Chronic Pain Chronicles

Chapter 12

I hit a pretty low point last night. I cried through half a box of tissues after admitting that I’ve hit a wall and really don’t think I’ll ever get better than I am right now.

I had a migraine and was very nauseous as well. Joey came in and was sweet and wonderful I was able to go to sleep.

This morning my migraine was gone and I felt a little less hopeless. I decided that before I did anything else, I needed to finish reading Codependent No More. Lucky for me, I was on Chapter 12, “Learn the Art of Acceptance.” I proceeded to read all about the grieving process—something I encounter on a daily, sometimes even hourly, basis.

The stages:

1. Denial

2. Anger

3. Bargaining

4. Depression

5. Acceptance

I realized that all that’s happening right now is that I am stuck in the depression stage and that’s that’s okay. My best friend reminded me last night that I am legitimately scared and frustrated. What I found the most comfort in realizing is that acceptance is generally the stage after depression. I can’t wait to be there so I can move on to the next obstacle. I know there will be more. There are always more.

I think I didn’t realize until now that getting off all my medicine and changing my treatment plan was a loss to me (although ultimately a good one). I had to change the way I was living yet again and give up more “stuff” in order to give this new lifestyle a chance. I guess I am still grieving over it because I lived the other way for so long. And without all the drugs, my situation is a bit more obvious and real to me and emotional pain hurts a little more (of course, I am happy to be feeling emotions like a normal person again instead of like a zombie). But that’s all okay, too. I’ll just wait for this chapter to end so a new one can begin.

Let’s Talk About Feelings

This is my secondary blog. I have this blog because I need an outlet where I don’t feel like I need to be positive all the time. I need to be able to talk about all the crap that happens to me daily. I need to be able to say that I absolutely hate being in pain all the time and that I know most people I know don’t understand (although some try to and a few can relate). I need to be able to complain and gripe and whine without feeling like I am going to lose any more friends or be judged too much. If I really seemed happy all the time, it would be an act and I am an honest person and don’t like to have it pretend.

Being positive is nice and all, and totally necessary as part of the healing process, but it is also exhausting and I just can’t always do it. Lately, I can’t even figure out how to do it half the time. The best I can do is try to rejoice in tiny triumphs. Like the fact that I dried and straightened my hair for the second time this year tonight. My arms are starting to flare because of it, but at least I look less sickly right now with my straight hair and hopefully I’ll look better tomorrow for the baby shower I’ve been planning for the past couple months. But then i think about the fact that it’s only the second time I’ve been able to do it in over seven months and it makes me more sad.

The truth is, I just feel downright crappy. I’ve been off of all my medication for about a month now and while I don’t feel worse, I also don’t feel better and I kind of feel like this might be it for me. A lot of people are very excited that I am off of everything but I think it’s because they are under the false impression that I got off of it all because I am doing better. But I just couldn’t take it anymore and I felt like I wasn’t really living anyway, so there was no reason to be taking all those drugs. They were not improving my well being at all. Now I’ve kind of run out of options. I wish I could be as excited about myself right now as my friends and family seem to be. But when I look in the mirror, I still see the same girl who is in endless pain and who is constantly confused and exhausted. I see the girl who can barely have fun and who still has to calculate every move in order to try to inflict the least pain on herself at any given moment. I see the girl who has a support group made up of the best husband in the world, an amazing family, an understanding best friend, and a couple other good friends as well. But I don’t see a girl who feels like she gives enough back to those incredible people in her life. I see a big old mess that is impossible to clean up. And I am OCD and I don’t like not being able to clean up messes.

So what am I supposed to do next? I keep talking about my feelings, but feelings are what got me into this mess to being with. I have always felt a little too much. And there were times in my life when I tried so hard to suppress it that I think I convinced myself I was less emotional, but I was just lying to myself and now look where it got me. I can’t handle stress but I am doing everything I can think of to learn how to handle it better.

