I got coronavirus back in February (I assume - I was not allowed a test as “we did not have coronavirus here”). I had all the symptoms and ended up struggling to breathe for about a month before things started to get better. Or so I thought. They did start to get better, the cough disappeared, I could often breathe just fine. When it felt like I had a wrestler from the 80s sat on my chest and my lungs had been replaced by soggy spaniel’s ears, it came as a surprise, and then I remembered I used to feel like this every day.
But I started to notice a pattern, and it is a pattern no one is talking about. My symptoms seemed to return according to my menstrual cycle, and as I started to pay attention I noticed that they also returned around ovulation. COVID* completely messed with my cycle. The first month I bled for 15 days, I had 10 days off and then another 10 days on. As things started to level a pattern started to emerge. All of my symptoms from COVID* (apart from the cough) would start to come back about 10 days before my period, increasing in intensity, and then when my cycle started, they would retreat. I would bleed for 10 days, have about 4 days of feeling ok, then a week of all of the symptoms coming back, then about 4 days of feeling ok, then the whole cycle starts again. That leaves me with about 8 days a month to try to earning a living.
I began to ask women of a certain age who I knew had had it* whether their cycle had been altered; nearly every single one exclaimed some version of “Oh my god yes” or “I thought it was just me!” and the ones who did not respond so strongly all had some variation of “No…. actually, hang on a minute….”. We don’t often talk about this stuff. We are not meant to talk about this stuff. Those who do not have to deal in blood monthly can still be school boy squeamish about it, and it seems a lot of those same boys are in charge of our media outlets, so no wonder it is not being reported. If every single woman who has periods I speak to is experiencing this, you’d thing there would be some kind of pattern emerging people would be talking about. Unless my uterus is just mad influential and I am cursing all cervixes with whom I speak. I mean, they did used to burn us…
A few weeks ago I asked if it would be useful if I wrote about some of my post-COVID symptoms. Ironically, since then, I have been too exhausted to do anything about it, but it feels like the right time. This morning I had a spoonie classic (post viral / chronic health condition newbies would serve themselves well to read up on Spoon Theory) of trying to weigh up if it was worth doing something I knew would destroy me for the rest of the week, because it was good for my soul. And frankly, if you know you’re going to feel awful anyway, sometimes it is nicer to seize some agency over the fact that at least I chose to feel this bad. But I couldn’t I could not stand up in the shower. It is now 4pm in the afternoon (a time my body seems to have become convinced is called “Bedtime” and I am in so much pain I cannot sit to write this). But this morning I was trying to convince myself to cycle from Hackney to Woolwich. Haha brain, nice try.
This afternoon exhaustion seems to be common. Between 3pm - 7pm every day I could sleep like a sulking teenager who has chores to do. I cannot engage. I stare at things a lot and then suddenly come around and realise I have been doing That Staring Thing again. I convince myself I need to stay awake because tonight might just be the night I sleep. Tonight is never the night. Roll around 10pm and I am bright as a berry. Want that work proposal finished? No problem. I might just chuck in a few bits and bobs around the house that need doing. Edit some photos? Sure! Maybe I could just finish off that arts and crafts project I started in lockdown?
Then often I start to get a headaches that makes my sight go like the old BBC test card. My brain does this overdrive until about midnight. My body then starts to collapse around me and yet my brain is still all about the to do lists, chattering on and on as my limbs slowly slump. I basically resemble someone who is just about to tell you The Shamen are the greatest band of all time. And then I crumple into bed. Quite often it feels like I have been spiked. It is like my body goes to sleep but my brain is still whirring. I was laying in bed the other night and thought of something and decided I should search if anyone else was noticing it as a symptom; I managed to move my eyes to my phone but that was it. My head would not turn and it was like watching someone else’s arm and willing it to make contact with the magic computer talky box with the buttons on.
When I do sleep it is weird. My dreams are weird. And vivid. My brain is having a right ole neuron firing party. I have reoccurring dreams that seem to burst open once a week. It is the strangest thing ever. The only way I can describe it is if I suddenly remember an identified item in a dream, lets say a river, or a bike ride or a bathroom, once I think of that thing, a whole load of other memories flood back to me reliving all the other dreams I have ever had about rivers, or bike rides or a bathrooms. It is like a cluster of bubbles bursting and suddenly I know I dreamt about that back in May or that loads in June or that was something I have not thought about for years but used to dream about loads as a kid, stuff I had no recollection of until now, and they all come popping back crowding for space trying to remind me of all of the details of all of them at them at the same time. I could tell you in minute detail about dream scenes I have remembered during one of these moments of lucidity, colours, plot, dimensions, characters, intense details about dream sequences. Maybe that is normal for other people, but I usually remember dreams about once a month and then they are kind of half thoughts and concepts I cannot put into words and cannot explain to other people because they have disappeared before I can shove them into words. But these little bubble bursts happen about once a week. It is the strangest thing.
