Living in Chronic Pain

When I think back on the times I used pain medications to get through the day, I feel like I was a failure. I am filled with so much guilt it is unbelievable. But then I think…

If I didn’t have pain medication, I wouldn’t have survived long enough to still be here. 

I am so far from being dramatic because while I completely and totally understand the argument about how we need harsh regulations on pain medications, there is another side to it. The patients side.

I have had severe ulcerative colitis since I was 13 years old, gone through 14 major operations including the loss of my entire large intestine, rectum and anus and now live with an ileostomy. Since my diagnosis, I have had so many complications that has affected every part of my body. I never had a break. It affected my sleep and since the age of 16, I have been dealing with chronic DAILY migraines. Not kidding. I have a migraine every single solitary day. Some days I can slap a smile on my face, stay busy and distracted and go on about my business. Other days I can’t. I have been to more doctors than I even remember and tried more medications than anyone ever should put in their body. But here I am now, almost 14 years following my IBD diagnosis and 11 years of suffering with debilitating migraines. I am still in pain every single day. Regardless if you see it in me. I live my life in agony. 

At around 6am when I woke up, my head was terrible. When I start having pain radiating down my neck, I know it is going to be a bad migraine day. I was going back and forth in my mind about whether or not I should take something for the pain right then and there or see if trying to sleep a little bit more would help. I decided not to take anything and tried to “sleep it off” which never works but I was hopeful. When I woke back up an hour later, I was in so much pain.

If I took something immediately would it have been better? I am not sure but doubtful. I have tried to take pain meds as soon as I know pain is getting too bad but sometimes I just need to take more later. So I try to hold off. I don’t want to wake up, take something to try to ward it off only to need another dose a few hours later. I don’t want to take medications. I hate them.

Today, I had an appointment that I wanted to keep. I didn’t want to put things off. I wanted to be able to carry on about my day. I cannot stand being held back by pain. And I have a HUGE pain tolerance. I have survived waking up from major surgery WITHOUT ANY PAIN MEDICATIONS. I have gone through hell and back and never complain about things unless its really, really bad.

But I am sick and tired of living in pain.

The only reason I was able to get my head off the pillow this morning was because I took something for my migraine. And now I can function for a few hours. But, the medication only allows me 10 migraines a month. And I always have more than that and sometimes need two doses in one day. So where does that leave me? Should I have held off on taking something just in case things get really bad at the end of the month? Was it the right thing to do to try to help myself in the moment? What will my doctor think if I tell him I have needed to use the pain medication more than usual? Will he think I am just a wimp who can’t handle a little pain? Will he get annoyed at me if I am honest in saying the preventative medication does nothing and the only thing that helps is taking pain meds as needed? Should I ween myself off the preventative (seeing as I have been on and off it for years) so I don’t have to waste time explaining things my doctor can’t fathom? And then just continue treating the pain as it comes?

Pain is detrimental to your overall health. It destroys your spirit, it destroys your sleep, it destroys your brain, it destroys your mood. It is just awful to deal with everyday.

No one wants to take medications. No one wants to feel like they can’t have the day they want unless they do whatever necessary to relieve themselves of suffering. No one wants the guilt of needing to take medication. No one wants to have these conversations with doctors. NO ONE WANTS A LIFE OF PAIN.

But given that there are some things out of our control and so many people who live in debilitating pain everyday, why should we feel guilty about trying to help ourselves? As the reality of the last 14 years gets clearer, I feel less and less guilt about helping myself. I did what I needed to do to survive. We all do what we have to. I just wish there was a little more understanding from doctors and the government about what it means to live in chronic pain.

 

  • http://flareuphope.wordpress.com flareuphope

    You should not feel guilty at all! You need to what works for you. If you need pain medication to manage your migraines, then you need it. Screw anyone who tries to make you feel guilty about that!

    • http://risaroo86.wordpress.com Marisa Lauren

      Thank you so much!!! That is how I try to think but as I am sure you know, very hard to wrap your head around that. Very nice to know I have so much support. <3

  • Jodi

    I’m sorry that you and many people like you live with this kind of pain on a daily basis.You make a great and valid point. As someone in the healthcare field, it reminds me to have more compassion for those I treat, and those like you, who live with chronic pain.
    It is astounding how much you have had to endure. Stay strong.
    love you.

    • http://risaroo86.wordpress.com Marisa Lauren

      Love you!

  • http://thisgreatape.wordpress.com seemorrigan

    Well, well, well said. I’m in so much awe of your strength and dignity. Thank you for this post.

    • http://risaroo86.wordpress.com Marisa Lauren

      Thank you for taking the time to read and comment!!!:)

  • http://twitter.com/MSeesBeauty Maurissa (@MSeesBeauty)

    Thank you so much for this open and honest post. I have Crohn’s Disease (very mild thankfully) and Ankylosing Spondylitis. I relate so much to your feelings regarding pain meds. I’m in constant pain everyday but always hesitate to take pain pills because of the way they make me feel–weak and helpless. But, like you said, we need them to function. They make it possible for me to play with my kids and maintain some semblance of normalcy. You’re an inspiration, and your blog is amazing!

    • http://risaroo86.wordpress.com Marisa Lauren

      It is such a mental battle about whether you take something so you can enjoy your day and loved ones, or if you should suck it up so you don’t feel the guilt. I really appreciate the kind words about this post and my blog. I try to be honest and talk about some things I think are a little difficult for others to discuss but it is so nice to know I am really not alone with this.

  • http://eatingdisordersgrowup.wordpress.com Ella M.

    I live a very similar existence–persistent frequent migraines that don’t respond to any of the available migraine medications. I have the same should-I-take-a-painkiller or should-I-see-how-bad-it-can-get debate on a regular basis. You’ve got to excuse the cliched pun, but I really do feel your pain.

    • http://risaroo86.wordpress.com Marisa Lauren

      Thank you for sharing I am not alone!

  • http://mallorycarter.wordpress.com mallory

    I’ve always had trouble with deciding when to take pain medicine… Either at the first twinge or when it becomes unbearable. Thanks for sharing and hang in there!

    • http://risaroo86.wordpress.com Marisa Lauren

      It is so tough to figure out what the right thing is! Hope you’re hanging in there too Mallory!

  • Pingback: Living in Chronic Pain part 2 | Keeping Things Inside is Bad for My Health()

  • Jennifer Bayes

    Very good blog. I am so sorry about your migraines. I had bad migraines like you about 8 yrs ago. Now, I have one every 1-2 weeks. I am just offering my take and tips for migraines. I hope u don’t mind. I took Topamax to prevent these HA. I now am trying to get off the med but it works wonder. I am aPharmacist, as u know, so I have an interest in this. If you have any questions, just email me back. I take sumatriptan for migraines. I can only have a certain amount to each month, however, if your MD can get you more by having a PR-prior authorization. Also, if you take a lot of Tylenol this can cause rebound migraines. It happened to me and now I try not to take many.

    Jennifer Bayex

    Sent from my iPad

    >

  • Sheila Bergquist

    Excellent article about a very “touchy” subject. Having that much pain and trying to handle taking meds for it is truly a “stuck between a rock and a hard place” situation. I love that you said you did what you had to do to survive…that is all we can do. So sorry about your pain. We need to stop feeling torn about the meds we take for things and I wish doctors would be more understanding and helpful about it.