When I started this blog a few months ago, I intended to (in part) keep track of my health; I was imagining things were moving towards healing and me feeling better. Unfortunately that has not been the case. You may have seen some posts on social media asking for prayers/good thoughts/good vibes as I’ve been dealing with some health issues, so I wanted to take a few minutes to update everyone as to what’s going on with me right now.
I started a medication that should have helped with both my fibromyalgia and my UCTD, in November. The medicine can take 2-6 months to take effect in the body. Within 3 months I felt like I was seeing a difference, and feeling better, but other symptoms had started. Unsure what was causing these symptoms, I was pulled off the Plaquinil in mid January and told to wait to take anything to treat either the fibro or UCTD until we had a full health picture.
December was when I really started to see the new symptoms causing problems. They were (and still are) affecting my life: work, physical fitness, weight, sleep patterns, ability to fulfill prior commitments. I won’t detail what was going on because it’s a little TMI. But, it was difficult to make it through work most days and I lost about 4 pounds in about 5 weeks- which to some of you sounds great, but for my frame is not normal or healthy. My PCP was not helpful and finally in late January when I saw my rheumatologist I received a referral to another specialist who could help with what I had going on. The GI has run a plethora of tests, none of which has come back conclusive to any one thing causing these ongoing symptoms; we were able to eliminate any cancer in my GI tract though, so at least there’s that. He has put me on two new medications and I’m waiting to follow up on those in April, although I’m not convinced they’ve made much of a difference. He did say he didn’t think the Plaquinil was the issue and allowed me to begin taking that again.
Coming on and off of Plaquinil has messed with my health and emotions quite a bit. I’m hoping it doesn’t take the 2-6 months to take effect because if so it’ll be April or June before I start feeling better. And if you guys don’t understand this when I hurt, then I don’t sleep, and when I don’t sleep, then I hurt more, and then I don’t sleep more, then I hurt more, etc, etc. It’s a really lovely cyclical form of torture.
On top of being unsure what all is going on with my body, I had a really bad flare on the 10th of this month. I let it go for a few days, before seeing my rheumy on the 16th. I woke up on the morning of the 10th and could not walk properly because my left foot was swollen and it hurt to put pressure on it. My assumption was that I had hurt it while working out or had slept on it wrong. I went to work the following week with it wrapped, in a walking boot left from high school, or both, trying to keep pressure off of it, hoping the swelling would go down. I convinced myself based on the area of the pain that I had a stress fracture or a bunion and started buying and using bunion pads and moleskins. When I saw my rheumatologist on Friday morning, he took a look at my foot, and gave me what may not have been great news, but did explain what was happening. I had a flare, which in some people can last weeks; I am used to flares in my back, neck, hips, knees, not my foot; but my foot was experiencing inflammation (seemingly from high levels of stress, and the switch ups on medications, and lots of tests that required prep before hand) and the joints were so inflamed it looked like my toe had slightly come out of the joint. So he pulled it over, stretched it, and gave me some medicines to help fight the inflammation and get the flare to go away… we aren’t quite there yet, and today is Tuesday….so it’s been a long few days.
Before leaving his office, he and my health coach felt the need to talk to me about my stress levels and what it was doing to my body. I was told I need to start operating under the spoon theory. This means each day when I wake up depending on how I feel I have between 5-7 spoons (some days I might have more but for now I need to operate under the assumption of so few spoons) and each activity that uses energy takes away a spoon that I can’t get back for the day. I am not allowed to borrow spoons from the previous day or the next day, not knowing how my body will feel and how many spoons I will receive the next morning when I wake up. Once my spoons are gone for the day, I am not allowed to use energy on other things, I’m done for the day. So I have to learn to prioritize. I have to learn to take care of my body. I have to learn that I cannot do all the things, all the time, for all the people.
Yesterday I tried the spoon theory for the first time. And it was really hard. I got up after not sleeping much the night before and felt like I maybe had 3 spoons, maybe more, but definitely not 7, 10, or 15. I decided to push through my day anyways, try to borrow some spoons I might not have used on Sunday, and maybe steal some from Tuesday. By about 1 pm I was done for the day. I was exhausted. I felt like I couldn’t think straight. But I had more to do. I had another class to teach, I had a class to attend, I had a meeting to play secretary at, I had tests to finish stapling and preparing for today’s test, I had emails to answer, a license renewal application to work on, a PD module to complete, a paper to write, a presentation to prepare, I needed to shower and dry my hair. So I kept borrowing spoons and hoped a quick yoga session would restore me at least one spoon…. Hint….I love yoga and it was great, but it was not enough to replenish my energy storage room of spoons. By the end of last night, I was miserable. I thankfully slept better last night than the night before and woke up feeling like I have a few more spoons today. But I know adjusting to limited amounts of spoons a day will not be easy for me. I am Type A and I want to do all the things for all the people, but I physically cannot at least for the time being.
So for now, I work on using my spoons wisely, I prioritize, and I stop when I can’t handle anymore. And for each person who has asked “what’s next” after Saturday did not end the way I expected, I don’t have the answer for you yet, right now I’m working on counting spoons….but I promise as soon as I figure it out, I’ll let you know, but I want to make sure it’s worthy of spoons before I do it.