No rhyme nor reason

We all know hormones are funny things even when behaving. Just look at the joys they wreak on women every month, throwing your mood one way this minute and the opposite the next. It’s even more fun when your hormone system is actually out of wack.Many people with hormone-related issues such as Cushing’s or thyroid problems report having good and bad days (as do people with pretty much all chronic illnesses). Sometimes they just seem to make no sense as to when they hit though. I’ve suffered from arthritis in my elbow since I was 17 due to an accident when I was 10 and that gives me both good and bad days but as that’s a physical pain I can often predict what day will be what. For example if it’s a damp day (not full out rain but humid) I am probably going to suffer with aches.

A lot of these Cushing’s symptoms however make no sense at all. Some do then throw you a curve ball just to confuse you. For example one effect when your cortisol levels spike is that you can’t sleep. This makes sense as cortisol is what triggers your ‘fight or flight’ survival instinct; you’re not going to survive very long if you curl up for a nap in front of a pack of hungry predators. So I wake up a lot during the night. For example last night between the hours of 11 and 7 I woke up 6 times. This morning I feel perfectly fine as far as sleepiness goes. The night before however between the hours of 11 and 8.30 I only woke up 4 times. I was completely knackered all day, so much so that I could very happily have spent the day in bed. Maybe it does make sense as in perhaps my levels are so high from last night that I’m still in a fight or flight response and therefore feel wired up and ready for action.

It’s all this myriad of invisible symptoms that are so frustrating for sufferers as well; people can see the physical ones which are bad enough. Take the lady 2 weeks ago who felt she had to comment on how I must be really feeling it during this heat, she was carrying her daughter one hot August. I wanted to say to her “I’m not pregnant, I might just have a brain tumour” but she was only trying to be nice so I didn’t want to make her feel bad and just said I’m not pregnant. Or the terrible spots/acne that I have on my chest. I can cover so many of them up with clothes but not all and I mentioned that they’re symptoms to one of my friends the other day who had noticed them but not commented and didn’t realise they’re part of all this. But the non-physical symptoms? Much harder.

I explained the other day to someone about my memory loss. They compared it to how we all do that thing where you walk into a room and forget what you went in there for. Obviously I’ve experienced that, everyone has, but this is very different. My example was how I was in the shower and had just rinsed my hair but the instant I stopped I couldn’t remember if I had or not and had to actually check. It’s a scary feeling, that something can instantly be pushed from your brain. It was like waking up after a severely alcohol-fuelled night except at least then you have a reason for some time being missing from your memories. Or when I was sorting through emails from my parents. They took in a litter of 4 kittens a few years ago, 2 brothers and 2 sisters. They kept the 2 brothers but 1 died suddenly, they think of a stroke. Reading one of their emails they mentioned Alex and I couldn’t remember for about 10 minutes whether he was the one that was still alive or not.

I’m keeping a journal of my daily symptoms and yesterday I knew I needed to write 1 down but I couldn’t remember what I was suffering from for 2 hours. I have a permanent state of brain fog and a lack of motivation; how do you explain that to someone? I’ve had calls at work where I have no idea what has been discussed and not because I wasn’t paying attention but because my mind just wipes it out straight away (and of course there is always a question that follows it, how I’ve blagged my way through some of them I have no idea). After all at work no one ever really wants to concentrate but then when I can’t even focus on a hobby for 10 minutes? I had most of this week off for the World of Warcraft: Battle for Azeroth release and whilst I have played it a lot, I haven’t played anywhere near as much as I’d have liked to because I just can’t focus.

This is one reason for this blog. It’s easier to find the words when writing them (particularly as that’s another symptom; sometimes I just can’t think of any words at all. At least writing rather than speaking gives me time to gather my thoughts or come back to it). Maybe it will make sense to someone who knows me next time I seem to be acting a bit weirdly, or will help another sufferer to explain what they are going through.

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