Roughly two years ago and in the midst of an incredibly stressful period at work Amy developed a 'mild upper respiratory infection', but simultaneously and worryingly she suddenly found it nearly impossible to get out of bed. We were blissfully ignorant back then, but our old life disappeared that day; unbeknown to us we were in for a period of abrupt adjustment - in every aspect of our lives.
Amy was lucky, understanding is often still poor, but her GP decided to refer her to a specialist clinic. She got her diagnosis of ME in late January 2017, one year after the onset of symptoms. She is now receiving quality care that is based on wholesale lifestyle changes in order to manage her symptoms. To date there is no cure.
What I know.
As an observer-participant, I can say with certainty that ME is not depression; neither is it laziness, nor something that can be 'snapped out of' or 'pulled together' and it is definitely not just tiredness. For as long as I have known Amy, she has been the most credible person I have ever met. I catch her quietly gripped by pain sometimes. I find her trying to prop her head up when it feels "too heavy" to hold up. I see her tears when she glimpses images of her old self doing the things that she would love to do again. I have no idea how lone sufferers survive this, much less so those who aren't believed.
A rough guide to Amy's symptom experience:
- Fatigue: One that sleep cannot satisfy. Sometimes debilitating. Never completely goes away.
- Pain: Muscles, joints, can feel like a burning viscous liquid in multiple/all major joints. Also debilitating at times. Common.
- Headaches, often severe.
- Sore throat and flu like symptoms.
- Brain fog.
- Difficulty sleeping.
- Food intolerance: [not a dieting fad] gluten, lactose, alcohol. Needs to avoid unrefined sugars. These are guaranteed to have a negative effect.
- Sensitivity to light (occasional).
- Changes to taste and smell (rare).
- Intolerance to temperature changes (occasional).
- The list is not exhaustive.
Post exertional malaise.
illness within an illness
In very simple terms: Any form of exertion either physical or mental can trigger a worsening of symptoms afterwards. There can be a delay of one to two days between exertion and symptom severity increase. Exertion to a sufferer might be as little as cleaning teeth or reading a few pages of a book. The duration of PEM can be hours, days, weeks or even months.
...But you can't see it
Some days Amy can make it into town. If she overdoes the short trip she can end up in bed for days with worsened symptoms. Old friends sometimes stop to natter - I expect they believe all is well. It is hard for her to explain when she needs to leave.
If you know someone
Without a diagnosis I dread to think how we would have explained our social unpredictability to our friends and family; thankfully all of ours have been fantastic. Other sufferers are not so lucky.
If you know someone who has ME please be patient with them, I cannot list the difficulties here. This is a first person overview of living with a sufferer and a simplistic version at that. If you love someone with ME, then love them enough to do some further reading. The button below might be a good place to start. I read: "Fighting Fatigue" by Catherine Berry and Sue Pemberton.
The title image was taken during a period of PEM summer 2018. Amy's crew cut hairstyle is to avoid PEM related to hair maintenance. All pictures are ours and an accurate portrayal at the time of the event. Amy sometimes has 'better' days and we enjoy them as best we can. She always needs more rest than me and often can't engage in much, she is still my best mate and her personality hasn't changed. My wife isn't tired, she is ill.
I love her completely.