Yesterday I posted on my art blog about how I am happy in my core despite CFS/ME. Whilst I still think that’s true it’s not the most immediate conclusion you would draw if you sat with me this last day and night.
It started with not being able to get to sleep last night. A combination of stomach/IBS type problems and what feels like a brick wall between me and sleep. It’s not that my brain is overactive (which always used to be the reason I couldn’t sleep) or that I’m not tired – because I am in fact exhausted. It just feels like trying to go to sleep when you’ve only been up a few hours – it’s not the right time. My theory is that my body clock gets confused by the ME/CFS.
Whatever the reason it’s irritating. Not the end of the world but frustrating and has a knock on effect.
During the first few attacks of this transient insomnia I removed myself from the bedroom and was sleepy enough after an hour or two to return to bed. The amount of time it’s taking for that sleepiness to take hold has been getting longer and longer each time.
Last night I sat killing time until just after 5am. It seemed if I didn’t go back to bed then I wouldn’t be in bed at all that night. So back to bed and I dropped off as I heard the first birds singing the dawn chorus. Sigh.
At 9.30am the phone rang (a wrong number) and I managed to dose for just an hour or so more. I was one very grumpy lady.
The rest of the day so far has seen me staggering between quiet contentment and crazy wailing sadness/frustration.
My dad phoned this morning and spoke to Paul to catch up as I was still flopped in bed. He’s wanting to fix up to see me (us) before they go on holiday and before my brithday. Plus it seems ages since I saw them. So he suggested lunch or a meal sometime next week and he would ring later to speak to me and make arrangements.
I found a sudden jetstream of energy and was able to both wash and dress, and even move downstairs to the lounge before lunch! (Well, just). I managed to draw – a few nasty messes and one drawing I really rather like. Which is a joy because I’ve so struggled to draw these last few weeks and have been missing it dreadfully.
After lunch I found another little jetstream of energy (joy!) where I felt clear and human. I was pretty certain (with just 4-5 hours sleep) that by late afternoon my battery would start to drain and I’d be in a useless state to talk to my dad. So, feeling inspired to do something I thought what better way to spend my energy than chatting with my dad.
I sat holding the phone for about 15 minutes trying to press the dial button. I couldn’t do it.
I couldn’t find myself to present to my dad. I mean I was there, I was physically capable of pressing the button and holding the phone – but it was like Rachel had stepped out for a moment (a long moment).
I was pretty sure that he would ask me things (how are you and so forth). I was almost certain he would ask about meeting up and what would suit me best. I had no idea how to answer. I was rendered incapable of answering, of figuring out, of thinking things through, of trusting myself to remember what we agreed, of finding words to put in the right order, of not bursting into tears because I didn’t know what to say.
But this is my dad, my great love and my big squeezing hug of love. It’s not because it was him – it was because of my brain.
Paul found me holding the phone and I tried to explain why I couldn’t dial. He had a momentary blast of frustration because it’s easy – just say x, y, z. You get upset when people don’t get in touch and yet you get upset when they want to speak to you. Torrential tears and snot follows (mine that is).
Paul apologised – he realised straight away that it isn’t easy. Nothing is easy. I’m very ill. But the tears continued because what he said was what I was thinking. It’s not difficult Rachel – just do it. Except, well it’s hard to explain – “there is”, I said “a hole in my brain”. A void, a rift, a gaping chasm where logic and figuring out and understanding and finding responses and knowing responses is supposed to be.
It’s frightening. It’s really frightening. I can’t figure out whether I will be ok to go out for lunch or not on such and such day – but I can figure out the inability to do so scares me witless. And that exposing the me with that brain hole is frightening. What if people think I am stupid, or mental, or depressed? Because I am not any of these. What if people (my dad) worry about me – which of course they are (he is) bound to do. I don’t want to show them my exposed major failing of brain and subsequent upset because that’s just a snapshot of my being and I don’t want them (him) to carry that image of me with them when the majority of my time I am ok and content.
So I get more upset because I don’t know that being honest is the right thing to do either. Paul says now I am working myself into a state and I think (or trust) that he is right.
In the end I get what I need – a clear idea of what to do to deal with the situation. Because Paul figures it out for me and tells me. Text dad, tell him I’m still feeling rubbish and will ring tomorrow – and suggest that afternoon tea would be better than lunch or a meal (because my time slot for ok-ness for such things is limited).
