This is a post for me to write and even if I
publish it I may not promote it. Having a chronic condition is not only
debilitating but extremely personal. I'm lucky in a sense because my symptoms
are mild and sometimes I can forget I'm ill at all. I've also been able to achieve some things that anyone would be proud of. Hopefully you can gain some
kind of understanding of this condition and other invisible disabilities.
*TW: suicidal thoughts*
I have chronic fatigue syndrome or myalgic
encephalomyelitis (not that I ever bother trying to remember that) and I hate
it. It's also called CFS or ME (which is confusing for so many reasons and is
definitely not MS) and I usually alternate between calling it chronic fatigue
and ME.
What is it?
Before I explain why I hate it, I'd better
explain what it actually is. Simply, it's a condition where you're constantly
exhausted and you are not refreshed by sleep (sleep doesn't make me feel any
less tired, let that sink in for a second). That means it's not a case of
needing a nap (a lot of the time they just make me feel worse, in fact I struggle to get to sleep in the first place) but it's a
chronic condition that leaves me feeling drained... permanently. There are also
other symptoms like muscle aches, headaches and migraines, photo-sensitivity,
memory loss, poor concentration and a whole host of other symptoms which you
can read about here.
There is also no cure. No cure for a
disease that makes me feel like an old woman at 20 (and has done since 16). The
summer after GCSEs I started to become really tired all the time, taking
frequent naps which was completely out of character for me so that's when we
say the symptoms started to manifest.
It's way more than sleep!
I struggle with it for a lot of reasons.
It's been hard to separate the ME from me and who I am because having a chronic
condition creates a new you. My moods are different, my levels of tolerance for
things that annoy me are different, I can't concentrate on anything like I used
to (and that makes it really hard just to watch a movie with your friend). I
have anxiety and depression from it which makes things like social interaction
and going to work really hard (not great when you're a university student with
no financial safety-net). I over-think everything and quite often have suicidal
thoughts (though not intentions) when I'm feeling low. My immune system is also shit so colds linger which really doesn't make me any more productive.
I try to be sociable, friendly and approachable
and I feel I struggle with that too. Some days I have energy and I tend to
overcompensate for the days when I didn't, which can make me seem hyper,
clingy, desperate and probably really annoying (I even slapped a guy in the
face once, banter gone hella wrong). I find I'm always apologising for my bad
temper, some of which needs more mindfulness on my part and a significant
amount which comes from being too tired to function, let alone consider other
people's feelings. I've clashed with my whole family over it, from falling
behind with chores, to visiting my grandparents, to taking a gap year. Yet
they've still been an amazing support, as have the friends who understand me,
or just like me for who I am.
It makes it hard for me to see the kind of
future I want for myself as attainable. How can be expected to work a full-time job? I worry about every trip I make and
have to plan ahead to ensure I'll have enough energy for it. It makes it so
that I want to go home early or stay another night at a friend's because I
can't face the long journey home. Travelling wears me out, cooking, working,
doing nothing, let alone exercise (I was lucky before but now I've started
putting on a ton of weight). Symptoms are worse on bad days and I've become
better at managing them, along with finding a medication which works for me,
for the most part. I've also gotten a bit better at self-love, though pacing is still quite hard.
Over to you...
That's it for now though. CFS is like... my
whole life, so I'll definitely have more to say about it. Leave your comments
with your own experiences and any questions below, if you want to.
You can learn about how hard it is to
ration energy when you're trying to lead a normal life here (Christine
Miserandino's Spoon Theory).
Everyday Feminism has some great insight
into invisible disabilities here. The first article is so relatable for me and
must be for so many other people!
Thanks for reading!
