Returning to the World

Returning to the World

This week, I went back to work. I negotiated a phased return so I’m only working Mon, Wed, and Fri for three weeks to see how my body responds. One week down, two to go.

So how has my first week been? Exhausting, and painful. Like, really painful. More than I was expecting. I have three different kinds of co-codamol, strong (30mg/500mg), medium (15mg/500mg) and weak (8mg/500mg). On Monday I took 2 medium tablets in the morning, 1 weak one at lunch time, then 4 strong ones in the evening. By Friday I was taking 2 medium in the morning, 2 weak at lunch time, 4 strong in the evening and chase with 2 more paracetamol. On Tuesday and Thursday I was scared to go back because of that pain that I knew would follow. But I did it, and will continue to do it, because my body won’t get used to it if I just stay home all the time. I bought a blood glucose monitor (to be arriving today) to help me monitor my levels and hopefully adjust my diet even more effectively. It’s something I’ve thought about before, but now it’s even more important that I get on top of my health as quickly as possible, and I’m a believer that the more data you have, the more power you have.

That’s how it has been physically. Emotionally, it has been nice seeing all the old faces, and being back in the lab where I belong. It’s frustrating, knowing that I can do things but not being able to do anything because of the strict rules they have around being officially trained before you’re allowed to touch anything. And the only people who are ‘trained to train’ are so busy with their own work that they’re struggling to find time to train me. That’ll happen over the next couple of weeks though, and I’ll get through the training quickly because I already know how to do it all.

I have noticed some interesting autistic things though that I wanted to mention though. Most predominantly, I have noticed how bad my auditory processing abilities are when there are background noises. In the lab we have several bio cabinets which have built in fans to create a constant airflow. These create a low hum, alongside the whooshing of air. There is also, always, a radio on playing music. The first few times someone tried to speak to me, and I couldn’t understand a word they were saying, I instinctually looked to their mouth and asked them to repeat themselves. When I’ve struggled to understand people before, I have found that watching their mouths form the words helps me to process what they are saying. Only now, of course, everyone is wearing a mask, so their mouths can’t be seen. I found that this tends to send me into a small panic, not knowing where I should look, and actually makes it even harder to understand what is being said to me. I’ve since decided to look at them when I ask them to repeat themselves, so they know they have my attention, then stare at the floor or wall with one ear turned in their direction. This seems to be the best way to internalise the information they are trying to give me. I have wondered what this must look like to people but, if it’s what I have to do, then so be it.

Another thing I wanted to address is masking. For those who don’t know, ‘masking’ is when an autistic person “pretends to be normal” in the presence of neurotypical people. It can be exhausting but is something that we are taught to do from a young age “to fit in”. Now, I always knew that socialising was tiring for me, and that I was always conscious of the things I said and did so as to not seem “weird”, but I never considered those things to be masking. I always thought that everybody did that, and maybe they do to some extent, but since going back out into the public after being free to be my uncensored self for over a year, I have noticed the physical restraint it takes for me to not do certain things. For example, sitting still and straight in my chair, in stead of spinning side to side or crouching in it. When I found myself alone in the lab, I started talking to myself and the equipment, then panicked when I heard someone come in, because I didn’t want to be caught doing that. And a couple of times I have almost done my vocal stim (a low, throaty, croaky, hum) while I was in the office. It took real force to stop that one coming out. So I guess masking was more ingrained in me than I thought, and now I’m out of practice.

The last thing is small talk. I hate small talk and am not really good at it. I’ve only been back for 3 days, and the amount of times I’ve had to answer the questions “How is it being back?” and “How was your wedding?” is overwhelming. Of course the simplest thing to do, would be to just answer the same way every time. Except I hate repeating myself, so I’m always trying to come up with new ways to say the same thing in stead. I’ve never understood how neurotypical people enjoy having these same conversations over and over again, and often they don’t actually mean what they say or say what they mean, they just choose from a list of prefabricated responses. It’s almost like watching two AI characters interact in a game. So, being the unique snowflake that I am, I avoid using the ‘correct response’ as much as possible (it actually makes me physically uncomfortable). But that means that I either end up staring blankly at the person, not knowing how to answer their question, or I say something honest which is often misinterpreted as rude.

