Painful Holidays

We are just past the mid-point of January.  I am finally prepared to talk about the reality of chronic illness and how much worse the Christmas and New Year holidays make it.

I have to admit, the idea of family, friendship, giving and receiving, feasting, good will, and gratitude are very appealing.  And why shouldn’t they be?  Yet, it isn’t difficult to see that most people’s holidays have heavy doses of dysfunction in one or more of those areas.

I, for one do not have a family anymore.  It is hard to see others together and not to be a part of it.

Even those of you who have a family and supports may feel lonelier during the season.  

Some of the obstacles facing those of us with a chronic illness include basic mobility, travel, sitting at a dinner table for a length of time, medication side effects, gastrointestinal issues, alcohol, and so forth.

Many times, a family member or friend will try to include us.  This is well intentioned, usually.  The difficulty is that we often become the focus of unwanted attention.  Possibly it gets worse, with the peanut gallery chatting us up about the “cure” that worked for their “friend”.  

Also, who wants to spend a holiday event fielding questions, some of which are very personal.  We aren’t showing up to give a medical seminar, are we?

Travelling, even just around town can be nearly impossible if you have mobility issues.  Pain and inflammation can be a source of tears and fatigue.  I’m so thankful for online shopping.

Eating during the holidays usually means a deviation from our normal diets.  This can lead to flares in multiple conditions.  What should be a treat turns into a sleepless night and embarrassing discomfort.

New Years is characterized by alcohol consumption.  Many medications react badly when mixed with booze.  Pain medications can become deadly if mixed.  And yet, maybe we remember the years before we got sick and the fun we had.  There can be a lot of grieving.  We grieve for a life or an ability that we have lost.

As for my holiday, it was everything you’d hope for.  I was in the hospital and had two surgeries.  I cried as I wasn’t allowed to eat or drink pre-op on Christmas Eve.  The hospital sucks, but it’s worse on significant days.

So what is my mindful solution to the holiday predicament?  Simply, try not to drown.  Now is not the time to try to swim across the channel.  Rather, meet your minimums and stay afloat. 

You may have to decline certain invitations.  You may have to take more medications.  You may have to spend extra energy to prepare body and mind for other people or “that relative”.  You may have to feel lonely and cry into your hospital pillow.  It sure was unpleasant but the point is that I did what I could to not drown and see the other side of the holiday madness.

Mindfulness means we accept what comes and do what we can or not do what we cannot based on the present moment.

Can you relate?  Tell me your story!

11 Confessions about Chronic Illness

I saw this today:

11confesions

 

And this is my response:

Yes, true. But!!

1. Guilt is a useless emotion

2. Feeling lonely is a good chance to know and love yourself

3. Anxiety and depression are challenges to accept and or tackle

4. Pain sucks — but pain medication is fun

5. Every healthy day is a gift, but you are still one day closer to being dead

6. Be bold and let your free flag fly — where what you like! Shave your head! Keep it fresh!

7. Beds need people too!

8. It’s okay to be afraid, and it’s okay to say no

9. Exercise is just another addiction, might as well eat chocolate

10. Most doctors will kill you if you let them… that’s why we need nurses

11. Feeling useless and being useless are two separate things. You have so much to give and just because we live in a materialistic culture that likes to measure phalluses doesn’t mean that you aren’t giving tons to others. Hug!!

 

–The Mindful Crutch

Being A Victim

Being a Victim

The other day I was up at the chemotherapy ward. I had a pleasant conversation with a 61 year old man. 11 years ago, he was diagnosed with Pulmonary Fibrosis. In spite of being ill he had a great attitude. He had these words of wisdom:

“If you find yourself asking: Why me? Change the question to: Why not me?”

 

I chose to share this today because it’s a reminder of a few things:

 

1. We aren’t alone in our pain and suffering

2. We are all equal

3. The Universe is benevolent; or at least neutral

4. Anything can happen

5. Making the most of NOW is the best thing to do

 

Really, you are not a victim. If you are, then we all are.

A friend of mine who is a pastor often says, “But for the grace of God, there go I.” What does that mean? It means that despite what we want and despite all our efforts, we can end up in any situation – for better or for the worst.

I know I am speaking to a broad audience. I imagine some of you are, objectively, fairly healthy. On the other hand, I imagine that some of you are in constant pain. What do you have in common? Everything!

There will be times of life when you can be the helper, and there will come a time when you need the help.

