In honor of World Sjogren’s Day, allow me to say: I’m really f***ing tired!

Today is World Sjogren’s Day. Set aside to honor the birthday of Dr. Henrik Sjogren, who discovered Sjogren’s Syndrome, it is also a day to recognize the millions of Sjogren’s patients worldwide and create awareness of the often misdiagnosed / under diagnosed autoimmune connective tissue disease.

The main triad of symptoms that plague those, including myself, with Sjogren’s are: dryness, joint / muscle pain, and fatigue. The fatigue of Sjogren’s has been studied and found to equal that of MS.

A few months ago I attended a session with a motivational speaker who is promoting a book she authored detailing her personal experiences with low self-esteem, self-shaming, body image insecurity, and infertility. If all that was not enough, she also has a rare autoimmune disease affecting her lungs which required hospitalization in the past. The young mother is a passionate, energetic firecracker devoted to spreading her message of self-love and acceptance to women everywhere. She wants women to “embrace their flaws, own their awesome, breathe fire, and be world changers”.

As I sat listening to her impassioned message I was in awe of her enthusiasm. She speaks her truth unapologetically. After we applauded her, she opened the floor to questions or comments. I told her I thought she was delivering a powerful, needed message but personally I was just “too tired to be a world-changer”.

Her response to me was surprising. “Are you are hiding behind the mask of fatigue?”

What I wanted to say in that moment was “No, I am just truly f***ing tired.”

I wanted to tell her that my fatigue was no more a mask than her infertility was. It is not a choice. It is not something I can turn on and off, I don’t use it as an excuse, rather it is a truth. I did not share those thoughts aloud. I was also having the overwhelming thought that perhaps expecting all women to be world-changers might leave some feeling yet again “not enough”.

I sat there as she continued answering audience questions, stewing over my own thoughts and insecurities. Why was I reacting so strongly to her question? Was it because I was hiding behind a mask of fatigue; did being exhausted gave me any sort of personal pay-off, gains of attention, anything positive in any way? I believe the answer was, and is, no.

(Well, okay, it does give me something to blog about, but that’s all.)

In April I had to have a “level one sleep study”, the kind you have as an inpatient spending the night in a sleep lab hooked up to wires, sensors, recorders, and so on. Literally the sleep technician covers you from head to foot with equipment monitoring your pulmonary, cardiac, and neurological functions as you sleep. Decked out in all the medical technology paraphernalia I wondered how I could possibly sleep.


(Partially rigged up for the sleep study, more stuff to to be added, including in nostrils!)

Adding to the ambience, the room was seemingly airless except for the fan whirring in the corner. The bed was a typical hospital bed complete with vinyl mattress cover and pancake flat plastic covered pillow. Adding to the whole experience is the reminder that upon entering your room you stripped all your clothes off, except your underwear, to be enclosed in Rubbermaid containers as there had been previous bedbug infestations in the lab. And, if all of the above was not enough reason to provoke sleeplessness, the ceiling mounted camera capturing your every moment throughout the night becomes activated, the red “on” light glowing intrusively. The technician shortly thereafter announcing over a speaker in your room: “the study has begun”.

I wondered how valid these sleep studies could be; was it possible people actual slept under these conditions? As always, I was tired. I closed my eyes and hoped for the best. I did not want to have to do this again, ever.

Last week, I finally had the appointment to review the sleep study results with the pulmonary specialist who ordered the test. Good news was I do not have sleep apnea, which had been his main concern, thinking perhaps it was provoking my random intermittent episodes of atrial fibrillation heart arrhythmia.

I asked if there were any other significant findings. He said it was all quite normal, or in medical terms “unremarkable” except for one thing -I had slept 94% of the time.
Highly unusual he explained, for anyone to sleep that percentage of the time during a sleep lab study.

“You must have been extremely sleep deprived before the study”, he pronounced. It was a statement, not a question.

I’ve been tired since 1990. I could sleep anywhere, anytime is what I always tell people. Now I have the study to prove it.

 

 

For those who would like to know more about Fatigue and Sjogren’s: http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-types-of-sjogren-s-fatigue

 

My 3 all-time favourite memes re: fatigue (one of my least fave things) and sleep (one of my all-time fave things):

Never Doubt One Person Can Make a Difference

Back in July 2013 I blogged about a Kickstarter campaign by Christine Molloy raising funds for her anthology of 13 personal stories by Sjogren’s patients, including my own story.

Kickstarter is an innovative way to make creative projects happen, when traditional sources are not available. I am happy to report that 101 people gave $7305. towards the goal of $7000. for Christine to complete the project, and she has indeed published the book. Thank you to all Kickstarter contributors!

Christine’s goal in publishing the book was to allow individuals the opportunity to share their personal stories in an effort to increase awareness of Sjogren’s Syndrome.

Christine did not publish the book as a money-making venture, nor did any of the contributors submit with any hope to profit from the sale of it. Each of us told our stories solely in an effort to reach out to others with Sjogren’s, create support and understanding among patients and their families/friends, as well as to generate much needed awareness of Sjogren’s within the medical professions, as well as the community at large.

Here is a brief blurb about the book from Ms. Molloy:

Imagine for a second what life would be like if for years, you searched for answers to mysterious physical symptoms that were so severe, you could no longer participate in the daily activities of your life. What your life would be like if not only did the medical community doubt your sanity, but you begin to question it yourself. For approximately four million people in the United States, including tennis superstar Venus Williams, this is often a reality because they have Sjögren’s syndrome; an autoimmune illness that severely affects the moisture producing glands in the body. It is difficult to diagnose and even more difficult to effectively treat as there is no cure.

The publication gained greater credibility having the Sjogren’s Syndrome Foundation (USA) CEO Steven Taylor provide the book’s Forward. Ms. Molloy will also be attending the annual National Sjogren’s patient conference this Spring. Today she is attending the Boston Sjogren’s Support Group. The book has sold hundreds of hard copies , as well as Kindle digital copies.  A portion of every book ordered through the Sjogren’s Syndrome Foundation in the USA goes directly back to the Foundation for research and generating awareness. Congratulations Christine! In a short time, you have succeeded in creating much awareness with much more to come. You have shown that indeed one person can make a big difference!

In Canada, the book may be purchased directly through Amazon (paperback or Kindle):

http://www.amazon.ca/Tales-Dry-Side-Personal-Autoimmune/dp/1478722096/ref=sr_1_1?ie=UTF8&qid=1391298087&sr=8-1&keywords=Tales+From+the+Dry+Side

It can also be purchased directly from the Sjogren’s Syndrome Foundation website, on amazon.com, and in Barnes + Noble bookstores in the USA.

To read more about this project, Sjogren’s, living with Autoimmune disease, Christine’s personal journey and more, check out her blog – “Thoughts and Ramblings on Life, Love and Health” on the links below:

Christine Molloy photo

http://www.christinemolloy.com/

http://www.facebook.com/ThoughtsandRamblingsOnLife.Love.and.Health