A perfect example of this is “How are you?”. The expected response is “I’m fine, how are you?” but my brain always falters here. I know that this is used as a standard greeting and that the person asking doesn’t really want to know how you are, but then why ask the question in stead of just using a statement greeting like, “Hello” or “Good morning” or if you want to be interesting, how about “Howdy”? This is usually the blank stare part for me as I try to decide on a response. Then I’ll usually pick my most prominent feeling at the time (more often than not, ‘tired’ or some variation) and say that. I don’t frequently ask the question in return (which people often think is rude or self-centred) because I know I’ll most likely get another standard response or lie. Besides, if someone wants to talk about themselves then they will, even without an invitation.

One week down. Wish me luck for the upcoming weeks.

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:

Stupid Trauma Brain

Stupid Trauma Brain

Trigger warning: I will be talking about flashbacks and other trauma responses and referring to (but not detailing) sexual assault.

Last weekend, I had a flashback. The trigger was being out of breath and getting light-headed. Needless to say, I have experienced these feeling many times before and they have never triggered a flashback, so I was taken by surprise (to say the least) when it happened.

The last time I had a flashback was just before Christmas. I saw a duvet cover in a shop and I felt my brain going to ‘the dark place’. I tried to ignore it, then realised I was being triggered quite badly and was likely to have a flashback, so I found the fiancé (who was elsewhere in the same shop), left the shop and clung to him while I rode it out. And this is generally how this kind of thing goes. I have been working on my PTSD for 5/6 years now, I have dealt with my known triggers and I’m self-aware enough that if something does start coming up I’m able to make myself feel safe, ride it out, then self soothe after it has passed. The flashback before Christmas lasted only a few minutes, then I was able to pull myself together and we finished our Christmas shopping.

Last weekend was different. I didn’t know I was being triggered, I thought I just couldn’t catch my breath (something that frequently happens to me with my M.E). Then I started crying and wasn’t sure why, then I began having a tactile (aka somatic) flashback. In the early days of my PTSD I would have full, visual, auditory and tactile flashbacks, completely reliving the trauma. Now I tend to only get one kind, depending on the trigger. The duvet cover forced a visual flashback, shouting can cause an auditory flashback, struggling to breathe and feeling lightheaded apparently triggers a tactile flashback with a few scattered images and my own inner-monologue repeating some unsettling phrases that I have associated with the event. I struggled to calm myself down and get a grip on reality again. I am used to focusing on my breath to bring myself out of panic attacks and it’s become an automatic muscle-memory kind of response when I feel emotionally or physically distressed. But every time I started to slow my breathing and start coming round, I was triggered again. Maybe because my breath was the original trigger, I got locked in a cycle, I don’t know for sure, just speculating. I don’t know how long it went on, but it felt like the longest one I have had in many years. Eventually distraction became the way out, forcing my mind to focus on something in the real world so I would keep getting sucked into the past. Afterward I felt embarrassed and guilty, because the fiancé was with me through it all, and angry that I’m still traumatised after all the work I’ve done on myself.

Please indulge me while I unpack these emotions.
Embarrassment: I take pride in presenting myself to the world as a strong, stable, well put together human being. No doubt I have my issues and mental health problems, but I am emotionally mature enough to acknowledge them and talk about them openly and honestly in a safe environment on my own terms. However, when something like this happens, I completely unravel and fall apart becoming an hysterical mess. Emotionally, it’s as if I’ve just soiled myself. And yes, maybe I’m unwell and it’s not my fault, it was out of my control etc etc etc, but it’s still embarrassing for another person to see you s*** yourself.
Guilt: I don’t know if you’ve ever seen anybody in severe emotional distress, but it’s really unpleasant. Especially when it’s somebody you care about, especially when there’s nothing you can do, and especially when your personality requires you to fix problems. Knowing that I put my fiancé through that makes me feel guilty. And again, I am aware of the logical arguments here; he loves me so he doesn’t mind going through that with me, he knows me and my history so isn’t shocked by my trauma response, he has been present for flashbacks before so is aware of what is going on etc etc etc, but I still wish he didn’t have to deal with it all.
Anger: This is the one I think most people will be able to relate to. As I already mentioned, I have working on my PTSD for years. For the most part, I consider myself over it. I mean, nothing will ever be the same again, but my trauma responses are manageable, when I have intrusive thoughts I’m able to push them aside, when I talk about the trauma I’m able to do so in a calm, logical way. I’m not angry that it happened because it changed me into a better a human being, and I’m not angry at him for doing it to me, because I know that he is a broken person too. I am angry at my stupid trauma brain and it’s stupid misfiring synapses. I’m angry because the trauma has left scars on me that I can do nothing about. After all the hard work I’ve put in to allow myself to live a good life, these scars will stay with me forever and, like a creepy Jack-in-the-box, will jump out and surprise me with my trauma and random times in my life. I am angry that I will never recover the control that he took from me.

