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The Dark Days of Summer…

I’m finding it hard to write at the moment. It’s not that I don’t want to; it’s just I don’t know how far I can go before I lose myself to the darkness again.

It’s ironic that the beauty of this UK summer is coinciding with the darkest depression I’ve had in a very long time. It seems that everything is coming together at once and the relentless waves I usually feel my depressions to be, have grown into an almighty tsunami. But I don’t know which metaphorical earthquake has triggered it.

I can’t lay the cause at one door. I’m not sure why I’m trying to. But I can’t just do the whole “acknowledge and accept and let it pass” thing. Forgive me if you will, but I just find that a little bit too touchy feely for my current raw state. My regularly burning skin is just far too sensitive to take any kind of manipulation and I really don’t want to explore what’s in the recess of my mind. I find myself scared of it.

I used to suffer a recurring dream when I was little. It involved the wardrobe in my brother’s room, the non-existent basement to our house and a carpet of writhing, hissing, spitting snakes. I believed that if I stood on the brass makers-plate on the floor of the wardrobe, it would open up and I would drop into the snake pit. I would scream and scream but no one came to help me. I never ever found out what happened to me because my screaming was real and I’d wake myself up. You’d think I’d have a problem with snakes given that nightmare, but I feel neither one way nor another about them. A certain fascination is there, in that I want to learn about them, but beyond that they hold no fear for me. I still think about that dream, a good 30 years since I last had it. I think the snakes were a representation of my thoughts and the basement is just the all-encompassing darkness of the mind. I spent the whole time we lived in that house terrified of a brass plate. It’s now the snakelike tendrils of the thoughts and processes of my mind that occupy my thoughts.

My soul isn’t doing somersaults at the moment, Rumi. Depression came to tea and appears to be staying for dinner. The heart sitting on my sleeve is telling blatant lies through rose-tinted lenses and I’m carrying a shroud of fear and hopelessness that I’m praying is invisible. Bit daft really, when I’m penning a post about how depressing depression is.

And yet, I still get up and function. Traditional descriptions of depression would say that the darkness is all encompassing, there is no functioning, there’s just black. However, this is the 21st century. Most of us who suffer don’t fit this traditional assumption of what depression is. There are just too many facets to it, to adequately pigeonhole all of us who live it.

Why am I able to go to a job and successfully do it if I’m apparently suffering from depression? Well, there are a few reasons. Firstly, it makes me feel more “normal”. Secondly, it’s a distraction. Thirdly, it’s my way of fighting back. These are the highlights for me. Many others don’t have the luxury of sick benefits – they don’t work, they don’t get paid. Many others are simply unable to get out of bed, get out of the house, get on public transport, deal with those so-called simple things that many don’t even think about, they don’t need to.

Depression isn’t a one size fits all illness. It strikes everybody slightly differently. Everybody deals with it slightly differently. We do what we have to do to get through each day. I make no apology for that.

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MS, Tomatoes and Jackfruit…

About 3 hours ago, I took my very first dose of MS medication, alongside tablets for epilepsy and for depression. Apart from the fact I rattle every time I move, I also now look like a tomato and feel like I’ve eaten a pound of Carolina Reapers. I am on fire! My face feels like it is burning and a red flush has appeared head to toe. Apparently, this is normal. Awesome. (Insert appropriate level of sarcasm). I absolutely won’t be leaving the house today, but if you happen to see me later in the week then please feel free to snigger but if I see you giggling, I may have to unleash the nuclear arsenal that is now at my disposal.

Many of you are probably aware that I’ve been changing my diet to see how that would/could help me feel stronger in order to deal with killer tomatoes – sorry, multiple neurological conditions. I thought I would give you all a little update on how that’s going.

