change

Friday morning we went to doc. Explained my sudden drop in mood following the 225mg -> 187.5mg dose reduction. That I felt in terms of the sleep the reductions need to continue but obviously that means something else needs to be done for the mood.

So we have added in mirtazapine at 15mg and dropped the venlafaxine right down to 75mg and moved it to the mornings. I don’t seem to be having any serious side effects from those changes, but to be fair I have been doing a lot of sleeping which might be protecting me somewhat from consciously experiencing it.

Friday night I went to bed and didn’t wake up until something like 10:30 on Saturday morning. When I woke up the strangest thing happened.

I had sleep in my eyes.

It was a very surreal experience because I was noticing something which I know to be an actually very normal thing but I realised that I don’t know when the last time that happened was. Not just like.. oh that hasn’t happened for a while, but.. oh, it’s been a really really long time since I had that happen and I hadn’t even noticed because it’s not the kind of thing you keep track of, so you never notice that it was missing. You only notice when it returns.

So in the range of odd experiences.. I had another one. I did a “morning pee.” Like I got up in the morning after a long stretch asleep and my pee was noticeably different than it is at other times of the day. Like it is supposed to be. More rubbish, less water. But I also can’t really remember the last time that happened. For years my pee has just been a pale clear yellow and that didn’t vary no matter what time of the day or night it was. And for the record that, the fact that I was peeing as much as night as I did during the day is also something that I know I have mentioned to doctors multiple times when I have tried to talk about my sleep problems. I wonder if they all just internally attributed this to me having three children and didn’t specifically say that because they think people are sensitive about bladder issues caused post-childbearing? I’m only making this guess because the lady when I was getting the CPAP machine, the lady there was showing how to quick-release part of the tube instead of taking off the whole mask so it is easier if you have to get up for some reason, and I agreed, saying I do get up several times each night to pee, and she nodded knowingly and said something like, “Well, you’re in your mid-40s and you’ve had three children.” Like it’s normal that after you have kids you just never pee properly again? ‘Cause I don’t think it is meant to be. I know it does happen to lots of people but I didn’t think it was so common that it’s the expectation rather than the exception.

I feel very .. weak and slow. It is very much like having a bad cold or flu. Doing something relatively simple just leaves me feeling wrecked.

There are definitely classic symptoms of withdrawal happening, but they are mostly restricted to the early to mid-morning. Which makes sense since I am now taking the (greatly reduced) amount of Efexor in the morning. Sometime in the early hours my dreams start going crazy and I start cold sweating buckets and shivering like mad, I feel so cold but I am low-key nervous to try turning on my electric blanket because of how wet I feel. But also I can feel that my bed is warm, there is heat around me, and I am not actually cold.. it just feels like I am. I’ve woken a couple of times from the feeling of laying in a puddle and can go back to sleep ok unless I actually do have to get up and go to the toilet and then I really am cold because it’s like 16° in our bedroom and I’m wearing a wet tshirt.

Around 0700 to 0800 is I guess when the twitchiness starts. Just random shudders or jerks and movements of my limbs. I can kind of tell it is happening but I also can’t wake up enough to do anything about it. I have been stuck in this kind of half-awake, half-asleep, cold, wet, shivery, shuddery loop having strange, vivid dreams, trying to get myself to wake up and remember that I need to take my pill so I will feel better but not quite able. Eventually I do get there. I have asked Daniel to try to get me to take it when he is getting up instead. And hopefully that is coming before that worst part of it all and stopping it. Or it could just shift the whole process forward by a couple of hours. Who knows. I don’t like several things about this. I don’t like being stuck in that not-awake and not-asleep state. I hope that as time progresses that will happen to me less and less. But the shivering and jerking and stuff, that’s actually kind of exhausting and leaves my muscles aching and fatigued, like I have done something really intense. It’s quite a lot more effort to get myself upright and moving around. And I have this odd thing that happens, not all that much, maybe a few times a day, where it is kind of like I am dizzy and I move in an odd way like I expected the ground or doors or wall to be somewhere else, but I don’t have the spinning and lightheaded part of it. Only the disorientation and clumsy part of it. Which admittedly, does sound somewhat normal for me but just take my word that it is different to my normal clumsiness.

