Depersonalization and Derealization

Depersonalization and Derealization

My mental health has taken a hit recently. Unfortunately, I am person who will struggle with my mental health all my life. In the beginning, it was difficult to accept that I would never be ‘cured’ but, now I have, I am able to work on levelling out my peaks and troughs, while taking comfort in the knowledge that when I am down, I will come back up. In a way, this acceptance has helped me manage my chronic illness too, but that’s not the point of this post.

Today I want to talk about, not what caused this bought of depression, not how I’m managing it, but how I experience it. Today, I want to talk to you about dissociation.

When a brain is exposed to prolonged, sustained trauma, it will often learn to dissociate as a coping mechanism. That is, it will remove your consciousness from your body, from the time and place where you are, and give you an alternate reality to focus on so that you don’t have to endure what is happening to you.

For those of us with CPTSD (Complex Post Traumatic Stress Disorder), even after the trauma has passed, the brain can continue to employ this technique to every day stressors. This can be a blessing and a curse. It means that when traumatic events do occur, we are better equipped to deal with them than the average person. We are often calm in high-stress situations because we are able to emotionally and mentally remove ourselves from it. But it can also caused severe mental illnesses such as DID, OSDD, sociopathy, psychopathy, psychosis and others. In me, it has distorted my sense of reality. The more stressed or anxious I am, the more I dissociate, so I struggle to remember some of the biggest moments in my life, like my wedding and my graduation.

Before I was able to name my problems, I always knew that I had difficulty distinguishing the difference between truth and lies. And not just the lies that others told me, but the ones I told myself too.

When I was a child I had imaginary friends who I sometimes forgot weren’t real people. Sometimes I even heard them speak to me. It didn’t help that my real friends and I would talk about them as if they existed in the world, but nobody else ever got confused like I did.

When I was a teenager I was a pathological liar (I’m sure I’ll get into the reasons for that in another post some day). In order to make my lies believable, I would envision the made-up scenario in my head. I would submerge myself in every detail so that if I was ever quizzed or questioned about it I would be able to give accurate, consistent information. However, the more I told a lie the more I began to believe that it was real. There were a couple of times when I was presented with witnesses and hard evidence that a thing had not in fact occurred, and I flat-out could not believe it.

As a young adult I became fascinated by conspiracy theories and repeated to myself the mantra “question everything”. I became paranoid about everyone and everything I thought I knew. During this time I was also romantically involved with an abusive narcissist, and by the end of the relationship I genuinely believed that he could read my mind.

When that relationship ended I tried to commit suicide by overdose. The drugs made me dizzy, hazy, and sleepy. For about year after that, I was convinced I had actually died from the overdose and that everything I was experiencing from that point onward, was some form of afterlife.

There was a time where I hadn’t slept in several days and my skin was itchy. I thought that if I cut my skin open then the itch would be able to escape and I would feel better.

Often I recall things, and I’m not sure if they actually happened or if I dreamed it. I have been wrong in both directions too (thinking something did happen but it turned out to be a dream, and thinking I dreamed something that turned out to have actually happened).

The pandemic has been the definition of a stressful/traumatic experience for everyone. When it first began, I basically ignored it, thinking of it like another swine flu that is blown up by the media but will ultimately not effect my life in any real way. When lockdown began, that was when I realised my own vulnerability and the immensity of the destruction this virus could cause. That was when I started to flip-flop between “this can’t be real. It’s not really happening” to “this is the most important event of my lifetime and everything that happens now will effect our lives and the lives of generations to come.”

I need to explain though, the “this can’t be real. It’s not really happening” thoughts are not the general disbelief that everyone feels in these kinds of situations. The kind where they don’t want it to be real but ultimately they know it is. This is the kind of disbelief where I am questioning my own existence and the existence of the world around me.

The first time I saw people wearing masks out in public, I thought that it was a simulation. I thought they were holographic projections of what a futuristic world could look like. When I went outside during the first lockdown, the streets were abandoned. There was no traffic and no people walking around. I thought I was in a post-apocalyptic film or game, I kept waiting for something to happen, but nothing did.

I’m not completely detached from reality though. If I was, I wouldn’t be able to communicate these things to you. It’s like I have a split brain and while one part believes that nothing is real, the other part is well aware of what is actually happening. It’s difficult to explain the disjointed feeling of unreal and real at the same time.

