Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM can be mitigated by activity management (pacing).

I have been suffering for a few weeks now and I am hoping that this week I can get myself back to some sort of pacing. Sadly, unless I want to risk something going horribly wrong, I am going to have to say no a lot more often.

Ah, but, I hear you say, you just need to push through it.

That is precisely my problem, I keep trying that. The results of stupidly trying to push through knowing that this very act makes matters significantly worse astounds me and yet, that is what I have been doing.

Do you know what it feels like to forget your address? I have lived here over 20 years and I just couldn’t remember it. I was totally relaxed, not stressed at all and my brain just wouldn’t go there. That is a result of pushing through. It’s scary, it feels how dementia must feel. It’s not just a moment of blankness, it took me many minutes, too many minutes using a process of elimination before I got it close enough, it still wasn’t quite there but it was near to it!

Driving knowing I am too tired, that I am not at all alert and having to push through to get from A to B. That is mega scary. Planning a trip around a nap break. Not because I didn’t sleep at all, just because it didn’t work.

By exercising we are not referring here to going for a run or even a walk. It can be something like doing household chores, even feeding the cat! Mostly the above chart is spot on. It’s all very depressing in nature but, it is what this condition feels like and it’s not imagined.

Having too many days when waking up feels exactly the same as heading to bed, nothing has changes apart from some missing hours. Knowing that last night I went to bed feeling like this but somehow, I got to get through this day feeling how I felt last night!

Pleasure being measured by the possibility of just sleeping. Getting into bed, putting the phone too far away to hear, no alarm clock, no deadline, just resting.

The absolute madness of seeing a call come in on my mobile and knowing that the very action of taking that call is going to ruin every plan I had for the day. Trying to stay cool and not get mad at them when right there and then I just wish they’d left me alone. It’s always wanting me to do something, ideally now. So rarely do I get a call where someone just says “fancy a coffee, my treat”.

Even when I am given help I hear through the grapevine that they felt compelled to do them, like I am some great burden. It’s just so amazing when someone does something for me which makes my life better, no complaints, no reluctance, just doing it ‘because’.

Just writing this I feel my mind shutting down. Typing is more difficult as I go, more mistakes. I lose words. I start of typing and cannot think of the next word or anything like it. I feel what I want to write but the words just won’t come to me.

In the diagram above it goes a little understated or, over emphasise on quite hefty activities. It seems to imply that a sufferer going about their normal daily tasks or work and social suffer. This is way more basic than that. Just making breakfast cereal in the morning can render me unfit to drive. I know this and tend to avoid eating when I know I have to drive. As for the blue section, most are such radical events. I can get exhausted just by an attitude someone gives me, anything negative at all. It’s not realistic to expect constant adoration and praise but, all too often I feel I am being got at, used even just by the vibes I pick up that I am just too much effort.

Tomorrow I have a couple of things I need to do, I might even trim those down a little. Thursday I just have to get Dennis to and from work. I need to force myself to sleep at the other times.

I saw a shocking picture of a friend being treated for a very noticeable condition. I know they are getting shit tons of support (rightly so) and just sometimes I think to myself, why can’t people just see what I am going through here?


From 8th May for at least 5 days I have to give notice that whilst I might be available for social occasions I am totally out of bounds for any assistance anyone might need.

This includes but is not limited to, driving, IT support, Interior Design, cooking and so on.

I owe it to ‘me’ to take the break, get myself some sanity back!

When I get to the point I struggle to remember my address and fall on escalators, it’s the time to stop!

Two clear days

Am so looking forward to this! (No, I am not)

It doesn’t seem very exciting but, I had two clear days whereby I didn’t need to rush to the loo.

I’ll be honest, there was that remaining optimist part which said that I didn’t need to worry any longer, my belly was under control. It was lovely just ‘going’ like most other people.

Since June and getting over covid-19 I have had this issue of daily diarrhoea, several times a day. The doctor has ruled out most nasty things but I still have to wait on a colonoscopy to literally look into it better. The theory there is that all really serious conditions will be ruled out leaving IBS as the culprit. Who knew covid could bring that on? It’s shit really!

My stability today has been really poor. Several times I didn’t seem totally in control of my leg movements and was fortunate to have support to avoid accidents.

Yesterday I had to stop driving to rest for a while. It seems that a few minutes is enough to trick my brain. I don’t know how that works, it shouldn’t by rights but it does allow me to continue for a little longer.

Covid booster jab next week, most of the family are having it.

I still have a few months yet to wait on my medical stress test for my heart. I hope that finds nothing sinister. Not that a negative will explain the chest pains but it should rule out something life threatening.

Invisible Illness

Learn Something Today

Whilst I do have an invisible illness this is not just about me. So many people have an illness we can’t see and most of them share the same experiences in their lives. Short lived sympathy, well meant encouragement and disbelief.

This is true for so many … including me

I think we have all done it, we’ve been either sick or healthy ourselves then seen someone who isn’t working, perhaps claiming financial support and we’re like …. yeah right, looks like they’re ill!

No one intends to be mean about it but, we just don’t think. I know I have been guilty of it myself and I should know better and, this is why …

My Mum!

Mum had chronic arthritis. I had many stern comments to say to people on trains who left her standing whilst they sat in the disabled seat but mum was in constant agonising pain every day for the last 20 years or so of her life. I have lived knowing what invisible illness looks like so, yes, I should know better.

One of the things people might say to mum was “Oh yes, tell me about it, I have such pain with my rheumatism, you have no idea”! Now, true, to them it was bad pain but it didn’t compare to mum but she always took it graciously.

The truth is, even two people with the same diagnosis can have hugely different symptoms and degrees of severity. It simply isn’t right or fair from one sufferer to say to another that they do this or that so if they are copied then someone else will cope too, we are not the same.

Because it doesn’t

Why should we expect our lives should ever change whilst we are young and healthy? Mum died at 52, I am fast approaching 56. We just never know what ‘old’ is for us, we don’t know what cards life is going to deal us until we get them.

It is really upsetting to someone bravely suffering to imply that they might be making it up, they might be lazy or expect the state to support them.

“You’re too young to feel like that.”

“It’s all in your head.”

“Everybody gets tired sometimes.”

“Your pain isn’t real.”

“You’re cancelling on me again?”

“I’d like to lay in bed all day too but some of us have to work!”

“Well, you don’t look sick.”

Don’t judge that which you do not understand

The worst part is, sometimes the very people who say it have an invisible illness themselves. They might sufferer terrible migraine, anxiety or depression and, to them those things are totally real. It is no good telling your migraine that it is all in your mind and expecting it to go away!

Let’s get real, if it really is all in the sufferers head, wouldn’t they rather imagine they were wonderfully healthy full of bounce and vigour? Why would someone choose to struggle on a little income if they can choose a good job and big wage packet?

Why do women make this mistake?

Many women each month go through something quite unpleasant and to the outside world, entirely invisible yet, many may well expect and be given time off work for it and extra understanding from those around them simply by saying “It’s my time of the month”. Why can these ladies not understand how hurtful it is to tell someone they’re making it all up?

Next time you are confronted by someone who tells you they have an illness you don’t understand find difficult to accept, give them the benefit of the doubt and believe them. You don’t ever have to fully understand it but, one of the greatest comforts is having those closest to us tell us we are believed.