By noon I’ve only been awake less than an hour. After hurrying to take all my meds I begin my physical inventory. Normally the first thing I do when I wake up any day is make sure I’m actually alive. Normally the pain, neuropathy, nausea, headache, fever or chills let me know. But there are days I wake up and if I don’t feel pain I have a fleeting moment of panic that I died during the night. It sounds funny, but it’s not. It says a lot about someone’s quality of life when they only know they’re alive if they feel pain.
I actually feel pretty good today for such a rainy day. My back is bothering me. Sitting at the laptop the way I am is pulling on it right now. In about 5 minutes I’ll return to a laying position, typing from there. That will last about 10 or 15 minutes before numbness sets in through my hands and arms. I then need to sit back up to keep typing. There is no comfortable position, no matter how good a day it is.
I have a lot of joint pain this morning, probably from all the rain. My knuckles and wrists hurt. It reminds me of being a kid when I’d do something stupid and fall down hard. Nothing would break, I’d get up and go on playing, but the dull throbbing pain left from the fall would stay with me for the rest of the day. Most days my hands and fingers feel like that all of the time. Today only one knee and one ankle have joined the “arthritis bandwagon”.
My nerve pain, which is the worst of all my pains, is about a 2-4 so far today. The nerve pain increases as the day progresses, especially if I move at all. Since I don’t accept staying in bed 24 hours a day and not moving an option, it’s a given the nerve pain will slowly creep up during the day.
It’s now 1pm, and I’ve just taken a pain killer and 3 Advil (now 31 pills today). I’ve learned you have to get a head start on the pain before it gets a chance to really take hold of you.
Just so we’re keeping track. I’ve officially been out of bed 90 minutes, in that time I’ve now taken 31 pills, 3 drops of liquid medicine, 2 scoops of powdered medicine, and my Emergen-C. I haven’t even finished all of my morning meds yet.
Now that I’ve been up and moving for close to an hour, my body is starting to hurt. My pain levels have all doubled since waking up, and I just got a really bad headache. Not my all-the-time Babesia headache, but an all over one. I think my body is ready for some food. Just a few more minutes until I can eat (got to wait a full hour after taking some of my meds), and then hopefully the headache will go away.
This point in the day is an all too familiar “decision point”. Regardless of how I feel when I first wake up, you can almost guarantee an hour later things will be totally different. Perhaps I wake up in excruciating pain, roll over, grab pain reliever and start my day that way. So an hour later, I might have a little more mobility to do something with my day. But on days like today it’s the opposite. I woke up feeling better than I normally do. Had I stayed in bed this past hour and done nothing, perhaps I’d still feel better? That brings me back to quality of life. Finding a balance between pain and life is not an easy task. Days like today, an hour after waking up feeling better than normal, I now am feeling very tired, my pain levels have gone up, and a feeling of fatigue comes over me from head to toe making me just want to lay down and close my eyes. But if I sleep all day, I’ll be back to where I was a year ago when I couldn’t sleep at all at night, but would nap all day. Now it’s rare that I can actually nap, though most of my days it’s all I want to do. When I try to nap during the day I often have anxiety attacks just before falling asleep, and then I’m wide awake, full of fatigue, and feeling hopeless about getting any sleep.
My illness is not the same from day to day. If I had some other disease that was more straight forward, my days would be more straight forward. But I have a disease that affects every part of my body, every organ, it basically has free reign of my body. So what might make me feel better today could send me to bed for 3 days tomorrow. There’s no “user’s manual” for Lyme disease, because trying to pin down this disease is like pinning Jell-O to a tree. Basically all you end up doing is wasting perfectly good Jell-O!
2:00pm and I’m just eating. Starting to have temperature intolerance. Hot, then cold. Not hot flashes and cold sweats, so it’s not as bad as it was a few weeks ago, but all of that fun has started. After I eat I have to flush my PICC line. On days I don’t infuse I have to flush the line with saline and heparin twice a day to keep it clean and not get blood clots. I have a hard time remembering this twice a day after so many months of infusing daily. This is why I have to keep such detailed notes so I know what I have and haven’t done. I spend a lot of time looking at what I’ve written down, trying to remember to write everything down and keeping notes hour by hour. It’s very time consuming.
Pain is definitely increasing, I’d say the joint pain is at a 6 and the nerve pain is a 5-6. I have a pain in my ribs today that keeps taking my breath away. It’s a new thing. That’s the thing with Lyme, every day changes. I have to go out in the pouring rain shortly for blood work and to go to the post office. The amount of work to get dressed (while I’ll only put on sweats) and shoes is already making me feel tired. Shoes hurt. They hurt to put on, they hurt to wear. They make my feet burn. I miss the summer and being able to wear comfy things and not have to worry about cold and rain getting my little piggy’s.
There’s a huge storm today passing through the area, it’s changing the barometric pressure, cold rain, all the fun stuff. It’s all wreaking havoc on my body, as so often happens when the weather changes. My right fingers are getting to the point where typing is becoming difficult. Holding a pen is difficult, as I tried to update my symptom journal.
3 hours since I woke up and everything has drastically changed in how I feel. When I woke up I’d say I felt around a 6-7 on a scale of 1 to 10. (10 being how I felt before I got so sick 18 months ago.) Now I’m at about a 4. My toes even hurt right now. I never knew arthritis in your toes could be such a problem, but you don’t realize how much you need your toes until they don’t want to work. (I do not suggest cutting your toes off to see what I mean.)
This concludes the second segment in today’s “Day in the life of Lyme”. Stay tuned for what happens between 3 and 6. I can already tell you there’s going to be a juicy bathroom story (no pun intended) in your future.
To be taken to all 5 segments of my “Day In Life Of Lyme” visit http://lymebites.com/blog/category/day-in-life-of-lyme/. This is the 2nd one, the next 3 will be published within the next 24 hours.