Here’s an example from the other day: I saw an electric scooter abandoned in the middle of a green area between roads. I saw it there a few days in a row and it became part of the scenery, so I stopped noticing it. The next time I saw it, it was laying on its side, on the verge of the green rather than in the centre. The most obvious explanation for this is that somebody moved it. Maybe they used it and returned it to a slightly different place. Maybe it was in their way so they pushed it to one side. Maybe some kids were messing about and it got shoved a little way away. However the exact movement came about, it was most likely a person that caused it to move. But I didn’t see that happen. From my perspective, it was in one place, then it was in a different place. So what if it disappeared for a day or two, then on its reappearance, it misjudged the time and speed of its arrival and ended up in the wrong place? What if it teleported to somewhere else entirely and when it tried to come back it got it’s co-ordinates wrong and missed it’s spot by a few feet? You see, even though it’s highly unlikely that this is what happened, I didn’t see it, so I don’t know for sure. I can’t know for sure, so in my mind any of these scenarios are equally possible.

It’s like man landing on the moon. We know that’s probably what happened, but we didn’t see it happen ourselves, so how can we know for sure that it actually did?

My most recent dissociative thought was that I was a game character that was stuck in first-person mode. I found it irritating and wanted to switch to third-person so I could see where I was going better. I know I’m not a character in a game, but if I was, would I know?

For a long time I thought (because my psychiatrist told me) that it was caused by my having an “overactive imagination”. But I’ve been thinking about this recently, and I believe it’s actually because people close to me have been fucking with my sense of reality all my life.

It started with my Mother. With things as small as “you did ask for a cup of tea, I wouldn’t have made you one if you hadn’t”, all the way to keeping the details of my Father’s illness a secret. I knew they were going to hospitals a lot and I knew he was in pain all the time, but they never told us what was going on. Maybe they were trying to protect us, or maybe they are terrified of being vulnerable in front of us. Either way, the outcome was the same. I have many memories of my childhood that my Mother completely denies happened, but I know that they did because my brothers can confirm them.

Then came a whole series of people who would tell me one thing, then do something else. My first boyfriend who said he loved me, then hit me. My school friends who said that we would all go to Sixth Form together, then left me on my own and went off to college together instead. The narssacist who lied about pretty much everything and made everything my fault some how. My best friend in the whole world, who I’d known and loved for 10 years who told me that no matter what his new girlfriend did or said, he would never lose me from his life because I was too important to him, who then ghosted me at the worst time in my life (I only knew he wasn’t dead because his Mum would have told me if he was). The girlfriend who played the domestic abuse victim who was actually an abuser herself. The boyfriend who told me he loved me, then took it back the next day. Everybody I ever trusted, lied to me. Is it really any wonder that I don’t know what’s real and what’s not?

My husband knows how important open honesty is to me. In our marriage hard truths are a sign of love and respect, even if they hurt us both, because it’s a demonstration of trust. Promises are a rare thing between us, because we won’t make one that we can’t be certain we’ll keep. All too often people will say things like “I promise I will always love you/will always be here/will never hurt you/will keep you safe” but people change and no-one has that much control over life.

I am a scientist and I believe that empirical evidence can prove or disprove the existence of something. I am religious and spiritual, and I know that there are some things in this world that we cannot explain, but that doesn’t make them any less real. I am a fiction writer and I spend a lot of time “off with the fairies” imagining made up people and places and events. I am a philosopher and continue to “question everything” in order to find deeper meaning. I am a survivor of trauma and abuse, I know that sometimes things that you didn’t believe would ever happen, do happen. I am neurodivergent and the world is not how I was taught it should be. I also have minor prosopagnosia (face blindness) so strangers all look like generic NPCs to me. All of these things effect how I experience the world around me, and inside of me. Sometimes I wonder how many other people experience the world like I do.

From time to time this dissociation can cause an existential crisis in me, but I am aware when that is occurring and can take the time and space to reconcile this. For the rest of the time, as long as I’m rational and not a danger to myself or others, does any of it really matter?

Scratch for the Itch

Scratch for the Itch

Just letting you know, this post isn’t technically M.E related, but it is health related so that’s close enough.

For the last week I have been itchy from my neck to my toes. My hands and forearms also escaped so far but the longer this goes on, the more they are being effected. It’s been a week now and the itching is getting worse. I barely sleep because it wakes me up throughout.