Well, it’s simple isn’t it? But I would not have been capable of arriving at this conclusion myself. Me. The person who is highly skilled at problem solving, figuring things out, be empathetic – knowing the right things to do and the simple solutions to stuff. Now with a big hole in my brain.
I think the hole is gone again. Well it is unless I try to make a decision or answer a question. I can manage questions like “what would you like to drink?” because I can remember the taste of the options I usually go for – though sometimes Paul has to suggest one or two for me to point and say “yer tha’ one”. But anything out of the ordinary – well it gets tricky some days. I’ve learnt to be better at saying “I have no idea” and “I am totally not bothered which” about the not so important things – because deciding is so impossible and it’s better to be blunt than get upset or frustrated over not knowing what telly programme I would rather watch.
I’ve blogged before about my cognitive functioning kicking up. Having had so little sleep I know rationally it’s not a huge shock I’m having the problem again today. But bloody hell it sucks!
I realise that not many people really know how bad it can get. How bad any of my CFS/ME symptoms can get. How bad things can get on a not particularly different sort of day to normal. Which is why I’m blogging partly – because Paul suggested I could at least show this to my dad and then he would know a bit more.
I pondered that I don’t want people to see this side of me because
a) I don’t want them worrying and carrying this very dismal picture of my life with them, and
b) because when I speak to them and show them this side of me with this illness it makes me see it from their perspective – my life, my challenges against the back drop of “normal” lives. It brings into sharp focus how limited and challenging my life is. It makes me sad for myself.
I can function quite happily in my bubble and most of the time that’s fine because I’m not able to do much. The conflict comes in wanting to do scaled down versions of normal things, behaving in normal ways – when I am just not able to. To want to meet for a quiet pub lunch and a chat, when I know I can’t even wash myself every day. When the reality of what I am able to do on a normal decent day without any pressure or any change to normal routine is minute compared to what a healthy person could and does do. Let alone trying to put on a semi normal face and perform as a battling through it, living a full life despite CFS type person.
I know this is a massive rambling blog. I want to be succinct and I want to show you how positive life can be even with this illness. But at the same time I am often full of incoherent thoughts, inabilities to process information and have a shitty difficult time – even if I am able to smile through it.
My brain fog was at it’s worst last Christmas at what I consider to be the beginning of this current episode/relapse. I was still trying to do too much then. I found myself not being able to remember processes that were automatic to me normally. I used to make a cup of tea without thinking too much – now I have to focus very hard and have a (large print) tick list in my mind. I even have to say the steps out loud to get through it sometimes – cup, kettle on, teabag (in the tin – into the cup), etc. Back then I couldn’t remember that after I’d been for a wee I needed to pull my pants up before my trousers and was always trying to pull trousers up first. I found myself standing at the basin for a wash forgetting what to do next. I had to write lists of every single thing I needed to do that day just to function.
Sometimes, even now, I catch myself knowing I am now going to brush my teeth and having the toothbrush in my hand but momentarily forgetting what and where that stuff is that goes on it … paste … oh yes it’s in my hand and it’s … toothpaste! Yes, that’s it.
I have been giving thought recently to why I can blog and email but struggle with the phone and face to face. Is it really a cognitive problem or is it fear?
Well it’s both. Often it’s the cognitive problem – it’s the listening, then comprehension, then reacting, then reading my reaction, then censoring if appropriate, then responding. It’s a complex process and my brain stumbles sometimes. And the times when it seems to working fine – well then it’s fear, but it’s fear of this stumbling starting up mid conversation. Once it starts the stress comes creeping in and that fuels the problems. With email and comments and so forth – I can respond in my own time, slowly, deliberately – I can read it back and I can use the delete key.
So I’m not hiding. I’m coping as best as I can. The choice for me isn’t human contact or internet contact. For the majority of my time it is a choice between internet contact or no contact.
I have heard myself say many times in social and formal situations – “Erm, no. My brain has gone.” I don’t think anyone I say it to (except maybe Paul) realises what that really means. That there’s a big fat blank empty space in my brain. It’s not just losing a train of thought – it’s losing everything, even if it’s just for a few moments (which usually it is thank god).
I’m not sure how to end this writing. I can say more, I wish I had said less. But I know I’m tired now and I feel sure I have covered the big points – I hope you have managed to unpick some of it and forgive the sloppiness.
I know it’s not the clearest writing ever – but you see I’m having some problems with my brain today.