I am at a standstill and I don’t know what to do with myself. And that’s why I need this blog. I have a private pain journal and I write a lot in there and I’ve been against having a blog like this for a while, but I have reached the point where I am willing to give it a try. Maybe someone out there will benefit from what I have to say (although probably not what I have to say in this particular post). I’d probably feel a little better temporarily if I felt like maybe I’ve helped someone else. Some days I have better insight than today. Most things about today just plain suck. Except my hair. My hair looks good today.

The Sadness Cycle

Lately, I’ve been trying find all the links between my levels of anxiety/stress and pain. In doing so, I’ve started to notice a pattern that I go through almost daily, and on some days, even hourly. I call it my sadness cycle and this is roughly how it seems to work:

It tends to start on days when I either already don’t feel well physically, or on days when I seem to have a little too much adrenaline and am feeling a false sense of “good”.

I will be going about my day until something “bad” happens (some days this happens much sooner than others).

My first reaction is generally be disbelief over the situation.

Next I get annoyed and frustrated because I am quickly losing control over the situation.

The frustration turns into anger and I become defensive.

I start to internalize because I don’t want to appear “mean” or unpleasant.

I don’t do a good job internalizing because I am such an open person so I get overwhelmed.

I end up very sad and I feel like a black cloud has settled over me.

I cry.

I go into overdrive mode, trying to take control of the situation and prove everything to everyone (probably myself more than anyone else).

I get so tired of caring that I push the bad/sad thoughts aside until it happens again. Often this means going to sleep.

***

So basically it’s like I am in a constant state of grief. I know that this is a combination of my history with OCD and codependency. I need to figure out how to break this cycle. My body suffers from it and I don’t even want to think about how much damage it’s done to my emotional well-being.

It’s difficult to think about how much stress has contributed to my health problems, but I know it’s a huge part of the puzzle. Admitting that stress is the problem is hard because it means taking responsibility for my sickness. But there is a huge difference between accepting responsibility for a mistake or series of mistakes and behavior that is self-loathing, where you just blame yourself for everything that has gone wrong and don’t do anything constructive about it. Now I need to figure out what I can take away from this that is constructive and how I can use it to start to break this cycle.

These Boots Are Made For Walkin’

I’m not exactly sure what’s been going on with my legs the past couple days, but on Friday night I started to realize that my knees were buckling a lot when I tried to walk around. Then I woke up yesterday and it felt like I had run a marathon on Friday (which I most definitely did not) because my legs were so sore. It got worse throughout the day. They even started to feel tingly and numb towards the end of the night. I have never experienced this before, but I have to imagine it’s a fibromyalgia related symptom. My FMS has always affected my arms the most, but my body is undergoing so many changes recently that I guess it’s no surprise I would have a new symptom. I just hope it doesn’t last too long.

It’s only 9:26am right now and they aren’t sore so far, but they are definitely tingly. I guess we’ll see what happens next.

As Luck Would Have It

This is a post I made on my other tumblr, 23-Skidoo.tumblr.com, 2 months ago. I think it’s a good place to start this blog. I am a work in progress.

***

Since I was diagnosed with IC about two years ago, I’ve discussed my medical issues with a wide range of people; young kids, the elderly, healthy normal people, other sickos, friends, acquaintances, total strangers, compassionate folks, inconsiderate jerks, funny people, idiots, etc. Despite each of their own idiosyncrasies most of the conversations end the same way. Some people offer to help; others remind me that even though it’s bad, it could be worse. A lot of the time I hear the old, “But you don’t LOOK sick.” And a lot of people’s grandmas can’t eat much either and take a lot of pills, too.

In the end, the general consensus among pretty much all of the people I talk to ends up the same; they assume I must be very *unlucky* to feel this way at such a young age. They express some sort of sympathy or maybe even pity and I tend to respond with a sigh and a comment about how I am thankful, at least, to be lucky in love.

***

I have recently made the decision to stop taking all of my medications. I also stopped getting DMSO instillations. I even voluntarily discharged myself as a patient from the pain clinic I’ve been going to for the past year. I am opting instead to go back to acupuncture, eat organically within the parameters from the IC/FMS/IBS diet guidelines, take more specific vitamins, and give therapeutic massages a try. The hardest part so far has been dealing with the withdrawal symptoms caused by some of the prescriptions this past week. At first I thought I had a stomach virus because I’ve been extremely shaky, nauseous, anxious, and very dizzy. Turns out my body is just really confused, as it should be.