The thing is though, there is no obvious cause. No rash or hives or dry skin. Nothing in my washing or cleaning routine has changed. It’s not a deep, burning itch, like you get with allergies, but like thousands of teeny tiny spiders crawling all over me, but scratching doesn’t kill them. Heat soothes it instead of making it itchier. I’ve not been out in the sun or under a lamp or anything. It has been a literally 24/7 itching all over my body and I have no idea why.

So I called the GP and she says “Hmmm… Let’s get some blood tests and check out your liver function and things, and then we can stop worrying.” Before she said that, I didn’t realise that we were worrying.

The closest blood clinic didn’t have an appointment available for 2 weeks, so I had to get one a little further away, and the current state of affairs means busses aren’t an option for me, so I had to walk the 40mins there and 45-50mins back (I’m tireder now).

But before that I made sure that to worry sufficiently, as the doctor had told me to do, I looked up all the things it could be. In the end I decided it was either a dormant virus rearing its ugly head (shingles for example), hypothyroidism, or some kind of cancer. I put those in order of likeliness for you too. Of course the other option is that it’s a new undiagnosable chronic illness that shows up on no tests and has no treatment, but I’m currently refusing to accept that possibility.

I’ve just come back from having my blood taken now. I asked the nurse what “liver and things” actually meant so I knew what I could rule out if the blood tests showed nothing. She confirmed that I was getting the full works. That means full blood count (red cells, white cells and platelettes), blood glucose levels, liver function, kidney function, thyroid function and calcium levels (to check heart health).

I’m supposed to get the results tomorrow and it can’t come too soon. I’m starting to get some bad bruising from the scratching that I’m doing (mostly subconsciously in my sleep). I need this itching to go away. I’ll let you know how it goes.

Tangent: I forgot my keys because I’m not sleeping and was running late for my blood test and, after the locksmith let us back in, he looked at my cane and said “What have you done to your foot, did you hurt yourself?” and I realised that’s the first time since March that I’ve had someone ask me a stupid ableist question. I was annoyed with a hint of nostalgia.

Fear

Fear

To listen to me read this blog post, please click here: Reading “Fear”.


It’s been a few months since I’ve posted here and that’s mostly because I’ve been well and living a normal life. Actually, I’ve been living a busy life. I’ve been finishing off my final year at university, writing my thesis, and I got two part-time jobs. I felt like I didn’t have much to say about my M.E since I was living a life basically symptom free. But then the Coronavirus hit.

Before you start reading, I want to be clear that I don’t know whether or not I had the virus, they’re not exactly handing out test kits here, all I can do is tell you what I’ve been experiencing.

It started with my legs aching. Since my “recovery” I no longer experience symptoms daily, but when I do over exert myself or drift from my diet, my legs are the first to let me know. So I shrugged it off as “I just did too much today and need to take it easier.” But the pain persisted day after day, getting worse each time. I was back on pain killers or else I wasn’t able to sleep. Then I got a cough. I’m not a person who gets coughs so I was immediately suspicious. It wasn’t a bad cough but it was persistent. I began isolating as the government suggested. The cough never got better nor worse but the leg pain continued to require pain killers. After 1 week of showing symptoms, the government said I could go back to work (this was before lockdown). The afternoon before I was due back I was massively conflicted. I could go back to work, I should go back to work and if this was the virus then I should be safe, but if it wasn’t the virus and I just had a cough then my immune system is even more damaged than usual and I’m at an even higher risk of catching it. But I’d already taken a week off to isolate, I can’t just keep taking time off just in case, can I? I went for a walk with my partner to mull things over, and I was in far worse condition than I thought. I was getting PEM symptoms almost immediately after stepping out the front door. I was panting, my heart was racing, my legs felt like lead and my whole body slouched, unable to hold itself upright.

I called work and explained my worries. They were very understanding and told me that if I felt safer at home then I should stay there. If only all employers were so empathetic. Soon after that, lockdown was put in place and although my place of work stayed open (they are working on disinfection techniques and studying the virus itself), I did not consider myself to be an essential worker (part-time lab assistant with little training to carry out work autonomously), so I am staying home indefinitely.

