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.

My Neck, My Back

Last week I went to see an Osteopath for the first time. I’ve been wanting to see a Chiropractor or something similar for years but never had the money and was nervous about getting there and back on my own.

If you have M.E or another energy draining illness, then you know how exhausting it is to simply hold yourself upright. I spend most of my life lying down, reclining, or leaning forward and supporting the weight of my skull on my hands. So as you can imagine, my muscles have weakened, my posture is horrendous and now my joints are not sitting as they should. Side note: it’s amazing how much damage being sedentary can do to you very quickly.

So it’s always been something that I’ve considered should be part of my treatment/management plan, but it’s not something that is readily available on the NHS since it’s still considered an ‘alternative medicine’. However, after the incident with my neck over Christmas, I’d been living with chronic headaches and a worsening feeling that my neck was just not right. I felt as though at any moment I could turn to look at something, and my neck would seize or crack or something, and I’d be in that agony again. Then I started getting daily neck pain too and that was the final straw for me.

I had contacted the Osteopath in question before our latest lockdown, but when the infection rates started rising again I cancelled my appointment and decided to wait for safer times. But the urgency for my neck to be treated was becoming too much for me to ignore, and I had received my first vaccine, meaning that I was more protected than before (roughly 60% efficacy after the first dose), so I decided to go for it.

The Osteopath was very nice and let my fiancée stay in the room with us too. I didn’t think that this would be allowed but was grateful for it because I have a general anxiety about people touching me, so it was nice to have the moral support (not so nice for him though, the sound of cracking bones makes him nauseous, so I was grateful that he stayed too). But I needn’t have worried, the Osteopath was very professional and asked my permission every time he laid hands on me. He was very young, which made me uncomfortable about my age, but that’s not his fault, and he clearly knew what he was doing.

The experience itself was interesting. Although I knew what to expect and had seen it done on others, it doesn’t really prepare you for the sensation of having your joints adjusted by another person. I knew I would get the best results if I could convince my body to fully relax, but even that was more difficult than I expected. When you have a chronic illness, being in control of your own body become imperative, so being able to go limp and allow someone else to manipulate me is not something that comes easily, and my body resisted. The clicks he got out of my lower neck were subtle but effective. I’m a person who clicks and cracks all the time anyway, just by moving and existing, so I’m used to big, clunky cracks in my joints. What I experienced during this session was tiny, barely audible, baby clicks, but the relief and amount of movement restoration was surprisingly disproportionate.

Immediately after I got home, I felt general muscle soreness (at a completely manageable level) and total exhaustion. I’m not sure how much of the exhaustion was due to the session and how much was from being out in the world for longer than usual, but either way I went and had a ‘nap’ that lasted two or three hours. When I woke, my neck felt so much better. I felt like I had full range of motion back and I wasn’t afraid of hurting myself anymore. It felt like everything was back as it should be. I wouldn’t say it was the best it’s ever felt, but it was as it was before the Christmas incident, and that was more than enough for me. I wanted to wait a few days to see if my body would accept these changes gracefully, before making a final decision about whether the treatment was beneficial or not. My body usually takes two days to react to any kind of exercise, illness, medication, or other physical change, so I knew that just because I felt good right away, that didn’t mean I would continue to feel good. But I did. I did have a little extra fatigue and I found that as my neck got used to sitting in the correct position again, it referred some of its usual pain to my traps and shoulders, but the pain faded and my neck still feels good.

The Osteopath had told me that he’d worked on people with Fibromyalgia before so was being gentle with me and not doing too much so that we could see how I reacted before doing any more work. I am definitely considering going back and having him take a look at my scapula’s, maybe take away some of the pain I get from slouching all day and leaning on things when I stand and walk.

Overall then, a very pleasant experience for me. Of course not all treatments work for all people, but I’m glad that I finally got the chance to try this one out and I would recommend trying it if you’re curious.

Clevermind

Recently, I’ve been thinking about the mind-body connection. We all know about psychosomatic illnesses, the placebo effect, and how a stressful life can lead to heart disease and vegan yogis can live to be over a hundred years old. So it is well established, with medical science as well as observational sciences, that positive mindset improves health and boosts the immune system, whereas negative mindset contributes to poor health and shorter life span.

I have a number of questions surrounding the studies that have been done on the mind-body connection though. For example, I wonder if mindset actually has more of an effect on behaviours that influence health, rather than a direct effect. I.e, if I feel more positively about my prognosis then I’m more likely to take my meds on time, eat better, exercise, look after my hygiene etc. Whereas if I feel hopeless and like I’ll never improve, then I’m more likely to lie in bed, eat junk food and feel sorry for myself. I’m not saying that there isn’t a direct effect, but I wonder if other variables are being discounted in certain studies.

I also wonder about the chicken or the egg aspect, i.e, are people sick because they’re depressed or depressed because they’re sick. I wonder about children who are born with certain illnesses, and who are the happiest, most positive people on the planet but still end up declining and dying regardless.

