Read Between The Lyme
#LivingwithLyme
Struggling
It’s late, but Happy New Year, ya’ll! I really do hope your holiday season was fun and safe.
Well, back in December, I said that this fall semester at work had been very stressful. We came back in to school in August, both F2F and online, to call it a challenge is an understatement. Anyway, I made it through fall semester, and I thought, Awesome! No serious issues!
Yeah, NO. Over the winter break, I started having severe insomnia (again). This is a symptom I have dealt with the last 8 years related to Lyme, Fibro and CFS. It fluctuates, and it hadn’t been horrible for awhile. But it reared it’s ugly head, loud and clear! I also started having anxiety. I couldn’t relax at all. And yet, I was also fatigued.
Of course, it spiraled. The no sleep, anxiety, fatigue plagued me as we came back in January and plagues me still. I’ve had to trim my work schedule. Luckily, my work is understanding; otherwise, I would have to take a medical leave. I still may have to do this.
I’ve gone to my LLMD, my gyno, my other LLMD. Truly, I am trying to get things figured out. Because of my age, hormones are changing so that is some of it. But, I also have EBV active again, and obviously I’m dealing with both a Fibro and CFS flare right now.
I’ve started some antiviral drops and a hormone cream as of yesterday. I REALLY hope something helps me. I am not sure how much longer I can make it limping along this way. It’s starting to get to me in so many ways.
Do you have any recommendations on dealing with insomnia? If so, please drop a comment below.
I hope you and yours are doing well. Until next time, be well. – Belle
Thanks for Spreading the LOVE!!!
14 Comments on “Struggling”
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I recommend checking Earth Clinic which lists problems and the remedy from people who have experienced them and used different remedies. It is my to go to site. https://www.earthclinic.com/ailments.html#L
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Thank you! I will check it out. 🙂
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I’ve been an insomniac since I was about 15, I am now 35. It’s a struggle, everything I’d harder to deal with when you have had no sleep. I am now taking a low dose anti depressant called Amitriptyline, not for sleep but for something else. They do knock me out though, just be wary they can make you feel sluggish the day after but only for short while. Hope you find some relief
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It has been years since I’ve had bad insomnia, but now what helps, usually, is for me to lie down with the lights off, and just meditate in bed, not worrying whether I fall asleep or not.
But I have had to set up a whole lot of stuff before that, like not checking phone/email/blog nor drinking tea starting around 7pm, and turning off my main light at about 8, turning off all of the surge protectors so that nothing is on stand-by in my room, and putting up black-out blinds (I always memorize my place so that I can navigate in the dark at night, if I have to get up, for instance, and put a night-light with an on/off switch in the bathroom), and I also have had a notepad and pencil by my bed for years, to write down all my thoughts before I go to bed (and my To-Do and ideas notebooks right there, too) since I am guaranteed to think of ideas and errands as soon as I close my eyes. Then I also started just taking 5 minutes to worry, before getting into bed.
Now, I can generally get to sleep soon after getting into my sleep clothes and into the bed. But it has taken years of building the habits, if that makes sense?
Before that, I used to get up and do my Tai Chi in the dark until I felt tired enough to try to get to sleep again.
hope this helps a bit,
Shira
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Hi Shira, thank you for letting me know about your routine! I do have it really dark in our bedroom and like you, I can get around fine in the dark. I really like your idea about the notebook though. I’m going to try this. And I’ve just recently started not using any devices about 30 minutes before bed and I think that’s helped a little? The past 2 nights I’ve slept from about 10-4 and it’s been a blessing. Hoping this better jag continues. Again, thank you very much for all of the great tips. I’m on it! Take care!
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Hey, I hope it helps, and I am sending you, if you want, Safe Soothing Sleep Thoughts,
Rest up and Stay Safe,
-S. Dest.
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I’ve wrestled with insomnia most of my life, so I completely empathize with what you’re going through. I remember struggling with going to sleep even as a child. When I became a teacher, I could not turn my mind off at the end of the day. I replayed situations from the day in my mind and thought about how best to help struggling students. It became a vicious cycle as I eventually wore down over the weeks until I got sick.
I realize that some of the things I did aren’t practical for many, but I came to the realization if I didn’t do something, I would eventually have a heart attack or a nervous breakdown. Here’s what I did:
1. Retired at age 57. Fortunately, my wife and I had planned wisely, and we were able to do this. I had intended to go until I was 60, but I got pneumonia one year and the periods of sickness became more prolonged. I had to do something.
2. I started taking better care of myself. I ate better, went to the gym (lost 80 pounds), and got my life in balance. When the stress went away, my sleep improved. Since Covid, I’ve replaced the gym by walking 3-4 miles each day.
3. Took a sleeping pill each night. I have mixed feeling about this and any long-term damage I may be doing to my health, but it helps me sleep. It is a bit of a trade-off. When I don’t take the pill, I don’t sleep nearly as well.
4. I only drink coffee in the morning, and I’ve given up soda completely. Cutting out a lot of caffeine from my life has helped.
5. I read in bed until my eyes get heavy. Some nights I keep reading for a while because I don’t feel tired. I got to sleep when my body tells me it’s time. I used to sleep for an hour or two and wake up, unable to fall back to sleep. That still happens on occasion but not regularly.
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Hi Pete,thanks so much for your reply! I do think some of what’s going on is anxiety. I’ve never really had an issue with it before, but I think with the way things are at work- I’m a teacher as well-it’t getting to me. Trying to teach F2F and remote is just not feasible and students and staff are really struggling. We’re almost to spring break which is great but there are 10 weeks left when we return and I’m not sure how we’re all going to make it. We will of course, but I sincerely think this has been my hardest year of 20 as a teacher.