Side note: I have heard that you can use binaural beats to increase neuroplasticity in the brain that can help breach the gap that trauma has caused. I don’t know if there’s any science to back that up, but it sounds legit to me, so I might try it.

Segway into a seemingly unrelated, but actually really relevant situation that happened a coupe of days later. Those of you who are friends with my on Facebook, may have seen this:

Now, when this first happened, I was very focused on the anxiety and the auditory processing issues that I have, but reflecting on it the next day I realised the link between this emotional response and my trauma. You see, I misunderstood a situation and thought that I was happy with what was occurring, then I realised my mistake and knew that I didn’t actually want it. Even so, I was about to go through with it anyway because it was my fault for misunderstanding in the first place. However, in this situation, I was able to say “no” (amongst many apologies) to the thing that I did not want. She did continue to try and convince me to change my mind and this was when the panic started setting in and I just kept saying “no” and “sorry” over and over before I eventually stopped talking all together. Then for hours afterwards I was overwhelmed by guilt and self-blame (“I’m so stupid, what’s wrong with me, I should have known better, I brought this on myself” etc). I guess this is proof that I’m not as “over it” as I thought, or maybe I have other issues that need to be addressed that may have allowed the trauma to occur in the first place, or maybe the recent flashback made me more vulnerable than usual and I reverted to behaviours that I wouldn’t normally display? Humans are complex beings.

So in conclusion, my stupid trauma brain is traumatised and causes stupid trauma responses that I’m not able to control. Just thought I’d share that with you.

How Are You?

How Are You?

Sorry it has taken so long for me to get around to this. Doing anything is difficult when you’re depressed. But more on that later.

For now, I’m going to give you a general update on my health. The itching went away by itself, about 3 weeks after my last post. I was taking 2 antihistamines a day but I don’t know how much of an effect they actually had since I started taking them before I went to see the doctor. Does it usually take 4-5 weeks for antihistamines to work?

But I’m explaining things out of order. The blood tests that I mentioned in my last post, all came back normal (as is always the way), so I know it wasn’t cancer, or thyroid issues, or MS, or any of the other things that I was worried about. What it did mean, was that the doctor didn’t know what was going on (as is always the way). She did, however, ask about my M.E.

I think that since “long Covid” has become a thing, doctors have suddenly become more familiar with M.E (also known as post viral fatigue) because it shares so many symptoms and similarities (ikr, who’d’ve thought🙃). The doctor asked me when I’d been diagnosed, and I told her that I hadn’t officially yet. So, she said that she would put in a referral for me. She told me that it would need her to fill out an evaluation form, and that I’d also need to have another set of bloods done and a urine test. She called me the next day to ask me some questions about how my illness effects my day to day life. But at the time I was having kind of a brain foggy day and, since I’ve been living with this condition for so long, I’ve learned to adapt to my limitations. I find it difficult to determine how much the illness impacts my life since my measurement of “normal” has shifted so much, so I basically ended up telling her that I’m actually doing quite well and live a relatively normal life. It was only when I was talking to my fiancé afterwards about it, that I realised it still impacts my life every day because I have to make adaptations to live. If I were healthy, I wouldn’t need to make all of these allowances in order to just go about my day to day business. I intended to tell her all of this when I called her back for the blood and urine results, but unfortunately I haven’t been well enough to go ahead with any of that.

