Whenever people ask me how I’m doing, my go to response has always been ‘I’m okay, I’m just tired’.
It’s not because I don’t want them to know how I’m really feeling, I’d love to be able to talk more about it, that’s why I have this blog. It’s because it is easier to say this than constantly have to talk about my illness and how it’s taken over my life. Most days it’s all I think about. I don’t want it to be all I talk about as well.
There’s a lot going on behind those words – ‘just tired’. With ME it is never a case of being JUST tired. There is so much more to it than that. More than I can fit into one blog post, but I’ll try my best.
As this week is ME awareness week, I’ve decided to share more of an insight into the ‘tiredness’ that comes with the condition, and what it’s like to carry that around with you every day.
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It is more than being ‘just tired’
To start off, ME is more than being ‘just tired’. Tired isn’t even a word I’d use to describe what I feel every day. Tired is like having a long day, and needing an early night, then waking up the next day feeling refreshed.
ME is on a while other planet to tired.
It is heavy
The fatigue you feel with ME is like a huge weight resting on your entire body. To even just move takes a lot of effort – and uses up more of your precious energy.
Sometimes I just have to sit there, not moving, trying to be a small as possible, while the weight rests on me and brings me down. I can feel myself being crushed under it all, along with all my hopes and dreams.
When I do move, because sometimes it’s not practical to sit still and do nothing (I’ve got to eat, and go to the bathroom at least), it’s like I’m watching myself move in slow motion. Everything becomes slow, even when the world around me is moving quickly.
I walk a bit like a zombie, finding it hard to lift my feet properly. Sometimes I lose balance because my body struggles to hold me up under the weight of the fatigue.
It is mentally draining
The brain fog that comes with any chronic illness is no joke – although it is sometimes easier to laugh at it all.
I am not a stupid person, but the fatigue makes me feel VERY stupid. I’ve forgotten how to use cutlery, struggled to put on sunglasses, forgotten the name of a main character of a TV show I was just watching.
It’s humiliating the things tht happen because of how mentally drained I can get. I can find it hard to string sentences together, or walk into things because there’s too much going on around me to notice what’s going on in front of me. I’ve forgotten the names of my best friends in the middle of a conversations. It’s hard not be at least a little embarassed.
I feel like I’m living in thick fog, disconnected from everything around me. I try to claw my way through it but that just makes it worse. All I can do is wait in the fog until it passes, and I can see again for however long it is before it returns again.
It is aches and pains
It’s hard to remember a time when my body didn’t ache. Any amount of activity can cause it, and there’s no way to avoid it.
I, for some reason, decided to write this post out on paper before typing it. Probably not my best decision. By the end of the first sentence, my arm was aching. I powered through anyway, which was also a mistake, but something that simple made my arm ache. And I mean ache (it was still sore the next day).
The ache of the fatige can come from the most simple things. If I’m reading, it’s not long before my arms ache from holding the book up. I can walk for about 10 minutes before my legs start to burn the way they would before when I used the leg press at the gym (I used to be able to do strength training).
Grating cheese, brushing my hair, cleaning my teeth, standing up, getting dressed or undressed, picking thing up or holding things for a length of time, the list of things that takes a toll on my body is endless.
I’ve even had days where I’m so tired that the skin on my hands hurt and ache. Not something I thought was even possible to experience. I know I’m really ‘tired’ when my hands and fingers ache.
Some people aren’t as fortunate as me either. My ME is considered mild, there are people with severe ME who struggle to stand or walk any distace. It’s painful for them to even move.
It is pure exhaustion
Exhausted is a much better word for it than tired, I think it comes closer to what it actually feels like.
It’s like when you come home at the end of an insane week, where you’ve been so busy you’ve barely had the time to stop and think. Your brain feels disjointed, the air your breathing doesn’t feel like it’s getting to the parts of your body that really need it, and you just need a break.
The only problem is, the feeling isn’t alleviated with rest. You wake up the next day still feeling just as exhausted, and you haven’t actually had the busy week in the first place. The exhaustion and fatigue is just there.
I feel like I could sleep for an entire year and still wake up feeling just as exhausted as I am now. It’s a bit of an exaggeration, but that’s what it’s like living with an illness like this.
I sleep when I need to, there are days when I can barely keep my eyes open and I need a nap. It doesn’t rid me of that exhaustion but it is a much better alternative to trying to stay awake and making things worse.
I’m not ‘just tired’
I’d love to be free of this exhaustion, and perhaps one day I will be. I do know people have recovered from ME, so I know it’s possible for some. But if I spend all of my time thinking and talking about how truly crap it is to live with I wouldn’t be able to get out of bed in the morning.
So, I’ll stick with my ‘I’m fine, I’m just tired’, and hope that maybe one day I’ll be free.
I know I have spoken in the first person A LOT in this post, because these are my personal experiences with CFS/ME. But there are SO MANY people in our country and around the world struggling with the same things.
Research is limited, there is no real treatment and no cure. When you’re diagnosed with this illness you know there is most likely no way out.
ME awareness week 2020: 11th-17th May 2020. Go blue for ME.