Good on you for retiring! Teaching can be so wonderful but it’s also very taxing mentally and physically! I’m hoping to get in another decade but if not, then so be it. All of your recommendations for better sleep are appreciated. I also take a sleeping pill. Sometimes, I don’t take it during the summer because I can do without. But right now, I’m on my full dose and sometimes that doesn’t seem to phase me LOL
I’m glad I’ve found your blog! Have a great evening!
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We live in California. All of the teachers in our county who want it have gotten one or two doses of the vaccine. Some schools here have recently reopened. Since I’m no longer in the pipeline, I don’t know how they are coping. I see kids being picked up in the morning on my walks, so perhaps they take half of the kids in the morning and the other half in the afternoon? I have to imagine it’s a pretty impossible situation.
Glad to have found your blog, too. Much luck to you the rest of your school year.
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Belle, miracarroll here, fellow chronic Lymie (and Texas transplant). I can only imagine how challenging it’s been to teach through the pandemic. Thank you for hanging in their for our children!
I’m so sorry you’ve been struggling with insomnia. I have an unusual idea that might be helpful.
Sleep disturbance has been part of my 10-year expedition with chronic Lyme, but not classic insomnia. I fall asleep well (as I resist going to bed at night), but I became less and less able to sleep soundly or longer than 6 hours at a time. I just lived with that until frequent leg cramps started waking me up almost every morning BEFORE 6 hours had passed. My muscles would be at a point where I had to stand up and put weight on my legs to turn off the spasms–going back to bed wasn’t an option.
I mentioned this to my doctor (not an LLMD) and she suggested low dose amitriptyline (I’d already rejected gabapentin because it knocks me out and results in a drowsy hangover). I’d never heard of using this tried-and-true old antidepressant (Elavil) for muscle spasms, but felt safe trying it.
Low and behold, not only did it stop those disruptive leg cramps, it had unexpected beneficial side effects. Even though it doesn’t make me sleepy or knock me out, I sleep much more deeply now. Sometimes I’ll sleep through 6 hours without getting up at all, unheard of before. It also significantly decreased my daily pain. I wanted to take the least amount possible, so started at 25 mg at bedtime, then after about a month cut back to 10 mg at bedtime.
I’m treating my chronic Lyme and coinfections with comprehensive herbal therapy, but also use pharmaceuticals sparingly as necessary. I’ve been taking amitriptyline for 2 1/2 months now and feel very good about it. Negative side effects are few and manageable.
Just an idea to run by your doctor. May you feel better soon!
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Hi there! Ugh. Sleep issues suck, right?!? I go through jags and this is a bad one. I definitely will ask my doctor about the amitriptyline! I take Lunesta right now and it’s just not working great anymore.
You’ve been dealing with chronic Lyme for awhile. Have you improved at all? I’m in year 8, and things are better. At first, I could barely function and treated with both antibiotics and herbals. The last few years have been better, but there always seems to be a few symptoms at a time that come in cycles like the insomnia, fatigue, joint pain.
I really, really appreciate you telling me some of what’s worked for you. Also, thanks for the article links! Hope you are doing well right now.
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I’ve had Lyme DISEASE for almost 10 years. Didn’t find out until about 3 ½ years ago. I began to improve with comprehensive herbal therapy around 4 months in when I started taking high quality, pure chlorella. Over many months it cleared my brain fog. The improvements I gained in the first 18 months of herbal therapy would be worth the effort even if it stopped there. But I continue to slowly improve with 3 ½ years of therapy, even though another infection with Bartonella set me back in the first half of 2020.
I still have symptoms. Most notable are lack of stamina, Post Exertional Malaise (PEM) and joint pain. But I try to focus on the fact that I have good energy when I wake up in the morning, and can pursue my work and interests all day, as long as I have control of my schedule and respect what my body is telling me. And take my herbs, exercise gently and follow my diet. So I FEEL much better, and many days are like I’m not sick. When I get PEM, even though I feel like I’ve been run over by a truck and MUST SLEEP NOW, it lasts hours instead of days.
The core of my protocol is the Vital Plan Restore Kit.
Restore Kit | Dr. Bill Rawls’ Herbal Protocol ~ Simply Powerful – Vital Plan
Like so many Lymies, I take a number of additional herbs and use pharmaceuticals for symptoms I can’t live with (Claritin-D for allergies and the amitriptyline).
I haven’t suffered as much from my sleep issues, probably because I refuse to give up coffee entirely. I have one good, strong cup every day. 😊
I hope you find the answer(s) you need for your current jag. Too little sleep sucks indeed!
❤ ❤ ❤
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I’m glad things are improving for you! I’m much the same. I had different symptoms for about 4 years, going to different doctors who said nothing was wrong. Finally a doctor looked for and found the Lyme (no Lyme in Texas-yeah, right). So, I had quite an infection going by then plus about 3 reactivated viruses. Still dealing with EBV off and on. Where do you get the chlorella? I still have memory issues and sometimes, processing issues. I’m really glad you’ve gained ground on healing!
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Thank you! Healing Lyme certainly seems to be a non-linear process Yeah, the. “no Lyme in Texas” assertion is still shockingly prevalent. You’d think they’d realize that at the very least one might pick it up somewhere else. But it’s no secret it’s here, too. I remember reading about a study done at a conference center near Austin and all the infected ticks they trapped (with dry ice as bait) where people commonly sat around outside.
Statistically, we’re all probably dealing with EBV too, once Lyme takes hold. Yippee!
The purity of chlorella is of the utmost importance (she learned by trying the contaminated stuff). I’m getting my great results with Vital Plan Pure Chlorella. It is truly a Gift from God and Nature.
https://store.vitalplan.com/products/pure-chlorella
❤ ❤ ❤
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