Me and M.E
(Living with M.E. from a carer’s perspective, written by Mrs M.E)
I’m married to a wonderful man. He is smart, sensitive, generous, supportive, tender, kind…he’s a great guy. However, he has one pretty big flaw, and that is he is chronically ill. My husband has suffered from ME for the past 6 years. I’ve never known him ‘well’. His suffering is chronic. He is in pain every day. His illness affects every aspect of his life from big issues like where should we live, to smaller ones like how far can he walk on a given day. We have to plan everything around his ME. We don’t book a visit with friends or a pick up from school without first considering the impact this will have on his energy levels and his health. Often he needs rest for several days before an engagement, and then more rest for several days, or even weeks, following one. Holidays are not rest times for him but things he needs rest from once he gets home again. Just visiting our own families and closest of friends, who are fully aware of his condition can be so damaging to his energy levels that he suffers many days following. Stress, poor diet, eating too little, eating too much, going for a walk, being in crowded places, loud music, alcohol, irritation, worry, emotional upset are just some of the things that trigger him and make his symptoms worse.
What is ME like for me?
My husband is my best friend, my life partner, my soul mate. But he wasn’t strictly a ‘single man’ when we met because he and ME came as a package. This is a pretty big challenge for me because ME is not my friend. ME is the parasite we live with. It is the squatter, the thief, the needy toddler, the unwanted stalker that is resident in our lives. ME is our constant, unwanted companion. We don’t know if ME will ever move out. We never know what time it will show up, how strongly it’s presence will be felt from day to day or what havoc it might wreak as a nasty surprise. In short ME is the most gigantic pain in the ass, the worst neighbour, the most challenging infant, the untrainable pet, and it’s one I wouldn’t wish to move in with anyone.
Yet, despite all this, I am happy. I am seriously, blissfully, annoyingly happy. I have a great life. I have the partner I had always dreamed of. I have an awesome son, I have a fulfilling life beyond my home. I am and have these things because, in a way, love conquers ME. Love motivates me to understand ME and how it affects my husband. Love gives me patience with ME’s unruliness and unpredictability. Love helps me tolerate ME and it’s ever-presence.
ME hasn’t snatched my husband away. He is still there, bobbing up and down in a choppy ocean of ill / good health, sometimes sinking under the surface but on good days rising up above the crest of the waves again. ME is a thief but it is also a gift, and I don’t say this glibly. It’s a gift of compassion towards others who suffer (any and all illness and disability) and a gift of knowing oneself really, really well during testing times. ME is a squatter but it’s also a life raft. As misunderstood as this condition is, ME IS a diagnosis and that is a raft upon which to rest the symptoms and the suffering, and a point of reference to reflect on how far we’ve come in understanding and treatment (even if that’s no distance at all, it tells us where we need to go). ME is a stalker but it is also the stalked, as we observe it, share our experiences with others, bring ME out into the light and shine brightly upon it in the hope that if enough of us to do this then we will have been even a tiny part of a movement that will see us move ever closer to successful treatment, perhaps a cure, and definitely better societal understanding and cultural adjustments for those who suffer similar chronic conditions, that are often unpredictable and inconsistent.
So on those occasions when I hate ME, when I curse it, when I cry for my husband’s suffering, when I desperately try to wish it all away, I remember that we are not alone. We are living the same and yet different experiences of hundreds of thousands of other people in the U.K. right now. We are, if we choose to be, the forebearers of the end of ME. For that alone I choose to accept ME in my life and the lives of my family, in the life of the man I love knowing that together we can overcome.