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Sleep, Einaudi & escaping the prison…

It’s nearly midnight and I can’t sleep. Again. Not even the melodic strains of Ludovico Einaudi can soothe my soul tonight. I don’t think its even been a month since I last wrote about this topic. It seems to be a recurring theme in my life! The desire to sleep is there, the need to sleep is present but the act itself..? Nope. Not happening.

Someone suggested to me, that perhaps I’m overthinking it and that’s why it won’t come. It’s a fair observation and I said as much, but its hard not to dwell on it when you’re lying in bed. Awake. The sounds of steady breathing all around conspire to make it even more soul destroying. Who’d have thought breathing could have such an effect on another person!

If I think about it long enough (and I have, frequently) then I conclude that the act of not sleeping in itself, is not the issue. The real problem is the next day. This is when the fatigue really sets in, The inability to think clearly becomes apparent and the temper gets just that little bit shorter. All the while there is a niggle at the back of the mind that the situation is not only a repeat of yesterday, but perhaps it will happen again tomorrow. I understand the need to detach from the past and the future and just be present in the, well, present. Yet, I find it difficult and have not yet found a method of disengagement that consistently works for me. For example, I could listen to Nuvole Bianche on loop for hours and I would feel my shoulders drop and my mind sooth and my body sway. Calmness would reign supreme in my soul. The gentle tune lulled me to sleep and was often still playing when I woke. While I can still count it as one of my all-time favourite pieces of music and it has been for well over 10 years now, I can no longer guarantee the result. Yes, my fingers still airplay the notes and my mind strives to be still, but the elusive slip into sleep remains evasive.

I recently read Edith Eger’s book The Choice. She shares her stories of surviving the Holocaust and how she built a new life. She recounts her experiences with those suffering PTSD and how she helps others to face their traumas and heal. There are a lot of fascinating, disturbing, remarkable and uplifting experiences that she shares, but there are a few lines that have really stuck with me. One of them is “We can choose to be our own jailors, or we can choose to be free.” I’ve turned that phrase over in my mind a few times while I’ve been waiting for sleep. Our minds are incredibly powerful. Is Ms Eger correct? Unless we confront that which causes us suffering we can never heal?

That’s a big subject and maybe I’ll get to that one day. But, in the context of sleep, or lack thereof, I’m trying to find the root of the sleeplessness, so I can confront it, learn from it and then banish it.

I like to think I’m a fairly intelligent person, open to new ideas and the like. So, I have tried the usual initially suggested methods of trying to get more, better quality sleep. Quality is more important than quantity as is so oft the case. I’ve spoken about them before here, so I’ll not labour the point again. But, I’m still to find the piece of magic that will work for me. I know my mind is busy and I suspect that is the main cause of my inability to sleep at the present time. I can’t seem to stop my mind from dwelling on my current situation and much as I try to find the positives in most situations, I’m struggling to see how me and MS and me and dry rot, are ever going to be friends.

Epilepsy and I have come to a sort of mutual understanding. We live side by side in an uneasy alliance. But epilepsy is a jealous bedfellow. The fatigue MS causes, is antagonising my epilepsy. Fatigue is a pretty major factor behind my seizures, another reason, probably the main reason, why I need to get some sleep. I don’t think we even need to go into the whole stress angle of this situation! It is one helluva vicious circle that I’m caught up in. And, I just don’t know how to break it.

So let’s talk about drugs for a minute. Sleeping pills specifically. To pop or not to pop that is the question. I’ve always tried to avoid taking prescription sleeping tablets. I don’t really want to take them being the biggest reason! I’m a little scared of them if I’m truthful and I would rather find a natural solution to my troubles. That said, I recognise that they have their place and that they can be a helpful aid to sleep for some. Yet, I can’t help but think that the sleep they induce isn’t real sleep. It’s kinda fake. It doesn’t seem like a natural sleep, so while the quantity of the slumber may increase; what about the quality? About a month into the saga that has developed into MS (& still possibly something else besides) I wasn’t sleeping at all. Nothing. Nada. Zilch. At the same time, I was experiencing what can only be described as indescribably weird sensory issues. I was prescribed a medication that would help with the sensations (i.e. it would dull them) and as one of the side effects of the drug is drowsiness, it would help with my sleep. And it did. I slept for about 15 hours. I woke up feeling sick, disorientated, lethargic, scared and wishing I’d never taken the darn thing. A one-off perhaps? Maybe, but I don’t know that I’m willing to take that chance. Yet, perhaps desperation will take me there.

