Foggy Boredom

You know what I hate most about brain fog? The boredom. The boredom that comes from an inability to do the things I love to do. When the brain fog is bad, when I can’t think through the cotton wool wrapping my mind, I can’t read, I can’t write, I can’t even truly watch television, at least not anything that stirs me. All I can do is sit here and wish my brain was working better.

So I’m bored. I’m bored because there’s nothing I enjoy that I can do. That I am capable of doing. I’m bored and I’m unhappy and I wish, wish, wish, there was something I could do about it.

And I hate it.

Overachieving Sleep Apnea

Coincidentally, this chart could also be used to measure my anger about having sleep apnea.

I was reading an article this morning about how awful sleep apnea can be, how it damages our bodies in so many ways, and included in that article was an interview with someone who has “severe” sleep apnea. I read it, and I found myself almost growling under my breath. Not at that person, not even so much at that article, but at my own body and how it has betrayed me in yet another way.

Obstructive Sleep Apnea  is a sleep disorder during which you breathe abnormally (hypopnea) or even stop breathing (apnea) during sleep. These pauses can last from seconds to minutes. It’s generally accepted that having more than five events per hour means you have OSA. Severity is measured as follows: mild, 5-15/hour; moderate, 15-30/hour; severe, more than 30/hour.

Now, back to the article. Mr. X has severe sleep apnea. He stops breathing 42 times each hour while he sleeps. And now you’re wondering why I got so angry while reading this article. Because I stop breathing 149 times per hour, that’s why.

If Mr. X has severe sleep apnea, then what on earth do I have? When I first got these results the neurologist broke it down for me like this: there are 360 seconds in an hour, I stop breathing for 149 of them. It’s almost as if I stop breathing every other second, or for half of every minute, or for half of every hour. (I was a little afraid to go to sleep the night I got that diagnosis. It’s freaky!)

Look at that chart up there. See how far off the scale I am? My former stats professor would probably like me to tell you that I’m an outlier because my results deviate markedly from the rest. (I am skewing all your results. I shouldn’t even be on your chart!) And that’s why I’m so angry this morning. Because I’m that far off the chart. Because my apnea is so severe it probably needs its own category. Because my body, once again, overachieved when it comes to illness.

Nice going, body. Next time slack off a little, okay?

 

MS Diagnosis Survey

The Multiple Sclerosis International Federation is asking about your experience with getting your MS diagnosis. Results will be published and a PDF can be emailed to anyone who participates in the survey. The survey takes less than five minutes. Take it here.

Details are All

“For the chronically ill, details are all. To cope with chronic illness means to routinely scan minute bodily processes. Attention is vigilantly focused, sometimes hour by hour, to the specifics of circumstances and events that could be potential sources of worsening. There is the daily quest for control of the known provoking agents. Enervating decisions must be made about when to initiate or terminate an activity, when to move from baseline medication to second-level drugs, and when to seek professional help. And all this occurs in the context of active lives that are filled with the same pressures, threats, vagaries, and exultations that make of normal living such a ‘blooming, buzzing confusion’ [James] Is it any wonder that exhaustion is one of the common shared experiences of chronic illness?”

–Arthur Kleinman, The Illness Narratives

Because the only thing tough enough to kick my ass is me.

Auto-immune disease. Because the only thing tough enough to kick my ass is me.

Link between Shingles & MS

From the Winter 2011 NMSS Greater New England Chapter MS Connection:

“Researchers in Taiwan have reported that people who experienced an attack of the virus-triggered herpes zoster–which usually shows up as the skin rash known as shingles–were more than three times as likely to develop MS over the next year than individuals who did not have an attack.”

2011 in review

How to start blogging again after a long absence? With a meme, of course! This comes from the Friday 5.

1. In 2011, what did you do far too many times?

   Go to the hospital for doctor visits or tests. I did this way too often before finally getting a diagnosis in early Summer. I’d love to be able to say that it’s over, but apparently chronic illness means I get a few month reprieve before the series of follow-up and maintenance appointments begin.
   

2. In 2011, what did you rediscover?

   The unlimited support of my family and friends. The simple joy of hanging out and talking about a television show with my husband. My enjoyment of writing.
   

3. What 2011 event will you still be paying for in 2012?

   You know, I don’t really know how to answer this. Paying for in a monetary way? In an emotional way? A van hit my house and caused some damage that will be repaired in the Spring, but I won’t be paying for any of that. There’s nothing I regret emotionally that I’ll be paying for. The only thing I can really think of is how my MS diagnosis means that from here on out I will always be paying for expensive medications. (Let’s hear it for good insurance coverage that makes copaxone only $50/month insted of $4k.)
   

4. In what unexpected place did you find a friend in 2011?

   MS Support groups and conferences. I won’t say they are best friends or even really more than acquaintances, but it was so unbelievably nice to talk to people who get it. Not only do they get it, they live it, every single day. There was no having to pause the conversation to explain the weird symptom, there was just a lot of “hey, you know that thing…?” and someone replying with an emphatic “YES!” That’s something I won’t forget and it’s why I’m going to continue to attend these types of events.
   

5. As 2011 comes to a close, what in your life is trending upward toward a much better 2012?

   I’m getting better at controlling my symptoms, following up with doctors, taking medications, doing all sorts of exercises, relaxation techniques, and therapy. Hopefully that will get me to a place in 2012 where I’m better able to participate in life the way I want to.

In a nutshell, 2011 was full of stress. First the stress of still not knowing what was wrong with me, then the stress of having Multiple Sclerosis. In between was that brief and wonderful time of relief when I was happy to finally know what was wrong so that I could start treatment. I’d like to regain that feeling, at least part of it. and I know I can do that by continuing to take control of my illness and getting back to the things I enjoy.

When it comes to pain, I don’t know how to answer.

“Where does it hurt?” chronicillnesscat” I don’t understand the question.”

The question I can’t answer is “what’s your pain level?”

Where?

You want the pain level for my PHN? My legs? That nagging thing in my shoulder? How about my jaw? Or should I just average it out over my whole body?

It’d be easier if the nurse just handed me a diagram of my body and some crayons so I could color-code and maybe draw some lightning bolts and frowny faces over the spots where it really hurts.

Get well soon!

“I will never [chronicillnesscat] ‘get well soon’”

And, you know, that’s okay. Really. It isn’t great and it certainly isn’t what I wished for, but I’m dealing. And part of what helps me deal is people around me understanding that and saying something like “I hope you get through this flare quickly and easily” instead of “get well soon.”

How do you know when to call your doctor?

Serious symptoms now normal. [Chronic Illness Cat] What warrants doctor visit? (Source)

I didn’t write this Chronic Illness Cat submission, but I could have. Every three months a nurse from my specialty pharmaceutical provider calls to ask about my chronic illness. She has a list of questions about symptoms I may have and I generally answer them by saying “yes, but it’s nothing new.” If someone isn’t asking me about them I’m generally not paying attention to them, because these symptoms are my new normal.

So how do I know when something warrants medical treatment? How much pain is too much? How many extra muscle spasms? How much fatigue?

The answer for me is I don’t know, and I probably won’t know, so I have to place my trust in someone else. That someone for me is my MS Nurse. She’s such a valuable part of my team, maybe one of the most valuable parts. She listens to my concerns, gives me information, and, most importantly, tells me when something requires an appointment with my neurologist. I couldn’t do it without her.