Creating With Chronic Illness

by Aiyla Beau

Before I get stuck into my personal journey, I first want to break down what chronic illness is and specifically what my chronic illness is. The definition of chronic illness is a health condition or disease that is persistent or long lasting, the term chronic is normally applied when a condition lasts longer than 3 months. The condition I have is Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (M.E./CFS for short).

CFS is defined as a condition that causes extreme tiredness (fatigue) and a range of other symptoms, which normally include: dizziness, brain fog (cognitive dysfunction), head/muscle/joint aches, sore throat/glands/sinuses, light and sound sensitivity, heavy limbs/weakness, post exertion malaise (a fancy way of saying when you do too much it gets worse) and sleep dysfunction.

Put simply it feels like having a horrible cold or flu, and a stinking hangover at the same time... but that feeling never fully goes away. There are various levels of this illness, for some it's manageable and after a while you can live a pretty normal life, for some it can be devastating, to the point where getting up and brushing your teeth is all you can do in a day, if you can do that at all.  Due to the way in which the condition manifests itself, and the fact that doctors to this day still don’t really fully understand what causes it, it's often misdiagnosed and for a long time wasn’t even considered “real” with many patients being diagnosed with psychological disorders instead. The latest theories state that it is a neurological dysfunction that means your immune system attacks various systems. 

Most people develop ME/CFS after a viral infection. This is what happened to me, and during my diagnosis, my doctor explained how ME/CFS works from a neurological standpoint, which has helped me to come to terms with it massively. SO, time for a lil’ science lesson!

When a virus enters your body, your brain sends out warning signals, like an alarm. These alarms cause the symptoms that you have when you're sick, so you'll get a headache, a sore throat, bunged up nose, lethargy etc... You'll feel like shit! Feeling like this makes you rest, which lets your body fight the virus. Once your immune system has flushed out the virus, the alarm system is switched off and you go back to feeling fine again. In some people however, that alarm system doesn’t switch off, it remains on even though the virus is long gone. These people have developed ME/CFS, and will keep feeling their symptoms, in most cases for the rest of their lives.

As you can imagine this can mean that living a “normal” life can become very difficult indeed! Many end up losing their jobs and have their whole world turned upside down. I consider myself very lucky as I was already self-employed and on my own schedule when it happened, so I've just had to juggle my schedule and make lifestyle changes over these last two and a half years. It's been hard but I've managed, if I'd still been a 9-5er however I'd have been in big trouble. This is because you're kind of at the mercy of your symptoms, especially those first couple of years, keeping to any kind of arranged schedule is nigh on impossible as you never know how you are going to feel, it’s a surprise to me every morning even still as to how I feel, and every night on whether I will sleep properly, or at all?! At least it's exciting!

Creating content or doing any work within this constant state of flux is like a balancing act, I've learned that when I'm good, to get as much done as I can, but not to overdo it, cause that will mean I'll feel like crap in a couple of days. After a few years though, I've learned pretty much where my limits are and how to manage my condition, I've found my “new normal” but it has meant making some sacrifices and limiting my life down a notch. For example, I can no longer dance in the strip club, not even one shift a week, it was taking me an entire week to get over that one shift, which isn't feasible to maintain. It's meant things like exercising and socialising have taken a back seat (I'm an introvert anyway so the social aspect wasn’t too hard to get my head around) but finding that exercise balance is still something I'm tackling at the moment. Daily it just means not overloading myself with too much work at one time, and being realistic about timeframes and expectations of myself, and most importantly not beating myself up when despite my efforts it all goes to pot anyway. Being kinder to myself and loving my body even in its worst times has been the thing that has been the most beneficial to me.

 It’s a hard thing to deal with, accepting that you’re not the same person, in so much as you can't do the things you used to, and you have to live within new limitations. Dealing with feelings of it not being fair, especially in that first year, being so tired and so sickly and just wanting to wake up and feel normal, like it never happened. Not understanding what's going on and questioning whether it is all in your head will have you thinking you're going insane. However, over time (and especially after I was diagnosed) I've been able to accept the new me, and she and I are working together finally, to achieve our goals and live our best life! 

There are around 15 million people living with chronic conditions in the UK, which blew my mind when I heard it, so if you're reading this and you're one of them, I see you, I know it's hard, but you got this! 

Top tips for creating with chronic illness:

  • Write out a schedule... but be prepared for that to be blown out of the water

  • If your schedule goes to shit, don’t panic!! The world won’t end, everything will still be there tomorrow

  • Work good when you feel good, try to gauge how you feel and shuffle your workload accordingly, if you wake up feeling like shit but you’ve got 20 things on your to do list, shuffle those bad boys around, do the ones you can, move the others to somewhere else.

  • Prioritise what needs to be done, make the distinction between what you want to get done and what you have to.

  • Write things down, have a workbook or planner so you don’t forget everything!

  • Forgive yourself, don't fight yourself, it's not worth it in the long run, instead try to adapt, you'll find it far less emotionally stressful.

Love you guys 


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