Content Warning: Talk of triggers, trauma and abuse.

This week I was triggered, badly. It happened at work, which was kind of embarrassing. I’m always a little embarrassed when it happens, but at least if I’m just with my husband, he knows my history and understands what’s happening and can wait it out with me. At work, I try to put forward my confident, professional self, and the illusion is kind of shattered when you end up curled up on the floor shaking and crying (not an over-exaggeration).

This episode was a particularly bad one too. I have talked about my triggers and trauma responses before.  I had a tactile flashback in March that I shared here. This time it was more emotional than sensational. Even though I knew I wasn’t in any actual danger, I was completely overcome with the absolute terror that I used to live with daily. I don’t know how to properly explain this kind of fear to someone who’s never felt it. Physically, my body shook, I began to sweat, my heartbeat went through the roof, I couldn’t stop crying. Emotionally, I didn’t feel safe. No, it’s more extreme than that. I felt as though someone could burst through the door and end my life in a fit of rage and there was nothing I can do to stop it. This is the reality I lived with for a year; afraid to sleep because he might smother me, afraid to shower because he might drown me, afraid to blink or look away because he was a constant threat on my life, while simultaneously feeling as though I couldn’t live without him.

That was the emotion that I experienced with this trigger, I was petrified. But, because I wasn’t reliving a particular event, I was still mentally present. I was aware that I was at work and that I had been triggered and that I need to find a way to make myself feel safe. I removed myself from the situation and locked myself in the bathroom for while to get over the initial shock. When I felt a little better, I left the bathroom to return to work. My manager met me in the corridor and asked if I was okay, evidentally, I was not. Every time I thought I was okay, another wave crashed down on top of me. I ended up in the staff room, sitting on the floor between a sofa and coffee table, shaking and crying down the phone to my husband. I like small, compact spaces, close to the ground, where I can see the door. I’m sure I looked crazed, but I know what I need to do to look after myself, and I did it. I called my husband because he is grounding for me, he makes me feel safe. Ideally, I’d have him hold me tight until I calmed down, but in this situation talking to him on the phone was the best I could get. It helped a lot though and I returned to work not long after that.

My colleagues were all very kind and supportive, and respectful of my process, asking what I needed from them and then doing as I asked. I was very appreciative of that. Although I am embarrassed that they’ve seen me like that, I am sure they’re not judging me for it, they are good people.

So anyway, the episode took its toll physically and mentally. It is exhausting to feel that kind of intense emotion, even if it’s only briefly (I do have theories that my trauma contributed to my M.E, but more on that another time). As per usual, I began thinking of ways that I could improve myself. In terms of counselling, talking therapies, CBT etc., I think I have done as much as I can. The trauma occurred 6/7 years ago and I feel as though I have processed it as much as I am able. I am conscious and aware when I am triggered, my response is purely physical. It’s kind of like playing a horror game in VR, you know it can’t actually hurt you, you know it’s just a game, but it’s still scary as hell. The trauma lasted for 2 years and I was barely human by the time it was over, so I think it’s fair to assume that my brain was injured by it (MRI testing has proved that PTSD physically changes the structure of the brain). If this is the case, then I need a different kind of treatment that focuses not on my emotional responses, but on helping my brain to process the traumatic memories that it’s holding onto.

EMDR. Eye movement desensitization and reprocessing. The process of reliving your trauma (with a trained professional) while being bilaterally stimulated. This can be done by watching a moving finger, metronome, lights, or anything else. No one is exactly sure why it works, but they’ve been using it in PTSD patients since 1988 and many find it very helpful. The theory goes that during a traumatic event, you brain is incapable of storing memories properly. So when you are triggered by something relating to the trauma memory, your brain gets confused about when it happened and reacts as if it’s happening in the present. By stimulating both sides of the brain while recalling the trauma, you are able to keep one foot in the present moment and one foot in the past, allowing the brain to reorganise itself and file the memories away correctly. A study done in 2020 has shown that this kind of therapy increases connections in parts of the brain involved in multisensory integration, executive control, emotional processing, salience and memory.

I’ve been aware of EMDR for a while but am naturally skeptical of treatments that don’t have scientifically demonstrated, repeatable results. All of the evidence that this works, is anecdotal. But at this point, what do I have to lose? I texted an old counsellor of mine (who said to text any time if I needed help after our formal sessions ended) and asked if she knew someone or somewhere she could refer me to. As it turns out, the faction that she works for (who I have used several times in the past) do use this kind therapy. She said I may have to do some trauma counselling first, I guess to prove that I have PTSD and that I’ve exhausted other treatment options, but I’m okay with that. From my experience they’ve always been quite receptive when I’ve told them “this is what’s wrong with me, this is what I’ve tried, these treatments work, these ones don’t, this is what I’d like from you”. I’m sure it’s easier than trying to figure out how to help those who don’t know what’s wrong with them or what to do about it.

