Blogger, Melissa Smith, has Symptomatic Tarlov Cyst Disease, a rare spinal condition that affects the nerves in the spine. People with Symptomatic Tarlov Cyst Disease are affected by a number of cysts along the nerve roots of the spine, which can cause significant pain. An operation to remove the cysts also left Melissa with nerve damage in her lower back. Melissa blogs about her experiences at Feelgoodcom.org, a community she built up following her diagnosis.
We spoke to her about how she manages her pain day-to-day and how it affects her sleep.
“The way I live day-to-day has changed hugely since I was diagnosed. I was incredibly active and went to the gym five or six nights a week. Me and my partner even had date nights at the gym. While I was being diagnosed I had to stop all exercise as we weren’t sure what exactly was wrong. And while I can do some forms of exercise now I’ve had to change what I do and how often.
I also had to change my job. I was a Special Educational Needs teacher but it was just too physical. I’ve embraced a whole new creative career working for a charity, which I love.”
“I’m in pain, to some level, every day, so for me the most important thing has been changing my mindset. When I was first diagnosed I spent ages focusing on what I couldn’t do – I missed exercising and was in a real rut. Luckily, I was surrounded by really supportive people and one day my sister told me I needed to start focusing on the positive things in my life. At first, I was really angry as I just wanted my old life back, but what she said kept going round in my mind and I decided to take her advice and focus on things I can still do, like doodling, which was something I started in the hospital and is a great creative outlet for me.
Being active is still really important to me and it helps me feel more in control. One day I thought there were probably lots of people in similar situations to me, so I put a post on Facebook asking if anyone wanted to join me for a walk. Thirty-three people and three dogs joined me for a gentle stroll in the park and a cuppa at the end, and the Feel Good movement was born. Since then it’s grown significantly and organising Feel Good events helps me focus on the positive and gives me a real sense of purpose.
Two other things that I find really helpful day-to-day are meditation and pacing – just checking in with myself regularly to make sure I’m not overdoing it and that I’m not doing one activity, even just sitting, for too long.
When I was newly diagnosed I went on a hospital rehabilitation course to help me manage my pain. I learned how to move my body in certain ways to minimise pain and how to sit and stand properly. Now I always try to breathe deeply and keep my body relaxed.”
“I can find it really difficult to find a comfortable sleeping position as I can’t really lay on my back. I also find that when I’m having a flare up I can get stressed, which makes it difficult to fall asleep, which just makes me more stressed. It’s a vicious cycle!”
“I try to keep our bedroom clutter and technology free, so it’s a tranquil, relaxing space for sleeping. I don’t use my mobile from 8pm onwards and I find meditating before bed can help get me in the right frame of mind for sleep.
I also use pillows to help me get in a comfortable position, whether that’s at my back or between my legs. My husband jokes it’s like sleeping with the Great Wall of China between us. I’ve always invested in good quality pillows too as it makes all the difference.