Unpacking my life leading to MS (a brief but lengthy summary)

Well, obviously the beginning was somewhere in 1979 when my mother and father decided to concieve me but, thankfully, that is not quite the beginning I am referring to here. Although there is absolutely nothing wrong with two people loving each other. When it’s ones own parents, it’s a completely different blog that no one but perverts are reading.

Here, I am referring to the beginning of my life before I was diagnosed with MS. Although plenty of hilarious things happened to me prior to me getting MS, most people don’t tend to find MS hilarious and here I’m just going to give you some general background which I could probably summarise into: I used to eat microwaved melted cheese in a cup after school and then I wondered why I got Multiple Sclerosis.

I grew up on a small farm outside a small town in Gippsland, Victoria, Australia. ‘Spud’ country. My parents were both farmers and I enjoyed a childhood surrounded by animals and nature. Every day I would climb trees and hills, pick carrots and fruit to eat, play with lambs, horses, dogs, cats, etc… I have two wonderful and caring parents and I had two brothers however one passed away in 2005 from a condition called Muscular Dystrophy. We are a close and loving family which is something I am so very proud of (sounds idyllic when it’s written out like this however try to include a lot more sibling and parental taunting interspersed throughout your imagined versions of my childhood for a more accurate picture).

During my childhood and adolescence my elder brother was ill and my parents were busy trying to support us in the often harsh financial environment created when mother nature is a farmers silent business partner (she can be a real jerk), as a result of this (and being the third child of a busy family) from Prep onwards I was sent to school with $2.00 and allowed to make my own food choices. These food choices were rarely sound. I’m not sure what I ate for breakfast, probably white bread with butter and a spread and dinner was usually a fairly standard Aussie dinner of Spag Bol, Chow Mein or meat and three veg. The choices I made when I was at school were highlights however, Twisties for lunch and two paddle pops for recess was a regular favourite of mine throughout my 13 years of schooling and this (shockingly) lead to issues with my weight and later on my immune system.

Once I reached adolescence my energy levels and moods altered, fairly standard for teenagers however amongst my peers I was noticeably lower in stamina, my need for afternoon naps was far beyond that of my friends. At sixteen I contracted glandular fever and was unable to attend school for four weeks sleeping sixteen hours a day on average.

                                                               This was pretty much what my teens and early                                                                   20’s looked like. Me, sleeping away my youth…

                                                               This was pretty much what my teens and early
                                                               20’s looked like. Me, sleeping away my youth…

At a time when most young people are at their busiest socialising, dancing and having fun, I was overweight, constantly fatigued and spending my teenage years and early twenties sleeping to ensure I had the energy to study or work. After glandular fever I never seemed to regain my energy. I finished school and moved to the city for university but I was still over weight and always tired which didn’t fit with my seize the day attitude and general zest for life. Fatigue was quite cramping my style.
I didn’t go out. I was a clock watcher, dividing my days into hours of sleep I could squeeze in around study.

Time went on and at 20 I’d left uni and was working two jobs and a roster of 11 days on 1 day off. Living out of home lead to less cash and more cooking for ourselves and poor choices. Pasta bake, packet sauces and meat on rice, frozen desserts, I was fatter and more exhausted. There was only sleep and work in my life and I started to hurt everywhere.

I was referred to a specialist and diagnosed with Fibro Myalgia at this stage and was advised it was like the flip side to a coin with Chronic Fatigue on the other side. Tiredness and tender spots all over my body. It felt nice to have a label to my symptoms.

A few more painful and tired years flew by with me working and being miserable until I was 23 and the next tests advised it wasn’t Fibro Myalgia it was Lupus. This wasn’t great news but again it was nice to have a label to assign to my symptoms and I continued on my merry way until I went back to that same Dr a few months later and they told me it was a misdiagnosis and I was back to boring old Fibro Myalgia again.

At the end of 2003 I was single, had sold my house, brought a combi van and quit my job and was leaving to travel Australia with a friend in the beginning of 2004.

Life was Sweet.

Finally. I was still always tired but tired had long been the status quo.

Then in January, two weeks before we were to leave I woke up and the right side of my face had gone numb. It hadn’t dropped or anything, I looked normal by all accounts but it felt like pins and needles. I thought perhaps I’d pinched a nerve in my back and continued on to work a morning shift thinking it’d either wear off or I’d just go see a chiropractor.

At work as we sat outside smoking (Using my profound genius I’d started smoking) I joked with the other staff that I’d had a stroke – “Stroke my Stroke” I’d tell them and we all laughed it off as inappropriate and also ridiculous. I was 24 after all. No one has a stroke at 24.

An hour later as I was making a bed (I worked in residential care at the time) and as I tucked in the sheet my right arm went numb from my elbow to my finger tips.

The next smoke break I continued on with my ‘Stroke’ jokes. I was busy and no one thought it could possibly be anything, I was being a Hypocondriac.

Although I knew I needed to, finally Dad advised me to see a Dr a few days later when the symptoms hadn’t subsided. This Dr examined me and told me I was fine. He stroked my face and arms, tested to see if I could resist him when he placed pressure on my arms and when I could, he said there was nothing to worry about. Turns out he was a dick.