I don’t know how much of my symptoms was caused by the cough, by stress, by the potential virus, or by lockdown resulting in less time outside or exercising, but my condition got worse. The week after lockdown started, I woke up finding myself unable to walk. This has only happened to me a few times in the past and only when my illness was at its worst, so you can imagine how truly terrifying this was. I had to ask my partner to help me to the bathroom and back to bed. After 8 months of being symptom free, suddenly not being able to walk was soul crushing. I tried not to dwell on it but the thought stayed with me, “What if 8 months is all I get and now I go back to being ill again?” I started asking myself whether I used my time wisely or if I could have done more. I wondered if I would look back in a couple of years time and say “I should have done x, y and z while I had the chance.” But I rested and I slept and slowly, as the day went on, my strength came back a little. The next day I was able to tackle the stairs and the day after I wanted to go out for a walk.

My strength returning with rest said to me that my body is trying to get better but the lack of exercise is causing my muscles to seize up and weaken, so I should try to keep myself active within my limits. Now I’m making sure to get out for a walk every day, but I’m back to never leaving the house without my cane and a short lap around the park is the most I can manage. Every day I seem to be getting a little stronger and am less exhausted when I get home, so that tells me my hunch was right, my body needs the exercise, fresh air, sunlight, in order to stay in working order. My legs aren’t hurting so much now either but I’m still wondering if I’ll get back to full health again or if my cane is coming out of retirement permanently.

Thank God we are still allowed out of our homes but I am afraid that we may not keep this freedom, and I’m not sure what I’ll do then. I’m also afraid that lockdown will continue for longer than we are expecting and I don’t know if I will continue to improve or stay at this level of wellness. Just like everyone else right now, I’m afraid but trying not to panic.

I hope you are all well.

To Rest or not to Rest

To Rest or not to Rest

Something happened to me this morning. My alarm woke me up in the middle of my sleep cycle and for a few seconds that felt like minutes, I was laying there, awake, hearing my alarm, knowing I needed to roll over, stretch out my arm and hit the snooze button, but being completely unable to move. When my body did finally respond, it shook and spasmed. The signals from my brain were not reaching my limbs properly, or maybe they were but my muscles were unable to perform their tasks correctly. They didn’t hurt but my ribs did and I felt sick and panic and my heart raced with exhaustion at every movement. I thought that it felt like a flare, except for the lack of pain, and I wasn’t sure what to do. But I needed to pee, so I forced my body up. It was clumsy and took far more strength and effort than it should have. I walked like I used to; slow and shuffling and had to steady myself on the wall. When I stood from sitting I had to pull myself up because my legs couldn’t manage it by themselves.

I stared myself down in the mirror, tears in my eyes, terrified that my good health was just a dream and that this was my crashing back down to earth, but I determined not to ruin my perfect streak and let my illness take over my life again. So I brushed my teeth and got dressed slowly and carefully, focussing my awareness on the signals from my body. I felt it slowly remembering how to move properly. I felt exhausted but my muscles weren’t fatigued, just lazy. The sickness persisted but my chest pain eased and breathing slowed.

I decided not to take my cane at the last minute. It may have helped but it felt like surrender and I was worried it would draw attention. I was slow moving but I could walk so I would. I took the shuttle bus into uni instead of walking the 10mins in and got the lift up to the second floor instead of using the stairs and decided that would be enough to save my energy.

I got to class, took my book and pen out of my bag then tried to write the date. I could not. My hands would not hold my pen correctly, the strokes I forced on the page were jagged and strange. My major motor functions were slow but working, my fine motor skills were not. I left everything where it was and walked out of the classroom and turned the corner. I burst into tears. I cried, then I wiped my face, pulled myself together and went back into class. I wrote a little in the strange chicken stractch of my malfunctioning hands and almost dropped the lid from my drink when I tried to unscrew and replace it. I then emailed my boss to let him know I wouldn’t be coming into work that afternoon. Taking notes in class is one thing but working in a lab in that condition would be dangerous and irresponsible.

I came home and put on a film to relax and rest to. There was some improvement as the evening went on but not much. I went to bed early.

I’ve not been sleeping well nor eating or drinking enough and I am stressed from the amount if work I have to do. It’s not really surprising that I burned out, anybody would, but today was terrifying for me.

Maybe I should have stayed home and rested all day but I would have hated myself for it and spent all day wallowing in self pity. At least by going into class I felt like I was trying and doing that gave me the space of mind to determine what I was and was not capable of. I’m glad for the decisions I made but I don’t know if they were the right ones.

Livin’ on a Prayer

Livin’ on a Prayer

Firstly, apologies to my followers who have had to wait twice as long for this post. I was awaiting some good news to share with you all (for a change), but unfortunately that news hasn’t come yet. So, I’ll talk today about university in stead.

