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It's Been 2 Years

2 years ago (Friday 13th March 2020) I realized that something was very wrong. I was out of control of my thoughts and experienced what I called 'Opposite thinking'. These were OCD intrusive thoughts. I wondered if a psychic could be attacking me and influencing my thoughts, so I spent most of the night researching this. However, my short-term memory was so bad that I would click on the same article multiple times as I had forgotten that I had just read it!

I went and prayed in a bush to try and stop any 'negative entities' from influencing my thoughts.

I felt like I was in a dream, the world felt hazy. I became sad, and lost motivation to do the things I loved the most. I would black out for ages and then snap back into reality realizing that I had neglected my surroundings. I was more irritable than usual and was losing my emotional regulation.

Things got very bad, very quickly. My OCD got to the point where I was having multiple intrusive thoughts a second. I counted 7 trains of thought going on at the same time at one point. I was burning up with fear and was petrified that my thoughts would become reality. I thought that I was going to be responsible for the end of the world. I cried to my mum and wailed that I wanted to be put into a medically induced coma until it ends. I thought my thoughts were going to cause terrible things to happen, but there was no way I could control the intrusive thoughts.

I lost my gross motor coordination. I tried to reach to grab something in a cupboard but missed, my arm swayed too much to one side. I struggled to hold a fork correctly as I could hardly feel where my arms were. My arms felt heavy and jelly-like.

I had a constant incoherent stream of thoughts that I had 0 control over, so my mind was never quiet. These thoughts liked to keep telling me that I was a 'worthless piece of sh*t' but I knew it wasn't really me having those thoughts.

I lost sensation throughout my whole body, starting with the left side of my chest. I also temporarily lost the ability to swallow at one point. I lost a lot of weight as well because the anxiety killed my appetite.

I genuinely believed I was going to die.

I struggled to write or type even a sentence because my thoughts would interrupt and make me freeze. I had around 5 assignments due at the time but had to get an extension on all of them, I'm proud that I was still able to complete them when I did! I developed a lot of hyperactivity, I had never experienced this intense level of hyperactivity and inattention before, but my thoughts were racing and I couldn't stay still at all. It isn't typical to develop severe inattention and hyperactivity at age 17.

My pupils were very dilated. I developed dystonic tics where my arm would almost get stuck being tensed up and my legs would be tense whilst walking. My handwriting deteriorated greatly and my ability to sleep reduced. I woke up after just 3 hours repeatedly, hearing my thoughts arguing. After this phase, I was unable to sleep until the sun had risen.

I laid on my bed and accepted that I might die... thankfully I obviously didn’t, but at the time I thought I would. At the same time as all of this I had a throat infection, so my mum said that she thought this was PANS/PANDAS. Before this huge explosion, I had been free from OCD for years and my tics had been virtually non-existent for over a year. However my tics returned suddenly and plunged me straight into a tic attack.

Thankfully after the worst of it, I did get better. Some of my symptoms reduced on their own and some reduced with antibiotics and antidepressants. I was extremely happy after the worst went away, I felt so lucky to be alive! I cried from gratitude that I got better and I also cried from gratitude after learning more about PANS/PANDAS because it explained everything. It explained the brain fog, the fact that I had overnight onset OCD when I was younger, the separation anxiety I had until age 13, etc. I meet the diagnostic criteria for PANS, but unfortunately I am not yet formally diagnosed as I was unable to get the appropriate medical assessments at the time, which does make me feel sad. Where I am now 2 years later is that I am free from OCD, free from coordination issues, free from memory issues, hardly ever experience hyperactivity, and my mind is sharper and my thoughts are a lot less irrational. I still have severe tics, I deal with low mood sometimes which can affect me a lot, I developed episodes of muscle fatigue which are disabling and I sometimes have to use a neck pillow to hold my head up. My handwriting is also still terrible and I still have a bit of behavioral regression. Overall though, I'm no where near as bad as I was. So although I do get a little sad that I still have symptoms, I'm grateful to be alive and better than I was.


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