From Rheumatoid Arthritis to Ankylosing Spondylitis. It is all in your HEAD!
I live with pain every single day. To those pompous pain free twats who claim “it’s all in your head,” I would love you to spend just one day in my body when the pain is at its highest (and that is me being generous, because generally the pain lasts for multiple days at a time. One day would almost be a relief!).
I would take a broken leg any day of the week, at least it heals. Not all medical issues heal. I should know.
Can you imagine waking up in the morning and debating what is more painful… the 20 stone dead weight crushing your chest and back, or the feeling of red-hot lava being fired onto your back like a whip as you try to deflect the pain with a hot water bottle that will leave scorch marks on your skin?
Let us talk about the invisible pain giver; the hidden diseases that many suffer with and that others cannot understand because there is no visible wound to look at. These diseases that are all too often incurable.
Autoimmune disease or autoinflammatory disease – From Rheumatoid Arthritis to Ankylosing Spondylitis.
Autoimmune disease is a condition where your body attacks itself.
Why? Because it cannot tell the difference between your own body cells and the foreign cells (such as bacteria) that it is ultimately designed to fight and attack.
So, instead of attacking bacteria and keeping you fit and healthy, your immune system attacks your own joints or skin with the same venom as it would do foreign bodies, releasing antibodies to attack these normal cells, resulting in painful inflammation.
So essentially – our own bodies are causing us pain from the inside out. It’s great fun!
Back in 2012 – I received my very first bona fide superhero cape – I became ‘Tin Woman’.
Only, I wasn’t fighting evil… I was battling pain – caused by my own body, for my own body.
My new alter ego appeared overnight (as most superhero stories do), during the 16th week of my second pregnancy. As if carrying a human and keeping it alive in my own body was not a hard enough task, this, it seems, was the perfect time into throw a grenade in the mix.
Prior to this my health was excellent, I was either running or going to the gym most days. The pain got gradually worse and worse until a few weeks later I could no longer bend over. My waist seemed to be made of tin. I had to squat to lift my then 3-year-old son.
The crushing hot pain all over my back was so horrendous that my mental wellbeing was destroyed. I could not focus and felt angry all of the time.
I was completely consumed with pain.
I did what any normal person would do, I trekked to the doctors, hoping that these amazing men in white coats could cure me. Their comments were amazing!
“Let’s wait and see how you feel after the birth”
Ok then – because dealing with this pain on top of morning sickness, heartburn and cankles is exactly what I need!
or “I am sure you have just pulled something”.
Pulled something? What could I have pulled? The nervous system through my spine?
There was honestly a point when I considered screaming “Just come over here and let me throw hot oil all over your back and then have a big heavy man crush your chest!”.
For goodness sake, I couldn’t even bend over. My waist felt completely solid and inflexible.
I suffered through my second pregnancy and wore my Tin Woman cape as well as I could. After all, us women just have to get on with it right?
My second son arrived safely with a very quick birth and I prayed that the pain would now disappear.
The pain did subside but only for a few days and then it was back with vengeance! I was back to being the Tin Woman once more.
Trying to look after a 3-year-old and a newborn is tough enough, but getting odd looks from the other yummy mummies when I turned up to the baby groups looking like I had been on a 3-night bender was getting a little old. You see pain is not the only side effect of this disease, it seems regular conjunctivitis is also a lovely added bonus! Joyful!
The pain just consumes every last ounce of you. It takes over your brain producing a thick fog blanket. Life is no longer enjoyable. It is just PAIN followed by more PAIN. Constant pain day and night. Chronic tiredness – are you getting the point??
After numerous battles with the doctors, I was eventually sent to a specialist – A Rheumatology consultant.
I underwent countless MRI scans and blood tests, all of which only revealed slight signs of inflammation. I couldn’t understand it! I couldn’t feckin’ bend over. I was in so much pain I couldn’t think clearly. I even thought to myself “is this really all in my head?”
