26/07/2024
Wake me up when September ends ♡ September 2019
TW and CW: anxiety, depression, suicidal ideation, emotional numbness, workplace injury, accumulated injury, herniated discs, paralysis and the like
I want to tell my story, as it has been nearly five years. I intend on smashing the misconceptions, myths, stigma, and shame that come with chronic pain and other ailments, relating to these invisible disabilities or health conditions. Plus, keeping it as a secret only makes me blame myself. This story is told to the best of my ability.
I never thought I would walk again. I never thought I would work again. I never thought I would drive again. I never thought I would study again. I never thought I would be 'alive' again.
In appropriately September 2019, I sustained a car crash-style injury at the workplace. I had severely herniated several of my discs in my lower spine. But, the injury was also accumulated over time, so it happened slowly and slowly throughout my life.
In the first month, I was couch-bound, and I had nearly full paralysis or full paralysis at times in my lower body, especially my legs. This was before I was put on opioids/narcotics to deal with the severe pain.
But, what I realised was that opioids are, or can be addictive and have their challenges. Throughout my nearly five year journey, I have tried about twenty medications meant to help with my physical and mental help. What I know this year is that I am pretty much resistant to antidepressants, as they plunge my mood deep into a dark depression and / or suicidal ideation.
Yet, I am hopeful that I will find the right medications for my varying and changing needs. I am currently on none. I am hopeful that there will be medications in the future that will be helpful to me. I hope there will be non-addictive painkillers in the future.
I hope my symptoms from the injury improve. Initially, I had so much muscle weakness, numbness, pins and needles, nerve pain, and heaviness that paralysis was often a daily occurrence. I have somewhat regained my muscle strength, mobility, balance, and sense of touch. However, my right side of my body is still numbed down.
I hope my incontinence improves. Initially, it was so bad that even drinking a few sips of water would make me go to the toilet. Now, I can hold it for 10 or 15 minutes or 30 minutes or an hour, depending on the strength of my pelvic floor muscles, and if my nerves are not being so nervous that day.
I hope my fitness improves. Initially, I struggled to walk, to stand, to get off a chair in the right way, and to bathe and dress myself. Now, I can walk unaided. However, I still use the rail or a wall for support. Now, I can walk 5 or 10 or 15 minutes in one go, but I still need a lot of rest. I miss sport and feeling the grass between my toes. Maybe, mostly importantly, walking freely whenever I am. One day, I hope to do pilates, yoga, ballet, or an activity without the issues I currently experience.
I hope my mental health improves. Intially, I had a lot of anxiety, depression, emotional numbness, anger, jealousy, and aggressively fuelled emotions such as feeling as if what happened to me was not fair. Now, on a good day, I can feel okay, not completely normal, but half or mostly normal.
I hope my inflammation in my joints improves. Initially, I had a lot of sore and inflamed and stuck joints, especially my knees and spine. Bending over, or being on my knees, or looking down, or couching down were hard, if not impossible. Now, on a good day, I can have good mobility, although my poor knees are still weak.
I hope my work situation improves. Initially, I lost my job at the company I worked for. Now, I was working in out of school hours care. That lasted about four years. I am off to find a more suitable job as I struggle to stand for short or long periods of time without sitting.
I hope my eating improves. Initially, some medications I took reduced my appetite. I am trying to get it back as there were at least two occasions where weight loss was an issue. Now, I am trying my best and trying to eat even if I get a flare-up (where I experience pain, inflammation, and / or fatigue, especially in my back and / or legs).
I am certain my physical energy will improve. Initially, I spent the first month sleeping because of the severity of the symptoms, and my mental health was terrible. Now, I have a little more energy. But, I am trying to work on this as studying or working can tire me out and lead to a flare-up. My energy typically is really low, and I am trying to investigate this. Athough, it makes sense since I am still injured, and my body is just trying.
What helped me is going to 12 step peer groups, including Narcotics Anonymous and Grow and Alt2Su. Also, physiotherapy, physiology, and walking, to some extent, although physical therapy can flare up me up. Also, epidural injections have helped, but to varying success.
I do not have a lot to say now. This article is a bit of a nervous ramble about what has happened to me. I am trying to be at peace with what had happened and that I am accepting of the past as I can not change it. I wished I looked after my body when I was younger and did not think of myself as a donkey from the boardgame that you pile bags upon the animal. I wished my school bags were not so big and heavy because they were a factor in this life-changing injury.
To end on a positive, I intend on searching for new treatments and medications because living with chronic health conditions such as inflammation, nerve pain, and fatique are real. I will not give up because in the future, there could be a miracle drug or something that would dramatically help me. I will not give up because one day I would like to drive again, knowing that this year I got my full driver licence.
I may not believe in religion or deep spirituality anyway due to the many varied and complicated implications of my injury. But, I need to believe in a couple of things. Otherwise, I will become just a ghost. I sincerely believe that community is family, it is okay to cry, love never fails, I am different but not less, and hope exists in the world.
Susannah from Always Angelic Aspie Alice 🦋
Credits:
'Eternally ethereal flowers of hope'
Photo by Susannah
