The life of a chronic pain patient is sad, but it needs to be heard

I try to keep my blog posts on the positive side because people respond to that better. Which makes sense.  Hearing about other people suffering is something we innately run from.  It’s hard to hear and tough to swallow.  But the truth is, people who live with chronic illness and pain don’t get to turn a blind eye at the daily negativity that circles their lives. I think it’s important to share reality for a chronic illness sufferer.  Not because we want empathy, but so that those around us can become more understanding and aware.  That is something we lack greatly in our society, which makes living in pain an even greater burden than it already is.

Ever since I started living with chronic pain four years ago, I have mainly stuck to holistic methods of gaining relief.  Everyone who deals with illness goes about it differently, but my personal path consisted of a lot of research trying to figure out the root of the problem in attempt to reverse it.  I’m not big on masking the pain, and frankly never liked how pharmaceutical drugs made me feel anyway.  But like I said in my last post, I am running out of ways to make things better. The acupuncture, supplements, diet changes, meditation, physical therapy, and many surgeries to “fix” things have all helped (and drained my savings), but my quality of life is still not good.  I am feeling so desperate to go out and enjoy life that I have decided to loosen my grip a little and allow myself to try some different medications. But as with everyone, finding medications that agree with my body is a trial and error process. With that said, here is a typical month for a chronic illness sufferer:

This month we discovered that there is likely ongoing endometriosis on my diaphragm due to chronic shoulder pain and shortness of breath that keeps me awake at night.  There is no drug on the market to help that, so I am doing visceral therapy ( in attempt to avoid surgery) which can sometimes make things worse before it gets better.  And that so happened to be the case this week.  1 am, 4 am, you name it – I am probably up pacing the house or tossing and turning.

The daily stomach spasms I have are due to adhesions and scar tissue on my abdominal wall from surgery.  I was in Michigan last weekend for me and Hayden’s post-wedding celebration and spent 20-minute intervals upstairs in bed during the party to keep it under control – wishing I was hanging out with my family and friends.  Feeling fed-up, I tried a different route and saw a gastroenterologist yesterday.  I told her that muscle relaxers help sometimes so she gave me a prescription for one that specifically targets the abdominal wall muscles.  My stomach pain has been horribly flared up the last two weeks so I was excited to try it.  I took it last night around 5 am, since I wide awake from the shoulder pains anyway.  Within an hour, my heart was racing, my teeth chattering from the chills and I was running to the toilet every 10 minutes.  So much for sleeping.

I had an ultrasound yesterday morning to follow-up with a ruptured cyst I went to the ER for a few weeks ago.  Although the cyst has gotten smaller, it looks to be a blood-filled endometrioma, which means my endometriosis in my pelvis could be back.  Not to mention, it hurts like a bitch.  I am almost one year post up from a very expensive excision surgery that left me with less than a 5% chance of my endometriosis returning.  I am sure you can imagine how devastating it was to hear that news.  It felt like we were taking ten steps backwards.

Lastly, I started on birth control in attempt to suppress my cycle and the endometriosis.  Unfortunately my body did not respond well to it.  I had chronic headaches, dizziness (literally felt like I was on a boat) and nausea for the last two weeks.

All the while, I am scheduled to work my new job among other responsibilities.  Scrabbling, going to appointments trying to get my symptoms under control so that I can be productive takes up much of my life.  But nothing went as planned this month – but does it ever?   I was not able to work for the second time in my merely two weeks at the new job.

I am planning a baby shower this Saturday for my best friend who is flying into town.  I had beautiful plans for it: a cascading greenery backdrop for photos, 12 centerpieces and a flower crown.  Well, it is Thursday and I am still lying in bed in pain.  I got up, took some Advil and my muscle relaxer to try and make it to the flower wholesaler but about two minutes into the drive my stomach spasmed, which is so excruciating I can’t even think straight.  For safety, obviously, I had to turn around and head home.  I wish it was one of those days I could push through the pain, but it just isn’t.

I was feeling so well a few weeks ago, I really thought things were looking up.  But I continue to get knocked down time and time again.  The best word I can use to describe the feeling is drowning.

It’s hard hearing about unfiltered chronic pain isn’t it?  It’s sad and it sucks.  Can you imagine living it every day?  I know it feels like there is nothing you can do, but there is.  The next time you are around someone with a chronic illness meet them with kindness and understanding.  It’s not empathy that we crave, its validation.  It’s knowing that you understand why we are unreliable.  The guilt that comes from our limitations can be suffocating, but hearing something like “Hey, it’s OK. I know you tried, but it’s out of your control” is honestly life changing for us.

If you got through reading this, thank you.  You just did something to make it better. You listened and you tried to understand. And I know that isn’t easy.



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