The 4-5 weeks worth of itching really took it out with me, and then there was an incident just before Christmas where a muscle spasm landed me in A&E. I’ve been weak ever since and the holidays in general are always a stressful occasion for me. So basically, I’ve been in a flare for about two months, with the odd ‘okay’ day.

Now (as mentioned at the start) my mental health is really starting to be affected. Not just because of my physical illnesses, the pain, fatigue and insomnia that comes with all of that, but also because of the state of the world as it currently is. I’ll go into that in more detail another time though, it deserves its own post.

I am also currently at my highest ever weight. Even back when I was almost completely bedbound, I never got up to this weight. Part of that is because, back then, I had to look after myself, so if I couldn’t get out of bed, I couldn’t eat very much. But now I have a fiancé who cooks all my meals for me, so that means that I’m still eating loads of calories but not burning them off, so my weight keeps rising. I have just bought myself a treadmill, which is something that I have wanted for as long as I can remember, and I’m planning to start walking, a little bit at a time, to build up some strength and stamina, without having to go outside.

I can’t think of anything else to tell you at this point. Basically, everything is crap.

Rollercoaster

Rollercoaster

Prompt: 7th September 2020 – High vs Low

A rollercoaster. That’s what they call it. You have your ups and your downs. I hate the over-simplification.

Rollercoasters are fun, for starters. People pay money and queue for hours to get those few minutes of fun. Then they walk away with a photo and fond memories. Nobody queues for this ride.

I was taken by force when I was far too young, shoved onto the ‘rollercoaster’, strapped down and made to ride it perpetually, indefinitely.

The tracks are always changing, so I can’t even get used to it, I never know what is coming next. The highs are so high, they terrify me. The sun is burning my eyes, the wind is rushing past my ears, the air is so thin up here. I can’t see, I can’t hear, I can barely breathe.

Sometimes I throw my arms in the air, I scream, and stamp my feet. People point and say, “Look at how much fun she’s having! She’s always the life of the party.” They don’t understand that I am desperately trying to get their attention, that I desperately need help.

After the high comes a plunge into the dark empty hole of the low. It drops so suddenly, like off the edge of a cliff, or a tall building. But I can’t see, hear, or breathe, so even though I know it’s coming, I don’t know when, or how far I will fall.

So I’m on my high, squinting, shouting, panting, then suddenly, the tracks beneath me disappear. My stomach jumps up into my throat, I feel sick and winded. The sun has gone, and I can see the ground rushing up to meet me. I brace myself for impact, but I continue past it.

I am subterranean now. Everybody else is walking around above me, over me, on top of me, unable to see me, or hear me. They have no idea that I’m down here. They are blissfully unaware. I keep sinking, deeper, darker, cold, alone. No light reaches these depths, the silence presses in on me, and the air is dank and rancid. I can’t see, I can’t hear, I can barely breathe. Then, when I just can’t take it anymore, I’m being hoisted upward again.

My body sways this way and that, being thrown about by the moving tracks. My neck hurts from the whiplash. I want off of this ride. So badly. I’d do anything. I begin pulling at my restraints, yanking at them desperately. I break my nails and sprain my wrist. I have to get out, get off. I can’t keep doing this, I need to breathe. Suddenly, there is a loud crack, the sound of a broken spring and my ‘safety bar’ releases me.

You Don’t Have to do Anything

You Don’t Have to do Anything

In this Covid-19 pandemic that we are all currently living in, there seems to have arisen a new social pressure to be productive and achieve. There’s a lot of emphasis of what new skills you will have acquired once the lockdown is lifted. What renovations you will have made to your life and your home. I have seen and heard many people say something similar to “You finally have the time to do all of those things you always said you never had the time for”, and while this may be essentially true, there is no reason why you should now be obligated to do those things.