I’m going to call on Friday and see what they can do. I booked the day off work so I could have a ‘health’ day and I reckon this falls into that category. I’m excited, I like to work on my mental health and the idea of being free from flashbacks and nightmares is exilerating. He’s taken enough from me already, time to let it go.

Using my public platform as therapy (again)

Using my public platform as therapy (again)

I had my second jab (Pfizer) on Friday. It was fine. My arm was killing me for a day and I felt slightly more fatigued than usual, but that was all. Now I have no more excuses to stay home. After 1 year and 2 months of being almost exclusively confined to my home, I now have to re-join society.

I’ve spoken to the HR rep at work and we have agreed to a phased return (starting with 3 days a week until I feel able to do more) beginning on May 10th 2021. I am terrified.

I want to specify, I’m not afraid of the virus. I mean, I am, but only mildly. I have faith in science, in my workplace, and my colleagues to keep me safe. I think my chances of catching the virus are slim to none. What I am experiencing is a generalised anxiety that I haven’t felt for many years. It’s a fear of being away from my safe space and of facing the unknown. This is a fear that I have faced before, and has always been a part of me but, with practice, I was able to ignore it and live life anyway. But I’m very out of practice, and the idea of my home being my ‘safe space’ was intensified by the fact that people are literally dying by the million outside. So the general anxiety has become more akin to a phobia.

Problem solving time. I often talk about having two brains. I have an emotional, irrational one, that feels all the things with or without reason, and I have ‘Logic Brain’, who does all of the thinking and rationalising. When I was young, Emotional Brain was in charge of everything, and would shut up Logic Brain with “If that’s true, then why does it feel like this?”. As I grew up, I thought that the goal was rid yourself of the irrational feels by logic-ing them away (turn the light on to prove to yourself that the shadows aren’t real and can’t hurt you). Now, as a psychologically mature adult, I realise that neither brain is more right than the other and that communication between the two is key.

Therefore, the first questions are always, what are you feeling and why? The first one is pretty easy, fear and anxiety. The ‘why’ is more difficult. Logic Brain tells me that there is nothing to fear, nothing that I will encounter will harm me, and I am not in danger. But that doesn’t help, never does, never has. When I’m struggling to pinpoint the cause of my fear, I run through the scenario in my head and pay attention to which parts trigger the fear. When I think about the work, I’m actually really excited and looking forward to it. It’s what I trained to do and I love it, and even though it’ll be unfamiliar work to me, I love learning, so that’ll be fun. When I think about seeing the people, some I will have worked with before, some I will have worked with remotely but not met in person, and some will be completely new. I’m not a fan of socialising and meeting new people, but I know the atmosphere of the company is a friendly, respectful one and it will be nice to be able to mix with people who share my interests again. It turns out, the things that are scaring me are; getting to and from work, how well my health will hold up (i.e, how painful will it be?), and having nowhere to retreat to if things get too much. So let’s unpack these, shall we?

Number 1. Getting to and from work. I had planned to be driving by now but, long story short, I’m not. I used to get the bus(es) into work, but they are now at the bottom of my list, partly because lots of people in a tin box is a breeding ground for all kinds of things that can kill you, and partly because I had to get up at 4am to get to work on time, and that will negatively effect fear number 2. Currently my plan is to carpool with a fellow employee coming from the city. If they are unwell or unable to make it for some reason, then a £40 Uber is my backup plan (app downloaded and addresses saved and at the ready). It’s not ideal, but it’s a stop-gap until I’m able to drive myself, which is the official plan.

Number 2. My health is not as bad as it could be, but by no definition is it good. It won’t hinder me in doing my job, I have struggled through Uni when my health was much worse, but I am afraid of pain. I can take painkillers before, during and after work, but they only take the edge off, they don’t rid me of the pain completely. My best defence here (besides the painkillers), is to adjust my diet and adhere to it strictly, rest as much as possible when I’m not at work and, don’t be a hero, ask for a chair if there isn’t one. Experience has taught me that I will get used to the extra activity, as long as I care for myself properly.

Number 3. This is another thing that having a car would fix. Sometimes, being around people and noise and smells and places gets too much for me and I need to retreat to a confined space that is silent, where no-one can see me. Usually, this would be a bathroom stall, but I’m not sure about the safety rules that have been put in place regarding toilets in the building. This is something I will need to look into, but stairwell is also an option. Solutions to this problem require extra research, but it’s not information that is difficult to get hold of, and I can definitely prepare for this beforehand.

