My experience of PEM/PENE

PEM (post exertional malaise), also known as PENE (post exertional neuroimmune exhaustion), is the key feature of myalgic encephalomyelitis, and differentiates it from similar or co-occurring conditions.

PEM/PENE is not simply “feeling tired” after doing an activity. It is an extreme increase in symptoms, & is generally a delayed reaction (usually by several days). It is also a prolonged state, & takes a long time to recover from (weeks & months rather than hours), and can even result in a permanent worsening of ME.

Here is my experience with PENE:

It hits 24-72 hours after ‘big’ activities (leaving the house, showering, appts), OR if I have seriously pushed my body too far, it can hit immediately after or during an activity.

This happened most recently when I had two days out with family in a row; on the second day I crashed within an hour of leaving the house with them. I lost the ability to react to my surroundings, couldn’t talk/respond, felt freezing cold, & needed immediate sleep. This is very typical of an immediate crash for me, although sometimes a migraine is involved.

Currently I am experiencing abysmal PEM/PENE from recent activities. Here is what it is like for me:

  • I’m having a LOT of seizures, & am feeling ‘spacey’ & on the brink of a seizure constantly
  • My exhaustion is unreal; I can barely move my limbs, can’t hold a drink, & am having to crawl to the stairlift to get to the bathroom
  • Cognitive difficulty is extreme – I can’t focus, my words get jumbled & I talk jibberish, I can’t hold conversation
  • Have lost my sense of taste
  • Experienced temporary loss of the use of my legs – I couldn’t move them at all
  • I’m craving carby food (big sign of relapse), so we’re getting takeaway 🍕 for the first time in weeks as I neeeeed it

Even though 85% of the last 4 days has been spent sleeping (as a result of pushing myself too far) I am –

  • beyond exhausted
  • desperately need sleep
  • can’t think
  • & currently my eyes are streaming

Life with ME everybody 🙄

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Ugh, life

Tomorrow is Lyle’s actual birthday & I couldn’t be happier we celebrated (repeatedly) earlier, as I am just not in a good place.

I’m hypomanic, & I’m so frustrated with being stuck in bed all the time. I woke up from a big nap today thinking it was morning, & my brain immediately jumped to “I’M LEAVING THE HOUSE TODAY!!” 🙄

Like, no. You can’t, shut up!

Yesterday despite it being a rest day I crashed so bad in the evening, & couldn’t open/control my eyes properly, move, or speak – for several hours I was too exhausted to do anything. I absolutely hate ME, but hypomania in addition is literally the worst…I’ve done really well this month, I’ve only left the house five times, & I don’t want hypomania to ruin that & cause a potentially permanent relapse 😭

Tomorrow Lyle’s going out for a meal with some of his family, & I’m staying home…I’m so jealous 🙄 Hopefully I’ll just be able to sleep.

I feel like soon, life will improve so much – thanks to the OT & grant scheme we’re getting a stairlift (30th of this month), wet room, hand rail, & with savings we recently bought a power pack for my ♿. I’ll almost definitely be able to do more overall with these adaptations to the house, especially as one of the smallest activities that triggers the most fallout is climbing the stairs 2x a day.

However that doesn’t really help when I’m currently irritated af, just want to GET OUT, but my body is incredibly physically exhausted… 😕

Difficult days

I came out of the crash 3 days ago, but obviously I’m ‘overdoing it’ (by that I mean basically doing fuck all 🙄), & running myself into the ground again.

I’ll never learn.

It’s hard. Especially because I know I’m supposed to be keeping my heart rate under 100bpm to give me the best chance of my ME improving, but how am I supposed to do that when sitting down & brushing my teeth puts it at 150bpm?!

My exhaustion & pain are creeping back up. I’m having a really hard time sensory-wise, & have had a lot of meltdowns for me this month (9).

Here’s my April stats:

Today has been one of those days where I’m mourning & full of grief. Those days where you’re really, truly sick of being disabled, y’know?

We all get them, it’s fine to get them, it’s totally normal…but it SUCKS!

God, I miss so much from my ‘old’ life!

I miss when I could shower every day.

I miss when I could get my own drink, run up the stairs, dress myself.

I miss when I could get out into the world EVERY DAY, when I could hike for hours *every day*. I got such joy from hiking, it was so calming & positive for me. I miss it so much!

I miss not having to rely on my wheelchair.

I miss not having to worry about terrain or steps.

I miss being able to walk hand in hand with my partner, sit next to each other on pubic transport, cuddle, talk – without having to yell over my shoulder because I can’t turn my neck easily, or constantly having to repeat things.

