An interesting topic I have been researching and exploring for over a decade, the human brain. Upon the early onset of Myalgic Encephalomyelitis (M.E.) the shockingly real symptoms of the brains cognitive dysfunction were very present indeed. Now, I had to take my book knowledge and put it into practice for my own life experience. The only problem was I had cognitive dysfunction and this was the challenge in itself. Being the granddaughter of a WW1 Veteran from The Battle of Passchendaele, who survived having half his face blown off and underwent reconstructive surgery, the challenge seemed rather small in comparison.
Thus I began my healing journey deep in the M.E. trenches, a very remote and isolated place indeed. The truth is I wasn’t able to begin to treat my cognitive dysfunction until I had learned pacing. Still to this day if I break my pacing rules, cognitive dysfunction sets in. When I menstruate every 21 days and blood flow to my brain is limited for a week or two, cognitive dysfunction sets in. If I am over stimulated or put in stressful situations of any kind, cognitive dysfunction sets in. Thus I haven’t cured my cognitive dysfunction I have learned to improve, manage and work with it. Acceptance that you have cognitive dysfunction is key, once again. The word that keeps on showing itself in the healing journey living with M.E., acceptance. I wonder how my grandfather accepted his face needing reconstructive surgery after being struck by shrapnel?
Brain fog was how I referred to this symptom early on in my healing journey, it is but it is so much more than a fog. However, like with most symptoms of chronic illness like M.E. everything this is downplayed, given a sticky note labelled unimportant. As though the brain fog simply lifts just like that after the early morning rain, it doesn’t. Once again thank goodness for specialists who treat conditions like M.E. as they truly are the only humans who understand what the patient is experiencing, validate people and provide different ways to treat multiple complex and global symptoms that are tested and true. Treatment is what I did and learning pacing was my first job on the treatment list. It didn’t come easy, there is much trial and error as well as changes during this process. In truth, learning pacing takes a minimum of two years of practice with some serious relapses costing several months to recover. This is the reality because you are on you own to navigate this new remote and isolated world of M.E. and disability.
Once I identified my pacing requirements, applied them and learned how to live within them with no exceptions ever. That is when things began to change and only then. I will repeat no exceptions ever! This is when a person living with M.E. must learn to advocate for themselves, constantly and effectively. I had an extensive and expensive supplement routine, medication and a CPAP machine for sleeping that were all required for recovery. As I was diagnosed with severe obstructive sleep apnea, for those that don’t know this causes a cut off of oxygen to the brain during each apnea. It is necessary to treat for cognitive dysfunction. These are important details to my experience of improved cognitive function. However, pacing remained key. Stop, rest, pace and repeat. Like an old tape player in constant rewind to begin the album yet again.
Why was pacing so important to me? It is simple. Once I stopped going over my energy threshold, I also stopped having bodily restrictions affected due to over use of energy stores. My energy stores within my body are broken and unhealed from a virus. I must always respect this without exception. This is part of living with M.E. and also is what causes disability within the body. At this time nearly two and a half years into my journey, I was able to first begin focus on other things in my life rather than my pain, suffering, health, symptoms and all these feelings that go around and around the body and brain day after day. It was a very long two and a half years of negative and traumatic bodily awareness which was often times extremely alarming and scary, but it was necessary to get to the other side. When I came out of this period of time after two years I was housebound with no exceptions. With the strength of a WW1 survivor on my side, I persevered and continued upwards and onwards. If my grandfather survived his nightmare continuing on through the cold muddy rat infested trenches of war, I could survive my challenge to live with M.E and disability.
The things I focused on were all things that would begin to rewire my brain, fire synapses and effect change in my brain. The biggest focus I put into place to rewire my brain was my art practice, drawing and painting were the best practice I committed myself to. Given that I am naturally a creatively minded person this was the most pivotal thing I could have ever done in my healing journey. Tapping into lifelong talents I lit up my brain with rainbows of colours connecting to mind, body and spirit alike.
I began small with my art practice. Using simple materials like tiny tubes of gouache, small pre-cut watercolour paper, panels, brushes, easy to old, manipulate and tidy. This created very little clean up saving on my energy. It was basically come as you are and create activity, whenever energy presents itself. All my creations were quick yet result driven, whether I was focusing on strengthening skills in process based activities or result based in creating a piece of art. During this time, my brain on art I was very limited, having large periods of time away from my art but always returning when able.
With my successes and rewards I was eventually able to increase my time and energy for this practice of art. The more I did, the more my brain lit up and my bodily functions were improving. It was in this activity that I put standing activity back into my day helping blood flow from head to toe. Improving my heart and lung function effected greatly by the unhealed virus, which was a huge relief. My brain on art was beginning to move me forward in the healing journey. My strategy was monumental in effecting change and my successes although unobservable to others were enormous to me.
In time, my brain, hand-eye coordination, fine and gross motor abilities all strengthened. Which allowed me to change how I painted from a flat surface to a vertical surface at an easel requiring different muscles and abilities of fine motor skills. It allowed me to test my gross motor strength on larger surfaces such as a 12“ x 12“ on panel, allowing for stretching, reaching and bending to become part of my art practice. Prior to this all my supplies were at a hands reach so as not to stress my muscles creating aching, pain and suffering. Furthermore, this allowed me to change my medium back to hard bodied acrylic which requires colour mixing using my brain and past learned art based skills and used more fine motor and gross motor skills and co-ordination for clean up. All of which were beyond words exciting to experience once again. What happened next was a gift, the inflammation and muscle constraints let go, loosening my upper body. With time my whole body began to loosen, my blood flow improved, my aching decreased and my inflammation deflated like a birthday balloon. My brain on art turned out to be the best activity I could do with my body.
Finding a passion to rewire my brain was monumental in my healing journey. My lifelong passion has been the practice of art. Now it fills my days with thoughts of colour and creative concepts, my dream state often involves creative flow of ideas and my brain is firing with happy thoughts of my art. In return, painting fills me with peace, love and happiness. It is no wonder that my social media is full of my art practice as it is giving me purpose in my life as well as giving me life once again. Painting is my life, for now. My brain on art is my favourite happy place to be. Please follow my journey through art and healing, I feel exciting moments are about to happen.