I am going to start this blog by sharing my own experience of living with chronic pain and neurological problems. I will then talk about some strategies that I have put in place over the last twelve years that have helped both me and those that care about me know what to do when I’m having a bad flare up. The most important thing I want to say is that although I am now categorised as having a disability, I try to not think of myself as disabled. This helps me to remain hopeful when I do have bad pain flare ups, although is a double edged sword as also at times makes me burn myself out which does not help the flare ups.
So my neurological issue which is now known as a trauma of the central nervous system, began in my mid-twenties, I started getting a loss of sensation in my leg and would suddenly fall over for no reason. Due to other health issues going on at the time, the medical profession blamed my symptoms on those. The NHS kindly gave me an ugly wooden stick and sent me to this neurologist with no bedside manner, who told me stop being so vain. Although they could find nothing on any scan they started trying me on various medications, and over the years you name it I have tried it. When you go from being fully able bodied to using a stick all the time, everyone feels they have a right to know what is wrong with you, and everyone thinks they are a health specialist of the subject. I have even had people come up to me in the street telling what to do.
The attacks started to happen more regularly in my late twenties and I then started getting bad migraines. When a migraine attack happened I would get a shooting pain starting from the back of my knee all the way into my heel. Fortunately, the migraines have died down now. When I get the pain today, it is like if you were to put your wet finger into a plug socket. It is like an electric pain going down my leg. These attacks still happen suddenly 4-5 times during the week and then at night when at rest my sleep gets interrupted.
At the moment I am refreshing my knowledge on mindfulness and this year have even attempted yoga. These have both helped me to gain a better relationship with my body. When I know I am burning myself out, I have learned to nourish my body with a massage or acupuncture, but the most important thing is for me to slow down and ask for help from family and friends.
I am a fiercely independent person. Following a COPE Pain Management programme at the National Hospital for Neurology and Neurosurgery, I have learnt to plan for a flare up. “What does that mean?” I hear you say. My therapist, family and work have a plan of what I need to be reminded of doing when having a bad flare up attack. I have learnt small amounts of exercise such as walking is good for my body on these days, I am not talking about a 5 mile hike, more a slow mindful walk around the garden or up the road. Communicating our needs to those that love and care about us when we live with any health condition is extremely important. Often those close to us find it as difficult to witness our struggles and research shows that they are also likely to need support at these times as well.
As a therapist who has worked around the issues of sex, relationships and sexuality for many years. I am amazed that not one member of my clinical team ever asked me how this affects my sex life or relationships. So to any of my colleagues, or even if you are a friend or family relative to someone facing similar issues, be mindful around the holistic effects of living with a chronic health condition, as we are all entitled to a good sex life. Living with a chronic health problem should not get in the way.
I am now coming towards the end of a Postgraduate Diploma in Trauma Therapy. One key moment this year was realising when I am out and about, or struggling with my neurological health issues, I am very stuck in my body, and it has been a learning curve to look out at the world when in a flare up. I am thankful to the lecturer who reminded me of this.
Remember your chronic pain or neurological health issue does not rule you, you rule it. Be nice to it, nourish it and ask for help when you need to. Here at Joel Korn Counselling I am able to take what I have learnt over the years about my pain to help you deal with yours.
Make finding time for yourself your New Year’s Resolution.