Just ACT Normal

So for about the past monthish, I’ve been struggling with both fatigue and a weird rash that popped up on my face and arms. Let’s just say it wasn’t fun. But, I’m back on track, the rash is gone, the fatigue hangs in, and we are moving forward into our last week of school.

Being chronically ill with Lyme disease or chronically ill with any other disease means figuring out what one and do and not do on any given day. And while working full-time, my routine is basically, go to work, come home eat and rest. Weekends are for resting. This spring, I have missed several functions due to feeling terrible. You know, like baby showers, dinners, birthday celebrations, hanging out with friends and family. Looking back on this past spring, I think I have  been at a real function maybe 3 times? Now, don’t get me wrong, I am in no way a social butterfly. But still. I definitely try not to feel guilty when I have to cancel, and I try to be good to myself, especially when I feel depressed about having such a restricted lifestyle.

While honesty is the best policy, sometimes it just works better to try and put on the Normal Act. Recently, I was able to attend a celebration. Overall, it was really nice. I also was able to see friends and family that I haven’t seen in quite awhile, so that made it even more awesome. Here’s the thing though, it wore me out. When I get into situations like these (and again, it isn’t very often), I do feel stressed out. Sometimes just talking can be an absolute chore and/or nightmare. And while yes, I am a teacher, and I have to talk a lot in my position, well, it’s hard to explain, but it is different. Worst case, as a teacher, I can wing it because I have experience. Yes, I do have conversations with my students as well, but most of the time his happens, it is usually just one on one without a ton of extra stimulus. It is easier to “act” normal and to be in control of the situation. Not so much at a party.

Sometimes, in a social situation like a party, or something involving many people, I really do my best to “act” normal, to put on the public mask. But it is damn hard. It takes a lot of work. The noise level, the meeting of people, the small talk, the picture taking. Wow. It just overwhelms me. I guess this is due to the neuropyschiatric symptoms of Lyme. One of my strategies to dealing with this kind of thing is I try to switch to auto-pilot. I try not to think too hard. I try to speak in simple sentences. Really, not speaking is the best.While at said party, I forgot someone’s name that I have known for quite a long time, I switched up words, I forgot words. And as my body and brain became more tired, the worse it became.

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However, people can be so very kind. They want to talk to me about how I am doing, how is the treatment, am I making progress, etc. I do indeed appreciate it all. But it can cause a bit of anxiety for me as well. I think it is my cognitive wires getting crossed. So some things that came at me the other day: Have you tried ***treatment?, You look great, you must be feeling better!, Mental health is 50% of overall health, and more. Of course, I want to engage in conversation, I want to interact with others. Yet, this alone takes so much energy. It all just wore me out.

 

On a positive note though, like I said the party was fun, and I was able to rest all day yesterday. I hope you all are enjoying this Memorial Day.

Namaste – Belle

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Ever-Changing Symptoms

I was really hoping these last few weeks of school would go very smoothly. I’d made it this far, limping metaphorically, but since spring break, I wasn’t doing too horribly. My protocol since March this year has been herbals only, and so the hope is that my body in conjunction with the herbals can combat the Lyme and send it packing. Yes. I completely understand that after taking a multitude of antibiotics for over 30 months including IV abx is hard on the system. Yes. I understand that my gut flora is messed up. Yes. I know it will take awhile to get my system back on track. Yes, yes, yes. Got it.

Knowing now what I know about Lyme disease and the various ways to treat it, would I go back and do the same thing? Most likely. When I was first and finally diagnosed with Lyme disease, I was severely ill. Not only had I had Lyme for who knows how long active in my system, I also had a viral overload. Several viruses that we normally have once and then build an immunity to had reactivated in my system thanks to the bacterial infection. So, yes. I think treating with antibiotics was the best choice starting out. It took almost 9 months to truly see any difference in what I was experiencing. I didn’t herx either for about the first 9 months. I was one sick puppy.

Very rarely do I forget that I am still dealing with Lyme. It won’t let me forget. If it isn’t one thing, like severe fatigue, then it is another, like nausea and migraines. The symptoms seem to come and go with no rhyme or reason although the headaches seem to stay my constant companion. When my LLMD first started treating me in 2013, she said that “we want to progressively get to a point where you have more good days than bad.” Sounded like a great plan to me. And sometimes, that is the case for a few weeks at a time.

