Looking through past blog posts I realised that I’ve talked quite a lot about life with mental illness, but I haven’t really focused that much on the other evil in my life: my chronic illness.
I was diagnosed with Myalgic Encephalomyelitis (ME) over 3 years ago now, and it’s been a rollercoaster ride ever since. There are so many new things to get used to, treatments to try, lifestyle changes to make. It’s something that you just can’t prepare for.
I do count myself as very fortunate, because I know so many other sufferers of ME who aren’t able to work at all, and many who are bed bound. But I do still suffer quite a lot.
No time to read now? Pin it for later!
What it’s like living with a chronic illness.
Accepting your new life.
This is not just something you have to tackle when you are first diagnosed, but every single day. Every day I’m faced with the knowledge that I can’t do the things other people can, and I may never be able to.
At first this consumed me. Knowing that I was always going to be this tired, and there was nothing I could do about it. I was only 23 at the time, and your twenties are meant to be your years of fun. Of going out drinking and doing crazy things with your friends.
I felt as if I’d been robbed of my youth before I’d even had a chance to have it.
It does get easier. It hurts a little less every day, and I get on with life a little easier every day.
But I am fully aware of the fact that I am never going to have a normal life, and when I’m old and looking back on my life I am going to have regrets about things I never did simply because I wasn’t able to. And I just have to be okay with that.
Exhaustion and fatigue are a massive part of ME, but they are also a symptom of basically all chronic illnesses. Whatever it is you suffer from, it comes hand in hand with tiredness, it’s not something you can get rid of.
Perhaps tiredness is the wrong word here. It’s not like having a long day at work or having to wake up early after a late night. It’s not something sleep can free you of.
It’s more like a weight on your body. Your limbs are heavy and you are weighed down by exhaustion constantly. Even the smallest of movements become a massive thing, and standing up for longer than you need to feels impossible.
For me, any benefits I get from sleep are all used up by the time I get ready for work. I use up all my energy showering and getting dressed, so there’s not really much left for anything else.
I’m not sure how I actually still manage to get through each work day, it kind of all passes in a blur until I can sit on my sofa in my pyjamas and just relax. In fact this is the only job I’ve had since the age of 18 that I’ve been able to actually do without needing multiple rest days, and using way more sick days than I’m entitled to.
But, I do now spend my weekends basically asleep. Life itself is just exhausting.
Battling with your own brain.
Many chronic illnesses affect your body quite badly but not your mind. You may not be able to walk or move around like other people, or you may be tired, or in constant pain. But you still think and feel the same as everybody else.
The problem with this is that you still just want to be like a ‘normal’ person.
I still want to keep the house clean and do my fair share of the chores and go out with my friends and do everything the people around me are doing. It’s kind of ties into acceptance – I just struggle to accept that isn’t realistic for me.
What usually happens is that I do too much and end up paying for it later on. In fact, since going back to full time work last May I’ve been in a spoon deficit, always using more spoons than I have. I’ve just not been able to catch up. (If you’re not familiar with spoon theory, you can read about it here).
As I said before, I’ve usually used up all my spoons by simply getting ready in the morning, then there’s everything else the day holds.
Besides exhaustion, ME also comes along with its own chronic pain.
Your muscles ache basically all the time, because of the fatigue, and they get tired more quickly than they would for other people.
I often use the examples of drying my hair or grating cheese, things that make my arm muscles hurt that just don’t bother other people. It’s why I wash my hair in the evenings, so it can air dry, it’s also why I cut my hair short.
Joint pain does also come along with it. It often feels as if my joints aren’t lubricated properly (I don’t know if they actually are or not, I don’t really think it makes much of a difference). If I move to much, or put to much pressure on them they get really uncomfortable.
Sometimes it’s shooting pains, sometimes it’s more of an aching. And sometimes it’s for no reason at all.
Oftentimes I can’t sleep properly because I’m having to move throughout the night to take pressure off my joints on one side of my body.
There’s also the migraines you get when you are particularly tired, as your brains reaction to the exhaustion you’re feeling.
I have spoken about brain fog before, but it really has become a huge part of my life. Sometimes it can be funny, but it’s an awful thing to experience repeatedly.
It makes me feel really stupid, because I forget the words for things, or I forget things that have happened, because I’m simply too tired for my brain to function. I’ve forgotten how to use cutlery, or struggled to put on my sunglasses. I’ve called close friends by the wrong name. I’ve forgotten to do really important things. I’ve struggled to form sentences.
It’s probably my least favourite part of having a chronic illness. But let’s face it a lot of it sucks.
Daily life is a struggle.
As I said, I’m really lucky to be able to work full time with my chronic illness, because for so many people that isn’t the case. But daily life is still such a struggle.
Most people around me wouldn’t know that I’m ill, because I don’t like people to know I’m suffering. And I know I’m not alone in that.
If you too are struggling I truly feel your pain, and I really do wish you the best. Chronic illness is hard, and even though it’s not helpful to dwell on that every day, it’s still important to acknowledge.
You are a true hero.
If you liked this one you may also like reading about the symtpoms of chronic fatigue syndrome that are not as well know.