Monthly Archives: April 2016

Life

***I’m going to talk about suicide. After reading posts on Facebook from others with dystonia, it seems to be on the minds of many lately. I want to share my experiences with suicide and I am going to be brutally honest. Some of my first-hand experiences may be tough to stomach.*** 

 

Someone suffering with dystonia attempted suicide a few weeks ago. I hear about an attempt every few months. It made me reflect on my own experiences with suicide. Yes, to be frank, I have contemplated suicide on more than one occasion. And while I won’t go shouting from the rooftops, I feel it important to share and step outside my comfort zone. I don’t regret my suicidal times. They have given me perspective on my life and helped shape who I am today. They have also shown me how strong I am. I dealt with suicide caused by clinical depression, as a teen and young adult. Then again, in more recent years, when I was beginning my journey with chronic pain and dizziness from dystonia.

There was a time long before I ever had dystonia that I dealt with depression. Dealing with chronic depression as a teenager and young adult, I understand the need to end your life. I sincerely hope you don’t. I would describe it as a never ending drive. An overpowering drive. A drive that pulls you down a bottomless pit. A place where evil beings claw at your arms and legs in an endless attempt to keep you falling down, down, down into total darkness.  No light. It hurts to breathe and you have lost control of all rational thoughts. You don’t deserve to live. You are worthless. You are not being selfish, you are making the world a better place by removing yourself from it.

Within this deep depression, normal thoughts are shoved out and replaced with creative ways to kill yourself. What would be the quickest? What would cause the most pain? A painful way is best because you deserve the pain. I will spare you my list of ways. Yes, I still remember them all and I it is a lengthy list.

Luckily, I escaped that depression some time ago. It lingers, on rare occasions. But now I can discern the irrational from rational thoughts. That’s how I know that I’m ok.

There was a more recent time when I was unsure I could handle the dizziness and physical pain from dystonia. A time when I couldn’t consider living the rest of my life that way. Contemplating ending my life was completely different that time. By then, I no longer viewed suicide as a viable option and knew there was no danger of me acting upon it. Still, I dreamt about it when I saw no end to the pain. And while I was depressed then too, (because it is depressing to live with chronic pain) depression didn’t lead my thoughts. The pain and never ending dizziness did. This time, there was no drive pushing me to do it. This time, dying was not darkness but going into the light. Becoming engulfed in never-ending warmth. Like a sunny day that never ends. Or a bath that never gets cold. An end to all pain. Complete peace.

I can’t explain how both situations could carry such different emotions. I don’t know if others have had similar experiences.

Today, suicide is not an option for me.  I have known that for years. I don’t condone suicide. Not at all. It is a completely selfish act that I have no right to make. God has a plan for my life and even on my worst days, I hope for a long one.  It turns out, as the years have passed, my dizziness has subsided for much longer periods of time.  My pain is more manageable. But at my worst, I wouldn’t have believed that was possible.  I do understand why people choose to take their lives. I truly get it. And I keep those like me, living in chronic pain, and those struggling with depression, in my prayers.

Please keep an eye on those around you, both friends and those who are mere acquaintances. Please speak up if something seems wrong.

https://afsp.org/about-suicide/risk-factors-and-warning-signs/

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I. Just. Ate. Gluten.

For all of my gluten-free friends out there, do you ever have a dream in which you accidentally eat gluten? I have one of these dreams every few months. In the dream, I realize a split second too late that I have  mistakenly swallowed something containing gluten.  Then comes the dread of knowing that I will soon be very sick.

Well, this dream became my reality last month. It only happens to me on rare occasions now. I’m an old pro at the gluten-free thing. And 99.9% of the time, it comes from cross contamination so I get to play the: “What did I eat that could have made me sick?” game. I would prefer this game any day over realizing that I just ate gluten. Anticipation is worse than wondering.

