Patience: It’s Not Just A Virtue Anymore

Patience is a virtue

That’s what I was told as a child.  I admit, I had absolutely no idea what that meant.  I can remember hearing others being told the exact same words, so felt it must be true.  Patience must have been important to other families too.  Not just something my own mother pretended was true!

I’m not going to go into too much detail about that but suffice to say that she served our breakfast cereal with apple juice one morning.  Rather than admit that she had forgotten to get milk the night before on our way home from ballet class, she said…and I quote: “It’s very Continental, you know.  It adds a ‘Je ne sais quoi'”.  (I can certainly tell you ‘quoi’ was added and it rhymes with Cat Kiss).  At the time, though, my brother and I knew she was feeding us a bowl of horse pucks but we just laughed and choked down the cereal.

But I digress…

We speak of patience in others as a badge

Patience is often lauded as a character trait that people have or do not have.  That so-and-so has the Patience of Job.  That this other person ‘Doesn’t have the patience for it’ meaning that they aren’t cut out for a particular job or vocation.  In this article by The Guardian, we seem to be running low on patience these days so it is now a form of power.  Patience seems to be something that we magically either have or we don’t have.

Or so I thought…

As I’ve mentioned before, I am dealing with a horrendous and intense pressure head pain from being upright as a result of a CSF Leak that I have had for the past 17 months.  Headache is a much too general and insufficient word to describe it as it is really a daily concussive state that keeps repeating any time I am upright.  (In summary: not fun!)

As a result of my condition, I am learning a kind of patience that I never ever thought possible.

Was I born patient?

To start off, I have been a relatively patient person most of my life.  I think my patience with little ones is what lead me to a career in Education.  I can remember, even as a little girl, being able to play and entertain much younger guests who came to visit at our house and my mother would marvel that I wouldn’t tire of being the minder.

Waiting for months and months for medical testing and diagnoses and other aspects of my care is a whole different ball game.  I have had to dig very deep in my inner resources to be patient and open-minded about the overall slow pace of the medical process where I live.  You can read about how I handle medical challenges here and here.

Learning a new depth of patience

The other day, I was in my garden, and I waited and waited and waited to get the photo of this insect on the daisy.  As I waited, I watched and marveled at all the activity going on.  A bee would flit in and about to get his chance and the blue bug, I have no idea what he is, would take a fly by to see if he could get a feed.  Then another fly would angle in and alight onto the flower and off he would go.  This dance of ins and outs of these little guys had me intrigued for quite a few minutes. The blue guy just hovered around waiting patiently for his turn.

Once in place, he took his time.  He drank the nectar with, what I can now see thanks to my camera zoom, his proboscis. The little flyer just sipped and sipped and delighted in the juices he was imbibing.  He would flit back up and take a new position, and then back to siphoning off nectar again. Patience.  It can only be described as such.

Can we learn patience?  I really believe we can.

Does it come with practice?  Yes, I believe it does.

Can we get more patient? Indeed, when the Universe chooses to present to us our opportunity, we can do nothing else but learn to be patient.

Nature has it all figured out from the get-go!

Taking photographs in nature is a wonderful, fun way to work on my patience.  When holding a camera so close to a subject in order to get a super close-up, I have to practice my breathing techniques.  This not only helps when taking the actual shot but it helps to remind me to slow down and wait for my opportunity.  A missed shot means more patience practice and a need for deeper relaxation. I’m not going to lie, I was delighted that I waited it out and got the shot of this bug.  I only wish you could have seen it, too.  He truly was magnificent!

Patience is my SOMETHING WONDERFUL for today.

Love Ingrid x

Talk About Gratitude!!

I have just had another story about my CSF leak published to The Mighty!

I am thrilled and grateful to the folks at The Mighty for sharing my story.  I hope others can read and learn about this condition.  So many are misdiagnosed, like me, for months, years, or decades.

I would be most grateful to my readers for sharing and helping spread the word.