Another week passed and everyone agreed I needed a second opinion. This time the Dr sent me for a CAT scan. They give you the scans and have you take them back to the Dr. On the way of course you look at them yourself and conduct your own analysis. My brain slices showed me that the right side had a black hole the size of a 20 cent piece in it. My Mum was driving and advised me that I wasn’t a Dr and maybe my brain was supposed to look like that (regardless I remained highly sceptical).

At the appointment the Dr placed my scans up on those white light screens and asked me what I saw to which I replied ‘The right side has a black spot on it which I am hoping means I am going to get smarter and smarter and be able to sense energy fields and learn languages overrnight akin to John Travolta in Phenomenon without the dying at the end part.’ He replied ‘That is a hole, something everyone else has that you don’t. You’ve had a Stroke. You will need a referral to a specialist.’

So there was some shock and tears of course but I was again pleased for the label to go with my set of symptoms, a highlight being lording it over my colleagues that I had, in fact had a stroke and the offer for them to ‘stroke’ it was still very much on the table. I was scared but in my mind a stroke was said and done. I’d had it, I would heal, it would be over. Nothing to worry about.

A week later I saw the specialist who sent me for an MRI the results of this were less humorous to me. As an MRI provides a more detailed image of whatever it is photographing it was able to capture many black holes covering both sides of my brain. This, I was advised mean’t I had not had a Stroke afterall. What I was seeing was multiple scarring on my brain ‘Multiple Sclerosis’.  Nothing funny about that.

More crying ensued from everyone. No jokes from me at all.

A Neurologist advised me that from here I had to wait for a second attack before they could confirm it was MS and not just a random isolated attack on my nervous system and tax payers could fund the treatment of daily injections of interferons for the remainder of my life. Hideous.

I went home and was told to enjoy myself and go away as planned. The MS Society of Victoria sent me a welcome to the gang package in the post. I reluctantly read through all the information. In the package was some information about the Swank Diet (http://www.swankmsdiet.org/Foundation) this information changed my life although it was obvious the information about the drug options available to people with MS was meant to be the focus of the information package.

Did I mention this was the moment my life changed?

Dr. Roy L. Swank, Ph.D introduced the Swank diet in 1948 and conducted 60 years of research and found that a persons diet (shocking) contributes to a persons health (amazing news). I love to research so from here I read every scientific study I could find on all the available treatments, interferons, etc… How long the drugs were tested, how big the subject groups were, where they were conducted, the outcomes, anything I could find. Aside from the drugs not ever having been tested for a period of time I felt was long enough, I could never wrap my head around how a drug could be considered ‘effective’ when the condition they are treating has medical professionals so confused… No one can predict the severity, frequency or duration of an MS attack and yet the drugs were claiming to reduce the ‘severity, frequency and duration’ of attacks?? It just didn’t make sound sense to me. Plus the list of side effects ( eg. 4-6 hours of flu like symptoms and irritation at injection sight)was also a turn off not to mention my life long needle phobia.

If I wasn’t born with MS, why had my immune system decided to start attacking the myelin surrounding the nerves on my brain at 24 years of age? Injecting my already fragile immune system with further toxins just didn’t make sense. Something was happening to my body. It was desperately trying to tell me something. The only thing that remotely made sense to me was the Swank Diet. If my body was a car, I had been fuelling it with microwave cheese in a cup for the past 24 years and now I was wondering what the F#$! was wrong with it? Diet made sense. I was doing something to my body that it couldn’t cope with and I had to stop.

I’ll abbreviate here as this is crazy long for a first ever post and I can assure you this will be the longest post you ever have to endure from me but I felt I needed to make a picture for how I ended up here.

So sadly 4 years passed and my brother died, I didn’t quit smoking, I went off and back on the Swank Diet under the advise of my Neurologists who kept telling me there was ‘no science’ to the diet however each time I would stick to the diet my sympoms would reduce, energy would return and I would not have attacks and my lesions (scarring) on my brain would reduce and following my return to cakes, fatty foods my symptoms, etc… would return. I found Dr. George Jelinekand his program Overcoming Multiple Sclerosis (http://www.overcomingmultiplesclerosis.org/) in 2006 who had MS and had adapted the Swank Diet further to exclude any saturated animal fats allowing only fish and egg whites along with fruits and vegetables and other whole plant based foods. I attended a week long MS Retreat at the Gawler Foundation (http://gawler.org/) with Dr Jelinek which further changed my life, strengthening my resolve however in the absense of attacks I started to feel so ‘normal’ I decided I didn’t need to stop eating processed food and animal products after all and I so desperately wanted to be the same as everyone else and socialise and eat as my friends and family did. I fell back off the wagon…

2008 I smoked my way through my first Social Work exam at university after being on a diet of cans of V for breakfast with cigarettes on the drive to uni, a couple of Sushi handrolls and a healthy dinner followed by a bag of lollies and biscuits to help me write essays into the night and more cigarettes.

Long story short (ahahaha!) I woke up following that exam and both my legs and lower half of my body were numb.

I could walk and use my parts but everything felt as though it was submerged in concrete or ice. Heavy. Frozen. I couldn’t feel my ANYTHING below the waist… Terrifying. I couldn’t feel myself going to the toilet. Anyway, I quit smoking that day and with the support of my family and friends changed my diet and life for good. Thankfully, I regained full feeling in my lower body and here we are. On the road to health and Happiness and Love!!