Until the above has become a hit country music song, I’m keeping it for the title of this blog post. Today has been challenging so far and I’m sitting down to write in the hope that being in a foul mood will enhance the creative process. I await your feedback.
On the whole, things here have been continuing to improve and I have been feeling positive. Last week, I did a half-day of work every day – the first time that I have worked every day from Monday to Friday that I can remember. I’m being sure to rest when I get home and to go to bed early, even if the balmy weather and my overactive mind prevent me from going to sleep straight away.
Although I still find work very tiring, I don’t seem to be getting any horrendous post-exertional crashes. Which is nice. I even managed to have a couple of sips of wine with dinner the other night, then realising that I don’t really miss drinking wine all that much anyway.
The big achievement this week has been the completion of the weaning-off process of my antidepressant. I’ve been taking a medication that is particularly difficult to discontinue owing to the very unpleasant withdrawal effects (my favourite quote from a mental health forum I happened upon: “worse than coming off crack”. I wouldn’t know). My GP, when I asked him what he thought about me taking a low dose of a sedative medication to help with insomnia while weaning off my regular medication, advised me to stop my regular medication straight away and “let it wash out of your system” before starting to take the other one. Luckily, I already knew that this was terrible advice* but my heart goes out to patients who take this misinformation on trust and proceed to feel hellish when they stop their antidepressants suddenly.
Because I’ve got some experience of working in psychiatry, I knew that it would take months for me to slowly reduce my dosage every few weeks until I could stop altogether, a laborious process which involves opening up the capsules and halving then quartering the contents. For the last four days, I haven’t taken any antidepressant medication at all. I do feel more awake during the day, although because both weaning off the medication and recovering from the latest relapse of ME have been a slow parallel process, I’m not quite sure which is responsible for this improvement.
Going from the tiniest dose of medication to none seems to have been the hardest step down. Perhaps this is partly psychosomatic, perhaps it’s because the brain has to adjust to having no synthetic neuronal blockers at all milling about. Whatever the reason, over the last couple of days I’ve been experiencing the most notorious discontinuation symptom, the “brain zaps”. These are described by some as electric shock sensations inside the head. I would describe the feeling more as though my head were a maraca and my brain a loose collection of the fine beads inside, being shaken around without my head actually having to move. If you can possibly imagine that. I may need to work on the analogy. Actually, if you’re old enough to remember, think of shaking an Etch-A-Sketch to erase the markings. Yes, the brains feel like the stuff inside an Etch-A-Sketch being shaken around. You’re looking at the new Poet Laureate.
The good news is, these withdrawal effects are temporary, even if they are unpleasant, and should subside after a few weeks. What has bothered me much more is something that I mentioned a few weeks back when I was describing a return of a more emotional response to everyday situations. This started as a bit of welling up at something on the telly. This morning, however, I didn’t just get a bit teary. I got full-on furious.
Those of you readers who have been kindly following this blog for a while may remember that I share my home with my mother, who has been doing a sterling job of looking after me and my daughter when I’ve been really sick. The thing is, thankful as I am that I have this support on hand, I hope that I’m not always going to need it and furthermore, I don’t like needing it. I get very frustrated that I’ve needed to rely on someone else. The drawback of having your parent as your carer when you are an adult is firstly, that you can feel as though you’re a child again and secondly, that your parent treats you as though you’re a child again. As far as I’m concerned, this is not a recipe for a harmonious relationship. Add in the extra dimension of being a parent yourself and having to surrender your parenting to someone whose own ideas of parenting you don’t wholly agree with, and the dynamic becomes rather complicated.
This morning, the accumulation of a thousand pinpricks of criticism and interference from my mother came to a head when I was admonished for waking up my (already awake) daughter at eight-thirty as I walked past her bedroom to the toilet. Because my mum felt that she needed a lie-in. The passive-aggressive “Who was it who woke her up when she needed to sleep?” as my daughter yawned at the breakfast table was enough to get my hackles up. I set off on a futile course of trying to explain that I hadn’t done anything wrong and I refused to be told off for walking around at a perfectly reasonable hour in my own home.
“Shut up!” said my daughter, rebuking me for talking back to her nana.
“Don’t you dare tell me to shut up!” I replied. My mother continued to talk at me. I had stopped listening and it was just an annoying voice going on and on. I silently finished my breakfast and cleared the cereals from the table before retreating to my room to get dressed. My daughter scuttled in while I was naked and proceeded to try to kick me up the backside, something she knows I find hugely irritating. Children seem to have a special talent for identifying your triggers and exploiting them when you are especially harassed to produce maximum annoyance. Except me, of course. I never did this…
“I’m getting dressed, ” I said, tersely. “You need to go and get dressed too. Go on, go to your room and get dressed. Or we’ll be late meeting Grandad.” This was greeted with the “annoying grin” she has learned from her cousin, accompanied by a monotonous snigger.
“I would like some privacy please,” I said in my sternest mum-voice. “Now go and get dressed yourself.” Ignored. Perhaps being naked took the edge off my authority. She scooted round the back of me, lifting her leg as though to boot my backside.
“Right, GET OUT!” I yelled. My mother came in, fussing over my daughter.
“Ahh, why don’t you just give her a cuddle?” she cooed.
“A CUDDLE? I DON’T WANT TO GIVE HER A CUDDLE. SHE’S BEING REALLY NAUGHTY. IT’S NOT ON!”
“Shut up!” My daughter took the towel and the clothes from the end of my bed and threw them at my face. That was it.
“GET OUT! GET OUT, BOTH OF YOU! I’VE HAD ENOUGH!” I had had enough. I was so angry that I could have gone and smashed all the plates. But I didn’t because I do have some self-restraint. My mother retreated from my meanness. My daughter crawled under my bed and repeatedly told me to get out of my room. I finished getting dressed and went downstairs to try to explain to my mother why I feel so angry and frustrated. Does she think I want to be ill? Does she think I want her doing things for me that a normal adult would do for themselves? Does she think that because she’s been looking after me, this gives her the right to tell me how to do everything, to pass comment and criticism on the tiniest thing that I do? Does she understand that I feel trapped and I don’t want this to be the rest of my life?
“I’m sorry. I won’t say anything at all then.” No, I don’t want you to be mute. I just want you to understand where I’m coming from.
And there’s the rub. We can’t “make” other people understand our point of view, our feelings. We can’t “make” other people act a certain way. What we can do is gain familiarity and control of our own reactions to other people, by learning what our triggers are and by recognising how we respond to these triggers. I practised today’s mindfulness meditation session still feeling furious, with tears streaming down my cheeks and a turbulent feeling in my chest. But the thing about allowing these feelings and just letting them roll was that it was very easy to “notice the resistance”, as Andy from Headspace says. And once I noticed the resistance and the pain that it brought about, I realised that it was the resistance to my anger that was causing the anguish, not the anger itself.
Now I’m off the antidepressants, getting used to my brave new, unmedicated mind is going to be a voyage of discovery. It’s started off a little choppy but I’m sure the waves will settle. I hope so, anyway, because getting angry and upset is exhausting for someone with ME. Or maybe it’s the resistance that’s exhausting.
*Please note that the recommendations for stopping an antidepressant or switching to another vary depending on which antidepressant you are taking and which you are switching to. If your GP’s advice isn’t clear or if the switching regimen is complicated, ask them to write it down for you. There are tables for stopping/switching antidepressants on the NHS website. Please do not stop taking antidepressants without consulting your doctor.