I don't know of anyone who wants any sympathy, especially as many people go through all sorts of illnesses and difficulties in their lives.
What we do all hope for is understanding and empathy. We've gone on for too long without any proper, biological treatment and are often blamed by medical professionals for "not trying hard enough" or "not wanting to get better".
Since the massively flawed PACE trial was debunked we at least now have the proof that CBT and GET do NOT cure ME. ME isn't caused by negative thoughts and nor are we avoiding life. I can't think of anyone in their right mind that would ever choose this way of life. Why on earth would we choose to miss out on any form of normality? Why would we choose to put ourselves through the hell that is the benefits assessment system? Why would we choose to be mis -believed, judged and abused by people who have no understanding of the severity of ME? Why would we choose to miss out on the life that others are happily living?
The only answer is, we wouldn't. NO ONE would choose this illness. It brings with it nothing but misery, suffering and sadness.
ME is a serious, life limiting condition that has a huge amount of symptoms. Every sufferer has their own experiences but many of their symptoms overlap.
The overwhelming symptom of ME is exhaustion and PEM (Post exertional malaise). We are not talking about normal "tiredness" here. We are talking overwhelmingly, bone crushing, all encompassing exhaustion. Even thinking can feel too much. No matter how much sleep we have, we never feel energised and full of life. I personally need at least 10 hours of sleep a night to even function, yet I haven't woken up feeling refreshed for over 15 years now. NOT ONE SINGLE DAY have I had in those 15 years where i've not felt tired or exhausted. It's become my normality.
Living with this level of exhaustion is so tough. It controls absolutely everything I do. I can't even have a bath without considering if I have enough energy to get through it. Every single thing I do, quickly uses up my very small amounts of energy each day. I have a constant battle between wanting to live a normal life and what my body can physically, mentally and emotionally cope with. (Energy is used up just as much by mental tasks and emotions as it is by physical activities).
Inside, I am still the active, determined, capable person who loves to get things done. Sadly my body is too ill to allow me to be who I really am.
I used to swim 40-60 lengths without much effort, now I struggle to even get out of bed most days. I spend a lot of time on a sofa bed, feeling dreadful, dreaming of those days when I could do whatever I felt like doing.
I feel like a prisoner in my own body. I'm trapped inside a body that cannot cope with any exertion of energy, no matter how small.
The symptoms I personally have, on top of that never ending exhaustion, just add to the daily suffering. I'm often dizzy or light headed. Nausea can hit at any time and go on for hours. I'm often in pain somewhere in my body and it can happen at any moment. My digestive system is hugely affected and IBS is another symptom that can creep up at any time and make me feel dreadful.
My cognitive function is hugely affected. I used to be quite a smart person, but most of the time I can't even think of the simplest word. My short term memory is now terrible. I struggle to focus on things for too long and my concentration is poor. It feels like my head is full of cotton wool and so heavy at times that I can't think straight. My temperature control is a complete mess and I am often freezing cold when everyone else is warm or i'm having a hot flush and over heating. My sleep is never refreshing. I desperately miss those days when I woke up from a good night's sleep and felt ready to face the world.
My mental health is also affected. I don't see how anyone could be ill for every single day of their lives for 15 years and not feel intense sadness, loss and frustration. I still don't know how to cope with the all consuming feelings of grief that I have for my health. I am yet to find some sort of acceptance for how my life has turned out. The desperation to get better is overwhelming. I cannot think of anything I want more than to get some health back. A complete cure would feel like a miracle to me, but to be honest, just an improvement so I could live even half a normal life would be amazing.
Anxiety also plagues my life and the more ill I get, the more anxious I get. I can't seem to control the fear when my body feels like it's not coping. The genuine concern that this could go on for many many more years fills me with fear and dread.
Sadly I have got worse as the years have gone past. I used to be able to get out and about more, of course needing lots of rest in between, but still able to enjoy some moments of normality.
Now, everything is a struggle. I fight and fight to grab any moments of life that I can. Music concerts are a big love of mine and I do all I can to get to some each year. The suffering afterwards is intense and I have to prepare as much as I can before hand. Even during the concert, i'm busily coping with the increasing symptoms as each hour passes. I cannot give up on trying to do these things though, as it's those moments in life that keep me going. One day I dread that I won't be able to do them, so all the while I can suffer to do them I will.
The main thing I want healthy people to understand is that when you see someone out and about who has a chronic illness such as ME, you must not assume they are well or doing better. You have no idea what they've done to get out. You must not judge them and think that they can't be telling the truth when they say how ill they are. Most likely they aren't feeling very well but are trying to live life. They may be having a rare better day and not suffering as much as they normally are and they are making the most of that day, as believe me, they'll soon be back to suffering like normal.
You don't see the hours spent in bed or at home, with illness taking over them.
You must also remember that looking well doesn't equate to feeling well. Us chronically ill lot still want to make an effort to look our best. We want to use make up to cover up the dark circles and ill pallor and we want to wear nice clothes and to do our hair. Why should we stop caring about our appearance just to convince others that we are genuinely ill?
So PLEASE when you see someone you know who is chronically ill or see someone who looks "well" parking in a disabled space, take time to think before judging. Don't assume you know more than they do. Don't assume that person is fully well and is just faking it. Just accept that not all illness is immediately obvious and give people the benefit of the doubt. You just don't know what someone is going through inside. Be kind, have empathy.
I'll finish by sharing a few things about life that I most miss. There is a brilliant campaign on social media called #MillionsMissing, that highlights the huge number of people currently missing from normal life. So so many very ill people with ME who are no longer able to live the life they used to.
So inspired by this here is my list of what I miss the most:
-I miss feeling healthy.
-I miss being able to do anything I choose, when I choose to do it.
-I miss going out dancing the night away.