Open your heart to this reality and may you be touched with compassion for yourself and others.

Monkey Mind Panic Attacks

Since I know you love hearing about them.  I am writing about my most recent panic attack which was yesterday at 2pm.  It lasted until just after 4pm.  This post will give the reader a picture into what a panic attack accompanied by chronic illness feels like.

In brief, if we named panic attacks, I would name this one like an interesting flavour of ice cream.  I’d name this panic flavour, Monkey Mind Panic.  Caution, contains nuts (pun intended).

icecream

Monkey mind, a phrase I picked up a while ago, is “from Chinese xinyuan and Sino-Japanese shin’en 心猿 [lit. “heart-/mind-monkey”], is a Buddhist term.”  (Wikipedia)

I imagine the monkey habitat at the zoo.  A deafening, dizzying, cacophony of “Ew Ew Ah Ah.”

monkey-mind

 

Racing thoughts obviously go along with every anxiety disorder.  They play a particularly powerful role in the anxiety before, but also during a panic attack.

During a panic attack, it’s like an argument erupts in my mind.  The mind does not heed the warning, Don’t Feed The Trolls.

I wanted to tie this into chronic illness.  It might explain why I had the attack.

Here are some of the contributing reasons:

  1.  I have issues getting around my apartment.  I was spending the day and this night on my own
  2. I regularly take some serious medications, one of which is for my anxiety disorder.  I had run out on the weekend and the pharmacy didn’t deliver until later
  3. I have on-going concerns about my recent surgery.  I feel frustrated that the surgeon’s office has not returned my calls
  4. I have a phobia of vomiting and choking.  My stomach was off from a Meatloaf I made that was too fatty (I went on one of those Everyone loves Bacon kicks)

bacon-double-cheeseburger-stuffed-meatloaf-2014fb-wide2

 

So I add bits of those ingredients together and add the secret Monkey Mind ingredient that I called Existential Freak Out No. 9 aka “Oh my god, I’m going to die.  I am dying.  I need an ambulance.  I should call one.  I don’t need an ambulance.  I should be seeing the doctor more because there must be something they don’t know about.  I’m too young to die.  Everybody dies!  Yes, but no one is especially good at it…”

Okay, okay, take a breath.  STOP!!

And this is the quiet moment when the Monkey smiles at you and starts peeling a banana.  It’s gotten its way.

 

0cb1725c000005dc-2880780-image-a-40_1419004497062

 

This is that moment of lucidity, the calm inside the eye of the tornado.  It’s here that I remember that I talk a lot about mindfulness.  I give myself a nervous laugh at the irony.  The irony makes me feel more human and asserts that I’m not the only one who might be feeling this right now.

At this point I did what I needed to do.  In that moment, I need to calm my stomach, so I took a stomach medication.  I also needed to deal with the Monkey.  I did this by getting up, changing my perspective, hobbling around on my crutch and tidying up in the kitchen for just five minutes.  Then I took some breaths, called the pharmacy to ensure my medications were coming.  I then sat and waited.   Things were winding down, I was exhausted but I had to stay awake.  I decided to grab one of my journals and a Sharpie and make a list of words I knew in French.

My medication came and that solved the other physical issue.  I made myself a tuna sandwich.  Then I fell asleep.

So take what you will from that!  Can you relate?

 

tintin-plastic-folders_0003-black-island

Lost Arts Radio – Sharing!

Today, just a quickie!

 

I have discovered this awesome radio program through YouTube.  It’s called Lost Arts Radio and it’s hosted by a great fellow named Richard Sacks in the United States.

It’s a health program… but health on levels that aren’t superficial.  He has many prominent guests that come on the show.

If you like to be informed on the state of the world.

If you will challenge your fear of red pill reality.

If you will open your mind, but more importantly your heart.

Then, this might be a gold mine for you!  I have been listening to the archives, but the next show is Saturday morning at 11am EST / 8am PST and after that there’s another on Sunday.

So I’m sharing this with you:

 

 www.lostartsradio.com

 

Be well.  Be happy.  Be filled with loving kindness 😀

I am the Cancer

An ego identity is the face we show to the world. It is also a way we define ourselves to ourselves.

 

who-am-i

 

Many people with chronic illnesses choose the illness as an ego identity. There are many reasons for this, but most are psychologically unhealthy. We may claim that we seek community, but relationships built around suffering usually start to create suffering. We might claim that we wish to help others from our experiences, but to truly help another is not to limit them but to share in discovering unlimited potential.

