The Rainbow Butterfly

Creating beauty, strength & happiness through adversity

My Journey with M.E

Always remember that you are stronger than you think

You need rest it’s just a virus!

I used to be an extremely fit and active person, so it was a complete shock to me when I started to get sick all the time and not have the energy to do things with friends on the weekend. Once the work week was over I was becoming completely exhausted and constantly coming down with what the doctors told me was a “virus”

This all started in 2011. Since then things got progressively worse to the point that I was having so much time off work that I had used all my sick leave, annual leave and leave without pay. They literally told me I had to go on an extended leave of absence because they didn’t know what else to do.

This was all completely frustrating and I did not feel that the constant diagnosis of a “virus” was enough to explain why I was so sick, weak and exhausted all the time.

I did my own research!

I first of thought my symptoms sounded like that of Lyme’s Disease which is a tick borne disease. I thought that this could be possible as my Dad lives on a farm, I have been bush walking in dense bush many times and we also went on holiday to Vanuatu a few years back where I could have been bitten. I then came across information about the condition Myalgic Encephalomyelitis. I could literally tick every single box in the list of symptoms for this condition.

I was not happy with my current doctor who did not seem able to identify what was going on with me.  She did refer me to see a neurologist, who when I mentioned to him that I thought I might have M.E. he just laughed at me. That was completely humiliating.

I set about doing some more research to find out if there were any doctors that actually did know about this condition. That is when I found a great doctor not too far from where I live. He was very sympathetic and seemed to understand exactly what I was going through. He referred me to have a whole bunch of blood tests including one for Lyme’s just so that could be ruled out.

No diagnostic test

There is no definitive test for M.E. at this current time. The way that it is diagnosed is by ruling out every other possible cause and by meeting a strict set of criteria mapped out in the International …….. The main symptom that must be present is Post Exertional Malaise. This is not just being tired or fatigued. This is fatigue of a type that is very hard to explain to people who do not have this condition.

Post Exertional Malaise occurs after you have done too much activity. Something as simple as showering or doing the dishes might be enough to set off a bout of P.E.M. which can last from a few days to up to 2 weeks. For me it happens mostly when I spend too much time on the computer or if I push myself to attend a social gathering. The noise, lights, smells and standing around all affect me to the point that I generally need a week to recover after a major social event.

I have also had my diagnosis confirmed by a specialist from the M.E/CFS, Neuroimmulogy clinic at the Griffith University in Southport, Qld.  CFS stands for Chronic Fatigue Syndrome. A lot of people, including myself, do not like this term as it makes our condition sound like we are just chronically tired or just lazy. M.E. is a much better name but it is hard to say!!

I have been housebound now for two years

So for two years now I have not been able to work due to increasing cognitive dysfunction and other neurological symptoms. Whilst being at home I have basically had to manage the symptoms, as there is no cure as yet and also find another way to keep myself occupied so that I didn’t go crazy.

That is why I have taken up crocheting, sewing, paper craft etc. I have always had an interest in crafts and have created many things in the past such as mosaics, abstract paintings, mobiles made of shells, birthday cards. So it was not much of a transition for me.

Take a look at the other tabs on my blog to check out what I have been getting up to in the craft world. Check back here for updates on ways that I manage the symptoms related to my condition.

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