About 3 weeks ago, I more or less completed my transition to a plant-based whole food diet. I have cut out meat, fish, dairy and eggs and have greatly reduced my dependence on processed foods. My kitchen is in a permanent state of chaos but I’m loving cooking again. Experimenting with different flavours and textures. I’ve tried not to be too evangelical about my new eating regime and I’m ok if the odd splash of milk or egg has crept into my food through the ingredients in another ingredient (think dried spices, condiments etc), so I won’t call myself a vegan more that I’m eating a vegan-like diet. Anyway, I’ve digressed. So, dietary habits changed, I went to Krakow for the weekend with my non dairy-, meat-, egg-, fish-free Mother. I had previously decided and agreed with said parent that I wouldn’t force my eating habits on her and if that meant eating the aforementioned foods then so be it.

While I did manage to avoid meat in the main and fish entirely, dairy and eggs did feature quite heavily. As I was eating them, I can’t say with my hand on my heart, that I’d actually missed them. This surprised me. I thought I would really start craving them and go back to my previous habits, once I’d savoured a mouthful of scrambled eggs in butter or cheesy pasta sauces. What actually happened sealed my confidence in my decision to change my habits.

After 3 days of eating as I used to, my skin erupted in large, hard, sore lumps under the skin on my face (not having much luck with skin just now!). My digestive system went into complete revolt and I spent a full day in the hotel unwilling to be far from a bathroom. I had to leave my Mother to her own devices and I’m relieved to say she managed not to cause any diplomatic incidents. To me, this could only have been a reaction to the rich foods that I’d spent weeks eliminating from my diet. An egg and cheese overload, previously welcomed with open arms by my stomach and skin, was no longer welcome. I was actually craving something green and fresh.

Who’d have guessed?! Me, a person who previously had very little control over food and happily would eat whatever was there, no longer wanted or craved that food. Even if this new way of eating doesn’t have any demonstrable effect on any of my neurological conditions, I now have evidence that proves, to me at least, that it is actually better for my system. It is less inflammatory on my innards and it doesn’t cause my skin to be sore to the touch and lumpy!

While it only took my irritated insides a couple of days to settle down once it had some fresh fruit and veg, my skin took about a week to stop being a moody teenager and start getting back to, what is now, my new normal.

With a new sense of why I had changed my diet, I attacked the kitchen with a vengeance. Homemade this, homemade that, freezer full, grocery bill cut, I felt a bit smug. Well until the sheer volume of washing up hit me! Oh, how I long for a dishwasher! I decided to experiment with a completely new ingredient for me – Jackfruit. I’d tasted it when out for dinner with a friend but had no clue what it actually was, where you go to buy it and how to cook it. Google can definitely be man’s best friend. Jackfruit is a species of fig that is native to South India but is found throughout the tropical regions. Explains why it’s not often seen in Scotland. Apparently, it’s also the national fruit of both Bangladesh and Sri Lanka! Who knew? Not me.

Having established that the most Scottish-friendly way to get the fruit is from a tin and sourced a location for buying it, I brought this wondrous new food into my home. My first experiment, while not disastrous did provide me with a few lessons. Unlike other tinned fruits, jackfruit takes a bit more prep once its decanted. Don’t buy the kind in syrup but go for the one in brine and be prepared to have your mind blown. Ok, so that’s an exaggeration, but once I got the sizing and timing for the cooking, even if I say so myself, my BBQ Pulled Jackfruit (think pulled pork texture and look) was nothing short of awesome. An unmitigated triumph. A bit of a faff, but easy and a longer cooking time than I would have liked, but oh so worth it. Sweet, sticky, smokey awesomeness on a plate.

So while I wait for the test results that I talked about last time, MS and Pizza. Here we go again…,and now knowing that I’m being tested for Ocular Sarcoidosis (yes my medical file just keeps getting bigger), I shall comfort myself with my new find and probably overdose on BBQ Pulled Jackfruit.

I think tomatoes will be absent from my meals for a while though…

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Epilepsy and a Blot on the Landscape…

Over the past few days, I’ve been reminded again (as if I needed to be) as to just how much daily medication changes me. Due to a mix up that’s just too farcical to go into, I didn’t have my proper dosage of either meds that I take for a just a couple of days. Just to be clear, I take daily anti-epileptic drugs and daily anti-depressants. Anti-everything in order to live a pro-life! Maybe I’ll get to how that makes me feel later. I know medication changes me. Those of you who have been on this blogging journey with me for a while, will know that I struggle with being constantly medicated. 