Here it is:

When My Pain Turned Out To Be More Than A Headache

It’s my SOMETHING WONDERFUL for today!

Love Ingrid x

Traveling to appointments

As many of you know, I suffer from a Spontaneous CSF leak, which means that my primary complaint is a debilitating headache that only feels better after several hours lying down.  As soon as I stand up, the fluid in my brain leaks out, and I get terrible pressure in my head that gets worse the longer I sit up.  Doctors describe it as giving yourself a concussion upon a concussion every time I am upright.

This means, it can be a challenge when traveling to appointments and it has proven quite difficult at times.  I travel about 90 minutes to and from my appointments and sometimes it can mean the better part of a day by the time I have been to one or two appointments.

Here are some things I have found to be helpful and things that others have taught me about traveling a distance with a CSF leak.

  1. Make sure to pack some snacks and lots of water for the ride there and back
  2. Bring anti-nausea medication or take it before going if this is an issue with your leak
  3. Ask if you can have appointments at hours that are reasonable given your traveling distance.  Many Office Administrators do not realize how far you have to come and they are happy to accommodate you to set appointment at off peak travel times.
  4. Recline in the car as far back as you can handle and have a blanket for comfort (also good to cover your eyes if you have light sensitivity)
  5. Wear dark sunglasses so flashes of light are not so obvious (this can cause nausea and dizziness for us leakers).  I find prescription sunglasses much more tolerable than off the shelf sunglasses as they polarize the light
  6. Wear compression clothing for part of the journey (I caution you about wearing it all day, as I have made my headache much worse by wearing compression garments too long)
  7. For longer appointments, or appointments that are much farther away, consider staying in a hotel (or stay with friends if possible) so the journey is broken up into two days or more (you can claim some of these expenses on your income tax in Canada as well as parking, food, and prescriptions above and beyond your insurance coverage)
  8. If possible, always have someone with you.  This is not only helpful for getting around, it is very important for having an attentive ear listening on your behalf.  When we are very intent on getting our point across to medical professionals, we tend to miss important information, so having an advocate there who is briefed on the issue is very helpful later on when you are trying to process what was said (and let’s face it…with a CSF leak, my memory is just not that reliable

Anything that can help to make life easier, simpler, or just not so darn painful is a bonus with anyone dealing with medical appointments.  Medical procedures can be stressful all on their own, so anything you can do to help yourself make the journey smoother is SOMETHING WONDERFUL in my eyes.

Love Ingrid x

#loveiseverywhere   #csfleak  #leakweek    #stressless     #kindnesstag

5 Tips For Facing Chronic Illness

Better get a cup a joe…it’s a long one!

I have written before about having a CSF leak, briefly.  I purposefully have not gone into details about this illness for several reasons, the biggest being that I prefer to appeal to anyone who has a chronic illness, no matter the severity of symptoms or how long they have been enduring.

Today, I would like to address some coping strategies that I find helpful for dealing with my CSF leak but I can attest to the fact that they help in other circumstances too…so I will give a little background to how I decided on these FIVE tips.

