My name is Melanie, my beautiful eldest daughter is Tori. Together, as mum and daughter, we have been searching for answers and solutions for the myriad of symptoms she started to feel from the age of 14. Fast forward and our journey makes more sense. We have joined the dots of symptoms over the years of experiences: pain, fatigue, dislocations, that together, form the shape of a zebra – a rare genetic condition being the underlying condition.
Today was difficult for Tori, it marked a changing point – the realisation that true consideration and careful planning must be given when living with chronic pain. It was Grandpa’s 80th – a day to celebrate with friends spanning a lifetime and family old and new. Tori was asked to say a few words on behalf of the grandchildren – she automatically said yes. She is known for her way with words and effortless, eloquent manner.
It was an honour being asked but, for lack of a more fitting word to describe it, it was tricky. In the past Tori would have breezed through such an occasion but with the conditions she has there were challenges. Tori has craniocervical instability, chiari zero, syringomyelia and Ehlers-Danlos syndrome and she is currently being assessed as showing the signs and symptoms of postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS); physical chronic conditions that are referred to as invisible. Over time, they start to become more pronounced and visible in terms of rashes, posture, supports such as splints and a neck collar, even heaviness to the eyes – yet ironically to the outside world patients generally still look so well. The point I am making is that one wants to be asked and invited to events. In fact it is so important to keep on inviting them, even if the person often has had to cancel many times.
In my mind Tori should only undertake things that are essential to her wellbeing, things that give her a huge sense of achievement and enjoyment. One has to learn the art of sifting through what you are doing for you and what you are actually doing out of a sense of guilt and pressure. Going that extra mile to please can literally leave Tori crumbling and set her back for days. It is now an underlying rule that if Tori does one thing in a day, the next day must be a rest day. Some days just getting up is the activity.
On the day of the party Tori did the most wonderful speech, beautifully written words delivered to a whole function room of seated guests – no mean feat. But as for Tori, she can’t particularly recall it. Her pain was off the scale resulting in a slightly out of body experience of coping. Her condition impacts all of her senses. Her hearing fluctuates, and she is unable to filter out sound. It was planned that she would speak first before the meal but in fact she was placed last. People spoke over her and her vision went in and out of focus. Of course, she wasn’t going to wear her neck collar for the party, although would have benefitted from doing so. She was left in indescribable pain. The lesson from this day is learning to have the ability to say no without feeling you have to apologise or explain.
Never have I known such a determined girl as Tori who has always been a complete delight in every way. She radiates a warmth yet has the determination of what she wants and where she wants to go. As a Mum, the search has been real in terms of concern and worry; primarily watching the level of pain she has experienced en route to where she is now. She is quite simply unbelievable. As Tori’s health was deteriorating it has felt like a nonstop research master’s degree into her symptoms. But she got there and found a leading expert who picked up quickly what was going on and has provided insight. We are always sharing information and listening to pertinent webinars that allow us to learn from the specialists. It is now dealing with the reality of the condition and linked conditions and forging on to do everything we possibly can to manage her specific diagnosis that includes surgery and ongoing management and care from specialist practitioners. Whilst also finding a way to raise awareness that could help others be directed to the correct medical pathway with understanding and recognition.
I am an occupational therapist and have a natural tendency to look at all experiences holistically and my thoughts are that there is always a solution. I have found, however, it is not until you experience anything in life first-hand that you truly learn. In this case, it has been seeing my daughter’s rare disease experience. Even having some experience with Ehlers-Danlos syndrome I would not have been able to link up her conditions without witnessing the decline in her health. I have brought Tori, Georgie and Jos up as a single parent in the countryside near Edinburgh. I have a real love and appreciation for family, animals and the world we live in and find so much pleasure in the everyday. I love writing, although a complete novice, but with the journey we are on regarding Tori’s health, I have started a blog to document moments and learning but also as a great source of outlet for myself and possibly others on a similar journey: https://mystripeythoughts.wordpress.com