Going For A Road Trip

My stress level has been pretty high over the past few weeks...with dealing with my plateaued progress with my ankles, and some upcoming family events.  But this past weekend I noticed my anxiety getting markedly worse than it's been.  This upcoming weekend we are going out of town for my brother-in-law's wedding and I'm really dreading the whole trip.  Don't get me wrong, I love my BIL, and my future SIL, and I'm happy to attend their wedding, it's all the other stuff that's a problem for me and my medical state these days.

The only long trip I've made in the past year was when I went to visit my parents in Delaware back in November.  Visiting them is a 3 hour car trip each way, and although it took a lot out of me, there was nothing expected of me.  We didn't go anywhere...I could wear my sneakers...I could put my feet up when needed...and I knew that if I didn't feel well, I could always go and lay down and rest.  Bottom line...I didn't have to pretend to be happy and well if I really wasn't.

 Most people don't realize how much pretending, or putting on a happy face, goes on when you are a chronic pain sufferer.  Even the simple question of, “How are you?” is a difficult one to answer.  Are they just making conversation? “Okay, and how are you?”  Do they want the short version of the truth? “I've had better days, but things could always be worse.”  Do they want the whole truth? “I want to go home and load up on pain meds until I fall asleep and don't have to deal with the pain any longer.”  By the way...I usually go with the short version answer so I don't have to freak people out and make them feel uncomfortable.  Aren't I nice? :)

This weekend allows me a limited amount of options.  Not only is it a longer car ride, but I can't wear my sneakers, I can't put my feet up, I have to go about things on my own (without my husband's help since he's in the wedding party), and I can't just leave and lay down if the pain gets too much.  Not only will I be bringing all my pain meds along with me for this trip, but my Xanax for the stress of it too.  It's amazing how much more anxiety I get when I feel like I'm backed in a corner and have no plan B.

Say prayers for me my friends!  I have a feeling the anxiety is only going to get worse.  Hopefully the pain will be less than the anxiety, although I have a feeling it probably won't :(

I'm not a jerk, I'm sick!

A friend of mine posted this the other day on facebook.  It speaks volumes for those of us who suffer from chronic pain and other invisible illnesses.  The only change I would make to this picture would be to replace the word "shady" with "jerk".

Check it...

I think some people think I'm a total jerk because I cancel plans at the last minute or I'm reluctant to make permanent plans just to avoid having to cancel plans at the last minute.  I'm not a jerk!  I'm sick!

There are times that friends or family will bring up these great, exciting plans... and I sit there with NO reaction at all.  This is because I'm totally conflicted!  On the one hand, I want to jump up and down and tell them what a great idea they have and how excited I am about it.  Then reality sets in, and I think to myself...

• What if I'm not feeling well that day? 
• If I do too much the day before, will it leave me with no energy or put me in pain?
• How far will I have to walk?  
• Will there be places to sit?  (Don't even get me started on the lack of benches in this world).  
• How long will I have to be on my feet?  
• How long before my back (or legs, or some other shitty body part) starts to cramp or ache?  
• Do I have to get dressed up? ...because currently I'm in sneakers...have been for a couple of years now (I've had arizona braces for both ankles)... and will be for another 6-12 months at least (assuming I can start wearing regular shoes again after my ankles are healed up).  No girl wants to be dressed up and wear sneakers.
• Do I have a ride home in case I need to leave early because I'm in more pain than I anticipated?
• How far do i have to travel?
• Do I have something important the next day?  If so, then I'll have to cancel one of them.

You see the dilemma.

Dealing with chronic pain is one of those invisible illnesses that many people just don't understand.  If you don't look sick, then they assume you are fine.  You should see the looks I get when I go to Disney and rent those mobility scooters.  If I'm in shorts, and you can see both of my 6 inch knee scars, then people seem to be okay.  But when I'm wearing pants, I just look like a healthy jerk who is too lazy to walk around the parks. Luckily, the employees at Disney are awesome and never make me feel jerky...I love you Disney! 

Same thing happens when I use handicapped parking...which I try not to use unless I'm having a bad day.  People see some goddess (okay, that MAY be an exaggeration :D ) coming out of the car and think I swiped my grandmother's handicapped tag because, again, I'm a jerky lazy piece of shit.  Well, I'm not a jerk, I'm sick!!

I was telling a friend the other day that I actually felt more comfortable going out after my surgery when I had my walking boot.  People can see the boot.  They're used to seeing many people who are “normal” people who have injuries wearing the boot.  To them, maybe I just hurt my foot while kicking ass on my roller derby team.  Yup, that's the story I should start peddling LOL.  Now that I'm in an aircast and pants, you just see me walking with a slight limp (which is almost gone...working on it!).  Nobody holds doors for you or gives up their seat for you unless you look injured or crippled.  I speak from experience.

Do my friends and family understand my chronic pain?  Well, my very close friends understand...like less than a handful.  As far as my family...sadly, not a lot of them do...but they try.  I really think the only people that really “get it” are fellow sufferers and the people that you live with, who see you suffer day to day.  It gets frustrating at times but maybe by sharing some of this it will help, even in the tiniest bit.

Recently I was introduced to a website that was started by a woman who has lupus, another one of those invisible illnesses.  It's opened my eyes to that fact that it's not just me who's having these experiences.  She has this great “spoon theory”, which is one of the best explanations for invisible illness I've come across.  I encourage everyone to read it in hopes that the more people understand, the more empathetic and less judgmental they'll be.  And that would make a better world. 

Anyone else suffer from an invisible illness?  Do you find people think your being jerky?   How do your family and close friends treat you?  

PS--I really want a shirt that reads, “I'm not a jerk! I'm just sick”.  You hearing me Santa!