After just 2 days of less drugs than I normally take; this is how I feel. Remember this was a forced withdrawal, if you like, this is not a gradual, doctor-sponsored reduction in medication. Cold turkey.

  • Disorientated
  • Unable to make a decision
  • Upset & weepy
  • Headachy
  • Weak
  • Scared

I’m functioning on the periphery of my capabilities. I know what to do and I know how to do it, but I’m terrified that I’m doing something wrong. The world around me has slowed down and I feel hyper-sensitive to everything. The fear of fitting is so much worse than a seizure itself, in my opinion.

When I woke yesterday morning, I felt OK. Lying in bed, posting on FB and basically ok. Then I got up. Then the world shifted ever so slightly out of focus. I knew that I was going to the chemist to sort some meds, but I also knew that this was not going to be a quick “take a few pills you’ll be fine” situation. That’s the rub. So, went through the morning routine, went to the chemist, became irked at the assistant’s inane chatter and hyper-enthusiasm, but squashed the frustration down deep so he didn’t see it. I got on the bus to head to work. The weirdness spreading through my veins reached a new height. I didn’t want to be on the bus, I was scared I wouldn’t know when to get off it. I got to the office and explained to my boss that I didn’t feel right and I explained why (my work are good about my epilepsy, can’t fault them for the support they give). My boss asked me if I wanted to just go home. I didn’t know. I couldn’t decide whether to stay or go. I didn’t know what was going to be better and the frustration at that was bubbling up. I told him I didn’t know and couldn’t decide. He asked me if it was ok if he made that decision for me and he sent me home. I’m grateful for him for doing that. I took my laptop and I went home. The bus journey home held the same fears as the bus journey to work had. I don’t know why I didn’t get a taxi. I knew I probably wasn’t going to fit, I was too aware for that, but I also knew I wasn’t making the best decisions of my life. 

I spent the rest of the day doing little bits and pieces of work that weren’t particularly taxing. I went to bed early and, of course, I didn’t sleep well at all.

So, how do I feel today? Well, I’ve had my meds, but I still have a weirdness (wish I had a better description of that feeling) that’s hanging around. The world has speeded up a fraction and I’m probably a bit more on the ball than I was yesterday. Fear is there and there is also a bizarre sort of throbbing heaviness in some of my muscles.

Think I’m in for another rough day.

