A Twist of Fate: My Complex Autoimmune Story
My journey to diagnosis has not been an easy one and when I was finally diagnosed with SLE, Myositis with a twist of mixed connective tissue disease in 2013, I didn't know how my life would be.
When I started having increasing levels of pain, I thought it was due to the mixed connective tissue disease (MCTD) until my rheumatologist diagnosed me with fibromyalgia between 2014 and 2015 after several complaints about the pain radiating all over with body. My joints would at times be so painful I couldn't even take a shower. I required assistance to put on my underwear and dress up.
I remember days when my mum and aunty would dip face towels in scalding water that they could barely put their hands in to just squeeze the water on various parts of my body. At times they would resort to ironing the towel after making it damp and put it on areas where I was hurting whilst I cried out in pain. They were shocked at times because I wouldn't even flinch when they placed those scalding towels on my body. They wondered how I could tolerate that level of heat.
In fact, I tolerated the heat more than the cold, I would stay in bed bundled up from head to toe and yet be feeling cold. I refused to spend time in our living room unless all windows were closed and curtains drawn and down. Everyone would be feeling hot but I would be shivering. There were days I couldn't chew because my jaws hurt so I could only feed on liquids. I had little or no appetite anyway. Life was a living hell.
Now I would say I have learnt and adapted to living with fibro, I chose to be useful to myself and my family.
My doctors have helped with medications and other management techniques. There have been several trials with different combination of medications with its associated side effects, desired or not. My years on corticosteroid has in combination with other treatments led to associated increase in weight, issues with my vision which is being closely monitored by my ophthalmologist.
One thing I should have mentioned earlier on was once you are diagnosed with an autoimmune disease, others follow.
I started having issues with my gut so I was referred to see the gastroenterologist. Getting diagnosed with Microscopic Colitis was no fun, mainly because of the colonoscopy. During the procedure i was not sedated enough so the procedure was hell on earth. Thus now, I see the gastroenterology team.
I had suffered from migraines in my teens, which resurfaced, that and other complaints of pains led me to being referred to the neurologist as well.
All these referrals came with tests, medications and others which put a strain on my finances. Most often than not you experience new symptoms and with each one comes different responses. All of these take a toll on your emotions and mental health.
As I mentioned earlier, you learn to adapt, or else your mental health suffers. Even after living with it and all the other diagnosis, it is still not easy. There are good days and bad days. Some days I can't do anything because I am physically incapable. Every day presents with it a challenge, from migraines to gut issues and the pain that never goes away.
Whenever I am going out of the house, I ensure to pee several times right until when I leave home or else I will have the urge to pee right in the middle of the journey to wherever I am going and if I don't find my way to a washroom early enough, I am likely to have wet pants. I have had several such accidents. So now I carry extra underwear and at times I carried an adult diaper just in case.
Even in adapting, it never gets easier and you never get used to it. There are days I get tired of it all and it weighs heavily on me. I have learnt to self-motivate and being part of a support group has helped me greatly. Getting the perspectives of others and listening to their stories lets you know you are not alone in this fight.
It's not all doom and gloom. I have met some amazing people because of all of these diagnosis and associated problems. I have also learnt a lot from them, they have become a second family I can fall back on because they understand what it is to live with fibromyalgia and all the other autoimmune diseases.
