Sleep, Perchance to….?

Hi all, these past few weeks, I’ve been having more issues than usual with sleep. Like getting enough of it. Lyme affects the brain, Lyme encephalopathy, we call it Lyme brain for giggles, and it messes with the brain and the central nervous system. In my case, memory, especially short-term memory, and sleep cycles are giving me hell right now. Since the time went forward at the beginning of march, and we do this again, why? sleeping has been choppy. Also, a few weeks ago, I had to go without one of my sleep aids for about 10 days because the insurance company had to reauthorize it or such. Don’t even get me started on that little fiasco.

 

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image via http://www.linkedin.com  

So, I can go for days where I sleep well, you know, getting in those 8-10 hours of pure bliss. But then things can go array very quickly. Example. Last week due to disasterous flooding in our city, schools were closed all week. Free for all sleeping. No alarms. I tried my best to stay on schedule. Sunday, I forced myself to rise at 5 a.m. the usual work time. Then, I went to bed about 7:30 p.m.! Anyhoo, this is getting boring; moving on. Tuesday night I woke up at 2 a.m. nauseated. Headache. I got up to take something for my tummy and it was all downhill from there. I tossed and turned until my sickly sweet toned alarm sounded. I felt sick all day. It was terrible. Home, chores, rest. Then, I couldn’t sleep. Ugh! Double Ugh! I guess I finally drifted off about 8:45 p.m. Let’s just say I didn’t want to wake up at 3:45 this morning, yet, hello!

I do take some sleeping medications. Believe me, it doesn’t make me happy to take them but it is a necessity. I have to. Before I was diagnosed, sleeping was at best a few hours at a time. Without meds, I wake up every few hours, usually due to joint pain. Without meds, I wasn’t able to get any real deep sleep, and it was a killer. Not sleeping well exacerbates all other symptoms. Anyway, I am hoping that I can get a solid night’s sleep here as soon as possible. Yesterday and today I’m running on fumes. I can’t concentrate; I can’t think. It ain’t good.

If you want to know more about Lyme and how it affects central nervous system (CNS), causing neurologic and psychiatric symptoms, check out a fantastic resource at Neuro-Lyme. It is a great website with tons of information that is also backed by research.

I hope today is a good one in your world. Until next time – B

Fatigue, I Hardly Knew Ye

I really never knew what “fatigue” was until I contracted Lyme disease. Honestly, I cannot even think of a useful metaphor to describe real life altering fatigue. I could say it feels like cement blocks are tied to your feet, but that truly only tells half the story. I could say it feels like you are stuck in quicksand and cannot move, but again, only a slice of the true experience. True fatigue cannot be explained easily to those who have never experienced it for any length of time. Maybe imagine if you will how you have felt at your MOST TIRED. Where you cannot even move. And then, try imagining experienceing this daily for months and even years. Fatigue encompasses everything: the physical, the mental, and the emotional. Not one aspect of being a human is left out from the fangs of fatigue.

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I know what tired means, and I am sure you all do too. And sometimes, being tired is a good thing. It can mean that you had a productive and busy day. I remember when I was a kid, I would be tired from running around all over outside all day. Having dinner, a bath and then falling right to sleep conjures a happy memory. But fatigue? Real fatigue? I never knew ye before this. Now, I can pinpoint the ebbs and flows as accurately as a Richter scale.

Since before being diagnosed with Lyme in March 2013, I would suffer phases of fatigue. It was cyclical and so I attributed it, during those times, as just pushing myself too hard, taking on too many projects, doing too many activities. It would linger for a bit and then disappear. Gone are those care-free days. Not anymore. The fatigue has latched on and for the past few years, I have only really experienced varying degrees of fatigue. But it all boils down to the same thing: I’m too exhausted to do much of anything.

I completely understand that people who have not experienced severe fatigue struggle in trying to relate. I did as well in my Pre-Lyme life. But fatigue is not being tired. If I am tired, I sleep. I sleep and then feel rested and ready to go. With fatigue, not so fast. I can be soooo wiped out and yet. When I climb into bed, I may not be able to sleep. I go to bed tired and wake-up tired. During February, it was even worse. I could barely get up and go to work. Some days I just didn’t make it.

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Never in my previous life had I spent a whole entire day in bed because I was “tired.” Now, that happens periodically. There have been several weekends this spring where I only manage to get out of bed to use the restroom and maybe to eat. Even eating can feel like an overwhelming burden sometimes. For a few weeks this past February, I would be so fatigued, I woulod actually feel sick to my stomach if i had to move around at all. Now that is some “sh*t just got real” stuff.

And yes, my doctors and I have run the gambit as far as making sure nothing else besides Lyme is causing this issue. Regularly, my doctors check my vitamin B and D levels. I give myself shots of B as well as Glutathione (helps the body make energy) on a weekly basis. I have cut almost all sugar out of my diet (not all but a lot!), I only drink one cup of coffee a day (usually!) and I steer away from caffeine the rest of the day. With help from medication, I can in fact sleep a solid 8 hours without waking up with joint pain during the night like I was doing before treatment.

Still. The fatigue hangs on. Being so tired makes it hard to concentrate, hard to be productive, hard to communicate. Sometimes, I just try to stay away from people because it is so exhausting. Sometimes, merely watching television is an overwhelming activity. Sometimes, I feel like I am looking from the outside in on myself and I wonder, WTH?