The thing that these people are overlooking, is that this situation is unprecedented for most of us, and that what we are actually living through a massive shared trauma. For these people, their go-to coping mechanism is to keep busy so that they don’t have to sit with, and acknowledge their feelings about what is going on around them. These people will likely find that eventually they will run out of things to keep themselves busy, or that their thoughts will overpower their actions so that their ‘keeping busy’ tasks are no longer able to distract them. These people are often in denial about their true feelings, and their underlying insecurity requires them to validate their avoidance coping mechanism by shaming others into doing the same things as them.

A common feeling that is shared by many of us right now, is one of helplessness or uselessness. There is nothing we can do and nothing that can be done for us. We have no control over the virus or how our governments choose to react to it. Sometimes, these feelings can bleed into our other activities and soon we find ourselves thinking, what’s the point in doing anything if there’s nothing we can do. This apathy can quickly spiral into depression where we find ourselves wanting to do something but feeling too miserable and down-trodden to act on it. This then circles back to our original feelings of helplessness and uselessness.

Anybody who has suffered with depression before will recognise this kind of cycle, and if you’ve been lucky enough to get help, you’ll have your own coping mechanisms to dig your way out or to manage your feelings. But for a lot of people, this will be a new sensation.

For people who have never had to deal with this kind of depression and isolation, it can be terrifying not knowing what to do. Desperate to connect with people and know that they are not alone, these people go to social media where they are bombarded with all of the things that the “productive” people are accomplishing. They are asked “What have you been up to?” “What have you done?” and suddenly they feel like they have to justify themselves and defend their lack of activity. This will send them down one of two paths. Either they will force themselves to be productive, even though their heart isn’t in it, or the feelings of shame will confirm for them that there is something wrong with them and that they are lazy, useless and wasting precious time etc.

The first outcome will lead to frustration, exhaustion, possibly anger, and no task attempted will be given full attention or dedication and so won’t live up to the standards that the person is now expecting of themselves. This will eventually lead them to thoughts such as “I can’t do anything right even when I try” and a return to depression. The second option reduces self-worth and increases anxiety and depression as well as isolating them further by making them believe that they are the only people feeling this way. These feelings could easily lead to self-neglect or self-harm very quickly.

Depression is not an easy thing to overcome, especially if it’s your first time fighting with the beast, and I’m not going to pretend that I have an answer for you on how to break out of the cycle I described earlier. Honestly, the reason I’m talking about it in the first place is because I am stuck in it myself. But from my experience and knowledge I can present to you these thoughts and observations. I hope that when you read them, you believe them and that they can bring you at least a little relief if not show you the path out.

  • Processing trauma takes time and energy and is a different process for all of us.
  • This is something that has never happened to us before so there is no correct or incorrect way of dealing with it.
  • Just because a lot of people are doing something, does not mean that you should be doing it too or that it is the right thing to do.
  •  Acknowledging your feelings is the first step to accepting them.
  • You are the authority on yourself. Trust yourself, believe in yourself, focus on yourself. Don’t worry about anyone else. Their opinions can’t hurt you.
What and Why?

What and Why?

Last night I felt a rush of very strong emotions. My partner was away for the night and I was alone in the house overnight (apart from the cat) for the first time since we started living together.

When I think about the chain of events, I guess it really started that afternoon when I abandoned my plans to get some work done that evening. Then on the way home I decided to order in junk food in stead of making myself a good dinner. Then I wouldn’t make myself a drink even though I was thirsty. I put on a film but divided my attention with games on my phone so I wasn’t fully enjoying either activity. I put off doing chores that I said I would do, claiming I was too tired and I’d do it later. When the film had finished and I didn’t know what to do next, that’s when the wave hit me.

It began with a tight anxiety in my chest, then I started to cry and I held the cat on my lap, even though he clearly didn’t want to be there, and began begging him not to leave me. I let him go after a couple of minutes because he wasn’t happy being held, but that made me cry harder. I felt desperately lonely. My partner wasn’t easily contacted and I’d also been hoping to hear from someone that I haven’t in a long time but they never responded to my message. I was chatting to one friend online but that contact wasn’t filling the need I had. I remember having the thought “I wish I was somebodies everything.”

