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Author iwan sadler

Happy Anniversary Myelopathy.org!

Today marks the first anniversary of our official charity launch at the House of Lords.  This was a great milestone in the myelopathy.org journey and one I will never forget and which I will cherish forever.

Cervical myelopathy is a condition that is truly life-changing in so many ways both physically and mentally.  I was devastated after my diagnosis in 2014 and being told my whole life was about to change.  Looking back I could never have imagined the journey I was about to embark on.  I have met so many remarkable people since 2014 who I’m now proud to call my friends.

The feeling of devastation after my diagnosis with cervical myelopathy slowly relinquished as I sat at my laptop thinking of ways to raise awareness of this overlooked condition.  Slowly but steadily I worked on my Facebook campaign as the constant pain meant I was limited in how much time I could spend on my laptop.  Finally, I launched the first Facebook community page for cervical myelopathy and slowly it gathered likes and followers.  One follower in particular (Dr Benjamin Davies from the University of Cambridge) led to the start of the amazing collaboration with myelopathy.org.  Ben asked me to share my story on the newly launched myelopathy.org website which he had set up with Dr Mark Kotter and after some consideration I finally agreed.

A few months after my surgery I finally met up with Mark and Ben at their Cervical Myelopathy Day in Cambridge.  We immediately hit it off and not long after we decided to work together to raise awareness of cervical myelopathy and to make a positive difference to people with the condition.  Our online presence grew and the positive feedback drove our passion to create more and more content for the site.

The last five years have seen us go from strength to strength and in 2018 with the help of our new team member Dr Michelle Starkey myelopathy.org registered as a charity in the UK.  Myelopathy.org became the first worldwide charity for cervical myelopathy.  Since our official launch last May three new trustees have joined the board and the charity has partnered with AO Spine and the James Lind Alliance to establish a research project, RECODE DCM.  Health professionals and people living with cervical myelopathy from around the world came together in New York in November 2019 to establish the top ten research priorities for cervical myelopathy research.

We have a long road ahead of us but with the team of volunteers that we are lucky enough to have we can truly make a difference.

Stay safe!

At Chandos House on Charity Launch Day
Shirley Widdop, Iwan Sadler, Monica Mahon and Delphine Houlton on 7 May 2019 at Chandos House, Royal Society of Medicine
The Palace of Westminster (London, UK)
Photo by Marcin Nowak on Unsplash

Meditation and Myelopathy

Slowly my myelopathy symptoms increased day by day and it quickly came to the point where I developed a new muscular twitch or nagging pain daily. I wasn’t getting much luck with my pain relief and when I had a terrible day, which was nearly every day pre-operative, there was no other option but to increase my assortment of medication. This left me feeling like a walking zombie on autopilot with a terrible brain fog. I couldn’t think straight, let alone perform the simplest of tasks which, left me confined to the house more often than not.

Man sitting staring at the sunrise

Trying to find a comfortable position to be in got harder too as sitting upright for a long time without my head supported was quickly becoming an impossible task. One afternoon I went upstairs, placed my cervical pillow on the bed and laid down. I had recently bought a phone/tablet holder, the type that you attach to the bed, as I wasn’t be able to hold my phone or tablet without my arms and hands giving way and the device suddenly face planting me! Holding anything which incorporated the use of my neck and shoulder muscles resulted in a muscular burn very similar to the one you get when lactic acid builds up in your muscles during an intensive workout

That day I logged onto my phone and for some reason my YouTube app was open and the first video on my home screen was meditation music. I put my earphones in and scrolled through the list as the muscles in my arms strained painfully from this action alone. I chose one of highly viewed relaxation music videos, adjusted my cervical pillow and positioned myself as comfortably as I could. I gazed up at my phone screen as the meditation music played and within a few minutes my eyelids and body felt heavy. I felt as if my whole body was slowly sinking into my mattress.

When I eventually opened my eyes, it felt like I had been lying there for a few minutes but in fact I had been there for nearly an hour. What struck me immediately was that I was in considerably less pain without needing copious amounts of pain medication which, was a real bonus. However, my symptoms seemed to get worse as the day went on, my head felt like a giant bowling ball and my neck muscles were constantly struggling as if they could not cope with the weight of my head. Hence, my evening relaxation sessions listening to relaxing music became a regular thing. Stress also has a physical effect on muscles especially those in your neck. As you tense up, the tightness in your neck muscles can contribute to neck pain especially if you have myelopathy. So, helping your neck muscles to relax also helps with pain relief.

I started looking deeper into the benefits of meditation and mindfulness because of the positive results I was experiencing. I moved on from relaxation music and started listening to guided meditation sessions instead. There are plenty of free ones on YouTube however, they vary in length of time and I would highly recommend you start with a short-guided meditation of around 5-10mins a day. You can then gradually increase this to suit your lifestyle when you get more used to the techniques. Just as rest and recovery are vital for your body the same goes for your mind and meditation is exactly that, an opportunity to put the hustle and bustle of daily thoughts and stresses to one side and give your mind a well-deserved rest.

The meditation that I find most beneficial is often referred to as mindfulness but to me that infers a mind full of thoughts whereas meditation is the total opposite. It is also described as a practice to quieten the mind, but it is almost impossible to quieten the mind totally without years of training so this wouldn’t be my choice of description for the meditation that I do. During a session thoughts will drift in and out of your mind, the intention during meditation is not to get involved with the thoughts or to judge them, just to make a mental note of them, and let them pass. I quickly realised that meditation didn’t just help me with pain it also helped me mentally to learn to live with myelopathy and its many challenges.

There are many other ways to meditate but this technique is what I use and find most beneficial for myself. Also, I feel I should just mention that you don’t need to meditate in the lotus position. I do it sitting up with a neck support and also lying down. The important thing is that you have to make your body comfortable before you can begin. My other advice would be not to force a meditation session or expect instant benefits, like everything practice makes perfect and make it enjoyable, not a chore. Eventually treat it as a daily routine, a time out for your mind from the busy world outside because your mental health is just as important as your physical health.

Basic Meditation Technique

Find a comfortable position. You can either be seated on a chair or on a bed. Keep your back upright if you can (but don’t force it). Notice your body and relax. Take a deep breath and focus on the experience.

Feel the natural rhythm of your breath. Notice the air temperature in and out. Let your breath flow naturally. You don’t need to do anything. Your body knows how to breathe on its own — don’t force it. Notice how your chest expands and contracts. Focus on your body — one breath at a time.

You might get distracted at some point. That’s okay. Don’t judge yourself. You can say “thinking” and let your thoughts flow naturally. Reconnect with your breath. When the five minutes are up, focus on your breath one more time.

A technique that I find very useful for when I get distracted is that I visualise that distraction as a bubble and as it enters my mind while meditating, I then imagine myself popping that bubble before it can manifest into a thought.

Practicing this exercise daily will improve your breathing but also bring calmness and more awareness to your life.

Scientific studies have shown that there is a long list of benefits of daily meditation, it costs nothing to do and you can do it from the comfort of your chair or bed, I’ve even done it on a train journey! There are some great apps you can use, one of my favourites is Inside Timer where you can log your activity. There are some great free guided meditations on there that I would highly recommend. To further convince you to give it a try we even have a myelopathy group on there that you can join. So why not give it a go, you really have nothing to lose and everything to gain.

 

Iwan 27.2Kminutes 529 Total days