My husband, who loathes celery (Seriously, it is way more than just a dislike.) left a few pieces of celery in his salad bowl at dinner. Without thinking, I swiped a piece of celery and ate it. It was coated with a dressing that contained wheat starch. Crap.

Crap. Crap. Stinking crap. I can’t believe I just did such an incredibly stupid thing! CRAP.

I knew the second I ate it that the dressing wasn’t GF. What in the world was I thinking? Now, all you people whose bodies don’t despise gluten are thinking, “Come on, just a tiny piece of celery with a tiny bit of salad dressing, what harm could that do?” Oh, so much harm!!!!

I knew that I was going to get sick, but I didn’t know how sick. Would I be head in a trashcan sick? Or stuck on the toilet sick? Or both? Would it happen quickly? Would it take awhile? For me, the reaction is either immediate or around 9 hours after the fact. Turns out, my time came at 3 AM. To spare you all the super fun details,  let’s just say I was up for most of the night.

I would love to say this won’t happen again, but it will. That’s just a fact of life for us Celiacs.  Live and continue to learn.

Moral of my story: Don’t put celery in your husband’s salad. 

 

dessert

One of these things is not like the others…it’s gluten-free!  Thank you Matt the Miller’s Tavern!!  Best gluten-free dessert ever. 

 

 

 

 

The Price I Pay

gwl2

I am a control freak. A complete and utter control freak. I always have been. What is the worst thing for a control freak? Having a chronic disease like cervical dystonia. Those two go together like toothpaste chased with a glass of orange juice! I am so frustrated with the amount of control I have lost because of this disease. However, giving up control and listening to my body,  has made the dystonia SO much better.

For spring break, we took the girls to Great Wolf Lodge in Mason Ohio and had such a wonderful time! Three days full of absolute bliss. Luckily for me, when Neil booked, a handicapped room was what was available. This ended up being beneficial for me. A wider area made it much easier for me to maneuver around. Our room was far away from the water park, which was fine, just a longer walk.  The exercise is always good for me.

The waterpark was such fun. I stayed with our youngest most of the time while my husband and our oldest went on slides. We floated in the wave pool and lounged in the lazy river for hours. The water park was a little colder than my body would have liked, but that was ok too, and not unexpected. I listened to my body and took breaks in the family hot tub and wrapped myself in the warm towels when it was too cold for me. It was a disappointing when I had to stop playing with the girls and warm up, but it didn’t take away from my joy. I  listened to my body and only did a few slides, paid attention to my neck pain, and limited my riding so I wouldn’t become dizzy. Still, all fine with me. I was perfectly happy floating in the wave pool.

We went to the water park when it opened in the mornings. We stayed until we got hungry and then went back to our room to eat lunch. In the afternoons, we took a break from swimming doing other fun things like the arcade, mini-golf, and bowling. After an early dinner, we went back to the park and swam again until around 9 each night.

I loved our little vacation. It really was perfect. As we left for home, the weather was looking good and I told the girls that I would take them to the zoo the next day. We have not been to the zoo since last October. But something unexpected happened the next morning: I was exhausted. Exhausted as in felt like I’d been hit by a train. I was drained, and I was weakened. I felt disabled. I had to tell my girls I couldn’t take them. This was a first for me and it broke my heart. I pride myself in beating my dystonia every day and keeping control of my life. And I am always in control, right?

Wrong.

This was a new experience for me. I am used to being tired all day every day. But, I have never been exhausted to the point where I had to stop my life for not just a day, not two days, but three days. Crap.

My life with dystonia has become a series of new norms. This could have been a fluke or this could be another new norm for me. Perhaps coming back from vacations will now result in me spending 3 days on the couch. Or maybe it won’t. Now while I realize that being stuck on the couch is not at all a horrible thing in the course of a lifetime, it is still so frustrating!  And as much as I want to be in control, this spring break was a fresh reminder that I’m not.

Current score: Cervical dystonia– 5,126    Me– 1,342  

But my number will keep rising, because I’ll always keep fighting.