Today's post is a little off topic from art and lolita, but I promise I'll tie it in. I thought for a long time about doing an 'illness post' as I don't usually talk about my condition (although I've got better at opening up about it lately), and I didn't want to write a negative / self-pity post when everybody goes through a bad time as it is, but I'm hoping it might help those with similar issues or to further understanding of what it's like to live with Chronic Fatigue Syndrome (CFS) / ME.
CFS has an underwhelming name that often leads people to say things like, "oh, everyone gets tired from time to time" or "I always feel tired after work", but it can be very debilitating, and simply put means sufferers feel tired most, if not all, of the time, with joint pain and other difficult symptoms. It can range from affecting your mood, to your ability to work, and at its most extreme leaves people bed-bound. There is no known cure, but graded exercise (small doses of exercise, being careful not to overdo things: literally don't run before you can walk) works in a lot of cases.
I'm lucky in that my condition is manageable and is mild to moderate. It's something I've battled with for a long time, and was misdiagnosed early on with hormones / "being a teenager", then depression when I was no longer in my teens, and finally after a lot of research and tests, my doctor arrived at the conclusion that I have CFS. I did suffer with moderate to severe depression, but I think it was more a symptom of CFS or something I had alongside it, since I'm rarely troubled by serious feelings of negativity these days.
When I say my condition is manageable, what I mean is, so long as I plan my time, take enough rest breaks/days, and don't exert myself too much, I feel ok and able to work. I have migraines and headaches a lot, joint pain on and off, and a sore throat most of the time. If I do overdo things, I can only describe the feeling as having the flu and food poisoning combined with the worst hangover and jet lag all in one, but compared to some sufferers, I've won the lottery – I'm not bed bound and can hide the fact something is wrong if I'm coping at the time.
After struggling with full time jobs, my doctor and I worked out that the most hours I can work in a week is 25, so long as I don't commute far, and I cannot work on my feet or in physically demanding roles e.g. as a waitress or cleaner. This severely limits the amount of jobs I can apply for (where I live, it's mostly menial jobs that are advertised as part-time), and I don't see myself as disabled, so I would feel wrong ticking that box on an application form. I was doing fine in a 20-hour-per-week graphic design job, until the company I worked for went under and I lost the job, realising how thin on the ground those jobs are. Since then, I've worked for myself as a designer and illustrator, which is nerve wracking as at the moment I don't make much money. I'm still looking into part-time jobs to go alongside this.
CFS has limited my progression as an artist, because I'm not able to put in the amount of hours I would like to, so improvement is slow. It limits my social life, as seeing friends for a few hours or going to a lolita meet means I have to schedule at least one day of complete rest. It feels worth it, to be able to see friends, but I do get jealous sometimes that they can fill their free time with lots of fun activities.
It affects my ability to exercise, so I am out of shape and a little larger than I'd like to be.
It affects my immune system, as if I catch a cold it turns into flu and I spend at least a week in bed (so I get annoyed when friends invite me over without telling me they have a cold!). If I am out socialising for a long time, I get very ill, which makes things like going to weddings or overnight trips extremely difficult, and I can't take the risk of drinking outside of home.
The last wedding I went to was in the middle of nowhere, with no taxis available, so I couldn't escape to lie down for a bit - I ended up with the worst migraine I've ever had and was violently sick until I eventually got picked up by our friend's dad and got into the airbnb bed. I spent the next day crying all day with the same migraine and asking my boyfriend why he was so bad at looking after me, which made him upset too. Luckily this kind of situation is unusual and again, I want to stay positive - if there is somewhere quiet where I can lie down with a cup of tea and sleep for a few hours, I'm ok. So in future, I'm letting people know, and making sure there is somewhere to escape to when I need it. If I go to something like the annual tea party club event in London, which is an all day full-on event, I just go for the first day and spend the night before and after in a hotel.
Sorry, this was meant to be a positive post! I think CFS has taught me to prioritise important things in life and not to do things that aren't worth my time. I only meet with people I truly value the company of, and am very careful with rationing out my energy into things I'll feel satisfied with, such as reading a book instead of playing a video game (this is just me, you might feel the opposite), or drawing instead of shopping. It's made me realise how much I want to be an artist, and what sacrifices I have to make to achieve those goals. If I could handle commuting to a full time job, I would probably still be stuck in an office cubicle making lines of text fit into neat, pre-designed indesign templates – maybe I would have given up on illustration completely. So I have to be thankful for it too.
I try to be kind to myself and not feel bad for doing less, and treat myself with things like new pyjamas or bath bombs so I have something to look forward to on a bad day.
I try to walk for 30 minutes every day, and although it's all I can manage, it feels good to be outside in the fresh air. Ironically, it's made me value the health I do have, and I know it could be snatched away from me – from anyone – at any moment. I choose not to feel scared. I remember other people go through difficult times too, be it depression, grief, a job they hate, the breakdown of a marriage, caring for a sick relative; people don't always share these things, it doesn't mean they have a perfect life. I choose to be happy with what I have, for now. There are times when I feel down, or frustrated, or jealous, but I let myself have those feelings and then pick myself up. I'm lucky to have this resilience.
I hope this has helped someone and feel free to ask any questions if I've not explained anything properly. Do you have something that hinders where you want to be? How are you coping, and dealing with life's hand?