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Epilepsy and Process…

There’s a process to be gone through. A series of setbacks followed by a few victories and then a levelling off. Repeat.
I’m listening to Max and Benny causing chaos. There’s just been an enormous crash, followed by complete silence. Now there are small tentative noises. I know what caused the crash so I’m not concerned. The noiseless aftermath confirmed the boys are fine. They’re fighting again now. I can hear them charging through the house. Squealing as they go. How can such small little things make so much noise?! Another crash. Now, they’re slinking into the room I’m in – mischief managed as Harry Potter would say! Oh, the joy of kittens. They’ve been through a process – chaos, the victory over the catnip-filled mouse, followed by a nap. 
Epilepsy is similar. Seizure, recovery, life. Seizure, recovery, life. It’s a process. The main components of the process don’t change, the route through them does. At least that’s the way it is for me. The seizure occurs. The depression and the fatigue and the physical pain comes next. Small pockets of hope, chinks of light appear and grows slowly in to day-to-day life. That’s the cycle. That’s my reality. I know the score; I know how it’s going to be, yet that doesn’t make it any easier.
My very first fit. Mr Marshall’s English class, first floor of the upper school, 29 years ago. A battery of tests, weeks in bed, a darkness I now know to be depression, back to school. Second fit. The lounge room of my parents home, 27 years ago. A new round of tests, a diagnosis of epilepsy, a bout of blackness, A-levels. Latest episode. My own home, 4 months ago. Another round of tests. An incredible depression and back to work. Not much has changed in nearly 30 years. The only real difference is that I now know what depression is!
It’s a process, yes; is it predictable then? No. I live every day of my life wondering when the cycle is going to start again. That’s not to say that I think about epilepsy 24/7, I don’t. But it’s a consideration in everything I do and it’s there in my head, literally and figuratively, every single day. I don’t believe a diagnosis of epilepsy means the end of life as you know it. I truly don’t. Life doesn’t come with a guidebook, but it does come with a set of obstacles. You have to navigate life the best way you can. Admittedly, I don’t always get it right! Show me someone who does?! My life is predictable in its unpredictability. My emotions sometimes (often!) get the better of me. But my emotions prove to me I’m alive; I think they probably prove something entirely different to those around me……..
It took a great deal of time, decades in fact, for me to allow myself to not feel ok. It’s not weak to show emotion. It’s perfectly ok to not feel ok. I wasn’t raised to show emotion. It’s not that I was not allowed to, or that I was afraid to, but more that I didn’t know “how” to. My family wasn’t demonstrative. I didn’t see those around me show feelings, so I guess I didn’t really know what feelings were. Everything was internalised. The first time I tried to express how I felt about my epilepsy, I was berated for being pathetic. The second time, my trust betrayed. It was decades until I tried again.
I didn’t understand the blackness and I didn’t know how to get the feelings inside me, out. I struggled my way through the period between the fits and the return to stability, blindly. I didn’t know how to explain the feelings, so I didn’t. I shredded myself inside. I smiled as I died. Lord forbid that anyone knew how utterly despondent I felt. I made it through the darkness each time not because I was able to articulate how I felt and talk it out, but because I was able to swallow it down and, to all intents and purposes, just pretend it wasn’t happening. To this day, I struggle to verbalise my feelings. Journaling was my only outlet as I turned from teen to adult. Writing it down is part of my process. It wasn’t until last year that I started to share those words.
I’ve said before that the physical side of epilepsy doesn’t scare me so much as the emotional. It’s no wonder really. The last episode, as I wrote before, has been a complete mind game due to the circumstances bearing a striking resemblance to those in which a relative passed away. The “jokes” I’ve endured about the coming to in a pool of my own vomit, and “haven’t we all been there”, have been hard to stomach sometimes. It’s not meant to be disrespectful, rather it’s an attempt to show empathy. I’d probably say something similar if the situation was reversed. Bruises disappear, cuts heal, emotions though, they need processed.
So, today, I’m heading upwards, back to the level part of the playing field. The shadows of my mind, receding a little. The cycle is almost complete, ready for the next rotation.

3

Epilepsy and Choices…

As suspected, the blood tests revealed nothing. So, I’ve had to give more of my blood for more tests. These ones basically just to confirm the last ones. I feel fobbed off.

Options though. I have options. We’ve always got choices. That’s true. So, no-one is bothering to explain what my options are, so I guess I’ll have to work out what they are for myself and then make some choices. Epilepsy has not robbed me of my ability to make a decision. Although, Epilepsy has never been a factor in how good a decision I make!

I’ve done the right things. I’ve been through the medical profession and have got not very far. The biggest issues are: epilepsy (doh), headaches, depression and sleep issues.

Well, let’s see. They’re obviously all linked. I don’t have 4 individual problems, that can be sorted with 4 different sets of meds. I have a inextricably linked set of health problems that need to be regarded as a whole. My initial feeling is to go back to basics. Strip myself clean and start over with the knowledge that I have.

AEDs. Anti-Epilepsy Drugs. Anti-convulsants. Choice: keep taking them or stop taking them. What are they currently doing for me? Well. No-one knows. Are they preventing the excess electricity physically manifesting into a full blown seizure more often than I currently do? No-one knows.