So there we have it. Emotional Brain has calmed down a bit because instead of telling it that there’s nothing to be scared of, Logic Brain had put plans in place to ease the fears. The anxiety is still there, but it’s less, and over time, with repeat exposure and further developments, it’ll become pea sized and manageable again.

Thanks for helping me with my therapy today. I hope you’re all well. :smiley face emoji:



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.

The Embarrassment of a Self-Inflicted Flare Up.

The Embarrassment of a Self-Inflicted Flare Up.

As I’m sure I’ve mentioned before, the key to managing an illness like this is to work out where your limits are and then live within that range. The problem is that when you get really good at doing this you start to believe that you are better. Not ‘well’ like you used to be, but better than you thought you were and more capable of doing things. If you’re anything like me, you’ll spend most of your time thinking about all the things you used to be able to do, and since I am very much like me, I began to wonder which of these things I should start doing now that I was doing better. So I started exercising.

Before my relapse in November 2016, I had begun training for a 5km run. So in my overconfident state of complacency I downloaded a Couch to 5K app. I didn’t want to run outside in case I collapsed or pushed myself too far and wasn’t able to make it home again, so I would jog on the spot in the living room. I took a rest day between each workout and I was loving all the extra calories I was burning. I felt tired but not unbearably so. Halfway through my second week however, my body retaliated.

The pain gripped my body and dug its nails in, the fatigue clung to me and dragged me to the ground. I was bed bound for a week, and house bound for another. On to week 3 and even now a short walk to the corner shop requires a long rest before and after. It’s a good thing a bought a shower stool recently so I’m still able to wash myself.

I was too ashamed to tell my partner why I was having a flare up. As a person who is always reading, learning and talking about my condition, I should have known better, but my inability to accept my disability caused him to shoulder the responsibility of my chores and my care on top of his full time job.

Shame, pain, fear and hopelessness; those are my feelings today.

The Common Cold (with not so common side effects)

The Common Cold (with not so common side effects)

A few weeks ago I had a cold. Now, I was only stuffed up and coughing my lungs out for maybe 4 days, but it was a beautiful demonstration of how bad my body is at dealing with illnesses and recuperating afterward.

It is generally accepted that, unless you have a form of flu or are highly contagious and work in the food or health industry, having the common cold is not grounds for time off. I do try to live by this unwritten social law but for me even something as ‘benign’ as the common cold can greatly affect my ability to go about life normally. The fatigue that I feel is felt by my body which responds to exertion in the ‘normal’ way by increasing heart rate and oxygen intake. The problem is that it responds to minute amounts of exertion as if I’ve just gone for a run.

When your body is fighting an illness there is a huge amount of energy expenditure that happens without your awareness. There are many processes occurring within your bloodstream and your tissues to get you well again. All these processes require an extra amount of energy on top of your usual daily expenditure. In order to keep up with these demands your heart has to beat faster and your oxygen intake needs to increase.

Anyone who’s ever had a cold knows how tiring it can be. Even if you’ve had a normal day, struggling to breathe and having a higher heart rate leaves you exhausted at the end of it. For me, having a cold feels like having a cold and then going for a run. I try to live by the unwritten social law, but sometimes even I am amazed at how exhausting it can be. Sometimes I have to accept that even though I only have a cold I have to take that time off to rest.

Then comes the recovery time. Most people will find that after having a cold it may take 2 or 3 days for them to feel back to their usual selves. But my batteries don’t recharge properly and every day that I try to get back to living a normal life again (after already being forced to take 3 to 4 days off while I had the cold), takes away energy from the recovery process. Therefore, what should take 2 to 3 days actually ends up taking two to three weeks. That’s two to three weeks of doing the bare minimum, of having to prioritise what is absolutely necessary because I can’t do any more than that. This is particularly awkward and difficult at a time when assignments are due in and exams are coming up. Unfortunately, these are also the times when I am most susceptible to catching a cold since stress further disables my already underactive immune system.

There is another aspect of this though, for me personally. The illness that triggered my M.E in the beginning, was a kind of flu. So any time I get a cold I also get with it flashbacks of sleepless nights and high fevers and muscle spasms and agonising pain that eventually lead to my current state of disability. And then there’s always the background fear that maybe it will happen again and I will repeat that process of expecting to feel better but never actually recuperating and eventually having to accept that this is the way that I will feel the rest of my life. I am more afraid of that then I would normally care to admit.

I had a cold a few weeks ago but I’m starting to feel better.