When ME Symptoms Flare

 Living through a ME Flare of symptoms 

People have different names for it, the time when the Post Exertional Malaise (PEM) just gets worse and worse, to the point that you just have to stop and rest.

In fact many only refer to a relapse of symptoms when the crash or flare has been going on for a period of time.

You may be wondering why, when I have been writing about pacing and working within my symptoms, do I need to write about when pacing isn’t enough?

Sadly for those of us with ME, pacing isn’t always enough. And symptoms sometimes rear their ugly head, regardless of any mechanism that we might put in place to prevent it. 

I find myself in just this situation this week. And it’s hard.

When you are floored by symptoms so severe that all you can do is rest and sleep. Life has to go on hold, because you have to allow yourself to recover, but also because you are incapable of doing much else.

People sometimes describe that you know you’re really ill because there can be £100 on the floor, but you are just too ill to pick it up.

This statement flits through my head as I lie on the bed, cuddling the dog (they ALWAYS KNOW when you are ill), dozing and listening to the sounds of the house going on without me.

Ludo, my lovely Labrador, keeps trying to lick me all around my face, ears and neck. The places where my lymph glands feel like sore rocks, how does the dog know this?

As well as all the swelling of lymph glands, I have a myriad of other symptoms that are basically just my usual ME symptoms but just 10 fold worse than normal. It’s an effort to move, turn over or get out of bed. Walking downstairs requires immense effort and concentration. Luckily I have Andy and Peter here to cook, and to bring me the occasional mug of tea upstairs.

The days pass in a haze of sleep and the normal house routine.

Appointments have to be cancelled and rearranged, other people have their lives disrupted because of my incapacity.

As I lie on the bed I do a check around my body, any glimmer of a change? No, not yet. So lie here I must. We don’t have a TV in the bedroom so in the evening I am in my recliner chair. The dog a little less confused because this is normal, everyone watching the TV. With the volume as low as we can tolerate because I have a sudden severe aversion to loud noise.

People ask, will I sleep at night after sleeping all day? And I say yes, I can, because at the moment my body is telling me to sleep for England, I need little encouragement.

As the days progress family get told that I am not well, nothing to worry about it’s “just the ME”, more plans rearranged or cancelled.

The headache, muscle aches, joint pains and swollen glands just continue. The regular medication is taken. There’s nothing extra to take unless you want to be completely spaced out, they don’t suit me I’ve discovered!! 

Hopefully after some days of full rest, symptoms will improve and the flare will begin to resolve. 

Then begins a period of very careful pacing, my day and my week.

Very very gradually resuming my normal routine and schedule.

A month from now you probably won’t know anything was wrong.

But for now, I must rest, and rest some more. 

What causes this flare of PEM?

Overdoing things physically? Excessive emotional response or stress?

An infection or some other “normal” illness that throws the body out of equilibrium? 

Being too social? Too sensitive?

And my answer? Any or all of the above.

Hopefully one can try and avoid it happening again, but sometimes it’s just a very unique set of circumstances that have caused the situation.

It’s part of life with this mysterious illness.