This is an account of how I manage my symptoms of PANS / PANDAS, Autism, and other issues in daily life. It is important to work around our struggles, so that we can live a life that works for us, rather than struggling through life, trying to be like everyone else.
This is what works for me...
I am planning to start self-employment. Self-employment seems like the best method of working for me as I can be more flexible and work in my own way, without the fear of a boss putting pressure on me or judging me. I can tic freely as I would be my own boss and wouldn't have an issue with me ticcing. I would work from home as my tics would make person-centred jobs and jobs outside of the home difficult.
If I am experiencing low muscle tone, feelings of weak muscles, or loss of sensation, I will have a bath as the water can sometimes bring some relief.
I use chewing gum when attending places where my tics could cause major issues, such as funerals, as chewing gum reduces my vocal tics.
I take tissues out with me sometimes in case I have spitting tics. I can spit into the tissue instead of on the floor or on myself.
I have a light which let's me change how bright or dim it is. I can dim the light to calm me.
I use fidget tools when on the phone, to help me focus on what the other person is saying.
In the past, I would wear adult diapers / incontinence briefs, as I had bladder tics.
When feeling agitated, hyper, or finding it difficult to concentrate, I go on the swings or the trampoline. The movement and the sensory input calms me so I can focus more afterwards.
I make sure I have food and drink next to my bed when I sleep. I very often wake up in the night needing to eat and drink, if I don't then I experience unpleasant neurological-like symptoms.
I told a person close to me about an emotional / mental health struggle I face sometimes, so that I can talk to them about it and be supported by them.
I cope through humor, it helps. I often joke about some symptoms as it makes it easier to deal with. Looking at relatable and funny memes also helps.
I remind myself that there are many other people facing what I am facing, and that I am not alone. We are a resilient community who can face this.
I used to use speech to text, as my intrusive thoughts, inattentiveness , brain fog, etc would make it hard to type.
I nap when I need to do so. This used to be something I judged myself for but now I accept more. I sometimes need to sleep during the day due to feelings of low muscle tone and tiredness.
I am planning to get a neck pillow for the days where my muscles feel weaker as it sometimes hurts a bit to hold my head up.
I have most food dyes (including a natural one called Annatto) out of my diet as they trigger rage attacks and anxious feelings.
I have a dairy free diet because in the past it was found to trigger my tics. My tics came back after an infection but I still can't have dairy in case it makes my symptoms as bad as they were when I was a child.
I used to have a ton of accommodations in school so that I could function and get through school.
I would often turn my laptop screen onto 'inverted' colour mode, so that white backgrounds would be black, and help my light sensitivity.
I used to wear padded fingerless boxing gloves due to tics where I would punch myself, this was to avoid causing damage to my body.
When I go out around lots of people, I wear a shirt that says 'Tourette's' or 'Tourette Syndrome' on it, even though me and my family know my tics are from PANS/PANDAS, it is just easier to have a shirt that says Tourette's as it quickly let's people know why you are yelling, people may not know what PANS/PANDAS is so it may not stop people having negative reactions towards me if I had a shirt with that on.
When I was younger, I would use hand sanitizer instead of washing my hands, because it was a way to bypass my OCD handwashing rituals which took hours sometimes and caused a lot of distress. If I just used hand sanitizer I wouldn't need to do the handwashing ritual.
I used to wrap my toothbrush handle in toilet roll as I was worried about the water from the bristles touching my hand (sensory issues). If I didn't do this, I couldn't brush my own teeth.
I take movement breaks when I need to do so, as trying to stay still when feeling hyper is REALLY uncomfortable and counterproductive.
In the past, I used to wear amber-rose tinted sunglasses as fluorescent lights would trigger my tics. Black or grey sunglasses wouldn't work, they had to be a specific colour tint.
I sometimes wear sunglasses now as it calms my hyperactivity and helps me read as I read slower when I wear the sunglasses, meaning that I am taking in what I read and not just skim reading.
As important as it is to be confident enough to request accommodations in the workplace and in school, we must also learn the importance of making changes to the way we live, in order to make daily tasks and life easier for ourselves. We do not have to live in the same way as other people if there is another way which helps us manage our symptoms better and allows us to have a better quality of life.