Lack of sleep, to me, is the biggest issue. I’m so very tired all the time. It certainly doesn’t help with the headaches and I suspect it’s a pretty big contributing factor to my depression. It’s also a contributor to my epilepsy. When I’m tired, I’m always more prone to fitting. I’m tired all the time at the moment. What choice do I have here? Sleeping pills? Are they a choice? They’re a consideration. Truthfully, they’re not a road I want to travel again. They scare me. What else can I do though? What alternative is there to drugs when it comes to sleep? I need to do more study. I need to do more investigation. There has to be alternatives to a drug induced sleep. I don’t know if it will be dietary, but that’s definitely a route I need to investigate.

To my mind, even in its broken state, lack of sleep, good quality sleep, is my biggest problem. Everything else is linked and would be more manageable if I could get a handle on my sleep. But how? How do I do that? Nutrition? Exercise? Drugs?

I’m exhausted and exasperated. I don’t know what to do next and I can’t think clearly in order to make a decision. Helpless is how I feel. Helpless. That makes me feel pathetic and that’s a feeling I don’t like one little bit.

So, I’ve got some decisions to make. Decisions that could affect the rest of my life. They can’t be taken lightly. I’m scared.

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Epilepsy and Time…

It’s been a while since I’ve written. Truthfully, my mind has been battling epilepsy in more ways than one and my ever-present tendency to depression has been growing stronger as we head toward the festive season….

I still don’t understand the letter from the consultant. I asked for clarification and was told that, yes, my brain is “shedding excess electricity virtually all the time”. My questions surrounding the link with sleep were studiously ignored and my plea for help in understanding pretty much dismissed out of hand. In the 10 months since the last major cluster of fits, I’ve not really moved forward at all. Time. The great healer?

Nah. The passage of time, for me, has concentrated the feelings. The more time has passed, the more frustration has built up, the more fear has squeezed at my heart and the more blackness has wrapped itself around my soul. Time maybe is a healer, if you are able to forget or accept. I can’t. I need reasons, I need understanding, I need to be able to rationalise out what I’m feeling.

The fear I work so hard to combat every day is winning. It’s clutching at my throat and slashing through my mind. I can’t trace any thought path without coming up against a rip of fear through my mind. Scared to do something and terrified to do nothing. I never envisaged that my life would be so filled with fear. 43 years of age and terrified of the “what-ifs”. Epilepsy. Why me?

I hate that expression. “Why me?”. It’s so whiny and moany and self-pitying. Yet, it’s prodding it’s bony fingers into my grey matter and tapping out the “why me?” beat. I have no real reason to feel sorry for myself, so why am I pointing myself down that path? I don’t know. I’ve done the tests and asked the questions and no-one is giving me answers to the new set of questions. I’m telling them I’m tired all the time and asking for the link with my epilepsy to be investigated, understood, hell even just acknowledged and getting nowhere.

So, I find myself at the “what’s the point?” stage. Time is marching on, keeping religiously to its mission, and I’m out of step with the beat. I can’t keep up with it. I want to yell at it to just stop for just a few beats so I can catch my breath, recalibrate my mind and give myself a chance to think. Time doesn’t work like that though. Time actually doesn’t exist if you think about it. Time is something that man created as a measure. No-one mentions 24 hours or says “I’ll be there in an hour” in the bible or the Koran or in Buddhist texts do they? A day was the passage of light to dark to light and it changed with the seasons. Right now, I need that lack of time. I need to be able to live with what nature has been doing since the big-bang or the creation or whatever it is that you believe. But before I know it, the alarm clock will be screeching at me, because it has been decreed that I must be at work by a certain man-made time. I must eat lunch between a certain man-made time of day, I must finish a task by a certain time, I must pay a bill by a certain day. Oh yes, I know, anarchy would reign supreme if we didn’t measure time, but if you stop to really think about it…, if we hadn’t began to measure time the way we do, would anarchy reign or would we just live in mute acceptance at the passage of light, dark and season the way we live with unthinking acceptance of markers of time?

