Today I walked 20km for Joel Langton

What was your life like before you first fell ill with ME/CFS/FM?

Full and fulfilling. I worked hard doing a job I loved with people I enjoyed being around. I was young and fit and healthy and I enjoyed life – nothing was beyond me and I had lots of plans and I was carrying them out.

What do you miss the most since having ME/CFS/FM

I miss the feeling of full lungs while running, enjoying a cool beer with friends on a summers day, being able to access my intellect, being able to leave my house for a meaningless stroll. I miss playing with my daughter and seeing family and friends. Most of all, I suppose I miss that feeling of peace that I didn’t realise was even there before; you only notice it by it’s absence once it disappears. I would give anything just to be able to sit there and not have symptoms bombarding me non-stop, that would be pretty special.

Describe your worst day with ME/CFS/FM

My worst day comes too often. I get through it by remembering my best day, which is usually just a few seconds of “almost peace” that comes out of the blue once or twice since I got ill. These seconds remind me, briefly, of what it feels like to be normal, and if I tell myself I will experience this again, even if only briefly, then that can help me get through my worse days. Worst days tend to merge into weeks, months, sometimes years and time sort of loses its meaning. The experience is intolerable, you don’t survive it intact but feel your essence of “self” dissolving away, and you don’t get it back, you simply keep going because some still remains somehow.

Describe your best day with ME/CFS/FM

Apart from those moments I describe, which are bitter-sweet because they are so fleeting and then you miss them, my good days are not measured by symptoms but rather by small victories in other ways. A piece of research that might actually lead to recognition and treatment, hearing that someone is praying for you and cares deeply that you are still sick, the exposure of the bad quality “science” that has plagued the disease and negatively impacted on patients, the visit of a true friend. Small and infrequent things that happen despite the disease.

Describe your typical day with ME/CFS/FM

Empty. Every day is about survival. I am mostly housebound and it’s about making it through another day in the waiting room for research to find a treatment that gets you part of your life back. I wake up and spend my day waiting to get to bed time so I can go to sleep and although I wont sleep well at all, have the hope that tomorrow is a better day somehow. I want to do so many things, but can do so few.

What would you *most* like the world to know about living with ME/CFS/FM

It is unfathomably bad, much worse than it looks or you can imagine. If you experienced it for one day you would never be the same again, it would become your priority even if it disappeared as quickly as it came. The world needs to take action and it can. This disease has had far less science done on it than any other comparable disease, the answers are just waiting to be found and probably aren’t all that hard to discover, it just needs appropriate funding and young researchers to bring their ideas and enthusiasm to the table. If that happened I would be the last generation to suffer this. If not then it will happen to our children and no one is immune, it is purely luck who gets it.

Anything else you would like to share?