I have ME/CFS, PBC and fibromyalgia, these are all invisible health conditions that have both visible and invisible implications to my day to day life through the symptoms of chronic pain and chronic fatigue. These symptoms both sound pretty innocuous, and saying you’re in pain and tired doesn’t really sound like much, so I’d like to put it into perspective for those of you who don’t suffer from them.
Chronic fatigue. Simply put this is when you feel tired all the time. Everyone can understand that right? Well have you ever felt so drained that you just can’t function? Every movement is too much for your body to do and your brain isn’t functioning properly because you’re just too exhausted? Well imagaine feeling like that….have you got it? Ok,now imagine that that feeling never goes away. Sound unbelievable? Well it is. Some days I can’t lift a kettle or a bottle of water, use cutlery, dress myself or walk very far. These are bad days. Obviously it’s not like that all of the time, but for some people with ME/CFS it is like that all of the time! I’ve had periods of months where it’s been that bad, but others I know have had years and years! Can you imagine that?
Now as chronic fatigue is a sneaky condition it has peaks and troughs. I can go for a couple of days, pushing through the exhaustion and not getting much worse, then it hits me like a freight train and I literally can’t move, can’t function and am so tired I could sleep for weeks and still not feel like myself again. You see sleep doesn’t help with chronic fatigue. Having a lie in after a late night doesn’t make you feel any better, you can’t rest and store up energy to use for a special event, or recouperate afterwards and recharge your batteries it just doesn’t work like that. Plus you never know when you’ve over done it as your body doesn’t tell you straight away, you might be hit by the train a couple of days after an activity when you thought you’d gotten away with it! Fun eh?
Cognitive function is a part of chronic fatigue that I really struggle with as it frustrates me massively. You know when you get to the end of a long day, a tough week, or a few nights of less sleep than usual and you can’t think straight? That’s how I feel all the time. My brain doesn’t function properly anymore. I loose words, I forget what I’m doing, what I’m saying, where I am and where I’m going. I can’t read properly as I can’t understand the words. I can be driving somewhere familiar and go the wrong way, or just completely forget how to get there. I can be talking and forget what I’m talking about. I stand up and have no idea why I did it, what was I going to do? Where was I going? Imagine not being able to reply to messages or emails because you don’t understand, or don’t have the energy to read them and come up with a reply. Imagine that this happens all the time and you miss deadlines, forget to reply to friends, ignore important messages and emails and get into trouble financially, legally or with friends and family because your brain doesn’t function how it used to and you can’t stay on top of things.
So I’m exhausted all the time, day to day tasks are difficult and sleep and rest don’t replenish my energy levels. The other problem is that one day I might be able to lift the kettle, but if I do it too much it’s going to wear me out, so I’ve got to be aware of every single movement every single day to make sure I’m doing the least amount possible to make sure I can do the things that I literally have to do like feed, bathe and generally look after myself. When you have to think about whether to have a wash or make some food you have an idea of what it’s like to live like this everyday.
Now for chronic pain. This is classified as severe pain that lasts for more than 3/6 months depending which country you live in. (It’s 6 months in the U.K.) I take a large amount of pain killers and it’s taken almost 4 years to get my combinations and quantities to a level where I’m not wanting to change them or increase them all the time.
Think about that…being in severe all over, constant pain for over 4 years and taking pain killers which don’t work to a degree where you don’t just want to scream and cry all the time.
The best bit about chronic pain is that the pain killers don’t actually get rid of the pain. Yep you read that right. If you’re lucky and you get the right combo they’ll dull it. That’s the general all over body pain that I experience. The random shooting pains, the oops you’ve overdone it pains and oh no you’ve just moved the wrong way pains aren’t dulled. They still really hurt and this is when you want more tablets, but you won’t get them because the baseline is working. So out comes the TENs machine, on goes the heated blanket and the massage cushion and you hope that the “flare” doesn’t last too long.
My general pain means that doing day to day tasks like lifting a kettle or a bottle of water, using cutlery, dressing myself and walking hurts. Everything hurts. Some things hurt more than others, obvious ones like lifting heavy things hurts more than lighter things, walking on a flat surface is less painful for me than uneven ground or stairs, and exercising is pretty painful. There’s also the less obvious things like holding my phone, certain clothes hurt me and sitting on certain chairs is worse than others. Repeating tasks has the same issues as fatigue, each movement has consequences and I can’t do things over and over during a day, my body gets weaker the more I do (so exercise doesn’t have the same effect on me as it does on most people, lifting weights or going running won’t improve my health over time, in fact it’ll make me worse). I do some stretches that my physio has recommended and it helps to ease the stiffness in my muscles and keep things moving which is vital, but actual, proper exercise just has a negative affect on me.
So you might now have an idea of what chronic fatigue and chronic pain feel like, so now add them together. Can you imagaine being so drained all the time and in constant pain all over your body for years and years?
They both make each other worse as pain leads to fatigue and fatigue can lead to pain, so my body is a constant battle ground with my mind telling me to keep going, keep moving, keep pushing through, and my body screaming at the top of its lungs “NO!!!! STOP!!!!”
Imagine living every single day of your life like this….but you look fine!
It’s not fun having to go to bed early (8pm) because I have to stick to my sleep routine or it knocks me out for weeks or even months, yes even one late night can do this. It’s not fun having to have a very structured life to manage energy and pain levels. I’d like to be spontaneous but my body can’t cope with it. I need to know exactly how far away everything is so that I can figure out if I can manage to walk that far in a day taking into account everything else that I’m doing. I have to ask for help because I just can’t do some things for myself anymore and sometimes I have to ask for help because if I do it myself I won’t have enough energy to do the other things that I need to do that day, that’s week or that month. Yep that’s how much I plan. That’s how much I have to plan in order to function, and thinking and planning all the time is exhausting in itself!
Can you imagine living like that?