My practice when I get uncontrollable feelings like this is to ask myself what exactly it is I’m feeling and why I am feeling it. More specifically, where are those feelings coming from? What triggered them in that moment and what is the underlying psychology that caused this response to that trigger. In the moment I tried to ask these questions but the feeling was too overwhelming and all I could come up with is “I’m just a depressed person. This is my default setting.” This is an old habitual response, something I told myself for years to excuse my behaviour and avoid dealing with my issues. I recognised that then and told myself that it probably wasn’t true but my mind refused to entertain any other idea, so I employed distraction techniques until I was tired enough to sleep reasoning that it could be stress related.

This morning I still feel the residue of last night’s experience but I have a clearer head so I can analyse it more carefully.

Anyone who knows me knows that I have a strong fear of abandonment. This is a learned behaviour. As I eluded to in my earlier posts, I have always been a vulnerable person and as such I would cling to others for support. I have had a number of people in my life whom I loved and trusted and who promised that they would always be there for me. However, when I became difficult, needy or combative, I discovered that those promises were conditional and more often than not those people would disappear without a trace. This inevitably left me feeling unwanted, lied to, betrayed, vulnerable, created ideas about my own lack of value and triggered unhealthy behaviours such as pushing people away when they are present and clinging to them when they are distant. I also formed unhealthy relationships with people who were emotionally unavailable and then tried to manipulate them into fulfilling my needs. Then, of course, when those relationships don’t work out it feeds into the ideas about my self worth and how no one can be trusted.

I also felt and feel extremely unloved and unwanted by my family who were also emotionally reserved. My family dynamics are complicated and not something that I will delve into here but suffice it to say that I was a child who needed a lot of attention and desired clear and obvious affection, but those needs were never met. My memories of my childhood are almost exclusively negative. This is not to say that there were no good times, only that the mind clings to memories that have the most emotional impact and for me very few of the good times were good enough to leave lasting impressions. I also wish to mention that I no longer harbour any ill will towards my parents for their failings. I have held a grudge for a very long time, even entering adulthood and being able to reflect and understand that they did the best they could in a difficult situation, I couldn’t let go of the anger and grief of never feeling loved. It is only since starting this journey that I have been able to look at my parents as people who were also conditioned by the world and their experiences and who were ignorant to the harm they were doing. I can’t be angry at them anymore than I could be angry at a child for doing or saying something hurtful, they don’t mean to, they just don’t know any better. But, nevertheless, trauma and conditioning from your childhood is some of the hardest to overcome so those feelings of being unloved and unwanted are like thin scars on my soul and it doesn’t take much to open them up again, and when they do I bleed heavily.

Understanding my psychological history makes it easier for me to forgive myself for having moments like this one. I don’t remember a precise trigger, it could have been building for a while with stress, lack of sleep, the moon phase, stories I tell myself about how the world should be, but it definitely wasn’t just because ‘this is how I am’. It happens, I recognise why it has happened, I forgive myself for reacting that way and I try to spot the signs before it happens next time. I know that the best way for me to keep my mental health on track is to make plans and stick with them, and yet on this occasion I abandoned one plan after another. I also know that waiting to hear from people can trigger my fear on abandonment, so I should send a message then make myself busy so I’m not consumed by the waiting. I didn’t do that either. I know that I gain more pleasure and distraction from games than film and yet I chose to not fully engage in either. All of these things are tools that I could have implemented to get me back on track but sometimes, in these moments, you can think of nothing but what you are feeling.

Sometimes all you can do is ride it out. And that’s okay. Wait for the storm to pass then reflect, forgive, and try again.

Healthy Mind, Healthy Body

Healthy Mind, Healthy Body

B.M.E (before M.E) I suffered with varying degrees of anxiety and depression and (eventually) sought professional help to cope with those issues. During this time it was concluded that my mental health issues may not be circumstantial and that attempts at “curing” me would probably be unsuccessful. I was therefore taught an array of managing techniques and healthy coping mechanisms so that my long term problems would be less problematic and I could live a more “normal” life. Over all I had roughly 4 years worth of counselling and psychotherapy which included talking therapies, C.B.T (cognitive behavioural therapies), mindfulness, visualisation meditations, proper diet and exercise regimes, the importance of routines and how to maintain them, sleep hygiene, emergency coping strategies etc etc etc. I got really good at looking after myself and became happy, gained confidence and began planning and working towards a future that I wanted for myself.