I’ve just finished my second week back and although I love being a student and have enjoyed my classes, I’m still terrified that this pace is not sustainable. This past week has been a particularly stressful one and I feel as though a crash is inevitable, it’s just a question of when.

I attend university three days a week. Two of those days are half days (9-1 or 11-3) but the last day is a full 9am-6pm. Over the summer I also moved home so I no longer live on campus and have a 2 to 2 and a half hour commute each way, depending on traffic. This means that every Friday I have to get up at 5am and I don’t get home until past 8pm. My days are spread out across the week, Monday, Wednesday and Friday, but second year expects much more from us than first year did, so even on my days off, I feel like I’m not able to fully rest since I have studying to do, not to mention the few household chores I can do and keeping on top of my general health and hygiene.

I’ve also recently begun to worry about what I’m going to do once I finish my course. I won’t be able to hold down a full time job, but who ever heard of a part-time graduate position? Sure, if I already had a job I could negotiate a reduction in hours but how am I supposed to go into the job market at the same time as the rest of the UK’s graduates and convince a company that they should take me on even though I can only do half the work of their other candidates? And the kind of work I want to do is not the kind I can do from home. I mean, there’s always paperwork to be done and I could probably take that home with me, but lab work needs to be done in a lab, under carefully controlled conditions.

So in conclusion, I am stressed. I don’t know if I’ll make it through uni and even if I do, my career prospects look bleak. I feel as though the best I can do is just keep plowing ahead and hope that I find some treatment that allows me to live a half-way normal life.

Anger

Anger

I have been angry recently. The anger comes and goes, just like the other emotions I feel, but I’ve been feeling angry for the past few weeks now and I don’t think it’s going away any time soon. I’m angry about the things that my body won’t allow me to do and I’m angry at the unwanted things that it does do. I usually use humour to make my disability easier (for myself and others) to deal with but I’ve found that by doing this I have made it so that the people around me don’t fully understand the difficulties that I live with. This then means that when the anger rears its ugly head, I end up getting frustrated and irritated and sometimes even aggressive towards people who laugh at me in the way that I would normally laugh at myself. Of course they can’t be blamed for laughing at me this way since I’ve already established it as an acceptable behaviour by doing it myself. But the point here is not that I feel victimised because I’m being laughed at, it’s just that the laughter implies that it’s not a vicious all consuming disease that is slowly stealing my life away from me.

I find myself in situations where I have to remind people that my life isn’t the same as theirs and that there are things that I cannot do, and that repetition just drives it home a lot harder and a lot more frequently than is comfortable. It also reminds me of my teen years when I suffered severely from depression and anxiety and therefore couldn’t work and rarely went out. People would call me lazy because they couldn’t see the illness that I was suffering with. This feels very much like that, like people can’t understand why I don’t do certain things because they can’t see the way that I feel and I’ve taught them to laugh at the illness as if it’s something that doesn’t affect me.

Only yesterday I was talking to a friend and fellow student about future career prospects. She said that she didn’t want an office job because she didn’t want to be cooped up and sat down all day, and I replied that I didn’t have much of a choice anymore. She asked why.

Last week I was talking to my partner about how I wanted to restrict our future children’s exposure to technology. I wanted them to have an old-fashioned childhood where they played outside instead of sitting on their consoles or tablets or phones all day. “Says the person who sits around on her phone all day” he laughed. I wanted to scream at him. Do you know how much I would love to go for a bike ride or camping or tree climbing or a long walk or play at the beach or go and feed the ducks or even just have a day out where I don’t have to plan everything in advance because I need to know where and when I can sit down and what the terrain will be like and how long I’m going to be on my feet and how far away things are and what time of day we’re going to be out and what the weather and temperature will be and if we’re able to come home quickly and what else needs to be done that day and how many people are going to be there and what’s expected of me while I’m there and how much enthusiasm will I need to put in. I ‘sit around on my phone all day’ because that takes little to no energy and after a 10 to 12 hour week that’s about all I have left.

So yeah, I’m angry. I’m angry because of all the things that I wanted to do with my life that I now seem unable to do, and I’m angry that people look at me and see me as lazy, and that no one seems to notice how hard I work just do as much as I do do. I’m angry because when I do take the time I need to rest, I feel like I’m letting myself and everyone around me down. I’m angry because life is hard every single day and I am alone in this fight.