How am I you ask? Fucking tired. Scratch that, I am fucking exhausted. All the time. Every single day.
When I tell you I’m tired (which I can almost guarantee I will; multiple times) I do not mean I am tired because I had a big night or didn’t sleep well last night. When I tell you I am tired, what I actually mean is I am chronically fatigued. Chronic fatigue is not the same as being tired, not even close. I would trade my fatigue for your tiredness anyday. I find it really hard to explain what it’s like to live with chronic fatigue but I’m going to give it a go.
Firstly, it is constant. No matter how much I sleep, what foods I eat or how many coffees I drink – it is always there. Some days I can take more than seven naps and still feel like I haven’t slept in a week. I can easily sleep more than 18 hours in a day and still struggle to stay awake. You could say I’m like an old iPhone. The battery is so old that even on 100% it only lasts a few hours. Some apps can kill the battery in just a few minutes. No matter what you do, you can’t get as much out of it as you used to.
I no longer sleep to boost my energy – I sleep because sometimes it’s literally all I can do. I wake up tired, live my day tired and go to bed tired every single day.
Some days I get these little ‘energy boosts’ and I’ll get up and be like ‘ok great, let’s get shit done.’ I’ll use this to vacuum my room for about 10 minutes before needing to recover with a nap or five. If I’ve got plans that involve leaving the house – I can literally use my whole day’s energy in just getting dressed and putting on a tiny bit of makeup. This is why I SUCK at plans. I never know how much energy I will have the next day and what plans I can handle. So I am really sorry if I cancel on you last minute or just say no to advance plans because I am scared I will have to cancel anyway.
I laughed at myself today when my friend asked me how my day was and I said ‘It was massive. I’m so exhausted.’ She was like ‘Oh wow, what did you do?’
Two loads of washing. That’s it. Nothing else. I didn’t even have to make myself food that day. Washing was literally all I did. Some days I can’t even handle that. Some days I have to force myself to walk from my bed to the toilet or the fridge (both of which are within about 3 metres of my bed). If that doesn’t explain my energy levels I don’t know what does.
Have you ever heard of the ‘spoon theory’? It basically explains fatigue by saying that people who suffer from chronic fatigue have a certain amount of ‘spoons’ that represent their energy levels to use each day. Some days we have 10 spoons, other days we have one or two. We have to choose wisely how to use our spoons because once we’re out, that’s it – we have no backup. Depending on the severity of your condition (or how bad a day you’re having) a ‘spoon’ can be anything from doing a grocery shop to brushing your hair. Most days I have to factor in having a shower as a ‘spoon’ and make sacrifices in my day to conserve a spoon to take a shower. Can you imagine getting to a point in your life where you have to say ‘Oh, I better not walk to the other side of the house and back or else I won’t be able to take a shower later.’ I can’t even stand in the shower long enough to shave my legs any more. I’d love to say my long legs are a contributing factor to the exhaustion but I am five foot tall and my legs are probably the same length as your average toddler’s. I can’t even shower before going out anymore because if I did – I wouldn’t be able to go. For me, a shower has to be basically the last thing I do in a day because it absolutely wears me out.
My fatigue feels as though my whole body is constantly weighted towards the ground. I don’t have the energy to even hold my own weight and I am constantly dragging myself from A to B. I can feel the weight of every limb, each finger and every hair on my head. I suppose it’s hard to explain my fatigue because some of my other symptoms overlap; like my muscle weakness. On days that I am super fatigued – I’m talking running on one or two spoons – my muscles are so weak I can hardly walk or pick anything up. If I push my muscles to the point of exhaustion (which doesn’t take much at all) they shake uncontrollably, go completely numb or get glass shattering pins and needles.
So basically, chronic fatigue sucks. It controls my whole life. No, I don’t nap for fun (anymore), I nap out of necessity, I nap because it’s the only thing I can do. Would I rather work a shitty job for 12 hours a day or study all day? Hell yes. Don’t tell me I’m lucky because I get to watch Netflix and nap all day – because when that’s all you can manage, it’s not fucking fun. I would do anything to be able to handle my work and study load again, hell I’d rather work for free than be in this position. My life is not easy, my life is not fun and my life is certainly not lazy. Feeling like I’ve ran a marathon after a short shower or like I’ve been run over by a truck after hanging out a load of washing is not an easy life, it’s damn hard. But I still do it every day. Somehow I still manage.
I am proud of myself, because I can now praise my body for still achieving small goals. If climbing a stair case feels as hard as climbing Mount Everest – why shouldn’t I praise my body for doing that? If grocery shopping feels like running a marathon, shouldn’t I be happy my body can achieve that? I’ve learnt to accept my body’s limits and be thankful that I can still achieve goals – no matter how small they are.