Recently though, I have had a string of pretty rough days in a row. As soon as I can, I will post about what is going on. Right now, I am just trying to put my nose to the grindstone and get through it. Consequences of this situation right now are that I cannot work, so I have been out this week. Of course, I am grateful that I have so much support at my work and people who understand, but I feel bad that my students miss out. But if it had to happen, this really is the better time of year since we are getting close to finals and summer break. It’s been an emotional rollercoaster for a couple of weeks, and I am really ready to get better and get back to work.

So for those of you with Lyme disease out there or a chronic illness, do you also experience a fluctuation in symptoms? Are they triggered by anything that you can pinpoint?

Peace -B

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via optimisticquotes.org

 

 

 

 

The Lyme and Stomach Tango

This past week hasn’t been much fun. On the positive side of it, I am having way less fatigue and exhaustion and the nausea has simmered a bit. This makes me happy. I try to center on the upside of this. But what I have learned about Lyme and its multifaceted myriad of delights is that when one thing comes under control or subsides, well, just wait; there is another wondrous ailment that will pop up. So it goes.

Today, I am missing work again. The allotted and bank of sick days is quickly coming to a zero quantity and even with the leave days added in the fall for the next school year (I am in no way complaining as it is a generous addition), I will be hard pressed to not use them all and more if things continue as they are at present. This worry must go on the back burner for now though. 

Though the nausea has subsided to a minimal issue, and I have some meds to help curtail it, instead, I am now having some serious indigestion. It happens a good 3-5 hours after eating, no matter what I eat. For the past 8 nights, the indigestion has been so terrible that it has made me wake out of a dead sleep, usually about 1-3 a.m. Am I getting desperate for relief? Yo buddy, for sure.

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                             Image via  Tango Santa Maria – Gotan Project – YouTube

What are some things I have tried to do to alleviate this? I’m on a gluten free diet for the most part. I eat dinner early in the evening, and I eat smaller portions. I take my supplements and herbal tinctures throughout the day; I try to spread them out. I take a good probiotic and my LLMD has me on Nystatin, an anti-fungal. I drink a solid gallon of lemon water daily and a few cops of green tea in between. No sodas and just one cup of coffee in the morning. Alka-slezer Gold is a good friend of mine and can help minimize the indigestion for a bit. I’ve also added charcoal tablets after doing research. These can help but they cannot be taken infinitely. The meds for the nausea really don’t help with indigestion. Whole different animal, I guess.

Here’s where I am today: no food as of yet. I am presently drinking green tea with some sliced fresh ginger. Water consumption is also happening. Report? No indigestion, but tummy is unsettled and my damn head hurts. Plan for the rest of the day? Maybe try and eat some plain scrambled eggs and/or have some plain chicken broth. Then, see what happens. 

Going to the doctor is not a realistic step right now. If it gets worse, or if I can’t eat at all, then I will definitely go. It’s just so difficult to try and get in to see my LLMD here without a prior appointment. Ridiculous really. In February, when I was so sick with nausea and fatigue, I called and they told me the wait was 2 weeks to see my doctor. When I pushed them and also emailed my doctor directly, I finally was able to squeeze in a few days later. I saw doc’s PA who is a seriously an awesome person, but PA diagnosed me with the flu (I did not have the flu) and I ended up back in the office 2 weeks later. Needless to say, it wasn’t very productive on top of my feeling like total crap. 

I’ve been doing a lot of research this week on the Gut and Lyme. I realize that I am probably going to have to clean up my diet even more. After almost 3 years on antibiotics, I am sure my stomach is affected. Perhaps there is residual damage as well? I have been totally off of antibiotics since November, but I am sure that getting my tummy back to “normal” is going to take some time and serious dedication. Also, trial and error. While I did well on abx in that I did not end up with a Candida infection nor C-Diff, I really have a feeling that some of the issues I am experiencing now are due to the extended use of the abx. 

Ok, friends, I am off to make some more ginger tea and do some resting. Namaste. -B