Wednesday, 8 February 2017

Living with CFS/ME

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?


  1. Thanks for sharing your experiences with ME. I know a fair few people who suffer with the condition and yet it seems most people have never heard of it or don't quite understand just how much it affects a person's life. Here's my friend's blog I mentioned when we met up (and I now feel very privileged that you considered that something worth doing!):
    It really angers and saddens me that under doctor's orders her condition got worse, but I admire her resolve and desire to keep pushing forward. I can only hope that one day there will be a more clear cut cure for this condition, and more research put into understanding it and how it affects different people.

    Being outside can be so therapeutic at times (though I wish this wintry weather would ease up a bit!) We have to try hard not to compare ourselves to others as we're all just putting our public face forward and recording the good parts of our lives. I've gone from feeling envious of other people's picture perfect images to understanding the importance of creating positive memories to display so I have something nice to look back on during the not-so-good times. Probably that's all other people are doing, too ^_^ Still, it can be healthy to allow yourself to have those negative feelings-- process them, get them out, deal with them, and "pick yourself up", like you said.

    I can't help thinking I'd be a lot further along in life career-wise if I didn't have mental health issues to deal with, but I suppose it's an unhelpful train of thought. All I can do is understand my own situation as best as possible and hopefully get to a stage where one day it's merely background noise as opposed to a front and centre issue I'm constantly having to contend with. I do my best to improve myself and to not beat myself up when I don't feel strong enough to do certain things that someone else might be able to tackle with ease. With whatever difficult situation you have to deal with, I think it's important to reach that point where you're not angry at yourself, and to treat yourself with the compassion and patience you would any other loved one. Easier said than done, of course, but hopefully I can get there.

    1. Thanks for linking to Rosa's blog, I'll check it out and it's good that other people are sharing their experiences, too. It's terrible that her condition got worse, and her doctor didn't properly understand it. I think some doctors don't "believe" in invisible health issues, but I'm hopeful that that generation of doctors is retiring to make way for people who are more enthusiastic about helping people.

      It's so true about putting your public face forward. And some photos have been edited carefully, have good lighting, and good makeup, to show people at their best. Even my own photos that I like, I start thinking "I only look like that because I used a filter". We need to give ourselves a break sometimes!

      I know it sounds really strange, but I picture myself in the future, say 15 years time, and imagine myself to be successful and the kind of artist I want to be (as well as an old lady haha). I work towards that and believe in that outcome, knowing the work I have to put in now. That gives me the chance to be kind to myself, not having a "deadline" of 1 or 2 years to grow, but letting myself get there in my own time, while motivating me to practise so I can make it a reality.

      I'm sorry you feel that way about your career, and I hope you can think about how far you have come, both in terms of establishing your brand and having jobs, to your health progress. There are some people who give up completely and don't even apply for a job or do anything on their own initiative. One day, I'm sure, you will look back and be really proud that you made it through. For example, when I graduated, I was disappointed with my degree, but now I look back and think – I GRADUATED! I actually did that. You did too. You set up your own online shop/business, and you inspired me to sell online; I'm sure you inspire more people than you think. There might always be days when you feel down, but they will be fewer and further between, and you will learn the skills to stop yourself spiralling.

      It was a lot of fun to meet up, and I definitely want to again if you're up for it. ^_^

    2. That's what I hope for, too. It seems like a lot of people get shouted down when they speak to doctors about their health concerns, but I would like to think younger generations are better at taking these things seriously. I think there's been a massive improvement where talking about mental health is concerned, so hopefully invisible illness/chronic pain etc will follow suit.

      My partner and I were having a laugh the other day because I took 32 selfies and the only vaguely acceptable one was where I was pulling a silly face XD I can only imagine how many outtakes some people's elaborate, perfectly lit photoshoot-quality pictures needed! Occasionally you get a good picture with the very first shot, but I'm sure all of us go through a process to get the best image of ourselves. I try not to take it too seriously!

      That's a really cute idea, honestly. I think there's so much pressure to have achieved so much at a really young age and when we keep going beyond the ages when we should have supposedly made it, it can be super disheartening. More and more I'm coming to terms with this idea that we're never truly finished-- that we always have more to learn and ways to grow. I need to get rid of my own personal "deadlines" too, and just allow myself to get where I want to be without feeling like I'm under a strict time limit.

      So I didn't respond to this comment straight away because your last paragraph might have made me tear up just a little. It's funny how easy it is to forget positive achievements in light of unfortunate or disappointing circumstances in our lives, so thank you so much for that pep talk! <3 I need to remind myself, I GRADUATED, TOO! We got our degrees and are pushing ourselves to create lives which involve us exploring and developing our passions! To know that I inspired you to do set up your shop makes me so happy, and know that I am in support of your endeavours! Us creatives have to stick together ^_^

      I am absolutely up for it!

    3. Yes, more and more is discovered all the time, and mental health / chronic health is such a huge issue now, with people unable to go to work etc, that they have no choice but to start taking things more seriously.

      Haha! It says a lot when our favourite image is the silly face. Some people say it's because a silly one is purposely bad-looking and therefore we feel less self-conscious, but I think part of it is that when we make an expression, we are showing our true selves more, so we are going to look 'better' than just smiling blankly into the camera.

      We live in a strange society, where we are told we need to achieve things when we are young, that youth is everything (especially in film, fashion etc), and that we are only valuable up to a certain age, particularly women, due to how beauty is perceived. And yet, things are harder than ever for young people, with everyone fighting for jobs and struggling to pay rent, that youth isn't valued after all. So I think in your 20s you can feel stuck in a no-man's land when things aren't going how you imagined them to be. We must never give up on discovering our potential – I always think of JK Rowling, who didn't achieve success at a young age. Most of my artistic heroes are older, which I think helps. I was once told at the age of 21 at a job interview that I was "past it" and "far too old not to know exactly what to do" with my life. I believed this for ages, and looking back it was a terrible (and ridiculous) thing to say to someone! Definitely get rid of any notion of huge life goal deadlines, and just focus on one aspect at a time. For example, you could think "this month I'm going to focus on designing/making X" – then it's something within your control and you can build on it.

      Oh no! I'm sorry if I upset you at all. I always feel it's important to let someone know if they've impacted me, or been there for me, or if they're just special in some way, and people aren't always used to it – which is precisely the reason I tell them. It's so nice to talk to people that use their creativity and want to make things happen in their lives, as opposed to people passively wishing for something to happen to them.