So I have spoken a little about my chronic illness in previous blog posts, but I kind of wanted to keep it separate... because its not sexy. Its not cool. It fucking sucks. But, after another gorgeous girl shared a bit of an insight into her life including her chronic illness.... I thought I too should share, so if any others are also suffering they know they aren't alone. I'm a spoonie. I'll first talk about what happened, then ill let you know a bit about what a spoonie is. It's a weird term, yeah? Well, it will all make sense soon.
I was in a car accident in March 2011 which caused me to get PTSD and severe whiplash, as well as bursitis in my left shoulder. I was studying beauty therapy at the time. After the accident I was sore, three days after the accident I couldn't move my left arm when I woke up. It was scary. I went to a different doctor and was diagnosed with severe whiplash and given medication for the pain.
Then came the next two years of weekly physio, and so many tests and specialists it felt like I should get on a special 'your 10th visit is free' rewards program. I was in a dark place. I started seeing a psychologist and was diagnosed with traffic anxiety, depression and PTSD. I was told I couldn't go back to studying yet, and then the college said I would have to pay more, and resit certain things in order to still get my diploma.
It was a very low period in my life. I couldn't open my own door or carry my own dinner plate, nor wash my own hair most of the time. I had gone from someone whom was used to working and being independent, to what I thought was worse than useless. I felt like a burden. My relationship broke up, and a while later I reconnected with an old friend who is now my partner. He helped to save me. He gave me a safe place and just let me rest, he let me cry.
Skip to two and a half years ago and I met my best friend. If you want to hear something crazy, she has fibromyalgia and on so many occasions she would say 'honey, you need to see if you have fibro', but I didn't want to hear it or believe it. Yes, our symptoms were the same. But id already been given a diagnosis. Now, I was also told by specialists I would get better with time and regular physio visits.... but still! I didn't want fibro. There is no cure. I was never given a date of when I would get better, but I was assured I would. I know exactly how it affects you, watching my best friend live with it.
So, skip forward to about 2 years ago and I go lay down after watering the plants (even though I knew I was pushing my luck)... so I am laying down and I go to get up... I cant even remember why. I couldn't move my legs, and pain shot into my back and down my legs every time I tried. My best friend came over to try help me get some movement and my body shook, and I bawled. The next morning her friend who is a masseuse came over and they helped me out of the bedroom and onto the massage table. I got a two hour massage. I actually used a walking stick for the next week because my legs kept buckling and my body was so weak.
That lead me to more tests and more specialists. I was told I may have a few things. I got a bone scan, cortisone injections into my hips and tailbone and I cried. I cried so much. Each no meant there were less possibilities. Eventually I saw a Rheumatologist to see if I had ankylosing spondylitis. I don't. When he said I definitely have Fibromyalgia I cried. I was mourning my life. It was the last thing I wanted to hear, even if a part of me knew it was a high possibility. I remember walking to the car park with my partner and messaging my friend 'hey fibro buddy' and sobbing. She replied 'welcome to acceptance' or something similar. I bawled most of the hour and a half drive home.
Fibromyalgia is a medical condition characterised by chronic widespread pain and a heightened pain response to pressure. Other symptoms include feeling tired to a degree that normal activities are affected, sleep problems, and troubles with memory. Some people also report restless legs syndrome, bowel or bladder problems, numbness and tingling, and sensitivity to noise, lights or temperature. Fibromyalgia is frequently associated with depression, anxiety, and posttraumatic stress disorder. Other types of chronic pain are also frequently present.
So, I have days where I cant hold my phone to write stuff swirling in my head. I have days where my pain is so bad I have to hide in a toilet and cry for a while. There are days where I cant work, and I still cant hold down normal hours. Now I use my knowledge to help others. I live with a heat pack. Every day, whether it is summer or winter, I will use my electric blanket. I am on three different medications daily, one to help lower my general pain, one to help stop my migraines (I have had a headache of varying degrees every day since the accident), and one for my nerve pain.
I get fibro flares (times of really bad symptoms), and brain fog. I forget words and even what I was in the middle of saying. My brain just shuts off. I actually get tattoos to try redirect my thoughts into that, almost as a pain diversion therapy or electroshock therapy. At least its pain I am causing myself, and I get gorgeous works of art at the same time. Its my therapy. Due to my body processing pain different most of my tattoos haven't actually hurt. I almost meditate to the pain.
So, the spoonie side of it actually came about when a fellow chronic illness sufferer was at a café with a friend and the friend asked how she really was. You see, we tend to gloss over our pain and suffering because we don't want to be downers. She used a thing called the Spoon Theory to explain to her friend about how a 'normal person' and a person with a chronic illness don't have the same amount of energy to do day to day tasks. I've linked it for those that wish to read the whole thing. It would take up a whole blog all by itself. It has since become a way for us to not feel so alone, and a way to tell our loved ones and friends when we are lacking spoons/energy.
You see, we miss out on so much because our illness takes so much. I haven't worked on a car for two years now, as a specialists said I needed to stop. We have to mourn so much. Missed celebrations with friends, lives we thought we would lead and having to say goodbye to our passions. I will get back out there and weld and grind a car again, but being told that I can only do it a few minutes at a time kind of takes the fun out of it... not to mention you wouldn't get much done.
I do push myself, at shoots and at work, and sitting in a car for 8 hours to drive to a car show. That can be referred to by spoonies as 'borrowing spoons'. Because we essentially need a holiday/rest afterwards because we have nothing left to give.
So to all my fellow spoonies out there, youre not alone <3
