A New Label - Health Update

She said it so casually, as if she was calling a bingo number. “I’m adding Chronic Fatigue to your list of diagnoses because you are chronically fatigued.” I didn’t even flinch. She’s not wrong. I am chronically fatigued. I thought that was part of my Fibromyalgia though. I thought I needed additional testing for Chronic Fatigue, but Chronic Fatigue and Fibromyalgia are found together so often that people are often surprised that I’ve never been diagnosed with Chronic Fatigue. As the day went on I had different reactions to the additional diagnosis. First I thought, “Well, do I get some kind of a bingo board with all my illnesses and symptoms on it? If I get bingo, will I finally get effective treatment?” A little while later I thought, “should I be devastated? Should this be difficult? The Dr said it so casually. Is this a big deal?” Maybe it’s the Chronic Fatigue talking but I can’t work up enough energy to freak out. Honestly, and this is the reaction consistently running through the day, “what difference does it make?” There’s no additional treatment. There’s no additional meds. It doesn’t change my symptoms. It won’t change how I’m treated - I don’t think. What difference does it make?

For years as I interact with others with chronic illness and research my symptoms, I’m always surprised by a couple of things. First is that I don’t have multiple illnesses. Fibromyalgia is often a secondary illness to something else. My Fibro is the lesser seen Primary Fibromyalgia, but even then secondary illnesses are very common. Four years ago I developed my first secondary illness - Myofascial Pain Syndrome. Now I've also been diagnosed with my third condition - Chronic Fatigue Syndrome. Now I fit in better to the overall chronic pain community, I guess.

Meanwhile, my Dr also gave me an order for a whole lot of blood tests. I haven’t had blood tests done in YEARS, so I’m happy to get it done. With the emergence of new symptoms and some stubborn symptoms that refuse to be treated, I’m anxious to see if there’s something we could be missing. It gives me hope that we’ll find something we can treat. Not a ton of hope, but any hope is welcome.

I wrote the above the day of my appointment, but now that’s been a few weeks. I got the results of my blood tests. My doctor still needs to go over it in more detail with me, but here’s what I know so far - my inflammation levels are extremely high. This is not surprising, though we don’t really know the cause. She recommended the anti-inflammatory diet. I looked into it and that's basically what I've been doing for the last three months. Also, it looks like I have a genetic condition where I don’t process the B vitamin folate correctly. She recommended a specific type of vitamin that should take care of this. Apparently, this is a genetic mutation that can affect as much as 40% of the population. I’ll admit though, I had a hard time understanding this when I tried to research it. It’s complicated, but I know that the specific type of vitamin I’m taking should take care of it.

There were a few other things, but nothing major. Nothing that significantly changes things for me. Unexplained, unreasonably high levels of fatigue and pain with no known cause or effective treatment. I did get a new label though (Chronic Fatigue), so maybe that’s something. 

In the meantime, God is still one the throne. He has never left me, and above all else God is still good. I will count my blessings. My blessings always out number my syndromes. 

Attitude Adjustment

I have been trying to force myself to go walks when I can. It’s hard because it hurts to move and it's still over 90 degrees outside after 9pm some nights. Yuck. Nevertheless, one night last week I forced myself to go and the girls and dog went with me. The dog is part of my motivation because we are refreshing his leash training before an upcoming group camping trip.

I’m going to be honest here - I was cranky. It’s hard to walk when you’re exhausted and in pain. It was hot, but there was a breeze that helped significantly with the heat. However, it also blew dust all over us because of where we like to walk. I was cranky. As I pushed myself to keep going, regretting that I had the long way, I complained. The complaining was echoed behind me from my girls. That was a wake up call. I really try not to do that, and I was neck deep in it tonight. Isn’t it funny how complaining is contagious? Ugh. So I suggested we fix our attitudes by counting our blessings instead of complaining. We took turns listing things for which we are thankful. Things like the dog, the new car, the dad, swimming lessons, etc… Before I realized it my oldest daughter was happily chatting about swimming lessons. My youngest was playing some kind of game with the dog where he tells her a story or something. I couldn’t catch what was going on but she was talking in his voice for the rest of the walk. The complaining had stopped and everyone was happy. It was such a great, vivid reminder of what I should already know. You want to be miserable? Complain. You want to be cranky? Complain. You want to be happy? Be grateful. Count your blessings. Our circumstances didn’t change. It was still hot and dusty. If anything it only got harder as we went, but our attitudes changed everything.

 “I’m Fine”

Why we should drop "how are you?" from casual conversation.

I have a confession - I hate the question, “How are you?” I hate it for a variety of reasons. First off is the non-specific way in which we use it. We use “how are you?” as a way of saying, “hello” or “good to see you” or “haven’t seen you in awhile.” None of those are questions, and yet we attempt to convey those ideas with a question. Awkward. So when people say, “how are you?” I often wonder if they actually want an answer to the question or if they are just saying hello.

Secondly, it’s most often used insincerely. This could really be a sub point of the first thing because it’s so closely related, but it needs to be said. Often when a person says “how are you?” they don’t want a real answer, and certainly not a long or honest one. We are supposed to answer “fine.” Anything else is an inconvenience, a burden, negative, or attention seeking even though you’re just answering a question you were asked.

Lastly, and this is what I’ve actually been thinking about today, the answer is so complicated it can’t be answered in casual conversation. A few years ago I was diagnosed with a secondary pain condition called Myofascial Pain Syndrome. Like my primary condition of fibromyalgia, no one knows what MPS is. Keep in mind it took over a year of unrelenting pain and several tests before I even got a diagnosis. Not long after the diagnosis a friend asked, “how are you?” I gave some vague, obligatory answer but they asked a more specific question about the pain I’d been experiencing for over a year. Since they were genuinely interested, I told them about my diagnosis and then started explaining Myofascial Pain Syndrome (which I’m not going to do here, but Google will happily tell you). Their reaction to the phrase “secondary pain condition” was so huge that I immediately began comforting them about my condition. I started to downplay the severity of my symptoms. I started to tell them how great my life is and I was sure it would eventually go away (it hasn’t). I talked about how much hope I had for my treatment options. My friend was so horrified at my condition that I immediately regretted talking about it and felt the need to comfort them. 

Is it any wonder I hate the question “how are you?” Even if people think they really want to know how I am, they aren’t prepared for it. It’s a lot to understand. It’s a lot to carry. Even then, there are a certain number of people that think I’m lying. They think no one could have all that going on, so I must be making it up for attention. I actually get that. I don’t appreciate being called a liar, but I understand their difficulty believing it because I have the same difficulty believing it every day. Every day I say “how can I live like this?” “This is unreasonable!” “I don’t want to do this anymore!” While certainly not everyday, there have been many times in the last few years that the pain was so constant and unrelenting that I have begged God to take me home. He says no. I’m not done here. So I trust Him because He is always good, and I continue on moment by moment.

I would love it if we stopped “how are you?” as a substitute for “Hello, good to see you” in our society. I would love it if “how are you?” was reserved for literal usage. It’s just so awkward and misleading. However, that’s not how language works. So, please remember when you are talking to someone with chronic illness that the questions “how are you?” is a difficult one. “Hello” is good. “I’m happy to see you” is nice. If you sincerely want to hear how we are doing, then please be prepared. Maybe Google the condition ahead of time. Honestly, when someone says to me, “so I Googled your condition,” I often cry. It means a lot. But that’s another story. For now, if you say “how are you?” I’m going to say, “fine” or “any day I’m out of bed is a good day!” or I’m going to ignore the question part and just say, “Hello, good to see you.” None of those are lies, and none of those will cause me years later to regret saying too much.