 

Wellness is experienced when we don’t limit our identity. The whole of our lives is greater than individual aspects. Wellness is about opening and acceptance. One dead tree, even if it is the tallest and oldest in the entire forest, does not nullify the grandeur and the many complex systems found in the forest’s entirety.

 

While a person may suffer limitations due to a disability, illness, or circumstance, life can still be as fulfilling as we wish to make it. Not limiting ourselves with a diseased ego identity is a simple way to admit that there are possibilities and passions that we are opening to discover. We refuse to be pigeon-holed into a universe that is mired in pain and suffering. Illnesses can be very painful, but no one can claim that pain is all there is to life.

 

young cheering woman jogger open arms at sunrise seaside,vintage effect
Be Limitless

 

What good things can you identify about yourself that open your heart and realize the potential of your mind / body / soul?

Calling the Magical Unicorn

So, I find myself awake at 4am.

I’m beginning a Crohn’s flare up.  Pain, bloating, you name it — like a pitbull, it’s growling in my face.  I’m not impressed.

I am trying to get to the bathroom.  The house is dark.  Of course, the eye infection I’ve been battling off and on for two months has crusted my eyelids shut.  I almost trip over a shoe.  All I need is a fall right now considering my last fall landed me in the operating room and wearing a leg immobilizer for four months.

I make it to the washroom.  The cat meows because it’s time for her breakfast.  I tell her she’s going to have to wait until I got sorted out this morning.  She doesn’t understand.

I return to my bed.  I pour a cup of cold tea from a kettle I made yesterday afternoon.  I add some sugar — I have a feeling I’m going to need it.  I turn on my light — are there any house flys that have decided my tea is their swimming pool?  No?  Good.  That was a most unpleasant experience two days ago.

I can’t find my eye drops.  I have three different kinds at this point — one is an antibiotic, the other is Visine for red eyes, and the other is a lubricant formulation.  The table beside my bed is quite cluttered despite yesterday’s attempt to organize and clean it.  There are my dentures, my eight pill bottles, papers from my counsellor, appointment cards, and a quart of paint that I haven’t used for anything in about a year.

Finally I find the Visine.  How good it feels within the first few seconds for my dry, red, burning eyes to feel bathed in comfort!

So it’s 5 in the morning.  I find myself, somewhat blind, and trying to open the box for a new lamp.  This one is a salt lamp.  Not just salt, but special salt from the Himalayas.  I struggle to rip the tape sealing the box.  I get it out and figure out how it goes together.  I am mindful not to electrocute myself as my aching back protests as I bend for a free slot to plug into on one of a few power bars.  The light works, fair enough.

 

saltlamp

 

Finally, I am starting to be able to see.  I read the product description on the side of the box.  There’s a leaflet for some health company that apparently has a lot of yoga products.  The box reads like an advertisement.  The general message is about “ions”.  I had heard of ions before.  Is it scientific?  I don’t know.  There is a mess of health advice that is either too clinical for me to understand or too pseudo-scientific to admit that you buy into it.

It feels like I’m calling the magic unicorn for answers.

This morning I am supposed to get an infusion of a newer Crohn’s drug.  It would be my first time with this medication.  I mull over my experiences with all these medications.  I don’t feel hopeful that this will be the one to change my symptoms.  I feel bad because I’ve kept the doctors busy filling out paperwork and getting the chemo ward at the hospital all set up to give me the infusion by IV.  Now, I don’t want to go.  I am flaring up anyway — I don’t know if you can even have it when you flarel  Regardless, I know I’ll be hiding from phone calls for a while now.

My thoughts go toward medicinal marijuana.  Does it work for Crohn’s?  Who is studying it?  What are the findings?  A glance at Google suggests that marijuana is a treatment for IBD, but everyone summarizes the research as, “we need more research.”  Meanwhile, I am still here.  Suffering.

 

medicalmj

 

I have a friend who smokes marijuana.  They could get me some.  I could try it.  The legality of it all is changing in Canada.  They are going to legalize and regulate and tax it.  I’d just be jumping the queue by a year or so.  I feel highly superstitious asking this, but it stands to reason, “At this point what do I have to lose?”

Let’s give the magic unicorn a try.  Afterall, the cat wants her breakfast!

 

magicunicorn