I decided to do something a little different today. As I’m sure many of you know, I have a chronic illness. I have Chronic Fatigue Syndrome which makes daily life extremely difficult.
So today I thought I would share a typical day in my life. I took a photo of everything I did during the day and this is the result. Chronic Fatigue makes it extremely difficult for me to cope with every day life. To some it may seem like I have a very mundane existence. Unfortunately this is the reality of living with a chronic illness.
A DAY IN MY LIFE WITH CHRONIC ILLNESS
I wake up some time around 9. I’ve found ever since being diagnosed with a chronic illness I need far more sleep than what I did previously. In the past I was able to stay up till 2-3am with no consequences. Now I find it extremely difficult to cope if I don’t get at least 12-14 hours of sleep. Ironically my Chronic Fatigue makes it very difficult to sleep.
This particular morning I wake up to find it has snowed overnight. I also have no pressing matters to be dealt with. This means I can have a lie in, hoping that I won’t be so tired during the day.
Eventually I get up. In the past I wouldn’t have bothered with breakfast. It’s always been something which made me feel slightly ill. But I’ve found with this chronic illness I really need to eat something first thing in the morning. So a banana it is.
I check the post to find out I’ve been sent two books to review. Written in the Blood by Stephen Lloyd Jones and Smiler’s Fair by Rebecca Levene. I was really surprised to get a copy of Smiler’s Fair, I requested it over a month ago.
I decide to take the dogs outside for a quick walk. Though going out is something I still find difficult it always makes me feel happier. The snow really helps too, you might be surprised to learn its not all that often we get snow in Scotland.
Alfie is still quite young and hasn’t really seen a proper snow fall so he really enjoyed getting to play in the snow. My older dog still enjoys playing in the snow too. Though because of his arthritis he can’t move about like he used to.
SOME BLOG WORK
I finally sit down to work on some blog posts. Because of my chronic illness I try to have posts written in advance. This makes it much easier if I have an unexpected bad day. I’ve got a little more blog work than normal to do because of my Chronic Fatigue not playing nice with the cold weather.
I start working on a new draft post. I’m not entirely sure what the post will be about yet, I have a few photos and a vague idea of a subject. I like to do a first draft in my notebook before starting a new post in WordPress.
This notebook is my everything. I take notes in it, paint, plan out my time. This one tool is the best piece of stationery I’ve bought in a long while.
The post comes together quickly enough with words and photos. Its just a short blog post this time. I manage to get everything typed up and scheduled before lunch.
Lunch is quick and simple to make. Before having a chronic illness I never considered the possibility that being ill would make things like cooking difficult. Even thought I’m better than what I was cooking is something I still find tricky.
I take this time at lunch to rest and catch up on a few youtube videos. With Chronic Fatigue its really important to not over extend yourself. I keep having to remind myself its okay to take breaks every so often.
After lunch I decide to make some shortbread. I love shortbread and this recipe in particular because its more cake-y than some recipes I’ve found. If you go into the shops looking for shortbread you’ll probably only find thin sticks. But shortbread can be chunky too.
The other advantage of this particular shortbread recipe is how quick it is to make. Shortbread is literally just a mixture of sugar, butter and flour. I get the whole thing mixed together and into the oven in under five minutes. It takes me far longer to tidy up than it did to make.
While the shortbread is in the oven I take photos for a blog post. My photo studio set up might look slightly ridiculous but it works surprisingly well. The white foam board is cheap which makes it a great background. It also works well to reflect light so the dark side of the book isn’t quite so dark.
BLOGGING WITH A CHRONIC ILLNESS
I start working on a new book review. This is the last thing I need to do today which is good because I’m just starting to get tired. I’ve learned that with chronic illness you really need to stop before getting overtired. If you don’t things will just be worse in the long run.
I take amitriptyline every night to help me sleep. The unfortunate irony of Chronic Fatigue is it makes me tired but also unable to sleep. There are very little medications I’ve tried which help my CFS. Amitriptyline is one where the results are just slightly better than the side effects it causes.
Before going to sleep I do a quick last check of my emails. There is never usually anything which is so important it needs to be replied to straight away. I’ll also take this time to go through any comments I’ve had on my blog.
After this I’ll read something. Today I’m starting a new book. The Ocean At The End Of The Lane by Neil Gaiman. I always try to be done with my evening routing by 10. It really helps my CFS if I get enough sleep at night. Of course my CFS being a tricky thing there are always bad nights where I don’t get much sleep at all.
I hope that was an in depth enough look at what daily life is like for someone with a chronic illness. Of course the amount I’m able to get done in a single day can change. Some days I do more which leads to days after where I have less energy. But overall this was a good day.
I finished some blog work that I wanted to do and I didn’t feel too horrible while doing so.