Firstly, thank you so much for the lovely feedback we've had about mum's post. Despite her worries, it's gone down a treat, and everyone seemed to enjoy it (even if it made them cry!). She truly is a wonder.
As you most likely remember, I wrote a post going through how the average good day looks for me in A Day in the Life.
At the time I wasn't ready to talk about how a bad day looks, and how the Payback that surrounds those bad days feels.
This post is about that.
As such I should probably warn you that it's not the happiest of posts, because the bad days can be pretty horrific, and there's not really a way to sugarcoat something like this. But I think it's good to talk about it. It's quite cathartic for me, and also gives you an idea of why I'm so very strict with myself all the time.
Payback is actually quite a hard thing to talk/write about. This is partially because when you're during a good period the last thing you want to do is hash through the bad times, but also because it's genuinely quite hard to remember the details.
Because of the worsening cognitive symptoms of CFS/ME during these dips, your memory gets considerably worse, so after you start to come out of a dip you are mostly left with a general feeling of "oh dear god I hope that never happens again".
I can't actually remember that much about when I first got ill for the same reason. I know that it's the worst I've ever felt, but the details are all rather fuzzy, much like when you're delirious with a fever.
(There is part of me that wonders if it's also the brain and body trying to protect itself, like the way the body releases chemicals when women give birth so they can't remember just how bad it was. They know it was bad, and have no qualms in telling people that it's the most painful experience of their life, but they'll still do it again because their bodies protect them from it, thus ensuring the continuation of the species. Yay science!)
The only way I've managed to write this is by, a. writing it when I'm just over the worst (fingers crossed!) of the Payback from my last drop having donated blood to a ME/CFS study (won’t be doing THAT again!), and b. by trying to think about how it felt when it was happening and then trying to haltingly verbalise it to my mum at the time.
Payback is generally just rather dryly described as "a worsening of symptoms", and yes, it is that, but it's also a lot more.
It's different for every sufferer depends on their weaknesses, different things will trigger it, and depending on their usual level and exactly how far they've gone overboard it'll cause a different level of energy drop.
If Payback causes sufferers to drop between ten and twenty percent for example, then those who are already lower down that scale are at greater risk of the consequences.
(That doesn't, however, mean that those further up the scale aren't suffering and can't put themselves further down the scale of they're not careful. Sometimes sufferers at the higher functioning levels suffer more from it because they're more likely (and more able) to push the boundaries further.)
Payback has its own levels. My bad days can be needing to stay in bed more, or needing to do less, or it can be a full blown Payback Period. (It's basically anything from the worst case scenario upwards.)
A full case of Payback for me goes in stages. It rarely hits straight away, so there's a very odd moment when I can feel it's coming.
My energy levels start to drop, my limbs start to ache like I've got flu, and I start to feel really restless and uncomfortable in my skin. (I get this when I have flu as well, the best I've managed to describe it is "my skin feels weird". The bard I am not.)
It's not unlike the moment you move and you realise your leg is numb and you've got a short amount of time before you get pins and needles but there's nothing you can do about it.
This stage is like the herald announcing things are about to get serious, so I try and warn my parents, get to bed, and say anything that needs saying before I reach the next stage.
At this point the energy drop starts to gain momentum, the muscle aches get worse and I start to have difficulty thinking, moving and speaking.
This is very frightening because you're just aware enough to know that you're not fully functioning.
In my mind it's like the part of your brain you have no control over shuts everything down apart from your most basic functions (breathing, organ function), so you can't really do anything that's not completely necessary to your immediate survival.
(To my fellow geeks, think rerouting all remaining power to basic life support systems. Fine on a spaceship, terrifying in a human.)
I call this stage "Emergency Shutdown."
I call this stage "Emergency Shutdown."
Pretty much literally, the only thing you can do at this point is rest and wait for your body to gain enough energy to come out of the danger zone.
It's worth reminding you guys that I'm not actually in danger unless I keep trying to push it at this point (although frankly I'm not sure how I could). I'd pass out first, and that'd give me time to get energy back. And I've never let it get to that point.
(Note: some sufferers symptoms include passing out on a fairly regular basis, it doesn't mean they're at the same stage I would have to be to do so, but obviously they should rest to avoid this.)
Payback, as a general rule, is a horrible, harrowing experience, but it's not dangerous if handled correctly.
The next few days is pretty much guaranteed to be spent in bed. During this time I'll be extra tired, have achy limbs and joints, have bad headaches, and be less able to move and speak. I'll tire much quicker and do much less.
Despite the extra tiredness I can often have sleep disturbances at this time as well.
This is the bit that I'm least able to remember with any clarity. Even now it's hard for me to remember what happened last time and that was two weeks ago.
The most I'm able to do during these times is read on my phone or go on social media (I've said before that those are my least tiring activities).
Washing becomes difficult. I'll normally try to wash in the sink everyday and get my hair washed every other because I hate feeling dirty and it helps relax me and keep me sleeping well. Showers and baths are a complete no-no.
In the evening mum will wash my face and hands for me and bring my electric toothbrush through so I don't have to get out of bed unnecessarily.
There's not really a set schedule on bad days because there's no way of knowing what level I'll be at.
We keep food times the same, sometimes with more snack in between, to keep my blood sugar levels as stable as possible. Any blood sugar drops affect me much more on bad days so we have to be extra careful.
Bedtimes are extra early, and despite my usual assertion that it's bad to mess with your circadian rhythms by sleeping in the day, I'll normally nap in the afternoon and pass most of the day in a haze of rests and relaxation tracks.
As the days pass and I build energy, the worsened symptoms slowly go. The movement and speech tends to come back first, although I'm fuzzy headed for a while after, then the aches recede until it's back to the normal symptom level (these things never go away completely).
I'll slowly start spending some time downstairs, building up as I get stronger.
The tiredness stays the longest, and after the official Payback period is over, I'll find myself at a much lower ability and energy level than I was before. Depending on the Payback severity this can take a week, a month, or several to get back to how I was.
Emotionally this is the hardest part. When I'm in the depths of the Payback period, I'm too sick and exhausted to feel upset or angry or frustrated. The return of these feelings is actually a sign of improvement, but that doesn't really make it easier.
Even though I always fear it won't, I know on some level that the worst of the Payback will pass, but the effort it takes to build myself up afterwards is massive, and another round of payback can happen at any time and scupper my improvements.
I get so frustrated and it makes me feel a bit like Sisyphus, pushing the same boulder up a hill only to watch it roll down again, but it's only by making these mistakes (be they emotional or physical) that I've learned what my triggers are and how to avoid them.
As I said, Payback is always on a sliding scale, but I'm slowly suffering from these massive Payback period less and less (touch wood!).
I'll often have worse headaches or join pain and tiredness, but not to the same extent I used to.
Hopefully over time I'll experience it less and less and as I improve it'll become even more difficult to remember how it felt.
Eventually, this whole experience will be nothing but a distant memory.