Right now, I need a reset button. I need some days or maybe a whole season to get to know me again. Not depressed-Kirsty, not epileptic-Kirsty, not worker drone-Kirsty. Just Kirsty. Time has made me forget what it’s like to be me.

0

Epilepsy and Lies…

My thoughts have been turning once again to my jigsaw. My life puzzle.

I got the results of the sleep-deprived EEG. I say results, what I actually got was an unsigned letter from the consultant that said “her sleep deprived EEG confirmed a liability to generalised epilepsy, with numerous bursts of seizure activity, none of which were associated with any clinical manifestations. This result is helpful and confirms the diagnosis.” What the merry-hell does that mean? What diagnosis? What numerous bursts of seizure activity? When did this seizure activity happen? When I was asleep? When I was falling asleep? When I was awake? Did they happen in my brain and not quite make it to my body? What does it mean??

I was expecting answers. All I’ve got are more questions. The letter makes no sense to me. It’s left me confused and wondering whether I should just give up on my quest for answers. Epilepsy is part of my puzzle. Health is a corner-piece and my epilepsy is intrinsically wound through and around that piece. So many other pieces are dependent on that corner-piece and in order to make sure they keep flowing and slotting together, I need to understand my epilepsy. If I can make sense of it all, then I’ll have a better chance of making better decisions.

So many pieces! Is it really just one puzzle?? I know I’ve picked up some of the same life fragments before. I’ve turned them over in my hand and I’ve tried to slot them home, but they haven’t fit quite right. It doesn’t matter how much I want them to be the right piece at the right time, they can’t be manipulated. I can’t read my health pieces at the moment. My options aren’t clear to me and I don’t know what questions to ask. I don’t know if I ever did. I’m not sure I know how to take control, I know I have to. I just don’t really know what to do next.

Coming round in a hospital bed is not the best feeling in the world. The split second when I don’t know what’s happened, followed by the long drawn out hours when I dwell on what did happen. I’ve said before, the nursing staff are lovely on the whole, but then there’s the part when I realise I’m not wearing my own clothes and the talk about a urine sample I have no recollection of giving, then there’s all the stab marks in my arms where someone has, often unsuccessfully, tried to administer something, although I don’t know what. Then it’s not being allowed to go to the bathroom, being told to use a commode. It’s humiliating. Don’t get me wrong, I know there are protocols and some things just have to be done, but I still find it humiliating, demeaning and depressing.

No-one in hospital has time. People charge here, there and everywhere. I often feel I’m a nuisance. That I’m a waste of time and space. I’ve been held in psych wards, mixed wards and single-sex wards and I’ve felt the same in all of them. I say held, because I’m not there of my own free will. Because I know that, usually, there is no need for me to be hospitalised it makes me feel worse. I’m taking up space and time that could be better used by a more needy person. I hate it.

I’m in a situation right now that I simply do not know the best way to deal with. It’s been going on for some time now and it’s beginning to have an adverse affect on my health. It has spiralled out of control because one of the protagonists in the situation chose to lie by omission. That person was not me, but because of their “omission”, I’m paying a very heavy emotional price that’s starting to have a physical cost. I want to set the record straight, but the fallout for doing so could be verging on cataclysmic to a group of people. The stain on my character would be removed, but the person who lied would never forgive me and the person they lied to could make life even more difficult for the group than they currently do. If I knew what that person would do with the truth, I’d tell it. But, there’s a part of me that knows this person has a rotten core and would use the truth in a malicious manner. This began 14 months ago, probably had a helping hand in the stresses that facilitated the last cluster of fits I had and has been gradually morphing into a ridiculous situation that’s bordering on farcical. All because a person I love dearly, lied.

Anyway, I’ve gone a bit off on a tangent, but this is wearing me down. It’s one more piece of my puzzle that shouldn’t have to be a part of my jigsaw. I’ve just re-read that last paragraph and if I could find it in myself to laugh out loud at it, I would. It’s bloody ridiculous to feel so hemmed in because of the actions of an other. I’m tired of it.