One story that is actually very helpful in communicating fatigue to “normal” people is the Spoon Theory written by Christine Miserandino @ www.butyoudontlooksick.com  This anecdote has helped me as well as some of my family and friends to understand in a relatable way.

Luckily, right now, I am on an upswing (if you will) as far as energy is concerned. Now, let’s not get crazy – this means that I can basically get through the day at work (a big deal!) and then rest in the evenings and on the weekends. I am not choosy; I will take whatever improvement I can get at this point.

I hope this post finds you healthy and happy, my friends. Until we meet again – Belle

 

 

 

Stop Making Plans

So here we are, a Thursday afternoon. Another day of rain. Another day of school closure. Yes, you are correct. We live in the Houston area. Our little own piece of paradise or the “mud pit” as my HB calls it is located outside of the metro area and just west enough to avoid the horrible and devastating flooding that has been happening.

With all of that in mind, my own small world is truly not of any concern nor should it be.

And yet, I will share. Yesterday, one of my friends, let’s refer to her as WF, texted and invited us to meet her and her husband for dinner. My HB was gone to get groceries and run errands so we instead decided this evening would work better. OK. Cool.

Except that, and I know this very well, often, because of my symptoms, we have to cancel plans. My friends know this as well. The day started with my stomach in turmoil. Headache. It rained for several hours this morning. Joy. I took anti-nausea meds and lay back down for a few hours. Back up about 2 p.m. I went outside with the dogs and got a bit of fresh air. Back inside to do laundry, mopping, and such well, you know, “mud pit.” I consumed a few crackers with almond butter. Then, the nausea returned. The bandage is to take the meds…and I have been doing this now for a few months. Instead, I drank some alka-selzer gold – no aspirin – which can help a bit.

Still no relief. The only way to describe what it is like to a non-lymie is it feels like the flu. Headache accompanied by a nauseated tummy with a possible side of indigestion. Lots of fun. A perfect situation to go out to eat at a restaurant. Yeah, not so much.

The conclusion? We had to cancel. My HB kept asking me if I just wanted to go and have drinks, if I wanted to go without him. I know he meant well, but feeling bad is feeling bad. In fact, he’s cooking up some vegetables right now and the smell is making me nauseated. Please don’t tell him.

Anyway, to make this long story longer, when I told my HB that I was feeling yucky and that I couldn’t make it, he said, “Really, you just shouldn’t make any plans. You always cancel.”  Wow. OK. Yes, there is a lot of truth in this statement. And honestly  recognizing that truth is what grabbed and twisted my heart. I could only reply, “You are right.”

Still. While I do know that breaking plans is disappointing not just for me but for everyone involved, I just shouldn’t do it at all? Then what? I can barely keep up socially at all with my friends and family. I miss more functions than I can attend, that’s for sure. But, I don’t know. Anyway, I’m back in bed now, trying desperately not to be bummed out about it all but it’s pretty much not working.

I short change everyone in my life. I realize that yes, I am sick, but disappointing so many other people surely has taken its toll on me as a person. I feel less than. Not all of the time but definitely right now. My friends were gracious as always about our cancellation. But for me? My heart still feels twisted up.

Be good and safe, my people. -B

Lyme Takes a Backseat

Hi there friends, it’s been a little while! These past few months have been a real challenge but I think I’m on the upswing at this point. Spring Break seemed to do a world of good for me overall. I was able to get out and do things with people, yes, REAL people, and that made for a great time. I was able to push Lyme to the back burner for a bit. It was much needed nourishment for mind and soul.

So what did I get to do during our break from academia? Funny you should ask! I made a trip to the south of here to one of what I consider to be my hometown on the Texas Gulf Coast. One of my dearest friends was back home (Texas) from Seattle visiting her family , so I traveled a few hours from here to go and spend some time with her and her family as well as with one of my brothers and his family. I was a little worried about the trip; I had been having severe fatigue for weeks before this. I was able to stay a few days, and it was great fun. Mostly, I hung out with my pal, MM, and her son, and her extended family, all of whom I have known for more than 20 years. We played games, talked, sat outside (the weather in fact was very much perfect and no mosquitos!), and ate yummy food. I also got to spend time with my brother and his family. It wasn’t a long trip, but it was well worth it.

Mid-week of break I was at home doing a few much neglected chores. You know the ones. Dusting, organizing, etc. And I was able to rest when I needed to so this made it possible for me to complete some things I just couldn’t and can’t do while working. For the most part, the weather was pretty nice! Sometimes, during Spring Break, it rains all week, but this year, the weather was perfecto. Also, our almost-baseball-team of pups received baths, nail trimmings, and haircuts!

Then there was a last minute, week end trip to the ranch of my pal MM’s brother. We all met up, her family and me and my Better Half (BH), out in the country, and I mean country as in no cell service. It was totally awesome. There were about 14 of us, kids and adults, and lots of shenanigans. Some activities included, skeet shooting, trampolining, adult beverage drinking, drone flying, and skunk hunting. And one mean game of Cards Against Humanity! All in all it was definitely an adventurous trip.

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South Texas Ranch

Honestly, I think I did more socially during this break than I had the previous 3 months combined. Did I get tired out? Yep, sure did. But it certainly did my heart good to be able to do some things and be with people I love. Luckily, not many of my symptoms reared their ugly heads during too much of the break. Mostly, I savored each moment and gave thanks for everything I was able to do and for all of the amazing people in my life. *cue nostalgic music

I hope this finds you well and happy. Peace to you and yours -B