Today was not one of my better days. Get out that cheese for the whine!
I hate complaining because I know it could be worse.
This morning I woke up about 5:00 am because my joints were hurting. My ankles, wrists and fingers ached, but especially my ankles.
The worst thing about waking up at 5:00 am as opposed to say, 2:00 am, is that it’s close enough to the actual time you’re supposed to get up that you can’t really get back to sleep. So, I got up, ran a very, very hot bath, and soaked my joints. It did help. I went back to bed, turning on the radio to listen to NPR. I knew I couldn’t go back to sleep, but I wasn’t ready to wake up either.
All day today my joints ached. Thank God my fingers don’t hurt as bad as my ankles, but still, I was having some trouble typing. I’m also still feeling easily tired. I seem to start out okay in the morning, but somewhere around mid afternoon it feels like I’ve been drugged and it’s all I can do to make it to the magical hour when I can leave. By the end of the day I’m not getting much done because my concentration is horrible.
This evening I came home, ate one of my pre-cooked healthy meals, but I didn’t go for a walk. Did I mention my ankles hurt? I feel like I’m hobbling around like some little old lady.
Instead, I laid down on my bed and fell asleep to the sound of the rain outside. The entire evening was a waste.
What frustrates me is how this fatigue and joint pain can swing so drastically. Friday, for example, (the poo day) I could barely stay awake to do anything. Sunday I felt like I had some sort of new lease on life. I felt great! I had so much energy I could hardly focus on which project needed more attention – the HPS Newsletter, my dirty house, my taxes – and all I really wanted to do was something active because I felt so good.
Yesterday was a moderate fatigue. And then today we’re back to sore joints. What is up with this? I have a sneaking suspicion it has something to do with HPS because I know several other HPS’ers that have the same issues. Yet, so many don’t that I can’t say for sure. No one in a white coat will say for sure either. So I just end up feeling frustrated that my body isn’t keeping up with my schedule or my brain and beating myself up about whether it’s all in my head or it’s real. When I can’t do what I need to do I feel so guilty.
I hate complaining because I know it could be worse.
This morning I woke up about 5:00 am because my joints were hurting. My ankles, wrists and fingers ached, but especially my ankles.
The worst thing about waking up at 5:00 am as opposed to say, 2:00 am, is that it’s close enough to the actual time you’re supposed to get up that you can’t really get back to sleep. So, I got up, ran a very, very hot bath, and soaked my joints. It did help. I went back to bed, turning on the radio to listen to NPR. I knew I couldn’t go back to sleep, but I wasn’t ready to wake up either.
All day today my joints ached. Thank God my fingers don’t hurt as bad as my ankles, but still, I was having some trouble typing. I’m also still feeling easily tired. I seem to start out okay in the morning, but somewhere around mid afternoon it feels like I’ve been drugged and it’s all I can do to make it to the magical hour when I can leave. By the end of the day I’m not getting much done because my concentration is horrible.
This evening I came home, ate one of my pre-cooked healthy meals, but I didn’t go for a walk. Did I mention my ankles hurt? I feel like I’m hobbling around like some little old lady.
Instead, I laid down on my bed and fell asleep to the sound of the rain outside. The entire evening was a waste.
What frustrates me is how this fatigue and joint pain can swing so drastically. Friday, for example, (the poo day) I could barely stay awake to do anything. Sunday I felt like I had some sort of new lease on life. I felt great! I had so much energy I could hardly focus on which project needed more attention – the HPS Newsletter, my dirty house, my taxes – and all I really wanted to do was something active because I felt so good.
Yesterday was a moderate fatigue. And then today we’re back to sore joints. What is up with this? I have a sneaking suspicion it has something to do with HPS because I know several other HPS’ers that have the same issues. Yet, so many don’t that I can’t say for sure. No one in a white coat will say for sure either. So I just end up feeling frustrated that my body isn’t keeping up with my schedule or my brain and beating myself up about whether it’s all in my head or it’s real. When I can’t do what I need to do I feel so guilty.
Comments
Read your blog today, like most every day now, and boy did the lack of energy around noon-time really drag up bad memories for me from a few years back. I wonder if you might be running a low grade infection. And then there is the joint pain...Are you permitted to take other medications since your are on this drug trial? I have joint pain too that wakes me at night. My doctor gave me a script for the pain, which has helped me with not having pain when I get up. Anyway, you will be going to the NIH in a few weeks. Hang in there until there as they might pick something up in all the blood work they do to explain this. Take care of yourself.
Julie