I’ve mentioned this a few times before but I have Chronic Fatigue Syndrome. It has taken a while but my CFS has improved enough that I almost have enough energy to live a relatively normal life. I don’t work but I am currently studying graphic design, I also run this blog which takes up a surprising amount of energy.
Some of the symptoms of CFS include long-term fatigue, muscle pain, headaches and brain fog. There are also many others. One of the big signs of CFS is called post exertion malaise. This meaning you experience fatigue some time after expending energy.
Think of health bars in games. People with CFS have a health bar, this represents the amount of energy they have to use during the day. Tasks take up energy. The game is to get to the end of the day and still have health points left. Otherwise you start borrowing health from the next day.
People with severe CFS/ME have a really small health bar, this means things like getting out of bed or making a meal takes up most of that. People with mild or moderate CFS/ME have a bigger health bar, meaning they have more points to spend during the day. This means that people with severe CFS could experience debilitating symptoms all the time, when people with mild or moderate only experience severe symptoms when they are running low on health.
So today I thought I would share some of the ways I stay organised so I can get stuff done but in a way which doesn’t turn my CFS into an angry rage monster.
MANAGING STRESS TO MANAGE CFS
Sometimes I find it really hard to tell when I’m stressed because that stress manifests as anxiety. Usually that anxiety is caused by the amount of stuff I need to do, coursework in particular. To combat this I write down every single thing I need to do. Bullet journals are great for this but recently I’ve found making a mind map with all my tasks works great too.
What I do for this is create a heading then each task I do spreads out from that. I find it useful to do this because I can begin with the large tasks I have, for example coursework, and from that I can go into more detail. It doesn’t matter too much if I forget to add something onto the mind map because I can do it later. From that I can create a list of tasks needing done, this I can further break it down into how urgent the task is.
By doing this I’m not spending so much energy stressing about the amount of stuff which I need to do. This then means I have more energy to get things done.
I’ve found it’s really useful to figure out the things which are most important to me. This way I can work out how much energy I spend on each thing. Obviously the thing that is most important is my studies. Because I don’t work I try to treat this as my job as much as I can. During the weekdays I spend a good amount of the time I’m not in class working on this. My other top priority is my blog. Because I enjoy doing it and because I have managed to get some freelance work through it.
This is done in tandem with some sort of planner. I figure out what needs done then write it down so I don’t forget. Knowing what I have to do reduces stress which in turn helps my CFS.
My other priorities get whatever energy I have left. This is things like self-care, cleaning and my social life. The first two don’t take up a huge amount of energy. But I’ve found I really don’t have a social life any more because of my CFS. Being social takes up a huge amount of energy which I really don’t have. I still get to see my friends occasionally but I’m not able to go out all that much.
HAVE A WEEKLY ROUTINE
I have set days for certain things. I’m in class on the same days every week so that’s set in stone. I spend the weekend working on my blog. Usually I have a day for writing and a day for photos/ editing. But I also have set days for laundry and washing my hair. I do the laundry on set days because I find it takes less energy when I’m doing smaller loads. Doing this means it doesn’t build up to the point I need to spend the day doing three loads of laundry. Depending on how I’m feeling during the week I will fit in a rest day somewhere, on those days I try to do as little as possible.
Having a weekly routine really helps me but it also needs to be flexible because I can have a bad day out of nowhere. Even just a bad nights sleep can throw the whole plan off so I need to be prepared for that.
HAVE A DAILY ROUTINE TOO
Over the last six months I’ve started using a daily routine. I try to stick to this as much as possible but things do change occasionally. The routine mostly revolves around the times of day when I have the most energy. Usually I wake up around 8 or 9. This gives me an hour or so to have breakfast after which I have two hours of ‘work’ time. I find I have the most energy in the morning so this is the time where I get my most urgent tasks done.
The rest of my day goes something like eat, work, nap, eat and maybe do a little more work. The important thing is staying organised with all the things I have to do and then figuring out when I will have the energy to do them.
This routine goes out the window on the days I have class. I’ve found that so long as I get enough sleep the night before and take naps while travelling I don’t get over tired. This routine doesn’t always work and there are times where my CFS still gets bad and I miss class.
The problem with Chronic Fatigue is no matter how much I try to eat right and watch how much energy I use there are still times when it gets bad. Sometimes this could just be down to the time of year it is. Or I have family things on which have thrown off my schedule. No matter what I’ve found in these situations it’s best to be flexible. If I have a bad day I need to just go with it. Accept that I won’t get anything done and rest as much as I can.
This also means when I have good days I get a little more done than normal to make up for the work I missed during the bad days. By spreading out all my tasks this way I find I never get too behind with anything. Obviously it isn’t always the case but for the most part it works out.
This advice may not help everyone. In fact it may not help anyone at all. CFS is a fickle thing and everyone has different symptoms and different energy levels. But I hope you can at least take something and adapt it to your situation. I guess it could apply for anyone with a chronic illness, not just those with CFS/ME.
Write everything down.
Spread out your workload.
Take breaks when needed.
One response to “How I Stay Organised To Manage My CFS”
I really enjoyed reading your article. I can relate in so many ways as I suffer from a different form of chronic illness?autoimmune disease called Endometriosis. With Endometriosis, I get fatigued also, so I know what you go through. Thank you so much for all the tips.