

Having these options have calmed me down a bit, but it still needs to sink in. So we decided to start next week, so I won’t stress out too much. In the meantime I’ll keep busy with some other things that also need to be done to help my recovery, so I’ll keep on moving forward.
I’m sorry if this was a messy blogpost. I can’t really tell if it is at the moment, because I’m stressed out about this change of routine in the future.

1 comment:

  1. The timer on the phone really helps me to take my ritalin. I know that is only 3 pills a day so not really the same, but still. Even during Abunai I was able to take my pills 3 times a day because of this.

    Another tip: prepare a purse (or something else) that you always take with you when you go out. Put your pills in there and that way you will always have them with you, even when you are not home so you won't forget to take them with you. I guess you can do this just for the afternoon pills. I always have some ritalin in my wallet for example and at Abunai I had them in my jeans pocket. It will make things easier and less stressful this way, for me.