I was getting ready to go to a Toronto Leafs Hockey Game with my dad at Maple Leaf Gardens when it happened. My mom was drying a piece of clothing I wanted to wear in the laundry room. I ran down from my room to the basement, I was 11 years old and I had just got my period. For forty years I have had troublesome debilitating menstruation with persistent PMS. Throughout my life I have had to cancel plans and work due to PMS and menstruation. However, it wasn’t until I became chronically ill with Myaglic Encephalomyelitis (M.E.) that my menstruation created disability on top of the disability. It has taken five long years to write this blog because of this added disability.
Once or twice every month I am completely out of ability when I menstruate. Along with M.E. came poor blood flow, in fact nurses can’t find veins to take blood since I became chronically ill. I have to coach them on how best to get blood from my veins, even though I don’t have the energy to talk them through this procedure. When I menstruate the blood needed for brain and body function is redirected to menstruation. Brain fog which is cognitive dysfunction, takes over immediately. I can’t make a decision, string words together or have a meaningful conversation with any consistency. The energy I use daily for anything is now used for menstruation leaving me to sit in rest. Like a bright eyed robot my off switch is flicked in my back and I become still in rest until the time my switch is ready to be switched back on.
Now if you have other chronic conditions be prepared as any or all of them can show themselves while menstruating. My Fibromyalgia, Histamine Intolerance and Irritable Bowel Syndrome almost always make a shining appearance. Like the extras in a feature film waiting for their big role of a lifetime. This is just the way of the body, when the body is weak one never knows what will surface. Acceptance is key. What will be, will be.
I must honour this rest period, if I don’t I can easily put myself into post external malaise (PEM) or a flare, both worsening my conditions. I don’t engage in anything that worsens my conditions, nothing. Thus I rest. In my five years living with M.E and disability I have had much that has worsened my conditions. The last straw was a doctor, the very professional human who was supposed to be supporting me in my loss of health who sent me into a seven month long flare directly from his health care or more specifically lack of it. Everyone with M.E. must undergo an experience that teaches them to assert their needs in health care and life in general. No one looks out for your needs, only you!
Therefore each month I advocate for myself when I menstruate. I have nothing which I am committed to. Not a shower, a task or social media, nothing. Often it is my time to watch T.V shows like Mary Tyler Moore or Wonder Woman. Notice the strong women characters I like to watch. It reminds me of my strong authentic nature while I am missing in action with my period. Nothing that challenges my brain fog, programs that allow me to sit with the fog. This is my lowest energy time, a time when you think you can’t get any lower but you do. However, traditionally this is a woman’s rest period, a time for rest and rejuvenation and simply being. A long forgotten truth in today’s chaotic crazy society.
Subsequently, I am writing this for the woman who haven’t been given this information as is the cause with so many Womens Health Issues, it isn’t talked about, ever. Nobody told me this in a doctors appointment. It was learned from observation as is much to do with living with M.E. & disability. Then supported in conversation with another woman living with M.E. as is the case for so much of what we learn about living with M.E. Given that many women like myself become extremely short fused and highly over stimulated during menstruation I thought one less mystery could be of some use to women out there suffering with M.E., menstruation and double the disability.
And furthermore, I am also writing this because I drop offline or in communication for one to two weeks every month as I go through my period in rest. Nobody knows what they can’t see. With M.E. most of my life is unseen. People only see me during a good 10 minutes. Nobody sees me during my other minutes when I am low or resting. It isn’t because I don’t want to be seen. I simply don’t have the energy to be seen. During my period I am unseen but this doesn’t mean that it isn’t happening. People with M.E. need validation both in good moments and low moments. Each of these moments there are choices we have to make on how we will function and what we will do based on ability. We never ever just, do. Those days are behind us. Every action is thought out, fully.
In today’s technology based society we have been given solutions to every problem so we can continue to participate in the hamster wheel called life. Most of my post writing is done a week or two in advance with photos allowing for posts to be scheduled for when I am not active in the world through technology. They have made technology so you can appear active even when you are not, this lets one know how real life this world is that we are living in. However, this is a useful tool for someone living with M.E. and disability.
Thus I washed my hair before bed to last for the next few days, however my energy was already weaning and Brandon my husband/caregiver had to dry my hair for me. I have decided to have a Mary Tyler Moore day. I have my handmade Irish wool blanket ready as I began having temperature deregulation a few days ago. Bodily awareness is ones best friend when living with M.E. and disability. I suppose you can guess now that I am going down for a few days into rest and rejuvenation. I will see you once again when I get back and my on switch is flicked over.
Jane Holden - Contemporary Artist 