  1. Get as dressed up as you can: when I was 26 years old, my mother was diagnosed with cancer.  She asked me to come home (I was living out West in Canada and had just landed my first teaching job the day I found out) to take care of her as the prognosis we had been given was 3-6 months.  I will not go into details about all the feelings and turmoil that existed at that horribly difficult time but suffice it to say that it was very challenging.  I had a fantastic Family Doctor at the time, who insisted that I take a 30 minute appointment once a month to tell her how I was coping with all the tasks of dealing with someone who is dying of lung and brain cancer. I arrived for my first appointment dressed in beige suede shorts, deep black tights, and a gorgeous black ribbed turtleneck with clunky black heeled shoes and a simple gold bracelet and gold chain, both antiques given to me by my mother. (Listen, it was the 90s…you can believe my hair was still pretty BIG too)! I remember my doctor being so delighted when she saw me, exclaiming ‘Wow, Ingrid, you look so wonderful…good for you!…and how are you doing, really?!’ You see, she knew that I was dressing for the outside to help me with my insides…but she also knew that my suffering was still happening.  She commended me for taking the time to help myself feel better about my situation. Today, with my CSF leak, I spend a lot of time in yoga pants and T-shirts, and there is nothing wrong with that at all.  If it is the best I can look…then that is just fine.  However, if I feel that maybe I want to put on a nicer blouse, or a pair of pants, or I want to paint my nails…those little things go a very long way to lifting my spirits just a tiny little bit. I do whatever it is that will make me feel my best.  I have many times gotten out of bed, gotten into the shower, gotten right back into yoga pants and T-shirt but just blow drying my hair has made all the difference…even when I get right back into bed!
  2. Be honest and hang with people who can handle your honesty: I recently visited a friend who asked how I was doing.  I hesitatingly responded with a drawn out ‘I’m Oooo-Kkkk’ and he responded ‘Liar!’ with a chuckle. I replied ‘Ok, busted…I’m still not well.  Thank you for asking’.  He proceeded to ask about my recent testing and we briefly talked about it before moving on to a different subject.  Being chronically ill is such a tightrope.  I don’t want to overwhelm people with the details of my illness, as it can be such an onslaught of information.  (Not to mention that being cooped up all the time makes it all come out in a torrent of details and statistics). At the same time, I have to trust that real friends want to know if I am getting better and they are patient and caring and are really asking because they truly want to know.
  3. Do 1/2 as much as you think you can and 1/2 of what you feel: I wake up some mornings and although my head is splitting, I feel like I could tackle doing a tiny task. If I think I can be up for about an hour, I focus on trying about 30 minutes, or half of what I think.  I decide that I will make lunch and research a quick recipe.  As long as I can limit my up time to about 30 minutes while cooking, I usually can accomplish the task.  But this is exactly when I need to STOP and go back to bed.  Once I get started, I feel like I could plan to make dinner too.  I lie in bed and look up another recipe and get planning and scheming for dinner…this is WAY TOO MUCH. I remember, years ago, when I was running 1/2 marathons,  the author of one of my favourite running books Slow Burn: Burn Fat Faster by Exercising Slower by Stu Mittleman, suggested that the perfect run is when you are finished your scheduled run and feel that you could do that exact run all over again (but DON’T)!  These are my exact guidelines in sickness as well.  Doing a task that is hard for me (I know…preparing a meal doesn’t sound arduous but for me it can take all the energy I have) fills me with excitement because I feel a sense of purpose and become energized…but this is exactly when I need to STOP. Any regime needs to include steady guidelines for increasing activities and constant re-evaluation to be sure that I am using energy to my optimum potential.  The price for overdoing it in my case is getting over tired where my head is so painful that the next day, I can’t get out of bed at all.  Slow and steady wins the race!  Be a turtle out there!
  4. Be informed and let others know too: in any illness, it is crucial, that in order to make decisions for your own care that you become informed about the illness itself.  In the case of CSF leaks, it is very difficult to find information as it is not always readily available and doctors do not know how to treat them.  The statistics surrounding CSF leaks are changing weekly, as studies and information become available.  Go to reliable sources for your information.  Read medical journals if you can or ask your doctor to tell you what they mean.  Make appointments with professionals and share what you are learning.  I made a realization recently that my doctor may not be appreciating all the information I was bombarding him with and so I solicited a professional to speak with him.  This made a huge difference because they spoke colleague to colleague and made a plan for my care.  Get onto forums so you can get the answers you need and guide your care accordingly. Inspire site is at www.inspire.com and has portals for any number of ailments out there.  There is a group of very concerned and helpful CSF leak people there who can let you know about next steps for you.  The real bonus for this group is that the administrators for the CSF leak page are very knowledgeable and very helpful in terms of directing you to accurate information and journals you can read. There are Facebook groups for CSF leakers.  They are private so all you have to do is type in CSF leak in your query box on your FB page and once you find the page, ask to be added.  These groups are private as folks don’t always want these discussions out on their own pages (check out CSF Leaks Canada, CSF LEAKS, and CSF cranial pages). Also, there is an information and charity driven page from the UK dedicated to CSF leaks called CSF Leak Association that you can find by clicking here. They have a quarterly publication with information and they sell items in an effort to support those with CSF leaks. Finally, the Spinal CSF Leak page is filled with information regarding diagnosis, treatment, and is a font of knowledge where CSF leaks are concerned.  Watching the videos is a MUST if you would like answers to your CSF leak questions and as it describes, Dr. Connie Deline is an advocate for all matters CSF leak but is also a sufferer so she really understands the need to get the word out there so you can tailor-make your own success story. Recently, too, Dr. Connie Deline has arranged for a Spinal CSF Leak link to be added to a portal called The Mighty…stay tuned for stories to be added to the page.
  5. HOPE: read success stories…tell success stories.  I read about another person with a CSF leak this morning who was just diagnosed after having the exact same diagnostic test that I just had in October.  She had had the test administered 3 times only to be told the test was negative.  On this 4th attempt, due to the doctor performing the test TO THE LETTER…he was able to accurately identify that she is leaking CSF fluid from her sinuses (a cranial CSF leak).  For the reader, and fellow sufferer, this can feel devastating because you still sit with horrible symptoms and are still gravely ill.  For me, however this was a HUGE symbol of HOPE!  There she was, years into her ordeal, and she tested positive!  Wonderful! Because now the entire community has more answers than we did ONE DAY AGO! To me, this was a win for all of us!