Then I wake up around 4am with body aches and shivers. I have learnt that I cannot ignore it and will myself back to sleep. If I get up, have some water and maybe a small snack and potter around for an hour or two, I can then go back to sleep for a good three more hours - and that is decent heavy sleep. I wake up feeling like it is mid-winter and if I could just get my head down for another four months, I am going to be all spritely again. When I do get up it feels like it takes my body about an hour to rise with me. It is like trying to run under water, dragging around this fleshy suit which still thinks it is under the duvet.
Some of this lack of sleep could explain the fatigue, but not all of it. Back in our old universe, I was a gym five days a week and cycle for an hour or two a day sort. Last week, I cycled half of my old daily work commute and had to stop three times because I simply could not breathe. I sat on a park bench red as a beetroot, gasping for air and crying, thinking that quite frankly, I understand why people keep having post-COVID* heart attacks.
Then we have the the bone aches. My body hurts like the Monday after Glastonbury. My whole skeleton aches. Joints feel like they have crushed glass between them and muscles feel like someone borrowed my body for 10 straight HIIT classes and then hung the worn out goods back on my creaking bones. But more strange than that, I can feel every single break and fracture I have ever had in my body. Not a little dull winter thud, but a hot burning red line along the exact crack like I just got out of plaster. I could tell you precisely where each and every bone in my body has ever been fractured and where the exact line is. Not just recent ones, but childhood ones too.
The brain fog has been quite well reported, but I am not sure that means much to people who are not experiencing it. I mentioned that I stare at things a lot in the afternoons, but I also cannot remember things. I was in the park the other day looking at a woman in the distance and thinking how nice her dress was, and when I turned to my boyfriend he was giving me a weird look. When I asked what the matter was, he said I has been mid sentence and just stopped talking. I had no idea I had said anything at all, let alone that we had been in a conversation.
Then there is just a whole load of random stuff I have noticed: spectacular random vomiting - cinematic projectile from nowhere stuff - the kind that leaves you kind of appalled / impressed with yourself. I have noticed if I cut myself even slightly, the blood will pour out of me and be pooling on the floor for 15 minutes before any kind of clotting begins. My stomach seems to want to join in everyone else's conversation and sits there gurling away like a newborn to embarrassing degrees. My hands keep swelling up like a bunch of little sausages and I can no longer fit my rings on. If I am walking down the street they often look like someone has attacked them with a bike pump. I get eruptions of ulcers at the back of my throat about once a month - they will pop up in the morning, it will be like I have a snow covered mountain range at the back of my mouth by evening and then they are gone the next morning. My hair has turned dry and brittle and falls out or snaps all over the place. My boyfriend says I leave enough of me around that he is going to start knitting himself a jumper.
But in those 8 days in between, I feel fine. I mean, like I am faking it, that I should just bloody well get on with things, the lazy toad that I am.
So what helps? Drinking lots of water makes the world of difference. That is a nice place to start. Paracetamol does seem to help the aches to a degree but the relief seems pretty short lived and dulls rather than blocks the pain. Frustratingly, sleep does not seem to help - or by that I mean, I never wake up feeling refreshed. I’m fortunate in that I love what I do and so my brain drives me forward, but if my body was in charge, I may not have got out of bed since February.
So what can my mates do? I wish I knew. I know I do not find it very helpful when I see someone and they tell me I am feeling better. I know it has good intentions. It does not feel that great to have to explain yourself to people. Especially when none of it makes sense and the bits which have gone away might well be back in a few hours - there are no rules any more. When I was at my most ill I really, really appreciated my mates who turned up with tubs of cooked food to fill my freezer - so if you know someone who is struggling with all of this nonsense, that is such a nice thing to do. You know what else would be amazing? Someone to help with the household chores. I feel a bit sick even typing that, but am doing so anyway, because I know no one will think it is a beg for help as it is literally unsafe to do so at the moment. But as things change and ease and when we start returning to human contact, if you know someone who is ill, offer to do the hoovering, clean the bathroom, or do some laundry. That basic stuff is absolutely exhausting for me right now. Currently, I hoover my house one room at a time, once a day, as I know I do not have the energy to do more than that - and it makes me really out of breath. I once heard someone say that you should never say you are there for someone unless you are willing to show up at their house, do their washing up and sod off. If you have any mates who are sick, and when it is safe, be that person.
Anyway, I have typed quite a lot here, and honestly, I am exhausted. So I am going for another little lie down now. I am one of the lucky ones. I know that. I survived. Please do not think I am ignoring how fortunate I am.
I hope someone finds this useful, or maybe has a “I thought it was just me” moment. That’s enough right now. That we share and help out where we can. Look after each other. And wear a mask.
*maybe
PS Yes my GP know, she is super on it, I’ve had loads of tests and nothing shows anything useful x
PPS I have a course called How to Stop Feeling Exhausted the Whole Time. It is not going to cure you, but it is written by someone with long covid (me) and it does have all the tips and tricks I use to manage my days.