A.M.E (after M.E) I gained a whole host of emotions that I’d had little to no experience with before. Some of the skills I’d learnt were transferable, some were not. Having used mental health services before and had a positive experience with them (in the end), I wasn’t afraid or hesitant to seek further help. I was however, preoccupied with getting to grips with and managing my physical symptoms and reorganizing my life. So it was only really when it started to effect my relationship that I decided to actively look for help. My GP referred me to Talk Liverpool, who seems to be the umbrella company for all of the mental health services in Liverpool (I may be wrong about this but it’s the impression I’ve come away with). I had a few telephone interviews and had to repeat myself a few times to a few different people and was then put on a waiting list. This was at the beginning of the summer and after a few weeks I decided I had better look for some other kind of support to keep me going in the meantime. This is something that Facebook is good for. I joined a few support groups and was immediately glad that I did and wondered why I hadn’t done so earlier.

Being in a support group provides you with a community of people who can empathise in stead of sympathise and I can’t explain enough how crucial that difference is. Any time you have any feelings about anything, you can post it and within minutes get a dozen replies from people saying “I understand, I feel this way too” but also “This is what helps me” and “Have you tried this?” from people with real life experience of what you are going through. In turn, you find you’re able to give similar responses to other people and feel like the care has come full circle. If I knew when this all started how helpful these groups could be, I would have joined immediately.

Anyway, a few more weeks passed (we’re now into September and I’m back at uni) and I got a call back. I was re-interviewed and re-assessed and I repeated again that I was looking for a talking therapy since I’ve been through a number of different types of therapy before and knew this would be most useful. I also stressed that though I have had anxiety and depression in the past, I was currently seeking help for the struggles that come with living with a chronic illness. The lady on the phone (I’ve forgotten her name) said there was a particular pathway that has to be completed and that I’d have to complete an online course before I’d be able to see a real person. She said she’d ask her line manager if I could skip this part but called back a week later to say that wasn’t possible. So I began the 12 week online course that explained the importance of a good routine and how insomnia can be beaten by winding down before bed and how exercise releases endorphins and going for a walk in the sun can lift your mood and how to be mindful of negative thoughts and so on and so forth.

About halfway through this course I got a call from a different woman who was part of the same team. She said she was on loan from Manchester and that she was checking in to see how it was all going. I told her that the online course I was on wasn’t really suitable but that I was willing to follow through with it if it got me to where I needed to be. She asked me to elaborate and when I did she said “Oh, we have an online course that is tailored towards people with chronic illnesses. I wonder why you weren’t put on that.” I wondered that too. So she switched me over and said that she’d try to rush me through so I wasn’t wasting my time. She was the first person I’d spoken to who seemed to really be listening to me and believed that I knew what was best for me. She expressed her disappointment that Liverpool didn’t have better mental health services and was apologetic to me that they had let me down. She restored my ebbing faith and I followed the new programme.

A shorter number of weeks after that, she called to check in and said that she could sign off on me completing the course. She said she’d put in the referral for face to face counselling but wasn’t sure how long the waiting list was. In the meantime she’d email me some more stuff on the topics that I found particularly helpful. I think it was roughly 6 weeks before I got a call from “Compass”. They had received my referral and were inviting me to a preliminary interview. I went the following week.

That was a good experience for me. The receptionist had a therapy dog that sat with its nose poking out under the door and made an excited run for it when she went to use the toilet. He was fine, she had a colleague dog sit him while she was gone, but his excitement and cheerfulness was infectious. Then the lady I’d come to see came down to meet me. She smiled, shook my hand and introduced herself, very friendly, then she took me upstairs to the meeting rooms. They were very comfortable, the lights were low so didn’t hurt my eyes, the chairs were cushioned, and when the door was closed it felt very private but not claustrophobic. She took notes as I explained what my problems were, very briefly, and what kind of therapy I thought that I would benefit from. When I was finished, she nodded and said I was obviously very aware of my own needs and that she would work with me to facilitate that. She said most of the people who worked there were volunteers, which was fine for people who didn’t know where to start, but she thought that I would benefit more from a professional, qualified therapist and she would try to arrange that for me. She said there would be a waiting list, as there always is, but all in all I left feeling confident and looking forward to my first session.

