Sunday, 16 November 2014

If I Went to See Oz

The great and powerful that is, not the country.  If I went to see Oz The Great and Powerful I might ask for more than a brain or a heart.  I might ask for a new body and this would include the brain.


Today I woke around 7am after eight hours of sleep miraculously provided by medication.  I had a bath and I washed my hair.  I put on clothes.  Nothing worth showing here, I am nowhere near that yet but jeans are a step up from pyjamas or sweatpants.  I spent the day on the sofa instead of the bed and I would estimate that fifty percent of that time was in sitting up.  I prepared three meals for myself and two cups of tea.  I read for awhile and although I often had to re-read whole paragraphs and even whole pages, it is progress to have been reading. My headache was milder than it has been lately.  The other aches were mild today too.  My lymph nodes have been generally calm and not detectably swollen.  By the time I had finished my bath it felt as though I had just done a workout designed for achieving a whole body of steel.  Why am I telling you this?

In general I am not a complainer.  I live with a chronic illness but it is my intention to enjoy the life that I have and not waste time or energy longing for another one.  It is also my goal to contribute to a public understanding of the medical condition known as Myalgic Encephalomyelitis.   It is this condition that I live with.  I am less afflicted than some, more so than others.  According to my doctor I have the worst case he has ever personally known but then this is a small town.  My general condition is considered to be an average case most of the time.  It varies.  There are remissions and relapses.  It can vary from day to day and within a day.  I have had relapses that were lengthy but mostly I experience what I call 'crashes'.  These are sort of mini relapses.  Mini, by my definition, is less than two months.  I have been struggling for a month now, ever since picking up a mild cold.

And yes, it is a very mild cold.  I still seem to have it after about a month but the symptoms are barely noticeable to another person.  It is not really the cold itself but how my body reacts to having a virus that is extraordinary.  It knocks the stuffing out of me, as my mother says.  In addition to this little bit of 'woe is me', my attempt here is to reach out to any others suffering from this illness and to let them know that life goes on, that relapses happen but one overcomes eventually, to offer up a tiny bit of validation, I hope, for an illness that was for so long ignored, denied and ridiculed (yuppy flu), in addition to all of that, I am offering up my regrets for not visiting the blogs I love to visit.  As I have already noted, reading is a challenge, though spewing out my own thoughts is not.  My thoughts come as readily as breathing, in fully formed sentences and sometimes paragraphs.  I kid you not.  My own thoughts that is.  Comprehending others is a different matter.

There is an aspect of mental impairment to this illness.  To some degree it is the impairment that comes with fatigue, but this is a neurological illness, one which according to my research involves vastly reduced blood flow to all areas of the body.  I suspect that if I did not have this illness I would be a genius and a super athlete and it would be unkind of you to disillusion me.

I am offering up some more of my writing.  It is not recently done, but a another chapter from what is currently around fourteen of them.  I write feverishly or not at all when I write fiction.  Although it has little to do with my original topic, and thus not a writing example to impress any English teacher, I will conclude with a thank you.  Thank you to all the amazing people I have met who create interesting, creative and unique blogs which I enjoy reading, thank you to those who read mine and take the time to comment.  Thank you to those who show up and read but stay silent and anonymous.  It is amazing to me to know you are there, amazing how this blogging thing reaches around the world.

If I have done it correctly, this link here should take you to the writing page.  Otherwise the link is on the top right corner of the blog under Pages and titled Scribblings and Other Words.


There are many sources of information online, some more credible or up to date than others.  Today I am linking to this one in case it is of any use to anybody, though it is not generally difficult to do a google search for ME.

And I found this video series enormously affirming and thus helpful.  The link should take you to the first in the series called Get Well From ME


  1. I'm sorry you are feeling this way. And it's ok to complain...complain away. We all know you are happy with your life, but sometimes it's fun, and therapeutic, to complain!!

  2. Oh my dear, many hugs for you! Interestingly, in my experience, with a few friends with this illness, it seems to strike the active people. No laziness there!
    I'm still in New Zealand and having a blogging reading and writing break, but for some reason felt I needed to read you today. So I want to say, i appreciate all your brain dumps! Feel free to complain. Your friends can take it! And you know I understand chronic tiredness :-) Hugs for today, JJ

  3. Look after yourself, Shawna; I am sure you know what you need to work through this relapse. Plenty of writing is good! xxx

  4. We do our best and sometimes, when battling illness, it's a struggle. Hang in there. Do what you can. And smile.

  5. My mom doesn't have M.E, but she had a brain tumor at the age of around 30, had to remove it, gone through treatment with radiation, which basically left her body a train wreck. She is constantly tired, sometimes faints, sometimes feels okay with the help of medication, sometimes feels awful, but she hangs in there, like you, she's a strong woman, like you. And you know what? I feel that, people with real health issues are the strongest, they know they're not okay and they live with it and make the best of it. She also likes to draw and has other hobbies. After reading this I need to re read Fight Club again...a quote is stuck in my mind “Its only after we've lost everything that we're free to do anything". I feel like this is true in many aspects of our lives. By the way, I'm following another fashionista's blog that has M.E, you can check her our if you like:

  6. feel hugged!
    write it down, maybe burn it. we are here.

  7. Darling Director ... on the fly, and trying to catch up with everyone and everything before the weekend ... but sending sympathy and what empathy I can imagine. When you're hit, stay down. Sounds like you are on the way to surviving this bout if you can cook, eat, read a bit, write a lot and rest some, so that's all you need to do. I get the " stuffing" thing ... had a lupus diagnosis in 1990, but it was happily not deeply debilitating, and was in remission by 94. Not a bit of medication for it since, but I know what you mean by how hard something can hit ... so I'm sending you the permission to just take good care of yourself, lay down and find enjoyment where you can. Don't worry about visiting around ... we'll all still be here when you feel better. How good is it that you're in a state where you can churn out some prose ... if you're down and in isolation anyway, it's logically a good time to have the urge to write. Go for it since you gotz it!

  8. Oh Shawna, I send you so many hugs - it's always a good thing to get anything off your chest, and we will always be here to listen and be here x x x more hugs x x x


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