Neuroplasticity

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.

The Here and Now: An Update

Once more a little more than a month has passed since my last blog post. The main reason for this is simply that although many things have happened nothing big and important enough to blog about has happened. Therefore, this blog post will be a basic update of my life over the past month and a bit.

Rollin’ Rollin’ Rollin’
Since the last post was about my cane, it seems appropriate that I begin with the news of my wheelchair. Every now and then, and far more often than I’d like, I have days where I need to do something but physically cannot. I’ve been thinking recently about getting a wheelchair and I know I’ve mentioned it on here before as well. Recently I had one of these days and it upset me more than usual. So the next day my partner and my crutches helped me to walk a few feet up the road to Ableworld where I’d spotted a wheelchair that I liked previously. I wanted to try it on a bad day to make sure that I’d still be able to use it, and I could. So we bought it and that weekend we took it bowling. I had a little trouble getting on and off of the bus, and I felt horribly embarrassed by that, but I’m happy to know that the chair is there if I need it, so hopefully I won’t have any more of those days where I have to decide whether I’m going to do what I need to do or what I have to do.

Not a diet, a lifestyle change
I have heard a number of chronic illness patients swear that a clean, low carb diet has helped to improve their symptoms. I’m not just talking about M.E here, but a whole variety of chronic conditions from pain and fatigue to migraines and allergies and, of course, digestive problems. A few of that number talked about a book by Dr Sarah Myhill. She believes (as do many scientists at this moment in time) the symptoms of M.E and Fibromialgia are caused by a lack of normally functioning mitochondria in the cells. Without going into too much scientific jargon, the mitochondria are what give our cells energy and if they can’t do that effectively, or if there aren’t enough of them, we are left without enough energy to function correctly. This explains the array of M.E symptoms including not just fatigue but brain fog and a faulty immune system as well as others. She suggests that by eating a keto-paleo diet we can help our bodies utilise the energy we get from our food more effectively. Combining this with proper pacing techniques so that we don’t waste the energy we do have, and supplementing with vitamins and minerals known to aid cell metabolism, we can gain back a percentage of our functionality. Of course, where you start will effect where you can go, she never promises a full recovery, and it is a life-long regime, but considering how many times I’ve heard it works, and the sound science behind it, it’s definitely worth a shot. I’ll leave a link to her website here if anyone wants to learn more: CFS The Central Cause: Mitochondrial Failure
So far (it’s been about 4 weeks) I’ve not noticed much difference in my fatigue, only an improvement in my digestion, but I’ve not been taking my supplements or tracking my carbs so although I have, for sure, drastically reduced my carb intake, I don’t think I’ve entered ketosis.

What’s in your head?
I’ve started seeing a new counsellor with Talk Liverpool, the lady I was seeing at Compass did not work out at all. I really tried to make it work with her, but every session I went in looking for answers and all I got was patronising sympathy. Basically, I would go in and say “this is really hard for me” and she’d respond “wow, that sounds really hard.” It wasn’t beneficial at all. The new woman I’m seeing, Claire, is much better trained. She knows how to listen, empathize, and reflect my thoughts back to me in a way that makes me dig deeper. I’ve just come back from my seventh session and I really feel like we’re getting to the crux of my problems. I am very optimistic.

A new addition
We got a cat! I know a number of chronically ill people take great comfort in their pets. They say that animals can sense when you are unwell or upset and they find a unique way of confident you. However, our new cat, at 2 years old, is still a kitten. As much as I love him and he can make me laugh, he’s more needy than I am. He requires a lot of attention and having him around the house is almost like having a toddler. He gets into everything, he destroys anything that isn’t nailed down, he’s constantly under our feet, and he cries for your attention all the time. I wouldn’t give him up for anything, but he really does try my patience sometimes. So much for a therapy cat.

Two down, one to go
My second year of uni is drawing to a close. It’s been demanding but enjoyable. I’m becoming quite apprehensive about the coming summer. In order to gain employment after I graduate, I need to have real world experience. I planned to get this experience over the summer months but I’ve been trying to contact places since before Christmas and still don’t have anything in place. As a chronically ill person, I know that employers will be hesitant to take me on, so I know I need to have something really special to be considered ‘worth the risk.’ Without any kind of experience, going into the job market is going to be disastrous for me. There are people at uni who can help me with this, but at the moment,  time, revision, and a little bit of pride, are getting in the way of me asking for help.

There’s probably some bits and pieces that I’m forgetting but for the most part you can now consider yourselves updated. I hope to bring you some more meaningful posts soon.

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.