For most, this is the most troubling of questions we get asked or ask ourselves. Will I ever get better? What is ‘better’ and ‘normal’ for me now? You can easily torture yourself with the unanswered questions that you have no idea if they will ever be answered.

With my condition, the general consensus is that if you have had ME/CFS for two years your odds for ‘full recovery’ take a nosedive. I am nearing a decade which I think I read somewhere gave me less than 2% of recovery. I cannot remember where I read this or how accurate the statistics are but I don’t think I will be back to an ordinary ‘normal’ life. Ever.

You might be wondering why the heck I’m quite calmly talking about recovery in a negative manner. It’s because I used to obsess and worry about the lost time in my lifetime lying on a bed or sofa. I used to take an inventory of how many opportunities or events in life I had missed.
I got fed up making plans and having a bucket list that, like most of the globe was inaccessible to me and my capabilities now.

I decided to start trying to live for now rather than when everything was ‘better’. We all know that life is fleeting and short-lived. Literally. Why not try to make the most of life now? I can’t go scuba diving in the Caribbean right now, but I can go to the zoo with all my family. My bucket list still has the unobtainable on it but most of it has been broken down into more manageable chunks.

As always, I’m not making light of the fact sometimes I break. My heart is broken for the lost dreams, plans and choices that are no longer mine. I break for the sadness I have surrounding all the big times in my life. I break for the basic tasks I cannot do. I break with grief and frustration of being completely powerless in this life that doesn’t feel like mine.

I know it is the most horrible uncertainty to live not knowing whether you may have improved, stayed the same or got worse when you try to make plans and sometimes you will have to cancel, but isn’t it better to try?

Do the things you find important and embrace the slices of life we have left. If you want to travel from your bed why not try VR? Escape into books that give you insights to so many corners of the world.

Do what makes your heart happy and gives you memories to warm you in times of darkness. Embrace life even if it’s just by holding onto it with your pinky finger. I can’t help you answer your way of dealing with not knowing if you will ever lead a normal life but I can try to show you how I try to let life in.