A friendly hello to one and all,
First of all, thank you for popping on over here and taking the time to read about what I have to say. I have never written a blog so this whole process is new to me and I’m sure I will be learning along the way.
My name is Megan, I am just about to turn 26, I work (when my health is behaving) as a Nanny/Novice Photographer (my photo above), I live in Australia and my favourite movie is a tie between 'The Wizard of Oz' and 'Funny Girl'. When I was studying at University I was a Film and Television studies Major and 90% of what I enjoy in my own time usually involve something creative (think photography, vintage film, musicals ect).
I like to think of my life as a huge bunch of glass jars stacked into a room. So many stories and so many emotions, that I have to stack them away neatly. And when I need that particular emotion or story I go and get that glass jar so quietly and carefully, so as not to make a storm. This Jar is 'The Jar where it all began'.
Things in my life were coasting along fairly nicely. In 2015 I was doing some fun performance art and singing work plus Nanning with a dream family with 4 beautiful children who I just fell in love with. At the end of 2015 I met my (now ex) fiancé. We both fell head over heels for each other from the very start she became my whole world. Six months later she proposed and I envisioned the happiest, most perfect future for us.
But life happened… And as beautiful and astonishing as life can be, it can sometimes play some nasty, shitty tricks on you too.
About mid 2016 my fiancé was hospitalised repeatedly in a very serious condition and then just as she was coming out of hospital I thought everything would go back to our normal, happy life. But that’s when things really fell apart. Life has never been the same since. That is when our story begins…
I had been feeling rundown for weeks. Like the kind of rundown where you feel like you are pulling yourself through mud all day long. And then the pain started. It started as a ball of fire about the size of a baseball right in the shoulder blade on my right side. As days went on I started to get sensations of pins and needles down my right arm and then into my two little fingers. All the while this was happening I was still working as a Nanny; taking care of twin 3 year old girls and two boys aged 12 and 13 all sole charge, roughly 45 hours a week and my fiancé was in hospital recovering from a newly diagnosed neurological condition; stress was high to say the least.
As my pain got worse I went to visit my GP and after listening to what I had to say she thought it was likely I had pushed a disc out and with some physiotherapy and rest it would recover. I thought about it and it did seem to make some sense; all day long I was picking up toddlers, buckling up car seats, carrying way too many bags, doing load after load of laundry. So I put the idea of the slipped disc to the back of my mind, residing myself to the fact that it will repair its self if I would just wait patiently; and oh how naive I was.
It was a couple of weeks later somewhere between 2 and 3 in the morning and all I remember was the pain that was searing though both side sides of my back and running down both arms like fire ants chomping though my skin. My ex-fiancé was next to me in bed at the time (on one of her brief stints out of hospital before illness caught up with her again and she had to go back to St Andrews). She told me later she had been given the fright of her life, as did my mother who came running when she heard the screams because I was in so much pain I just couldn’t articulate what was happening to me.
This experience proved that what was occurring was very unlikely a disc problem as it had moved to both sides of my body and I was rapidly losing strength in my arms and legs. When I saw my GP in a lot of pain the next morning and she realised I couldn’t even pick up a coffee mug she said the dreaded words “Its Hospital time”. Luckily, I was able to pick which hospital I could go to and I picked St Andrews as they had been taking such good care of my partner and at one point we actually ended up in hospital at the same time. The Nurses were so sweet and they would wheel me up to say goodnight to her every night.
One of the best things that ever could have happened to me was being assigned my Neurologist. From the first day I felt like I was in the hands of an incredible doctor but also a man who cared about my feelings and my wellbeing.
We did test after test after test. We did bloods that were sent off to Oxford in England and Universities in the U.S. We did CT scans. We did MRI Scans we did Lumbar Punctures. We did Nerve Conduction Studies. And in the end it all boiled down to one diagnosis, a rare neurological condition with autoimmune properties: Parsonage Turner Syndrome. It affects approximately 1.6 people per 100,000. To put it very basically, when a person has Parsonage Turner Syndrome their body starts to reject and fight the nerves in the brachial plexus area of the body (across the shoulder blades, the back, the neck, chest, the arms and it can sometimes affect the legs also). This causes extreme nerve pain and malfunction of the nerves. Once the nerves have been damaged the muscles start to become extremely weak and they atrophy, losing all their strength.
All of this left me in extreme pain, bedridden and hospital bound. I was an inpatient for almost 2 months after my diagnosis. It has effected almost every single relationship in my life from the acquaintances that were apart of my life back when I was ‘healthy’ (and were never seen or heard from again) to the closest people in my circle.
I feel that all of this illness and pain was a huge factor to battle with in my relationship with ex-fiancé and months later we ended our engagement. Whether she knows it or not I still care for her deeply and I treasure all of our beautiful memories.
Since my diagnosis I started receiving some treatment for the Parsonage Turner Syndrome. Although there is no cure there is a treatment that is aimed at improving PTS patients quality of life. This treatment will be the topic of my next blog!
Thank you so much guys for joining me on this the journey. I cannot wait to share more of my story with you. The good, the bad, the challenging and the magical.
Until next time,
Love and light ,
Megan
No comments
Post a Comment