I hope you find whatever works best for you in your particular situation.  I hope you find healing and health.

Love Ingrid x

#loveiseverywhere   #csfleak    #5Steps    #facingchronicillness  #chronicillness

www.spinalcsfleak.org

www. csfleak.info

www.themighty.com

www.facebook.com

When I Set My Mind to It…

One thing that I have thought, since my twenties or so, is that whatever I set my mind to, that is what will happen.  I can remember the first time this happened, and I am sure this has happened to many of you, that once you decide to buy a new car…one that you really like the looks of, that is sleek and new, and right in tune with your astute eye…you end up seeing that exact kind of car almost everywhere you look!  It is confounding the first time this happens, because quite frankly, it usually happens AFTER you just purchased the car and you NEVER noticed it before buying the vehicle.

Whatever this particular phenomenon is, it requires focusing your attention on something and then realizing that the object of your attention is everywhere…so how can I work this to my advantage?

Well, I have for years had this little habit, that I know I share with others, that makes life feel at once serendipitous and intention-driven at the same time. Since I was young, I look for hearts in nature and in my life around me.  I am not sure how it started; my mother would buy me things that had heart-shaped designs or motifs, as she had picked up that I liked them.  (She also would pick out apple-shaped things for me in association with my desire to become a teacher…many of which I still have and keep in my classroom).

I have a friend, Chrisann, who also likes hearts and often posts pictures of her luck with finding them in her surroundings.  There are websites and google images that are proof-positive that others have a fascination with this as well.  It is wonderful viewing the magical appearances of all these secret heart-shaped well-wishes that seem to just pop up along the course of a normal day.  Ask anyone who seeks them out and they will tell you that it is clearly the intent of the Universe to spread love…or to just let you know that you are safe in her embrace.

No matter the reason, the more you look for hearts in the world around you, the more you will see them.  They will appear randomly and sporadically at first and then, the more you live with the knowledge that they are out there, you will begin to see them just when you need them most.

To all my fellow CSF Leak friends out there, know that it is the Universe giving you a wink to let you know you are loved and well be cared for.  For all you others out there, just know that LOVE really is EVERYWHERE!

Love Ingrid x

#loveiseverywhere  #csfleak  #love

This post is dedicated to my friend Chrisann who finds love everywhere!