CFS/ME: "Oh Yeah, I'm tired too.....

A response I often get when I share that I am ME diagnosed, which I don't for the record do lightly or to just anyone is "oh shame, isn't that the tired thing? oh yeah, I get that, I'm tired too" or "you look too happy/healthy/energetic to have that" usually followed on by "what's it like, how does it affect you?" "what exactly is it?" and very often "but you're one of the lucky ones right!?" - all perfectly reasonable and I am not knocking anyone who has ever said any of these to me. You are trying to understand and hand on heart I truly appreciate that BUT you need to also understand that I nor many of my contemporaries don't divulge the half of what goes on with our health and struggles both physical and mental and so while it may seem and yes I do agree to an extent that I may very well be 'lucky' and yes, compared to anyone who is house or bed bound or struggling in other ways I guess at the end of the day, you're right, I am. That said, most people have absolutely no comprehension of my soul destroying often daily battles just to appear normal, to stand upright and sometimes just to breathe and be.

I guess the misconception comes from the fact that you see me and I smile, I always smile,

my smile is my war paint.. Hi how are you, good ta....you? Oh, I'm Fine - only 7 times out of 10 I'm probably not really fine at all but I'm too proud to tell you, I'm embarrassed to tell you. I feel like, as would be the case with most illnesses I would be and should be better by now, It feels like you've heard it before, that there are people worse off than me, that both you and I are sick of hearing me whine about it but at the end of the day such is the nature of this beast, it is indeed a "Chronic Illness", the clue is in the name:

CHRONIC/ˈkrɒnɪk/adjective

* (of an illness) persisting for a long time or constantly recurring.

"chronic bronchitis"

Similar: persistent; long-standing; long-term; constantly recurring; incurable; immedicable. Opposite: acute

The embarrassment comes in many forms and may I add for many reasons, some logical, well they seem to be to me anyway others maybe not so much. I may have had a brilliant few days, weeks, months even, so when you last saw me hell yeah I was on top of the world, looking good sista, yeah that was me out with the girls partying and living my best life and my didn't we have a good time, there I was fighting those demons and grabbing life with both hands. Then comes the bit in the shadows which I/we don't share, the bits you don't see are the following days spent on the sofa recovering for attempting or even daring to be 'normal' for a few precious hours - then it hits; feeling low, exhausted and aching - and by recovering I don't mean from a hangover, alcohol intolerance usually kicks in long before I can even drink enough for that to even be an issue anymore. Nor do I mean your usual tired from a late night or laughing with friends. I will try to explain, to put it into words but herein lies another embarrassment, as intense the emotions I feel are and as deeply as it affects me I often can't even find the right words to begin to explain so you can grasp just a glimpse of how bad a crash or dip can feel. Payback or as we like to call it in the trade 'PME' - post malaise exertion and believe me it doesn't have to be a mad night out to bring this on either, one chore too many, slightly too far on the dog walk, lunch or sometimes even just a coffee with a friend = socializing = energy used = exhaustion/crash/slump whatever you want to call it. Shopping...work...on bad days even a bloody shower are a no no. Have you ever been stuck in quicksand up to the neck but had to carry on regardless, walked through jelly whilst trying to juggle your day and complete simple chores - no me neither but that's as close as I can come to showing your minds eye the extra energy needed just to get through the day. Add to that heaviness an ache in your limbs and a tiredness that no amount of sleep can refresh, dizziness, nausea, headaches, a chest that feels compressed in a vice and a mind that feels so deprived of oxygen it can't even function properly. Words don't come, conversations are lost half way through - names, faces, facts all just that little bit further out of reach making you work a little harder to reach them which in turn just adds to the mental lethargy. Another popular way of explaining the whole limited daily energy is the spoon theory, follow this link or copy and paste in your search bar if you're interested in learning more on this - https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#1

"But, but hang on you work full time?" Yes, I do that's because I have to, because it's what I was brought up to do, because I goddam want to. "But if you were as bad as you say you are surely you wouldn't be able to?" In a word - balance, I have given up having any other life for the most part in order to work. I work during the week and I sit and rest ALL weekend, EVERY evening and even on my Wednesdays off - this is the only way I can pace myself. Sometimes it works perfectly, others it doesn't. I potter with housework, dog walking and gardening as and when I can, mostly though I sit. Ha, she must be lying right, you've seen the photos on social media, the holidays, the adventures - Yup, sure I live when I can and make no apologies for it, wouldn't you? Unfortunately though I cannot foresee or forward plan the good days or weeks but sometimes I'm blessed and when they come at the right time whether I'm at home or on holiday I live like there's no tomorrow knowing it will be to my detriment because I don't know when it will feel that way again and just like the nights out I allow you to see, the good times are fun but not the aftermath when the crash kicks in because of those moments.

I worry though, I'll be honest with you those what ifs play on my mind - what if this is the last time I get to do this, what if the bad days take over again and I find myself housebound like before only this time there may not be a get out of jail card and this is it, this is me, what if I can no longer work, socialize and live a life worth living. The contradiction from day to day takes it toll on the mind and plays with you're sanity - it toys with you "today you can do the thing but tomorrow you pay mwahaha.....or will you, hmm not this time but maybe next time" - absolutely no sense to it, no consistency or patterns to avoid what's right today might not be tomorrow. You get so so tired, then low, then anxious and before you know it your also fighting against your own bitter tired mind.

When I was first diagnosed back in 2016 I was at my worst, awake 24 hours on a regular basis, too anxious to see friends, no energy to adult let alone work - despite enrolling on a professional therapy course and support group on how to live with the condition there were

days on end when I could not move from the sofa and the black dog set in. So yes, in a way I guess you can say I've been lucky to get to where I am today even though I

have absolutely no idea what brought me here apart from at time's sheer grit, stubbornness my mother said would get me in trouble one day and dragging the hope back out of the abyss - sounds dramatic but that's how it feels. There are ME warriors out there who lie horizontal all day as they simply cannot get up, they cannot even bear the light being turned on because it physically hurts, they need help to feed themselves - it sounds too simplified and actually quite insulting to say they haven't got the energy...it is just so so much more than that. So for this I feel the need to apologies, I often complain when I should be grateful, I cry and despair when I know full well I am "one of the lucky ones". But don't be fooled or judge anyone by what you see, everyone's own personal battle is respective and relevant at the end of the day #bekindalways