My daughter Veronica is twenty years old and for those of you who don’t know her, she is the author of “sleepless nights”
This is hard to write because the story is so long, so full of heartache, frustration, fear, anger, lots of anger and finally a numb acceptance of, “Well this is how things are going to be, best just get on with it.. “So I will just outline the bare bones of our story for now..
In february 2002, when Veronica was 13 she complained of a sore hip, bursitis was the initial diagnosis and Von ended up on crutches for a few weeks. Then Vonnie had a fall at school, hit her head and developed a headache that just wouldn’t go away. Veronica was then struck down with a mysterious virus that had the identical debilitating symptoms of glandular fever. Veronica was very very sick.
So with my teenage daughter experiencing painful joints, a constant headache, nausea, night sweats, general weakness and malaise, I was beginning to become very worried. The best description that I can give of how sick Vonnie was, is for you to imagine Ross River virus/glandular fever/lupus all at once.
It was about this time (April or May) that we jumped onto the medical roundabout and at the end of the ride I had formed the opinion that most doctors are twats. In my more furious moments at home, I would refer to the specialist of the moment as a ‘stupid fucker’, ‘condescending shithead’ and other terms of endearment…Veronica has written about this here in a post aptly titled, “I dont look sick.”
At the end of 2002 after all Veronica’s blood tests had returned as normal. We were told that it was Chronic Fatigue Syndrome and to go home and “Deal with it”
And deal with it we did. Veronica was always a high achiever at school and she didn’t let a little thing like a chronic illness stop her from participating fully in all the stuff that her school had to offer. She was a straight A student who played sport, was in the physically demanding, Rock Eisteddfod and had an active social life as well as a good lot of chores to do at home.
In her final term of year nine, after a few months of being reasonably well, Veronica became really ill again, with terrible joint pain, headaches, nausea and a grinding fatigue. Our GP prescribed something for migraines and told Veronica and I that it was a CFS flare-up and we should expect them from time to time.
So Veronica went back to school, thinking that it was a flare-up and tried to make the best of it. When in fact she had contracted glandular fever.
Writing this now years later I can’t believe that my 14 year old daughter went to school with glandular fever and still managed to ace all her subjects.. *sigh*
Seven years later we are still no closer to getting a diagnosis for Veronica.
On Moday I took Vonnie to what we thought was a quick trip to a physiotherapist to get a brace to support her pregnant belly. Here is a chunk that I have lifted from Vonnie’s blog post describing the physiotherapist’s reactions to Veronica..
According to the physio, all my pelvic and hip pain stems from the fact that the right side of my pelvis has twisted anterior, while the left side of my pelvis is normal. She realigned my pelvis and then gave me a sex-ay pelvic brace to wear to keep everything in position.
We talked a little about my CFS and the condition of my muscles and joints which are in her words ‘the worst muscles and joints I have ever felt’. Apparently all my joints and the muscles/ligaments holding them together are very weak and not in great condition.
Even better? She doesn’t think that any of this is related to my pregnancy at all, she feels that it is all related to my “CFS” and has been aggravated by my pregnancy.
My CFS was never ‘formally’ diagnosed. It was what my GP told me I had after 2 years of tests and bloods showed nothing conclusive. It was what everything boiled down to when I was still sick and nothing could be found.
I got put in the ‘too hard’ basket.
So, finally after nearly 7 years some things are starting to gel. Some pieces of Veronica’s health puzzle are falling into place. We are off to our GP again tomorrow and Veronica is going to discuss the possiblity that she might have EDS. Ehlers Danlos Syndrome..
I am a tad worried now…
To be continued……..