Life as a Dysautonomia warrior

Hi there! My name is Tové Wood. I am a qualified biokineticist and a dysautonomia warrior.

My story

My story started out like many others with symptoms that progressively got worse over time. There was no specific ‘event’ or life trauma. It started with chest pain, heart palpitations and an overwhelming feeling of anxiety.

At this time, I was studying my honours degree and was lucky enough to never really suffer from many stresses or anxiety. I often had to walk out of class due to feeling unwell. I saw a few doctors who gave me medication for anxiety and booked me off varsity. At this stage I started to develop neurological symptoms – facial flushing, tingling and numbness as well as difficulty standing up or walking short distances.

My heart would race and it felt like no one understood what I was going through.

Months later and after many tests I found a neurologist who diagnosed me with pandysautonomia. We were uncertain of the exact cause and I was treated with intravenous immunoglobulin (IVIg).

‘How hard can it be to sit up and walk?’

I managed to go back to my studying and finish my degree in that year.

Months later and after many tests I found a neurologist who diagnosed me with Pandysautonomia. We were uncertain of the exact cause and I was treated with Intravenous immune globulin (IVIG).

In between all of this in the last two years I have moved to the UK and am currently still looking for a doctor who might be able to pinpoint the cause of the condition and be able to help find a treatment or way forward.

Where am I now?

Currently I still suffer with dysautonomia, but manage it quite well with medications, movement, nutrition and meditation. I have taken a huge step in moving to a new country and I am working within the NHS, whilst still working as a biokineticist. I volunteer with Dysautonomia International and hope to use my profession to volunteer with other rare condition organisations in the UK.

My current hopes are that aside from taking care of myself and finding treatment, my story will help others to remember that they need to focus on themselves. Having a rare condition can be challenging and often emotionally and mentally draining.

I hope to inspire others to still move their bodies to their own ability and try to manage their condition day to day whilst searching for answers.

What have I learnt?

Since having a rare condition I have taken a massive change of direction in my career. I have found my special interest as a biokineticist in dysautonomia, autonomic disorders and Postural Orthostatic Tachycardia Syndrome (POTS) treatment.

On a personal note, I have learnt a new sense of patience and respect for my own body.

I have realised that taking time to rest when needed, and listening to your body instead of fighting against it can make a huge difference in your lifestyle.

I have learnt it is okay to cry and allow yourself to have a meltdown when you feel you cannot go on any longer, but then look back at how far you have come and set yourself small goals each day to take on your own world.

I have learnt to appreciate my family and friends, and take time in each daily moment. I am grateful for where I am in life and hopefully through movement and motivation, I can help others to keep up their positivity.

Create a place in your world where you feel happy and that instills a sense of accomplishment for yourself.

Follow Tové on Instagram (@Biokineticist_tove) and keep up to date with all things ‘movement’ on Tove’s Youtube channel: Dysautonomia Movement.

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