My health has always been poor.
I had constant bladder infections (UTIs), bowel problems, migraines, loads of fevers, joint/foot pain, regular bronchitis, shingles, asthma … quite the sickly kid.
Most doctors have said most of my illnesses were a direct result of the 14 years of daily sexual and emotional abuse by my father, starting from the time I was born.
Unfortunately, this meant I developed several chronic illnesses before I was a teen.
I got known as the ‘sick kid’, the one with the permanent dog-cough. Told I was lazy and making it all up for attention.
Throughout my childhood, I felt that illnesses were what defined me.
Life was only about the illnesses. They stopped me from doing everything I enjoyed, and even spending time with friends.
Get curious about illness
An allergic reaction as a young teen, to a bronchitis medication I’d taken so many times before, was the trigger to learn about how each of my illnesses developed, and how they interacted with each other.
Before then, I’d just accepted that I was always the sick kid. That doctors and parents were the experts. They knew what was best for me.
Researching each illness for myself, sent me scurrying after threads of treatments, therapies that might help. I got a better overview and understanding than the specialist doctors or dismissive family.
Once my curiosity was sparked, I saw patterns, pulled common themes together, and experimented.
I discovered some things that helped, and what made symptoms so much worse.
I loved puzzling this tangle out.
It was hard to find doctors who would listen – but I did find them here and there (after firing the bad ones!)
Using my illness history to take back my life
As I’ve tracked and analyzed my illness history, I’ve found many great ways to manage symptoms.
That lets me focus on the things I love.
I got my life back.
Photography, sewing, crafting, friends, gaming, gardening, cooking, music, writing, traveling, languages, teaching … I weave the things I enjoy around my symptoms, albeit sometimes at a reduced capacity to ‘normal’ ‘healthy’ people.
I no longer let my illnesses rule my moods. By knowing how my symptoms come and go, I can focus on my hobbies and work, and enjoy my life.
At least until something new turns up.
Then I get to talk to loads of medical professionals again, try out different treatments and find a new set of things to help me.
It keeps life interesting and, in a strange way, that is enjoyable too.
At the moment I’m juggling
- endometriosis, but at least the severe adenomyosis is gone after my hysterectomy.
- fibromyalgia, with secondary symptoms of costochondritis, sciatica, IBS, bruxism, migraines, sinusitis, Raynaud’s syndrome, and dyshidrotic eczema.
- a duplex renal system (doubled kidney), and impaired kidney function.
- chronic Post Traumatic Stress Disorder (cPTSD).
- new rheumatological symptoms, under the umbrella of synovitis.
A brief note about each of my current illnesses
Cells that normally form and shed inside the uterus lining grow elsewhere. It acts like a cancer. Endometriosis affects 1 in 10 women, and is typically horrifically painful each month – they are bleeding internally!
The gold standard for ‘managing’ this disease is surgical removal of the cells. But even surgery doesn’t treat the underlying cause, and medications only try to slow the growth.
If endometriosis is ignored, it can deeply invade the uterus muscle and cause adenomyosis. This causes extremely heavy monthly bleeding, that goes on for far too long (a surgeon once said it was “like trying to spit through a mouthful of marbles”). The fatigue, bloating and pain are dreadful.
This can be ‘cured’ by removing the uterus – my recent hysterectomy has made my tummy much happier!
An umbrella ‘syndrome’ – no common symptom that everyone has, no common treatment, and no one knows how it works. The main symptoms are extreme pain and fatigue. It’s been theorized that the brain in fibromyalgia sufferers becomes sensitized to pain, and isn’t able to shut the sensations off, even when the cause has disappeared.
Most of my soft-tissue and inflammation problems were lumped into this diagnosis, because the doctors don’t know why else I would have the symptoms. Treatments and medications simply try to help reduce the impact of the pain, inflammation, fatigue, insomnia and brain fog.
This isn’t the same as kidney disease, and results from chronic infections and use of NSAIDs (anti-inflammatory medications). These make your kidneys look like tiny little mice have nibbled away at the edges, leaving the kidneys all lumpy.
My left was a bit special to begin with, doubled kidneys are a reasonably common birth ‘defect’. Unfortunately, through the damage sustained during childhood, I’m now not allowed to take NSAIDs.
Chronic Post Traumatic Stress Disorder
Sustained child abuse causes cPTSD, a different beast to the trauma from a single event that causes PTSD. Of course, following on from this is anxiety, panic attacks, and deep depression. Sadly, this heightens the pain and fatigue, causing nasty loops with fibromyalgia and endometriosis.
This is an interesting beast, and one I really don’t understand yet, having only been recently diagnosed. It’s an initial symptom to a number of different rheumatic diseases, which either cycle between active and passive or progressively worsen.
What’s your illness history?
Do you know why and how your illness developed?
How does knowing this help you in your day-to-day life?
Please do share your stories!