Monday, July 14, 2014

Chronic Pain Sucks

(**disclaimer... this post is in no way meant to make anyone feel bad or solicit a response. I have plenty of great friends and family who have been very supportive of me during this chronic pain journey... and it also reflects feelings that seem to be a general consensus of several other people I have gotten to know during the last year who also have chronic pain...)

I know. 

Strong words.....  but I honestly can say I've never had chronic pain in my life up until this point. And this is one of the reasons I have been on hiatus from blogging.

And it sucks.

So if you are looking for rainbows and unicorns today, you may just want to pass on this post.

Just sayin.....

 I've had many surgeries or pain causing incidents in the past, but the pain that just never goes away is a completely different existence.

So, I've had this pain since August 2013.  More than 9 months now. I've been to every kind of doctor, I've tried every kind of medicine and I've had every kind of test run on me.  Basically, I am having a burning nerve type pain constantly in my ears and along my cheekbones. And the muscles on my face, forehead and above my ears are cramping all the time. On a pain scale, my pain is always between a 3 and 7. And that is with taking all the pain meds I can in a day.  My neurologist is going with, 'facial neuropathy that is similar to Atypical Trigeminal Neuralgia'. 


After the first several doctors ruled out what they thought it wasn't, I started trying to partner with Google to diagnose and fix what was wrong with me. I really honestly wasn't even praying at that point, just wanted to fix it. 

I then hit a point where I just started feeling depressed, part of it was the meds, part of it was the fact that I could see no foreseeable end to the pain.

At some point I started really praying for myself and asking others to pray. And at that point, God didn't heal me.  But he did start building my patience muscle.

Patience that I'm not going to get everything done during the day that I think I should. Patience with my kids. Patience with my situation. Patience with life in general.

And honestly at that point I was like, 'Okay God, got that down... can we move on now?'

But we didn't.

What has been very interesting along my journey is that I have the unique position to be able to empathize with others in chronic pain. And I've realized there are quite a few in my realm of knowing people who are in chronic pain.

And so at this point, I would like to present to you the top 6 things not to say to someone who is in Chronic Pain.  These seem to be pretty consistent with others I have talked to.

6 . Let go and Let God.   
catchy Christian sayings are just so not helpful

5 .Sorry you are in pain... but you look just fine.
thankyouverymuch.   did you know that I can actually put on a fake smile and a pretend happy attitude for short bursts of time? I can. Just because I'm standing here smiling and talking to you doesn't mean I'm not in constant pain or that I'm not on the brink of just completely losing it.

4.  You really just need to put some margins in your life and slow down.  bwahahahahahahahahahaa.....  but seriously, I did. For 3 months last fall we stopped all extra activities and I tried to rest as much as I could. Nothing. Not better one bit. The truth is that there are days my pain is so great that I just have to lie down for several hours at a time.  But I have 4 kids and stopping all their activities isn't really all that helpful. And people still want to eat three times a day and have clean clothes to wear.

3.  Have you tried _____________________ (insert anything)? Because if you haven't tried that, then THAT might be the thing to heal you.
Seriously so tired of this. I understand people are just trying to be helpful. But when you just get barraged with suggestions, it's not as helpful as one might think. (and I've discovered that anytime someone has a problem, people come out of the woodwork to give you advice)  And then I feel like since you said it, I need to go spend more money and try it out just to make sure that I'm not missing the one key to a painfree future.  If you have actually had the particular pain and you have actually used a particular doctor or therapy for it, your suggestions are more than welcome. But if you are just throwing things out, please throw with caution.

2. 'I've prayed for you this week. Are you better yet?'
 No, I'm not better. Maybe there is unconfessed sin in YOUR life. (ha.... totally kidding....) But seriously, all this does is make me feel bad that you have been praying for me and God hasn't made me better.  And when you ask day after day and week after week, it honestly makes me want to start avoiding all social situations (like church) just so I won't have to feel like I need to smile and pretend everything is just fine.

And the number one comment that is so very not helpful......
(drumroll please)

1.  'At least you don't have _________________'  (insert any number of death causing diseases)       
Do you even know how many times I've been told this in the last 9 months? I agree, I totally am grateful I don't have cancer, or lupus or ebola.   I am currently praying for several people who have life threatening issues. My heart breaks for these people.  Almost everyone has someone in their lives with something really bad. I can't imagine.  But the truth is that sitting here in pain that never goes away and is driving me to brink of insanity and affecting my activities of daily living and I currently cannot see the end to the pain......... knowing that I don't have a life threatening condition is honestly no help at all.  And just because my problems are not as life threatening as someone else's, it in no way diminishes the difficulty of what I am going through. (stepping off my platform)

Helpful things to say to someone with Chronic Pain:

1. What's your pain level today on a scale of 1 to 10?   (empathy)

2.  Can I watch your kids at your next doctors appointment? (because there is always a next doctors appt)

3. Tell me what kind of pain you are having? Is it burning or cramping? (listening to what kind of pain I am in and commiserating with me)

4. Chronic Pain sucks.  (yes, this actually makes me feel better when someone articulates this)

5. I'm going on an all expense paid trip to the French Polynesian Islands and can bring a friend. Wanna come?  (dear heavens yes)

6. I've prayed for you this week. (sans the areyoubetteryet) (really, I covet your prayers, and I am grateful for them.  thank you so much for praying for me)

7. I'm sending chocolate. (chocolate is the universal offering to show you care. chocolate knows no language barriers or boundaries.... chocolate just knows love, especially Harry and David milk chocolate truffles.... just sayin)

All that to say that Chronic Pain Sucks.  And the chronic part is quite possibly the worst part.  Not knowing when or if this will all end and life will go back to normal again.  I have recently tried something that seems to be working. More on that later. But part of the pain is still there. And God continues to work on me and refine me and finds way to still encourage me and give me hope.

Tomorrow join me for:

Botox - The Gift that Keeps on Giving

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.   Jeremiah 29:11

1 comment:

  1. Sometimes the most encouraging thing we can do is to be real. Thanks for being real and sharing your struggles. I know it's encouraged SO many. Love you!


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