“I helped my 10 year old son to the bathroom as the crippling pain rippled through his leaded body. His lips were dry and cracked even though he had drank an ocean of water that day. His complexion had that grey alabaster look, with those deep panda markings that have become my nemesis.

As I helped him back to his room, he explains how embarrassed he feels about it all and I gently chastise him that things could be a lot worse. I quickly think of some comic element to lighten the load, and tell him of anecdotes of times I have helped his big brother and sister out. We have to take every movement real slow as he is dizzy and feeling sick. He sits at the end of the bed while I arrange the special pillow so that his head is elevated, and his sore neck is supported. I put eardrops in, to sooth his sore ears and Olbas Oil to clear his congested sinuses. There is nothing I have found that will help with his sore throat.

He would normally ask me to leave, but he is too weak and in too much pain to do so. I lay next to my son until the temperature in his legs has warmed. His body rigid with pain, I try not to think of the future because no one can say what will happen to my 10 year old son. There has been very little research done on the pathway of this disease, even though 25,000 children suffer in this way every day in England.

He has not been to school for months and he is desperately missing every aspect of life. He is jailed in our home by a dysfunctional body, crippled by M.E. Disbelieved by most medical staff not taught how to treat this long standing illness and portrayed as malingerer by politicians, with the threat of the Education Services and Social Services never very far away from my thoughts. This worry stagnates my concerns into despair. As a mother you are blamed from every angle, even by your own self. I haven’t slept properly for a couple of years now, and everyone keeps telling me to look after myself, but how do you do that, when you don’t feel safe and uncertain about the future? Which part of my life is on solid ground?

I try not to think back to the life we had, the fun of movement the joy of being a family so rudely taken from us. Just to jump in the car and go visit, have friends and family around, have a life. I have to pull from the here and now to gain the strength to make a buoyant life. There are many people out there with all sorts of illnesses and disabilities. I turn on the shower and cry it out.

I dress before he wakes and organise a day where he does not have to think. I worry about which foods his tummy will accept. I don’t put on the perfume I love to wear or deodorant because this will set off the migraine like headache, which will add to his already painful head. I cut out the Christmas decorations in the hope he will feel well enough to help. If not, I will quietly get on with it while we watch a film. I will pick a film we have seen a thousand times before, because this is all he will be able to do today. Watching a well viewed film is classed as an activity, unbelievable isn’t it?

He wants to go shopping and we have a month before Christmas. He wants to buy me two presents at the shops. Apparently I’m worth two! We have looked on line but he is determined to go out and he has even relented to using a wheelchair. We don’t have a blue badge to make our lives easier which is a shame, but we will manage. In my mind I think of taking him to eat somewhere special, of the music they put on for Christmas, the decorations, the lights, and life. For just a little while we could live. The payback of Post Exertional Malaise will be worth it? Wish us luck x”

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There is a section on paediatric myalgic encephalomyelitis in the International Consensus Primer for Medical Practitioners. Hard copies are available from Invest in ME charity as official UK distributors and it may be read online here – http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

About Let’s Do It for ME Movember Awareness of men’s health – https://ldifme.org/nomenbar-for-m-e/