Feature image from AVJENNINGS
Welcome to Paulien's Story
Hi! My name is Paulien Barkmeyer and I am LIVING with ITP! The operative word being LIVING!
Much like you, I have been on a tremendous journey of highs, lows, ups, downs and insides outs finding a way to come to terms with this condition and after approx. 7 years I have finally come to the point of “living with” rather than “a battle against” ITP. My numbers continue to be pretty crappy, my energy levels wane and all the other bits and pieces that go along with our condition. I’ve finally given up my dream of being a Roller Derby Queen!
My health and health habits are probably the best they have ever been. My life is filled with joy and joyful activities.
As you are well aware, your life can become consumed with treatment regimes, blood numbers and endless prodding and pricking from various health professionals. Searching for a “cure” can get you down and depressed However, only in the last years or so have I reframed my view of this situation.
I figure there are plenty of things I have no influence or control over so I made a decision to focus my energy and attention to the things I can influence. I’m certainly not putting on my “rose coloured glasses”, just looking at my life and condition differently! Currently, there is no changing the fact that I LIVE with ITP and try as I might, it may never go away.
I liken my shift in perspective a little like getting caught in a rip and “going with it” rather than to expend all my energy fighting against it. I’m just “riding the wave” baby!
Some of the more practical habits I have put into place include:
- Coinciding my treatment days with my hairdressing appointments – so it’s just part of my beauty regime (my gorgeous hairdresser however won’t wax my eyebrows without an official blood work report!).
- Running a “Blood Tipping Competition” with family and friends to keep them informed … (there are no prizes and everyone want’s me to be the winner! Including my Blood Doctor).
- Saving a stash of documents/books and other reading material for the days when I’m dead tired.
- Using my time “in the chair” as a great time to clean out my handbag/purse, delete emails, unsubscribe from the endless junk mail and advertising we receive.
- Spending a whole hour watching a YouTube video of a concert or band, I mean, who really has the luxury to do that? I do! Regularly! Yay!
- Tracking my pattern on my iPhone and assigning work tasks and social life accordingly.
- Cooking healthy meals in bulk and freezing them for the tired days pre and post treatment …. Always a healthy meal in a jiffy at my place.
- Giving myself the honorary title of “Queen Helga” to acknowledge the Austrian IVIG that pumps through my veins … (although I do believe that a Princess Pauliena existed in history).
- And finally, staking a claim to last years’ Eurovision winner “Austria” as now I believe I have a blood line (or blood product) that connects us!
Look, in all honesty. I would much rather not be living with ITP however it is what it is and here I am still humming along, so I’ll just keep “Riding The Wave!”
Yours in health, wellness and happiness!
Lives at Sandy Beach NSW (Yes! It is beautiful!) A wife, mother and grandmother (I had my daughter when I was 2yrs old! Hahaha!) A permanent part-time Facilitator, Business Coach and creator of elegantly upcycled things of beauty!
Contact me at firstname.lastname@example.org