It Scares Me a Little…

The past few weeks of my “Reset” have gone really well.  I’ve been getting enough sleep, working out, eating well.  I haven’t been perfect but perfect isn’t my aim.  I’ve been looking after myself and I feel good about that.

Problem is… My pain is bad lately.

It’s everywhere.  In my head, neck, face, shoulders, arms, elbows, hands.  And it seems that every second day or so it flares up to unbearable.  It makes me grumpy and frustrated.

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It doesn’t help that a loud person recently bought the apartment above me.  She seems to like coming home inebriated at 12, 1, or 2 am and staying up for hours, wandering from room to room.

 

On nights when I don’t get enough sleep my pain is always high the following day.  And that creates a mild panic when I know I’m being kept up.  Which loops around and keeps me from falling asleep.

My doctor has never really come up with a good explanation for my issues with pain.  (My doctor is also completely useless so coming up with a good explanation is probably way beyond his abilities).  It isn’t just migraines.  It is pain in the tissues of my entire upper body.

It’s been a couple of years since I was having frequent bouts of pain that are centered in the tissues and not in the head.  I’m not sure why it is happening now?  I know that stress sets it off and that has been a major problem during the most stressful times in my life.  But.  I’m in a good place.  So.  Why?

It scares me if I’m honest.  It makes me feel trapped within my body.  There is something about pain that makes one feel panicked… Because you cannot escape it.  It’s something inside of you that you cannot claw out.  You have no option but to go through it.

This pain isn’t the end of the world.  It is so much less than the pain that so many people deal with every single day.  But it is a problem and it does have a significant impact on the things that I am able to do.  I know that I need to get lots of sleep, especially when the pain is flaring.  Sometimes I need to be lazy, like: really really lazy.

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The worst part about this is that it’s so difficult to talk about.  I hesitate to post about it because I think it sounds like I’m looking for sympathy or throwing myself a pity party.  I’m not.  This is what it is and in the big picture my pain isn’t the end of the world.  It is something that I need to get better about, something that I need to deal with.

I think we all have these things that we carry around with us.  We get frustrated with that friend who is always late for drinks, or the person who has stopped returning our calls.  We frown over that colleague who never joins in when we go for after work drinks.  It’s important to stop and wonder why.

Sure, some people are simply flaky and we need to love that about them (or cut them from our life).

But I suspect that more often people drop away because they are dealing with something.  Something that maybe they don’t want to talk about.  Or don’t know how to talk about.

I think we all need to cut one another a little slack.  Stop judging and start wondering.  Offer support where we can.  Lean when we need. Assume that most people really are doing the best that they can with what they have to offer the world.

It’s World IBD Day! (AKA: The Perfect Day To Stay Home and Be Violently Ill).

I’m going to warn that this post is tots TMI!  If you are interested in (or have) UC or Crohn’s it is designed to inform and (hopefully) to make you laugh.  If not, you might want to stay away.

Canada has the highest rate of IBD in the world (1 in 150 people rather than the world average of 1 in 350) so the chances are, if you’re a Canadian, you know someone who deals with this disease.

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I have Ulcerative Colitis.

Typically my life is pretty normal.  My average, non-flare, symptoms will usually include fatigue, arthralgia and headaches.  This is on a daily basis but I’ve learned to adjust and so it’s not much of a bother.  I live my life pretty simply, cater to the fatigue as much as I can and I tend to be okay.

I think the biggest impact that my disease has had is on my self-esteem.  It’s hard to feel sexy or attractive when, at times, your life revolves around the bathroom.  It’s really embarrassing to tell people about this disease.  As I get older it gets easier because I’m less embarrassed by it – it’s just my life.

At other times I “flare”.  I can usually tell that a flare is coming when I start to get unexplained fevers (mild but they make me feel gross and sweaty), when the arthralgia gets worse, when the fatigue begins to impact day-to-day functioning, when I start to feel non-stop nausea (sometimes I suspect that a UC flare is very similar to the early stages of pregnancy).

All of these symptoms start before my guts start to lose their mind, freak out, and attack my body with a vigor.

Then my guts will get involved and all bets are off.  Who knows how I will feel tomorrow, today, in 5 minutes.

Seriously annoying.  And Painful.

I had started a minor flare a few weeks ago, did a 3-day juice fast, my typical first line of defense, and thought that I got it under control.

I was wrong.

I’m just going into the second day of a flare.  The kind of flare where I can tell I’ll be scared to eat for awhile.

The funniest part of this disease is the level to which the foods that make you sick are random.  People always ask “will this make you sick?  this?” and while I love their intentions and I wish I could reassure them… I can’t.

The first time I got sick (really sick) I couldn’t eat chicken or bell peppers.  Even the smell of them would send me running for the bathroom.  That summer I lived on nectarines.  Bags and bags of nectarines.  They were literally the only thing that made me feel okay.  (I look back now and think that this is amazing because it’s been about a decade since I could eat raw fruit and veggies without immediate and dire consequences, flare or not).

A couple of years ago I spent an entire month living on Itchiban Noodles which were only okay if they were cooked in the sodium-laced broth, the broth was then dumped out and the noodles were consumed on their own.

A few months ago it was the Homestyle Chicken Breast Sandwich from Wendy’s.  Hold the mayo, tomato and lettuce.  And sometimes the bun.

The more processed and terrible a food is the more likely it will agree with me.  My theory on this is that these foods have so few nutrients and fiber they are practically predigested.  Therefore my body doesn’t go crazy trying to deal with them.

Last night I put steel cut oats into the slow cooker with almond milk and cooked them overnight.  I had one tablespoon at 6 am to see how I would react.  I was sick for 2 hours.

One. Tablespoon.  Two.  Hours.

This disease is a bit ridiculous.  It’s kind of funny.  And let’s be clear.  I am so so so lucky.  I have never landed in the hospital.  I got the disease at 18 and so didn’t have to deal with the embarrassment and disruptions that this would have caused to my teenage (or younger) self.  I have family members whose experiences with IBD have been much much worse.  If my UC ever got that bad they would remove my colon and I would no longer have the disease.  While this horrifies and terrifies me and I’m going to have to get a lot older and more mature to think that I’d want to live life without my colon… It’s an option.  People with Crohn’s do not have this option of escape.  My UC is mild and it really doesn’t impact my world to that huge an extent.

My disease is an irritation and one that I’m now often able to laugh at.

So, I’m at the start of a flare and I plan to start the search today for a food that shall make my guts happy (or at least not violently angry) for the next few weeks.

FYI: last night I tried the Wendy’s chicken burger in desperation and I can say with absolute certainty that that won’t be the solution this time around, lmao.

I’m going to make gnocci with plain tomato sauce tonight.  It’s a bit ambitious (tomato sauce is after all a veggie) but I’m hoping that it will be sufficiently inoffensive.

So today hug a person with IBD (or be even kinder and let them ahead of you in the line for the ladies room).  Tell them that their symptoms really aren’t that gross.  (After all, shit happens).  Read a bit about it.  Try not to react with disgust when someone tells you they have it.

Watch this if you want to learn a bit more…