My Bed is my Bestie

Totally sad, but true. Since Saturday, not much has changed. My bed is my Bestie. I don’t even know how many hours I’ve spent in bed feeling not so bueno. Yesterday was more of sleeping, a few loads of laundry, reading, resting. I did manage to get out of the house, only because I had to, and so I drove around a bit near here and took some pictures. It was the Big Event this weekend, at least for moi.

01.10.16Cows
Winter sky of blue

This time of year it the most beautiful to me. I think it has to do with the crystal blue expansive skies, the golden colors mixed with grey and brown. It’s cold. But not the tepid cold. More of a biting cold. The kind of cold that makes your eyes sting. No wind though. Just pure perfection. The beaches are also my favorite this time of year. The ocean stirs no matter what is happening on shore. And empty, the beaches are empty of people which is total bliss. Only the birds and the sea creatures are scurrying around. Hearing the waves lap, the seagulls squabble, feeling the rigid breeze is all inspiring.

 

But I didn’t go to the beach. The nearest one is about an hour plus away not even considering traffic, and hey, I can barely make it to the front door. No can do. This morning was just more of the same. Headache, stomachache, body pain. My alarm screamed at 5 a.m. and so did all of my body. This Monday was so not happening.

Winterfield.jpg
January 2016

 

It’s disappointing to feel terrible enough that I have to take a sick day. I know that is what they are for, but in the past, I would take a sick day and then feel better. Now, I take a sick day and just pray I can handle the rest of the week, whether that is 4 more days or just one. It’s frustrating. What did I do today? I ran the dishwasher, did a load of laundry, and walked out to get the mail. Otherwise, I spent the rest of the day in bed with my BFF. We snoozed, watched some t.v. and did a smidge of reading. Sounds delightful to many I’m sure. But all the while, the Lyme played in the background, the pounding headache, the sore joints, the brain fog, and the stomach issues. Constantly moving to escape the pain if on one side too long, I have 2 heating pads going. I thought about adding a 3rd but that is a little excessive and truly ridiculous. And the not knowing if the next hour or day will be better? That is the most frustrating. This unpredictability of this disease is why I am trying to do my best to just relax and enjoy the times when I do feel decent. There is no “storing” up feeling good nor energy. Both things come and go, flitting in and out like a hummingbirds. So quickly, I can be at about 80% then, bam, 20%. So it goes.

Hopefully, though, now that I rested today and I was good about not being too pissed at myself, I can go to work tomorrow and be productive. Sorry BFF, you’ll have to handle the rest of the week alone.

Until next time, my people, peace and joy to you and yours – B

 

 

Talk About Zombies

The fatigue is back, and it is taking absolutely no prisoners. If you recall, my LLMD had me take a break from the antibiotics for about 7-8 weeks, recently. I’m really not sure why except that I could use one after 27 months on abx. For the first 3-4 weeks, all was good. Headaches let up, nausea was less. I was hopeful. Then at the beginning of September, I caught a cold. Pretty much all hell broke lose.

I had the cold a solid week. Then I still had sinus, coughing, lingering everything. And the Zombie fatigue came on, full throttle. Ah, the misery! And the achy joints and just body aches. I was convinced also that the EBV was activated again with the fatigue being so terrible. It took everything I had to get to work, and then back to bed every day. I spent the weekends in bed. When I get into my doctor at the end of the month, she said upper respiratory infection caught me. Let’s check for the EBV. I assumed, and I had a list – that we would also check Lyme, Mycoplasma, HHV-6, thyroid, etc. since I told her I was having such severe fatigue. But,nope. EBV came back quiet, and she had actually tested for nothing else. And my follow-up? Yeah, in December. December?!?! Frustrated, I emailed my doctor about my concerns, and now I am going back in a couple of weeks. I’m not sure what will be different this time around, but it’s worth a shot. My doctor did not have a suggestion for the fatigue other than she still thinks it is caused by Lyme. Honestly, I don’t know. When I was at my sickest, right before being diagnosed, I did have this kind of fatigue so it is very plausible. I just worry that now that I have been dealing with the Lyme for so long, is something else rearing its ugly head?

In about 3 weeks, I am actually also going to see a new LLMD. I have been scouting about for someone else to add to the “team.” I love my doc, but I feel like we never have enough time to address all the issues I am having. Lyme is so complex once it is in the chronic stage, and she really just doesn’t have time for the treatment I need right now. I am hoping this new doctor works out; I will still see my LLMD here as well. The new doctor is about 5 hours away so it’s not like I can jump in a car and go see her anytime I want to. I have heard she likes to try to treat Lyme as a whole rather than in pieces. FIngers and toes are crossed that she can help me out.

But this fatigue needs to go! I’m taking iron and vitamin B hoping that helps some. We were supposed to go out of town this long weekend, but I actually got really sick Friday afternoon, and we couldn’t, or rather I, couldn’t manage the trip. It was disappointing. My husband and I were looking forward to going to the beach and getting out of the house. Instead, I was in bed Friday afternoon through yesterday mid-morning. I think I may have actually had the flu on top of the Lyme issues. I’m feeling a little more like myself today.

I’ve never experienced fatigue like the Lyme fatigue that comes on. When I used to say, “I’m tired” I meant that I had worn myself out doing most likely something physical. But once rested, I was back to it, taking my energy for granted. Now, I never feel rested. I sleep, I rest, I don’t do much, and I still feel so exhausted; it is a chore to think about getting up to brush my teeth. The fatigue just adds to the memory issues and the brain fog. Sometimes, I just want to lie in bed, in the dark, with no sensory anything because sometimes this is the only way I can think straight. Does anyone else need to do this? Just go somewhere quiet and lay down?

I know it is overused, but this fatigue really does make me feel like a zombie. I seem to move in and out of each day half-awake, in a weird trance. It’s hard to explain. Outside of work is difficult enough but I can lay down whenever I want. Work is a whole other challenge. I just try not to think about getting through the week ahead but instead focus on getting through the day. This strategy helps I think. And no matter how much I rest each day, by the next day, the fatigue is compounded. But I want to work. I want to do things. I don’t want to be a Zombie. None of use do!

Happy fall, peeps – B

Fall in the mountains