Well, I’ve got more questions than I have answers. I’m desperately trying not to worry about the rot and all that fixing that will entail. I’m trying hard to accept that MS is now part of my life and I just have to get on with it. I’m hoping that my epilepsy will settle down and stay quiet for a while. I don’t know how to deal with just these 3 things and still switch my mind off in order to sleep. Yep, I know I can’t control much of it and yes, the logical part of my mind says “if you can’t control it, then don’t worry about it” but the part of me that needs to understand just how to do that, is not getting it. Not getting it at all.

So, I’ll be the one who is awake with Einaudi, chamomile tea and surrounded by the sounds of steady breathing.

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Rotten luck…

So, just to add to my sad little tale of woe, it appears I now have dry rot. Well, not me personally, but my flat. Although, it seems like quite a good analogy for my brain!!

According to Wikipedia (all hail google and Wikipedia), dry rot is “wood decay caused by certain species of fungi that digest parts of the wood which give the wood strength…”. Yes, this is very much sounding like the MS & epilepsy that ravages my brain and body on a constant basis…And the treatment? Removal of the offending, affected wood and chemically treating the surrounding areas. Sounds a bit savage, but that is the “cure” for certain types of epilepsy and both afflictions are “controlled” chemically. Oh and no, it’s not covered in a standard buildings and contents insurance policy.

The whole dry rot condition is brutal, devastating and requires treatment. Expensive treatment. Epilepsy and MS are much the same. If you’re lucky though, the treatment is free.

Dry rot tends to be an invisible condition. Usually, you don’t know you have it until you want to redecorate or renovate some part of your house (or, as in my case, your neighbours do). As with epilepsy and ms, it’s usually something significant that triggers the eventual diagnosis of the disease. You can’t always guarantee a person’s health based on their physical appearance. These are just 2 so-called invisible illnesses, there are so many. In my immediate family, there is epilepsy, ms, depression, congenital heart defects, Sjogren’s Syndrome, arthritis and dementia. Everyone knows someone who suffers from an invisible illness, although they may not know it. Diabetes, lupus, lime disease are just a few others, but it’s mental health issues that spring to most people’s mind when the term is used.

The last few weeks have been hard. (I seem to say that a lot at the moment!). The dry rot situation left me teetering on the brink of I don’t know what last week. I was meant to meet the builders but instead, I begged my brother. We were going to go together. My brother arrived at my house and I lost it completely. I had a meltdown of epic proportions. Floods of tears, hyperventilating, snot, inability to talk coherently and a steady unwavering conviction that I couldn’t take any more. My brother hugged me for the first time in 46 years (we’re not good at emotions in my family) and he went to the meeting alone and declared he would deal with everything, the builders will deal with him and all I have to do is move out when I get told to, oh and pay for it.

My brother seeing me in the state I was in was a helluva shock for him I think. We’re not good at emotions and we’re all guarded with each other in my family. I find frustration and anger easier to show than fear. It was that fear that my brother got the full brunt of last week. I don’t think for a single second he thought his sister would be crying on his suit jacket that day. This same brother who won’t sit on my sofa in case he gets a cat hair on him, was dealing with me dripping tears and snot instead. Kudos to him. He stepped up and was there when I truly needed him.

There is a point to this rambling about tears, snot and diseases you can’t see. We don’t always know what a person is going through. We don’t know what battles they face on a daily, hourly or minutely basis. We don’t always know what drives certain responses that are sometimes inappropriate. We don’t always show how we are truly feeling to those that really need to know. There is a myriad of reasons for this.

We are often quick to jump to conclusions and even quicker to judge. My house shows no outward signs of being ravaged by rot, but it is. I show no outward signs of being at the mercy of one disease that could kill me at any moment and another that could leave me in a wheelchair, but I am. My dad said to me many many years ago that I had ice water running through my veins. My brother saw last week that I don’t.