Eventually, I had a diagnosis – Seronegative Spondyloarthropathy (try saying that after a few heavy-duty painkillers!)
Having a name now just meant I could Google the sh*t out of it and put myself into a paralysis of fear. It wasn’t long before I convinced myself that the best I would ever feel was now and the worst-case scenario would be flying my cape from the back of a wheelchair.
So, what is this mystery invisible disease?
Basically, my bones are trying to fuse together.
See – you thought I was joking about being a superhero… but come on, bones fusing together? That has to be out of some kind of Marvel comic for sure!
But seriously, it is a type of arthritis that usually affects the spine, causing inflammation between the vertebrae and joints in the pelvis.
It is a chronic disease that cannot be cured.
After years of being on high strength inflammatory medication and then having to take another tablet to prevent my stomach from bleeding (a lovely side-effect of the primary meds), I had finally had enough!
In January 2017 I asked my consultant if there was anything I could take or do that was more natural. I was concerned with the side effects of this medication that I was expected to take for the rest of my life. After all, I was facing decreased life expectancy, as well as liver, kidney and heart issues.
As expected when asking a medical professional about natural remedies, his response was a big fat medical NO.
But I can be stubborn, and I refused to let this white coat take control over my future.
I, and ONLY I was RESPONSIBLE for my health.
See – superhero again! Fighting the evils of the pharmaceutical companies to free myself from fusing bones! I was determined to find my own answers.
This is where, in a Marvel movie, you would see a montage of clips of me fussing around with pieces of paper and Google search results. For the best part of 2017, I researched the hell out of autoimmune disease and autoinflammatory disease. I undertook a 16-week elimination diet where I cut out all processed foods, sugars, various fruits and vegetables until I could see what foods were triggers to my disease.
I educated myself on the pros and cons of supplements and soon was able to decipher those that are basically full of crappy fillers to those that are genuinely good quality grade.
But the biggest topic I found the most interesting is GUT HEALTH. Your gut health is the very basis of everything in your body. There are links between gut health and the immune system, autoimmune diseases, your mood, mental health, skin conditions, and even cancer.
My diet now every day consists of no gluten, no dairy (which was the worst trigger for me and is linked to autoimmune disease), pro and pre-biotics every day, certain supplements and exercise – every.. single.. day!
I am always running one step ahead of the men in white coats who I feel chasing after me every day, but I WILL NOT let them beat me! The power of the Tin Woman is to keep her own demons at bay in her own way!
I will never be normal. This is my life now.
My health is pretty much a full-time job. But I don’t view it as a stigma, I don’t let it define me – I find ways to make it a positive part of my life. Understanding my condition has pushed me to listen to my body and take much better care of myself.
As of January 2018, I have been medication FREE! Am I Proud of myself – HELL YEAH!
As for Mr Evil White Coat? I got to watch as his face dropped in shock when I very politely pointed out to him that he had absolutely nothing to do with my huge improvement.
I can’t force him or any other medical professionals to spread the word, after all, his response was the bog standard “there is no medical evidence”.
But I can tell you now, I am the proof!
I won’t lie and tell you that I am entirely pain-free. I have a baseline of pain most days, but I can manage it.
The point of my story is not to convince people to shun medication and try some hippie dippy herbs. But to show you that you can take back control of your own body. That you don’t have to accept that you need strong medication to function. You can improve this rotten disease.
I now feel blessed and lucky to have had this happen at a young age because I do wonder if I had developed in later in life I may not have fought back and just accepted this life of excruciating pain and succumbed to the inevitability of rattling with pills until I simply turned into a big lump of merged bone matter.
I have a lot more empathy for others now and feel so passionate about raising awareness and reaching as many sufferers of these diseases to show them they are not alone.
(Note from The Editor: Many thanks to Julie for opening up about her experiences. For those of you interested in hearing more about Julie, you can check out her author page here, or follow her Facebook Group Secret Whispers – or of course pop over to her website.
If you are looking for more information on some of the issues raised, Julie herself recommends the following books.)