I just can’t stand the idea of putting all those chemicals into my body anymore. They say the IC bladder is like an open wound. Why would I have ever though that putting chemicals on an open wound would help? I guess out of desperation. I’ve seemingly tried almost all of the treatment options available to me. Pills. Pills Pills. Elmiron, Hydroxyzine HCl, Cymbalta, Lyrica, Neurontin, Amitriptyline, Vallium, birth control, gotta-go pills, anti-spasm pills, etc. I’ve gone repeatedly to the doctor to have a catheter filled with chemicals instilled into my bladder. I’ve had two cystoscopys, one with hydrodistension. I’ve tried to exercise, eat nothing but white food, and have gone to physical and emotional therapy. I’ve tried so many other things I can’t even think of them right now.

I’ve tried all of these treatments because some of them work for some people out there. The *lucky* people who have been able to find miracle cures that put them into remission. Since my illnesses aren’t life threatening, just life-altering (to put it in a kind way), I am allowed to try as many different options as I want with no promises that anything will ever help. And sure enough, nothing has. But all along I’ve been thinking I’m just too complicated and not that *lucky*.

Then I had a brief moment of clarity just a few days ago, I realized that I’m looking at this all wrong. I’ve been ignoring what’s right in front of me because it’s easier to just drag along when you’re feeling bad. I’m not *unlucky* at all; in fact, I fear I may be luckier than most (I say fear because I have a complex about feeling luckier than other people. It doesn’t seem fair and my ultimate dream is for everyone everywhere to be happy and nice). This moment of realization hit me after a recent anxiety attack over, among other things, the thought of being medicated for the rest of my life by drugs that don’t even help me, make me feel like a different person, and actually totally suck at even masking my pain.

I realized that any progress I have made over the past two years is not because of medications. It’s the other things I’ve done; the non-chemical steps I’ve taken. The acupuncture, pelvic floor therapy, and diet, for example, have helped me tremendously and have involved no chemicals at all. Guided meditation has also helped. My IC support group has been a lifeline. Sleeping for 8-10 hours at a time is always good. All the drugs have done is prolonged the time between anxiety attacks a little and aided the FMS in fogging up half my memory. I’ve thought over and over that the reason I have so many problems to begin with is because of chemicals and toxins I allowed into my body over the past 25 years. Yet here I’ve been, adding more and more and feeling mostly worse. It just can’t be a coincidence.

As *luck* would have it, I realized all of this at a time in my life when I am able to make some positive changes. I have a supportive family, a relatively stress-free job, and an FSA account. I now know for sure now that I am not *unlucky* in matters of health because I learned firsthand the danger of all the toxins we put into our bodies at a young enough age to conquer them. I am *lucky* because I was forced to go through these difficult years but I’ve learned to overcome a lot. I am lucky because even in the face of all the past *unluckiness* I smiled, laughed, helped others, worked hard, accomplished a couple goals, and even got married to the love of my life.

***

The relationship I have had with my body over the past couple of years has been troubled. Toxic, some might say. If you’ve ever been in a relationship or had a job that randomly made you stop and panic at the thought of being stuck in it forever, then you know how I have felt about living in this body. But with a relationship or a job there is always an out, despite the unwanted consequences. When you’re stuck in your own skin, there’s a lack of control, or so it seems. I’m glad to say that I’ve come out on the strong side of leaving troubled relationships with both guys and jobs. I can’t walk away from my body, but I am ready to mend it as best as I can. Overall, I am ready to take the hint that none of these attempts are working because they are not what is best for me.

I’m early in the process and it’s scary and a relief at the same time. I have a tendency to get overly excited about ideas and then get disappointed very easily, so I am trying to stay at an even pace. I know not everything I try will work. I know this isn’t quite the end. But I know I’m not meant to feel like this forever and I will not miss the pain, the pity, or the toxins when they’re gone.

***