Our Co-Founder Kieron tells us about how he lives with a neurological disorder…

My neurological story starts at 33 in Jan 2019. 

I was sat in work in a board meeting when I started to feel a little under the weather. I went pale, couldn’t speak and felt as if I was in my own little world and couldn’t understand anything that was going on around me. I was confused and scared.  

The ambulance arrived and I could not say a word, well, only one word sentences! I got frustrated, annoyed and thought this is it! Why me? Why can’t I just get my words out? I knew what I wanted to say but couldn’t.  

After a couple nights in the hospital, I started to pull more sentences out of my mouth but not much, it was hard to articulate what I was thinking and how I should say it. This was very confusing and frustrating, my brain was foggy, I was unbalanced and sloped to one side, I couldn’t concentrate and my memory was muddled.   

I had brain scans and was told the cause of my episode was Reversible Cerebral Vasoconstriction (RCVS) which is a rare condition that occurs as the result of a sudden constriction (tightening) of the vessels that supply blood to the brain. The main symptom of RCVS is sudden, severe, and disabling headaches that are sometimes called “thunderclap” headaches. Strokes or a bleeding into the brain may or may not be present.  

Once diagnosed, it helped me come to grips with the situation. The hospital prescribed me with blood thinners to support the blood flow and I was told I could go home to rest. After some therapy (about 7 weeks) I started getting function back, feeling a bit more normal but still feeling slightly detached from the world. 

 I decided I needed to get back to work as me being at home was not helping. I felt like I was letting people down (the team and my family) by not being able to do anything. In my 8th week of recovery I went to crack on and get back to work as I needed to try and get some normality.  

We had a course that we were delivering to the Devon and Cornwall Police and I thought I would attend with my colleague and friend. The 3rd day in was going well, until it started again, the confusion, the not knowing what was going on around me, I looked at my colleague and said, “It’s happening again!”. The feeling overcame me, the speech went, I couldn’t move, my detachment and then my heart rate pumping with thoughts of, “Is this it? Am I ever going to be normal?” I was scared and felt alone.  

Again, they rushed me into hospital and kept me in for observations. I had more scans/tests and all the time thinking, “What is wrong with me? Why has this happened to me?” I felt worse than before – my speech, my function was disabling, I could not concentrate, brain fog all day and totally detached from the world.  

On reflection I should have listened to my body but at the time, I was in my head saying, “If I don’t go back to work soon I’m a failure, I’m letting people down.” These thoughts and feelings got worse as time went on and even more so when the pandemic hit a couple of weeks after.  

During my 2nd recovery process at home I think I started annoying my family and friends around me. I was hard to talk to, I couldn’t keep up conversations, I had a memory like Dory the fish, my function was disabling my ability to do things daily, I could not concentrate, everything for about 6-9 months was a blur.  

After a few more appointments at the hospital I was then diagnosed with Functional Neurological Disorder, a condition that to put into simple terms is; my hardware brain was fine but my software nervous system doesn’t link up to my body and signal as it should. This means I can be prone to seizures, episodes and all the symptoms of a stroke.  

After coming to terms with my situation, I decided to try and get better, I was trying to read more words, speak more words and move more. The pandemic helped in a way with my recovery as everyone was at home. I started walking every day, doing HiiT workouts (as much as I could with my function), meditation, yoga, changed my diet, sleep patterns (although at the time I napped a hell of a lot), over time I started feeling better in myself and my ability to do things. The more I did something repetitively the more I was getting stronger.  

Damaged brain cells are not beyond repair, they can regenerate, this process of creating new cells is called neurogenesis, the brain is a powerful tool and can open new pathways in all sorts of ways.  

I am not at all the person I used to be but now the person I want to be. I have my mechanisms and ways to overcome the challenges to move forward that I have learnt over time. Things can’t stop, time stops for no one and we have to look after ourselves and self-care, surround ourselves with positive people, look after friends, family, be kind and live life the way you want to live it.  

If you are in the same situation or have been through similar circumstances don’t give up on yourself, you are only against yourself. 

The way I look at it is (from a Youtube video) …. 

We used to be in tribes in villages of up to 100 people and everyone had a skill. They had something they were good at and the competition was minimal, everyone had a place. Then boom – thousands of years later social platforms are here! So where we used to be good at one thing (making fire, fixing roofs, collecting firewood etc) within your tribe, we suddenly found ourselves out of place. We were no longer competing just within the tribe. We ARE now against the world.  

This is how connected we are, trying to outdo one another, when in reality we should be focused on outdoing ourselves on a daily basis, doing better than the day before and working on what you are good at. 

Going into my feelings and emotions through what had happened to me and dealing with my condition, I have thought many times up until the present day to end my life. It is hard to articulate to people and it is not something people want to talk about and I am sure people reading this would have felt the same at some stage or had thoughts of the similar nature. This, I have never talked about in my social forum but, only behind closed doors with a select few people. This is the reality of my situation and isn’t an attention thing or a feel sorry for me part of this message, it’s the demons and reality of what I’ve been up against on a daily basis. 

I can’t tell you why I think this, and a lot of people can’t but it could be due to many factors of what I have experienced and gone through in the past or on a daily basis of my condition. The memory, the dropping things (functionality), functional seizures, dizziness, walking difficulty, dystonia, chronic pain, sleep issues, tremors, swallowing issues, sensory issues, the speech problem, the feeling stupid around people, my previous career in the Marines, the pain and the deficits I’m struggling with, the anxiety, the feeling of going through what had happened again and the many seizures and episodes I have had up until now or could be many other things. It is weird how the brain works and how we think but this is what I deal with and have to overcome. 

Now that mental health is talked about more it’s not unusual to hear this sort of thing, and the best thing that has kept me going is talking to people, gaining a network I trust, attending counselling and therapy and try to be the best person I can daily. I don’t need a lot in life I have my kids, family, select friends, make a wage and live day by day.  

If anyone is struggling its ok to talk, its ok to be emotional, its ok to cry, let it out, don’t keep things bottled up, even in the darkest of hours and days there is always light.  

Emotions heal, bodies heal and overall you can heal!  

It is all about the choices we make and decisions that lead our futures and the way we live our lives.  

Reach out to organisations that can help there are thousands UK wide. 

 

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