I got a call and it was scheduled at the end of last week, at a time that I’d indicated would be good for me, but unfortunately I couldn’t attend because I was unwell. I called to let them know and they rescheduled it for me this week.

All in all, from my first GP appointment where I asked for a mental health referral to last week when I would have had my first face to face talking therapy session, it has taken 7 months. All I can say to that is, it’s a good thing I didn’t have extreme mental health difficulties or I never would have made it through this process, and thank God for online support communities because they are the ones who have supported me while I’ve had no support.

Give me Liberty or Give me Death (Trigger Warning)

Give me Liberty or Give me Death (Trigger Warning)

Something happened. I couldn’t walk. For the first time ever, my legs would not take my weight.

The flare up knocked me for six, but when I started to feel ‘better’ again I began to behave normally. Then I needed the toilet, sat up, stood up and fell straight back down again. My legs were trembling and were weaker than they had ever felt before. Sobbing, I had to ask my partner to help me. With one arm around his shoulders and my other hand on my cane I was able to take enough weight off my legs that I could, very slowly, shuffle my way to the bathroom. He took me in but I was far too mortified to let him help me further. I won’t go into the details of how I managed my business, suffice to say that, with great effort and difficulty, I did everything that needed to be done then sat on the edge of the bath to wash my hands. I made it back to the door spreading my weight between my cane and bathroom fixtures, feeling grateful that our bathroom is not a large one, then my partner helped me back to bed. The second I was safely down I erupted with emotion. He brought me pain killers thinking I was in agony, but the pain in my legs was minimal. I cried so hard because I felt I’d hit a new low. Even if I could do nothing else I was always able to make it to the toilet and back by myself. It was the one thing I had and now that had been taken too. What if I had been alone? Would he have come home to find me sitting in a puddle with zero dignity left?

I have been more depressed than usual recently. I have applied to the local mental health team but am at the beginning of a three step programme and a minimum of an 8 week waiting list. So I joined some Facebook groups so I could talk to people who understood and could relate. But I feel ungrateful if I complain too much. Things could be so much worse for me and are so much worse for so many others so who am I to complain?

All I know is that everyday I have this thought; “I don’t want to live like this anymore.”

The Overachiever Inside

The Overachiever Inside

I am a university student in a popular field. The jobs that I will be applying to when I graduate will also be applied to by a large number of similarly qualified graduates. The extra things that I do now,  the extra time and energy that I put in, are the things that will make me stand out from my fellow classmates. This is a widely known fact here. Our peers are our future competition. I want to be a competitor but I also want to graduate.

There are a number of students in my class who couldn’t care less about their futures and those are the people I don’t need to worry about, but there are also a significant number of students who take their education and future careers incredibly seriously. These are the ones who spend extra time in the library, who ‘network’ with older students and other members of the profession, they pick up extra work experience and meet with lecturers out of hours to learn how to improve their grades.

These are all examples of things that I would love to do, and would be doing, if I could. But the extra energy it would take is extra energy I don’t have. Sometimes it takes all the spoons available just to go to scheduled lectures. I do my best to do what I can, but my health always has to be first priority. If I pushed myself to do more than I am doing I would crash and fall behind, making me worse off than I am now. So I have to settle for being an average student and hope that some employer will take pity on me or be won over by my enthusiasm or organisational skills. This is hard for me. As a perfectionist, I want to give everything 100% and be the best. Unfortunately, my body has decided for me what “100%” actually consists of, and I’m afraid it’s not enough to compete.

Now don’t get me wrong, I know I sound sour but, I’m not angry at the overachievers for overachieving. In fact, I applaud them for being so dedicated, as I would be myself. My issue with the overachievers is when they have to make sure everyone knows just how much better they are than the average student.

Go ahead and be the best you can be, that’s wonderful, but do you have to make me hate myself for not being good enough in the process?