Years ago, I worked with a lady who has Lupus. Although she lived with chronic pain, she didn’t miss a lot of work which really impressed me. I remember having a discussion with another co-worker one day about how awful it must be to live with chronic pain. While I often had issues with my back at the time, it was transient at that point. I would have “spells” where it was just horrific, but they would only last a few days. Then it would slowly get better over time, and then eventually it would almost completely go away. Despite the fact I was in chronic pain, I was at least appreciative of the fact that it was “livable” pain. It wasn’t until January of 2011 that I got my first mega-dose of chronic pain when I had the worst “spell” I’d ever had. That one lasted over a month. It was horrific. It was grueling. It brought me to the lowest point I’d ever had in my life - mentally and physically.
As my co-worker and I talked back then, I lamented the mental state of folks with chronic pain. Because I had a reference of understanding, I could understand fully why someone with chronic pain would contemplate suicide. It’s a bitch living day-in and day-out constantly hurting. You get to a point where you can’t even fake it anymore when someone says, “How are you?” You either just come right out and say, “Man, it really sucks to be me today.” Or you might tell the truth and try to liven it up a little with a smile on your face and say something like, “Well, totally awful but what’s the point in talking about that! How are you?” Although fairly rare, I’ve done both I’ll admit. Although lately, the former rather than the latter is what tries to escape my lips more often.
As my disease has progressed, I have had to learn to live with chronic pain. The first of this year for about three or four months, I was waking up practically every day almost completely pain free. It was enough that I could get by without having to take ibuprofen, but this, this was wonderful. Slowly though, the brick wall has thrown itself back up, and I’ve found myself sliding rapidly back into the pit of chronic pain despair. Believe me, it’s not been for lack of trying to stay out. Although my work out record lately has been less than stellar, I’ve been sticking almost 100% to eating gluten free. My intake of dairy is extremely low to generally none. My intake of carbs comes entirely from non-bread, non-pasta, non-wheat sources. I confess my sugar intake could use some work. I’ve had a bit more lately than I should. I’m working on it.
Despite the fact I had been doing EVERYTHING right for several months, and a lot still right for the last few months, my disease has taken back complete control of my body. I’m not sure why. I haven’t thrown in the towel. I’m not giving up on at least minimally eating right, and I’m hoping and praying that soon enough, I’ll be back to working out again daily. For now, the pain is keeping me at bay. Between the low back pain, the pain in my upper back, hips, and the return of my beloved Costchondritis (painful inflammation of the chest wall), working out is just not even an option. Additionally, my feet continue to break out, and now my hands are breaking out again. My hands generally only break out when I’m in a pretty significant flare. This one fits that bill.
I confess I contemplated suicide in January of 2011. There were moments when I considered the pain to be more than I could bear. There were moments when I really, genuinely thought my family would be better off without me. There were moments when the life insurance money seemed to me to be a better deal for my family than keeping my broken down self around. Then I would think about things like my husband trying to get my four year old dressed in the mornings and it just didn’t seem to be as viable an option as I had thought. In all seriousness though, I really did feel that low. And it was hard. It was hard to dig my way out of that. But I did. It left me with the realization that if I didn’t have faith, a wonderful husband who is supportive, and five beautiful children, what would have stopped me? The answer is simple: I don’t know. I don’t know what would have stopped me then if I didn’t have them, and friends I love, and extended family who mean a lot to me. I realized the selfish choice of that momentary desire even if I thought I would be doing them a favor. I realized the truth of words I recently heard my teen quote, “Suicide is a permanent solution to a temporary problem.”
Am I contemplating suicide now? No. Is this blog some veiled threat or foreshadowing to what I am thinking about doing? No. Understand what this blog is. This blog is a reminder that even when you look at someone who looks like they need to drop a few pounds but looks perfectly healthy otherwise, you don’t know what battles they are struggling with internally. You don’t know how they are feeling at the moment. I can easily hide or distract from the couple of “visible” symptoms of my disorder, but I’ve really mastered hiding the ones you can’t see particularly if you don‘t know me very well. Most people would never know on the day to day over the past decade that I’ve battled physical pain and fatigue almost daily. But I have. And it’s been hard. I’ve overcome it this far though, and I intend to keep going. If nothing else, I’m going to be the poster girl for working women and mothers with auto-immune disorders.
Despite the despair I am feeling today, I am still hopeful. I go for my next infusion on Wednesday, earlier if there’s a cancellation. I’ve contacted my Rheumatologist to let him know about the elevated symptoms so that my infusion can be adjusted accordingly. I’m feeling low. I’m feeling down and out. I know this is just yet another storm I have to weather. I will overcome it. At the same time, I am cognizant of the fact there are people out there who lack faith, the support I have from family and friends, or who just haven’t yet mastered the skills I’ve been lucky enough to master to deal with my disorder and everything else that comes with being me. I still get depressed; I still get down. I always come up swinging though. I’m saddened for my brothers and sisters out there who eventually go down and can’t make it back up. I’ll never judge. I’ve never been in their shoes regardless of what I think my experience has taught me.
If you are reading this and you are struggling with any of the following:
- Chronic Fatigue
- Chronic Pain
- Any auto-immune disorder
- Whatever other sorry demon you’ve got in your life
… Remember these problems and/or flares are only temporary. I have found my golden ticket between DDPYoga and eating gluten-free. I know this is the combination that will get me where I need to go. I’ve just got to remember to hang on just a little longer. I may not ever be “100%” in the world of physical health, but I can give life 100% of what I’ve got. Faith, patience, and a whole lotta hard work will pay off for me in the end. As my old pal DDP says, “Life is 10% what happens to you, and 90% how you react.” Add those two numbers together and you get 100%. So, I’m gonna heed DDP’s advice even on my lowest days. I’m no math whiz, but I’m thinking 90 is a much larger number than 10. In other words, maybe not today or even tomorrow, but I’m thinking my 90 is going to kick life’s ten in the ass.