Part of me doesn’t like that I know I’m going to have that again tomorrow and feels tempted to just stop taking the Efexor altogether. I’m not going to. I know that cold turkey is not a smart way to do things. But I understand why people try to do it that way, even if it is so much more intense. In case you were wondering, as I was: The origin of the phrase is debated, but it’s often linked to the physical symptoms of withdrawal, specifically the appearance of skin during withdrawal, which is said to resemble a plucked, refrigerated turkey. The “cold” part likely refers to the cold, clammy skin and chills associated with withdrawal, while “turkey” might be a comparison to the appearance of a chilled, plucked turkey according to Merriam-Webster. I don’t think I look that bad though. But I know a gradual wean is much healthier, and I have already been feeling my heart beating sometimes, so I know that I don’t want to put even more pressure on my body and nervous system. Never claimed to be a perfectly patient person though.

It feels a little strange to be talking about withdrawal like that. Because it’s usually referred to in association to someone that is trying to break an addictive dependence on a substance, and – from what I’ve seen, anyway – much less often in terms of people who are simply trying to end a dependency that does not have any aspects of addiction to it. By which I mean that behavioural part that becomes irrational and unsociable in order to continue to have access to whatever the substance is, rather than just being a person who has taken a medication that was prescribed to me in the manner that I was instructed to by my doctors and pharmacists.

I know a lot of words but often I still feel like I do not have words that are adequate to express what is in my head and heart. I think in some way that is because feeling happens at a level of .. I don’t know, consciousness? Awareness? Existence? A level that is more primal than language. Language is something we have invented but feeling is something that we are.

The last while has been broken up into sections of two weeks. It’s two weeks since the notfuneral. That was two weeks since he died. That was two weeks since he went to the hospice. Saying it like that makes it seem like not a very long amount of time but it hasn’t felt like it. Is it really only 6 weeks since that disaster where everything got set back to zero? Six weeks that we spend waiting for the next set of appointments with the next person we have been sent to see, trying not to worry that they too will tell us that whatever is wrong with Stephanie is not their problem. And in the meantime having the not dying and then the dying and then all that stuff.

The not dying was worse than the dying, to be honest. Stephanie and I went to visit one day and it was pretty terrible. I mean, I thought he looked like shit at Nanna’s birthday. It was so much more when he was laying in a bed, literally skin sagging on bone, hands laying awkwardly because there was no muscle or energy left to put them where they usually go. Mouth open. Eyes neither open or closed. And it seemed like he had some sort of awareness of us but it was hard to tell for sure.

We make the choice to end the lives of other creatures that we believe are experiencing more pain than joy in life. We decide, they cannot tell us. They cannot tell us that they want it to stop. Making this choice for them is considered the correct and compassionate thing to do. Yet people who are capable of expressing that they want to do that are not allowed. Why has human life become so held on a pedestal that the thought of ending it – whether before it happens or at the end of its normal course – has become so taboo and so abhorrent? Sometimes it is the best and most appropriate treatment. It is considered a human right to be able to make our own health and medical decisions. So why is that right removed when it is needed most?

It is strange now that it is finally over. I don’t feel unbearably bereft or something that seems like it will never get better. I think in part this comes from having been expecting and preparing for it for so long. And in part because I don’t believe that this is the end of the adventure. I find myself thinking about numbers. He was a month short of being 87 years old. When he was born, in England, in 1929, the life expectancy for a male baby was about 55 and a half years. So when he was born, it was expected that anything he lived past early 1985 was a bonus. A thirty-one year bonus is pretty good, I think. When they watched the video my mum made Abigail commented that she didn’t know he was a twin. It made me wonder if his mum knew, before they were born. Obviously, no ultrasounds to tell you that, but on the other hand, the midwives were probably a lot more experienced at diagnosing position and number of babies by palpating.

Another number: 80% of the people in our household have had a grandparent die this year. The 20% has one remaining living grandparent. (Luckily for her, I don’t think this statistic has great relevance to her likelihood of dying any time soon.) I am 35 years old and my first grandparent has died. For my children, that happened before they were even born. Daniel’s have been spread out.. I think one died before he was born, one when he was a kid, one a few years ago. I still have the most living grandparents in our house.

jaded

i want to believe

documenting

two weeks