I run a closed Facebook page that allows people to discuss their mental health issues, get information and support each other. I initially started the group Good Friday 2015. I felt that it was important to create a safe place for Black, Asian and Ethnic minorities to ask questions and share their concerns. Initially it was meant to be for women who I hoped to mentor or create training programmes for people with mental health issues to learn the balance of being a lady and a boss inspite of a diagnosis.
I have a primary diagnosis for Fibromyalgia and Chronic Fatigue syndrome and a secondary diagnosis of depression. I also have mobility issues due to slipped and I am registered disabled. When I say disabled, I dont mean I am in a wheelchair as many unfortunatley have sumarised, the Equalities Act 2010 of the UK states that you would be considered disabled if you have a physical or mental ailment that is long term and affects your day to day living. Fibromyalgia is a central nervous disorder that was recognised by WHO, Europe, The United States of America and regisered with a ICD10 code which is the diagnositic identifying number in October 2015. For years people lived with the doctors unable to deal with it and constantly told people “it is psychological”. Research has shown that the brains of people who have this diagnosis are differrent and the pathways for pain are different from “normal” people.
I promised my group that I would share when I had an episode of depression and how it felt. This is a journal entry one my most distressing episodes.
“I am on a wild ride and only five Sassy friends have been privy to this. There are reasons why I don’t talk a lot anymore, for another date because it angers me. I am in a lot of pain it is radiating from the top of my spine to the bottom of my feet, my muscles are tremoring and refusing to work, I cannot walk.
These episodes are usually triggered by my disorder or if I am acutely tired or emotionally overwhelmed. Fibromyalgia affects my day to day life so simple things like walking to work in pain or bad sleep continuously affect me . So at the moment I have been suffering from a flare which means my nerves are hypersensitive due to weather changes, joint and muscle pain and a cold. I am overwhelmed by no longer being able to do things for myself. I have gone through so much emotional trauma I don’t know where I am or what next on some days. I don’t even know how to deal with it, don’t know what trauma means. Usually I focus on my Big Boss, God and he helps me. The hardest thing is those closest to me left or do not understand the difficulty and isolation. I have learnt that relationships are superficial and gone were the days people offered help when they knew you were unwell, you have to ask for help!
I tend to sleep a lot as that is the only way to rejuvenate the body. The chronic fatigue combination makes be isolated because one never knows when it will hit. I am hypersensitive to too much noise, too much light and the last time I watched television was to watch Muhammed Ali’s funeral and now I wait for the Wimbeldon finals. If I sleep more than 72 hours I start checking what’s going on, I pray and generally talk to God as that calms my anxiety.
My clothes change as color leaves my life, so I’ll dress in black, grey or blue that indicates where I am on the spectrum. I cry a lot, sometimes I don’t eat or eat wrong stuff. Sometimes I have unexplained rage, but it comes from the inustice of how this all started and I cannot do nothing about it.
I get angry because I didn’t ask to be sick, sometimes when the cloud is really dark I want my life to end. My feelings are despair and loneliness. One gets tired of explaining challenges to people. Invisible illnesses are not taken seriously. I have thought about how I’d like to end my life, but I am too lazy and too vain, I still hate pain.
Panic attacks or anxiety is part and parcel though sometimes I think medication has a part to play. What happens the uncontrollables gets larger than they really are. One’s perception and view is different. Irrational thoughts and racing thoughts come in and I miss my mum and dad my thoughts go everywhere and fear them dying. I am like a child.
There seems a clash of what is going on in the head and the spirit knows different the challenge is to subdue the thoughts. This can be one day or 10 days. There are times the emotions override the medication and you just ride the wave. Many people dont know the inner battle because you cannot see it. At work I tend to be quieter and sit alone in a dark office working with a background of music. The Mac is on and the smile is there but the eyes dont show it.
I never forget to take my medication as this could affect simple things like holding a glass and dropping it because my nerves are very fragile. I feel very vulnerable and it is a hard place to be because I have gone through worse things, pulling yourself out is a challenge but sooner or later the dark cloud goes and you are fine for a while. I am also resilient and strong willed.
In my calmness as I practice mindfulness I have a picture in my mind of walking through a dark valley that’s black, I am conscious of The Lion of the Tribe of Judah with me, the light seems distant. That keeps me sane. Watch chronicles of Narnia you will get it.
Today I want out of this mess and there are many more days to go.