To Those With ME/CFS Who Feel Like Giving Up

I’m talking to you, yes you. The person lying there in the dark. The person struggling with unbearable fatigue and pain. The person who feels like giving up.

I’m talking to you (actually I’m whispering because I know noise hurts your head). And I’m telling you: Don’t give up. Not just yet.

I know what it’s like to be you. To be so ill, you’re hardly aware of anything beyond the pain in your body. And to feel like there’s no point continuing to fight. Because, it’ll always be like this, right? Things will never get any better?

Wrong.

I know this because I’ve been there. And now I’m here. I’m not saying I’m better (far from it). And I’m not saying it’s been an easy journey this far. There’s no point in lying to you – you know this illness, you’d see straight through my falsehoods.

 

But I am saying that things can get better than they are. The symptoms will ease and you will get some enjoyment from life.

At the start of my illness, I couldn’t watch any television. At all. And now, I watch 20 minutes a day. I’m not going to tell you how long it’s taken, that’s not important. What is important is that for 20 minutes each evening, I can cuddle on the sofa with my husband and watch TV. Not only watch it but enjoy it.

I spent many years not being able to get outside. Not even to my garden. The best fresh air I could get was hanging my nose out of the window, when I had the strength. Now I sit outside for five to 10 minutes twice a day. Do you know how amazing it felt to get sun on my face for the first time? Indescribable bliss. That’s something worth waiting for, right? And it will happen.

Several years ago, I remember saying to my mum in a sad voice, “I miss shopping with you so much.”

“We will shop together again one day,” she replied.

I didn’t believe her. I didn’t have the slightest bit of faith in her statement.

And do you know what my mum and I did this year? We went shopping. Just a tiny trip, for 20 minutes in a wheelchair (me, not her, obviously) to a local gift shop. It felt utterly fabulous. And her words came back to me then. I had honestly not believed such a thing would ever be possible for me. But it was. And it is.

Don’t get me wrong, life’s far from a chocolate sundae. I still spend much of the day resting in bed. I still have horribly ill hours, horribly ill weeks. But the times when I feel like giving up on life are now few and far between. Because I have things in my life that are worth living for. I have a dog, I’m writing (yay!) and I can have a friend (or two) visit once a fortnight.

I know you miss the old you. I know you miss your spark. But very gradually, a new you will grow; a new you which will be a hybrid of old you and new. Whatever level of this illness you’re at, the symptoms will slowly ease and silver linings in your life will start to shine.

So don’t give up. Not just yet. I know you feel alone. But you’re not. There are so many of us out here who understand what you’re going through. So keep fighting. Please. We’ll be with you every step of the way. It might be slow, oh so slow. But you will find your place in life again, I promise. So keep resting, keep pacing and hang in there.

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Thinkstock photo via Monkey Business Images.