A guest blog from a fellow cyster!
Note from Melissa: In this new world of life with a long-term condition, I have found great solace in connecting with others in similar situations, especially those who share the same Tarlov Cyst journey. As we are rare it can be hard to find each other. That’s where online groups can help. Tarlov Cyst UK Support Group was the catalyst for me connecting with Kate. So imagine my joy when I found out Kate also uses creativity to help her colour her life with new possibilities. Kate has kindly agreed to write a guest blog, so take five minutes out of your day to have a read and a look at her amazing artwork!
What life was like
Recently, I told my boyfriend that I miss going running. Okay, so I rarely actually used to go running. I was more of a ‘gentle stroll with the dog’ kind of girl. But I miss the possibility – how I took it for granted that I could go for a run, that I could hike and cycle and horse-ride and be mobile with only a smidgen of pain and mildly aching muscles. Nowadays, I feel far more vulnerable and limited, struggling to walk far without being in crippling pain, and I’m not sure if or when that will get better. Accepting the unknown has been the hardest part of my journey.
Open Back surgery
In January this year, I had surgery to operate on a symptomatic Tarlov Cyst in my sacrum. It involved a sacral laminectomy, where part of my sacrum is removed and the muscle cut right through to access the cyst. The cyst cannot be removed as it is attached to nerves, so it is drained and plugged with fibrin glue in an attempt to stop it refilling and to minimise pressure on the nerves. Along with the cyst that was operated on, I have two other Tarlov cysts, degenerative discs, and two benign tumours in my spine.
Rare and Misunderstood
The surgery took place three years after a fall from my horse and after a hard-fought diagnosis by Specialist Neurosurgeon, Adrian Casey, at the Royal National Orthopedic Hospital. I had initially spent a week in my local hospital undergoing various tests resulting in doctors still unable to find any cause of my unrelenting pain and discharging me with a cocktail of opiates and no answers. Tarlov Cyst Disease is incredibly rare and misunderstood. It means that across the country, people in horrendous pain and with debilitating mobility issues are being ignored by those who are meant to help them. There is no cure for it, and Mr Casey is one of the few surgeons in the world who will operate on the cysts in an attempt to relieve pain and prevent further nerve damage or bone erosion. It can take up to two years to determine what success if any, the operation has had once the nerves have regenerated.
To agree or not that was the question
Consenting to surgery was an extremely difficult decision as, whilst still in pain, it was manageable with low-level medication and I could live a relatively normal life with infrequent flare-ups. However, I was concerned about what my future held – many sufferers of this condition end up in wheelchairs, catheterised, and unable to work. So, in fear things would only get worse as I got older, I went ahead with the four-hour pioneering operation. I naively expected to bounce straight back after surgery and that it would give me a new lease of life. I never expected to be so completely and utterly floored by it.
I was uncomfortable with relying on other people, being initially unable to cook for myself, wash myself, walk or drive. This stubborn independence pushed me to do too much too soon and I was recently told off by my surgical team for not resting enough, having caused severe sacral bone marrow oedema by overdoing it. When I rest, I am just reminded of the constant pain and what I have lost.
Losing My Happy place
In November 2017 my beloved horse, Nebu, was euthanised. He was my happy place, my identity, my reason for getting out of bed each morning. Losing him prompted a spiral into a deep pit of depression and anxiety. I cried every day and it felt like I was living under a dark cloud where the world had lost all its colour. In some ways, the surgery forced me to crawl out of that, especially when I suffered post-surgery complications with critically low blood oxygen levels (hypoxemia). The medical issues I was dealing with were an, albeit difficult and unwelcome, distraction from my grief.
A new way of coping
However, the greatest distraction from my grief and pain has undoubtedly been rediscovering my love of art. Shortly after coming home from the hospital, someone on the online Tarlov Cyst Support Group recommended art therapy to me. Having not picked up a pencil or paintbrush since school, I began nervously and self-consciously, by doodling and sketching Nebu, as a way of channelling my grief and focusing my mind on something other than the constant physical and mental pain I was experiencing.
Re-Finding my purpose
The feedback from my loved ones was encouraging and so I gradually branched out into doing more detailed drawings of all kinds of animals. Requests from friends then started coming in and now I struggle to find the time to complete commissions or explore my new hobby. Especially having gone back to work – part-time and on limited duties (and too soon in the eyes of my doctors!) – but I feel like I have a purpose again and, with the pain not easing and the future uncertain, especially when it comes to my career, having that purpose is crucial to keeping my head above water.
Colouring in my new world with colour
On some days, when the pain is all-consuming, I am reluctant to do anything except wallow in self-pity. However, once I sit down with my art materials, I find that hours have suddenly passed without me thinking more than fleetingly about my pain. It gives me meaning, and joy and hope. The world has regained its colour because I have drawn it in myself. I am lucky to be able to explore this new-found obsession and it encourages me to be grateful for the things I can do rather than bemoaning the things I can’t do. The inspiration for art, and for life, is all around us, and that is what makes me feel good.
Connect with Kate
Follow along Kate’s journey on Instagam. If you have enjoyed reading this please do leave a comment…