I miss being able to walk my dogs, play with my dogs, manage my other pets.

I miss feeling energised & excited at each new day, instead of exhausted and…’stuck’.

I still get out, I know I’m lucky. I have a fantastic partner.

I know I’m lucky.

But I’m still mourning a huge loss. I’m bedbound far more days than I’m not. I’m never symptom free, I’m in pain 24/7, 99% of my time is spent in bed.

I’m still grieving hard.

I’m grateful I can still get out on these short, rare adventures.

I know I can’t do even a tiny fraction of what I could 5yrs ago. I know when I push my body, even by doing such tiny slight things, I’m making my chance of improving slimmer. I know it’s extremely unlikely I’ll even recover to 70% of my old normal.

But I feel like if I try do even less, my life might as well be over. For me personally, I couldn’t live doing less.

I need to get outside, to manage both my autism & my mental health.

I need to find a balance that’s doing enough for me, but not doing too much for my ME, but it’s hard. Such a fine, fine line 🙄

Sigh.

Freewheel trip!

Got out with me freewheel today.

It was haaaaard! Getting into my chair then into the house at the end was incredibly difficult 😌 My joints are super loose so I had several subluxing or threatening to on the walk, my crappy right wrist is agony now. The grey skies meant my light sensitivity was off the charts & I was having frequent seizures…damn 😂

But halfway on the walk we stopped for a reset, I hid under Lyle’s hoodie, then the sun came out & I was able to manage A LOT better after that 🙂

This is my first time on the beach since last summer 😍

My freewheel had NO issue with the terrain at all, even when going through squelchy mud 😃

Also, have some newborn Easter lambs 😉

Ow ow why ow

Today is my 4th migraine in a row, my 6th this week, & my 11th this month.

I’m in agony.

I can’t even get to the painkillers because I’m so fatigued I can’t leave bed, & Lyle is out buying food because we had NO food in. I need painkillers & ice owwww.

This is one of those times I am just so fucking sick of being sick…

I’m ANGRY

I don’t think I’ll ever get over the fact that thanks to the NHS’ incompetence, my illness is almost definitely much more severe than it would have been, had they caught it earlier.

One of the worst things you can tell someone in the early stages of myalgic encephalomyelitis is to ‘push through it’ or to exercise. I was told this by everrrryyyyyooooonnnneee!

As recently as one year ago, I was fighting against my body & still exercising more than I ever should have. As a result I was dangerously ill. I was experiencing 30+ seizures a day, at home I was unable to leave bed, & I was in huge amounts of pain. Not to mention the constant, debilitating fatigue!

It took me over 6 months to start connecting the dots. At first I realised I had dysautonomia, which is easy to measure & notice yourself (because there was no chance in hell the NHS would take note & blame anything but my mental health 🙄).

However I knew it wasn’t ‘just’ that, as I already had experience that exercise made me much worse. My level of ability (or lack thereof…) & the intensity of my fatigue also sat very different to all the POTS peeps I read about.

Discovering ME was like a bulb going off inside both me & my partner’s heads!

It explained my need to very slowly pace my days. It explained why REST was crucial. It explained why I needed to avoid both physically & mentally taxing activities. It explained the pain, the fatigue, AND the POTS (as they’re co-morbid conditions).

Through research I learnt that pushing myself to exercise (over an hour daily) in the early months of my illness, was possibly the worst thing I could have done, & has almost definitely left me with a more severe condition. It explained why my seizures used to be so excruciatingly high, why I had no memory, no energy, but a lot of pain.

I’m furious that had it not been for the NHS missing everything, & doling out standard, dangerous, advice…I might not be bedbound 97% of the time now. I might not need to rely on a wheelchair anytime I leave the house. I might be able to get to the toilet unassisted. I might be able to shower myself, or cook for myself.

I might have some semblance of a life.

As it is I’m fighting intense symptoms daily. I spend most days in bed, with the light dimmed, struggling to find the energy to eat or read. If I make it out the house twice in one week, I’m lucky. I rely on my partner for EVERYTHING.

What’s worse – I’m one of the lucky ones.

There are people with ME that can *never* leave bed, that can’t stand *any* light or noise, & that can’t eat.

But the way the NHS handles this condition is truly despicable. People are told it’s in their head, that they’re healthy…when it’s finally unavoidable, & patients are correctly diagnosed, we’re then forced into treatments that DAMAGE US FURTHER; or we’re ignored completely & told there’s nothing that can be done…

It’s a shambles, & it’s scary.

And I’m so angry that my life is how it is, & the NHS have a) done nothing, & b) ignored me when I initially approached them for help.

Signing off feeling like utter crap ~