I wonder how much of the mind healing the body happens innately, and how much of it requires focused cognition. If we stop complaining, repeat daily mantras and visualise ourselves as healthy, happy people, will our bodies feed off of those signals and begin to improve? Or do we have to meditate on the specific area of the body that is damaged and will it to function correctly?

I’ve spoken to a couple of people who have experience with this, and I’m planning to listen to some books that focus on the topic more in depth (including neurological studies on the Vagus Nerve and its effect on the immune system). But, as anyone with a scientific mind would do, I also want to carry out my own experiements.

I frequently practice reducing my pain with my breath and visualisation techniques. I often find that ignoring or distracting myself from the pain only makes it worse over time, whereas if I take a few moments to sit with the pain, observe it, and breathe through it, then it can either lessen in intensity or dissipate entirely. Similarly, there are times where I’m stood at the bottom of the stairs, clinging to the bannisters, looking up in despair as my legs tell me that they are just too tired to take me up, then I take a long, deep breath, imagine the remaining strength in my body and lift myself up one step at a time. So, I wonder what else I can apply this technique to? Pain and fatigue are neural messages being passed from your limbs to your brain, so it stands to reason that I can send messages back the other way to over-ride them, but could I convince a rash on my hand to heal faster? Or an ulcer in my mouth?

I have no doubt that over time the body will heal from an improved immune system and better functioning organs and more regulated hormones, but how much time is required? How much energy is required? How much focus? These are all things that I’m hoping to learn more about.

I have been told that there are people out there who have cured themselves of M.E with the ‘mind over matter’ technique. But my skeptical mind tells me that if they have truly been ‘cured’ then they probably didn’t have it in the first place, and were in fact just suffering from general fatigue. If they have been ‘cured’ in the sense that they no longer have symptoms, then I say, yeah, I did that too, but it’s reliant on my continued treatment regime. I believe that if those people stopped doing all the other things they are doing to keep themselves well, but kept their positive attitude, their symptoms would come back. After all, is it possible to destroy tumours with positive thinking? Or regrow pancreatic cells?

These are things I’ve been thinking about recently. I want to believe but I can’t help but be skeptical.

The Miracle of Science

On March 21st bought my first wheelchair because walking is getting harder and I knew that my 3rd year of University would be more challenging than the previous two so I might need some extra help getting around. Exactly 4 months later, on July 21st, I went for a walk, for the first time since I got sick, without my cane. Today I am going to tell you about my miraculous recovery.

Over the past two weeks I’ve been doing something incredible for my own personal development and also for my future career prospects; I did two weeks of work experience at a biological laboratory. The shifts were 8:30 a.m. until 5 p.m. and I was on my feet most of every day. The Laboratory was based in the next county over so I had to take two buses to get there, meaning that I woke up at 5 a.m. and often didn’t get home until 7:30 to 8 p.m. On the Saturday between the two weeks I also volunteered at my university as a tour guide from 9 a.m. until 3 p.m. standing, walking, talking, and going up and down stairs. If you had asked me back in March if I thought I’d be able to do such a thing, I would have laughed to hide my tears. “I really wish I could,” I would have said “but it’s just not possible.”

This past week I have been able to stand in the shower while I wash my hair and shave my legs, and then dry and dress myself without having to sit down. I have skipped across a car park, run up the stairs, and chased my partner around the room in a play fight.

Don’t get me wrong, I’m in no way “healed” or “cured”, I’m not even back to how I was before I got sick in the first place. I still have to pay very close attention to my body when it gives me those signs and signals to say “you’re near your limit. You’ll flare if you keep pushing.” But, I’m slowly starting to to be myself again.

So how did I do it? Firstly, let’s not underestimate my constant self analysis. I learned about my illness not just through internet searches, community engagement and books, but also through constantly listening to my body and watching how it reacted to certain stimuli. So I knew my limitations well and I could sense when my body had had enough. I knew when I could push harder and when I needed to slow down and rest so the only times I would have a bad flare was when I had to do something unavoidable or I got sick and my body put all its energy into fighting that. This is something that all chronic illness sufferers should do, especially when they have an illness that doctors know little about and there is little treatment for. Know yourself, your body, your illness and advocate for yourself, do what you know is best for you. Once you’ve reached this point, then you can start experimenting with treatments because you’ll be able to feel whether it’s helping or hurting you more. The one that helped me is Dr Sarah Myhill’s Keto Paleo protocol. I’m not going to go into great detail about it here because I have done so elsewhere and also she will explain it better than I can so if you’re interested you should check out her website. I will also insert my video here so you can watch me explain it poorly. Again, the important thing here is that you know what should happen during this process and that you know you’re body well enough to know whether what you’re feeling is expected or something to worry about.

It took about 6-8 weeks for me to start feeling a change. I began to increase my activity slowly and carefully taking a step back if I needed to. But when I first started calling it a success was when I was tired then rested then felt refreshed. This was something my body never did, I used to wake up exhausted but now I was starting to feel like my body was recovering while it slept like it should.

My diet and lifestyle is something I have to stay on top of and if I let it slide too much I start to feel the old fatigue and pain start coming back, but living this way has given my life back so I am happy and willing to do it for the rest of my days.