For me this is hard. Putting down in words how I feel for others to read, when I spend so much of my life trying to hide my feelings because of what others will say.
‘So how bad is CFS, isn’t it just tiredness?’ ‘I’m really tired too!’ ‘Maybe you’re just under the weather’ These are just a few of the things people have said to me. I’ve even had, ‘Are you not just tired because you’re a mum and busy?’ To be fair these comments all imply tiredness is the main issue, but to live with the reality of ME/CFS is so much more.
I’m learning to use the word ‘fatigue’ as tiredness doesn’t leave you collapsing on the floor and crying like a baby. Feeling like I’m at my limit and being unable to comprehend just how exhausted a person can be.
Fatigue is giving every ounce of energy to playing with your beautiful girls, knowing that the rest of the day you’ll be exhausted and need a nap to get through.
Then feeling conflicted by the joy of watching them play with others, but sad and guilty at not being able to give them that same amount of energy and enthusiasm.
Battling with the emotions of wondering how I can continue a life like this but wanting to as I love life and didn’t ask for this illness.
Why don’t I talk more to others, let them know how I feel? Maybe because I don’t think they’ll understand. Probably because to spend even a day with me would leave you clueless. Plus, I get comments like ‘you seem alright to me’.
I’m not sure if people want to see the tears as evidence of how this affects me or pictures of me at rock bottom. Unless I create a tattoo of ME/CFS there is no way for them to see this invisible illness.
Unlike some who are worse affected than me, I live a relatively normal life. Sure, I don’t know how I get out of bed some days. I cry when I get off meetings online as it hurts just to concentrate. I cry in the toilet at work then wipe my tears and get on with the day. I count down the minutes to getting home and flaking out, but still push myself when I get there as I want time with my girls. I nap to get through the day, stock up on paracetamol for the headaches, and crash out on the sofa whenever I can.
But I do get out of bed, I do get to go out with friends and go on holidays. So, what am I moaning about? That those luxuries have become just that, luxuries that now come at an cost to my health. You may see me laughing on a night out, dancing, acting like everyone else. What you don’t see is the planning that comes with it or the after effects from it.
The question of whether to go, what day it is and what time to stay out as it will affect the rest of the week. Or the week after when I struggle to get through each day. The fatigue that kicks in, the headaches, the aching legs, the depression, and the constant question ‘why and how can I continue to carry on like this?’.
The guilt at telling my girls that mummy needs a lie down, it’s a bad day. The guilt as my poor husband has to watch me cry again and listen to me constantly say ‘I’m so tired’ over and over again. The texts sent to friends explaining I’ll speak to them another time as I’m too tired to talk. The moodiness as I’ve pushed myself to the limit but must carry on as ‘life’ won’t pause and enable me to take a break. A woman my age, should not be crying this much!
Typing today feels strange as it’s not too bad a day. Again, I say not too bad a day, as I don’t remember the last time I felt normal. Sounds cliché but it’s true.
My good day is still a bad day for a healthy person. I can’t remember how it feels to wake up refreshed, full of energy and enthusiasm. My life is consumed with the word that always stays with me ‘tired’. I have heard others say, ‘It’s like watching the old you disappear’, and it’s so true. It hurts, it hurts bad.
I try to stay positive because I am blessed, blessed with beautiful twin girls, a husband who I can call my best friend, the most supportive parents and sister in the world. I have hope that things can change, even though at times it feels like that hope is in short supply, it is still there.
Every single day is a battle and make no mistake I don’t use that word lightly. I struggle, I really do, but to get through each day is a battle won and I can at least take some comfort in that.
Guest blog from a person with ME/CFS
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Image credit: 123RF/bialasiewicz