Tag: coping strategies

Still Chronically Ill

Am I still chronically ill?

I’ve been less focused on writing lately. I can’t quite put my finger on it. Reflecting, I think it is because, well compared to say 2 years ago, I think my health is a bit improved. Honestly, it’s hard to say and hard to measure. But in my mind, and my husband agrees, I am doing better overall. And so, I find that this makes it more difficult to write than when I was much sicker. Weird, right?

I think this is due to my wondering: what can I write about as a semi-sick, semi-healed person that people would actually be interested in reading? If you have any ideas, please let me know!

While so many of my symptoms have all but disappeared, I am still trying to work on insomnia, joint and muscle pain, memory and concentration issues, and fatigue. Sometimes, these wax and wane, although the insomnia issue and the fatigue are cornerstones of this Lyme journey that continue to remind me that I am chronically ill. Oy.

One other issue I am struggling with is actually accepting the fact that I am chronically ill. It was much easier to embrace it and own it when I really felt so very terrible every single day. For years on end. Now that I have some relief, and there are times I can participate in life in ways that haven’t been options for me – again for years – it is much harder to keep in mind that I am in fact, still chronically ill.

My mind likes to play tricks on me, or maybe it is more my body that plays the tricks. An example would be this: I used to have terrible migraines. I had never dealt with anything like this before Lyme disease. The migraines started about 18 months into treatment. And they continued for about 12 months. A good one to 2 a month. Learning to deal with those was only one part of a puzzle I still do not think I have all of the pieces to. And then, they stopped. I haven’t had a migraine for quite awhile. So, one more symptom I don’t have to deal with and I think, hey, I’m ok. I think, I’m so much better off than so many others. I’m making progress. I can’t really say I am chronically ill because, well, I had migraines and now I don’t.

How can I be both better than my worst 3 years ago, or 6 years ago, and yet, still be chronically ill? This is something I am truly trying to figure out for myself. I don’t have an answer. I savor the minutes and sometimes hours I feel better, and I survive through the ones when I don’t.

I hope all of you are doing well and that Thanksgiving was good to you and to yours. Take care. – B

Closet Crying is The Best

When life gets tough head to the closet!

I do my best to try and keep it together. I can pretty much manage to do this at work, even on the tough health days, which are many. But once I am home, I just let it all out.

At times, I’m like a pot boiling over. The buildup from the day: hiding the pain, trying to be energetic, fighting the fatigue, dealing with 100 things at a time along with 150 students a day, can definitely wear me down. Then, I get home, there are animals to take care of, laundry to get washed…you get it. And if I am also dealing with symptoms that are heightened such as joint pain, or insomnia, the list goes on….well then something’s gotta give.

When things just get to be too much, I go into the closet to have a good cry. Yes, I said the closet. It isn’t a huge area but it’s big enough that I can lay down and stare at the ceiling. I can turn off the light, and it is nice and quiet in there! At one point, and sometimes still, lights and noise trigger me. So, in the closet, we can block out both!

I head in there and have a bawl, literally. It sounds dumb, but it is a safe place for me. I can just let everything out without censorship from myself or anyone else. While I hate getting to this point because I am usually just brimming with the stress of trying to fake it and/or dealing with the stress of multiple symptoms, along with just daily things in life (daily things I’m not very adept at doing anymore), once I start the big cry, I begin to feel better. In some ways, I think I am just giving myself permission to let it all go.

If my husband is around, he often times will find me in the closet when I am crying, or what I like to call processing :). He’s very supportive, and he’ll just hug me until I am finished. Sometimes, the dogs will sniff me out, and they will come in for support. By the time I finish up the tears, I feel more focused and aware of what is really important and pressing and what is not.

Do you have a favorite place to let it all out? Please let me know I am not the only one who does something like this! 🙂

I hope your week is going well. Peace – B

River Staycation

Yes, Newt has a shark life vest!

We decided to do an overnight trip to a major river about 3 hours from home this past week. My husband loves a particular spot, and the river is spring fed so it is nice and cold. Temperatures here are now are hitting 95-100 degrees with a heat index of 105+. It’s really hard to find fun things to do that do not require you to be outside between say 9 a.m. until 9 p.m.! Fer reals. I just can’t do the heat at all.

We also decided to take one of our several dogs, Newton, as he has made a trip to Colorado (17 hours in a car) and did very well. He is also very well tempered and loves to socialize. We weren’t sure how he would do in the hotel, but we figured worst case, we could make the trip home that night if needed.

Needless to say – he had a blast! He met all kinds of new people and other dogs. He swam a bunch. He had many adventures! Staying in the hotel went well. He barked just a few times but nothing major. He passed out and slept all through the night. We will definitely be doing this again!

As for me, I did pretty well, too! I’m pretty rested up from not working, and the river has great places that are shaded so I didn’t overheat. My fatigue has lessened over the past month or so and I was able to keep up. Overall, we had a wonderful time. It was great to be outside and to enjoy being active!

Hoping your summer days are joyful – b

One Down, and I don’t Know How Many to GO

Happy Sunday, my people! I hope this finds you well and happy. So, I completed my first week back to work following our summer break. So far, so good. And granted, there are no students until August 28th. That may prove to be a different story. Of course, I may be running on a tad bit of adrenaline right now, what I have of it. I’m trying to pace myself if that is even possible. I’m not sure if it really is most of the time.

This past week was a lot of sitting and listening. It was also a lot of being around peoples and many of them for about 8-9 hours a day. The first few days, I struggled with over-stimulus. I also struggled with so much sound. About a year into my Lyme treatment, sound and light sensitivity became a real issue. I had never experienced either of these in my life so at first, I thought I was just being extra paranoid about my health or something. Then, I asked my doctor about it and she said both of these are Lyme related! I am not overly sensitive all of the time, but sometimes they both can really wreak havoc. At a couple of points throughout the week, I just had to go and find a quiet place to sit for a few minutes. I also utilized my migraine glasses for light sensitivity. I sincerely LOVE these Axon Optics glasses! 

We have another week of professional development on our campus. There isn’t much time set aside for working in our classrooms which is really just too bad. I’m not that stressed about that aspect because I know I can get it done in time, but I feel for new teachers. I am sure they are feeling mega-overwhelmed by now as I remember I did the first year I taught!

Nooooooo!

 

I am worried about sitting for so long every day in not-so-comfy-chairs. In fact, they are really uncomfortable. I figure I will get up and move as much as I need to in order to keep the fibro at bay as much as possible. I also worry about my brain functioning correctly. I seem to be ok in the mornings but depending on many things such as sound, lighting, peoples, pain, etc., things start shutting down up there and I just feel like I am running into a wall every time I try to have a thought. I hate that feeling but I’m trying not to fight it. It doesn’t help to get mad or stressed about it. It is what it is. I am merely trying to use my brain as much as I can when it cooperates! You know what I mean?!?

I hope you had a great weekend. And here’s to the week to come: May we all have a smooth and pain-free week. Peace – B

Heading Back to Work Very Cautiously

Returning to work….it’s a hard decision!

Honestly, I’m not sure I wrote about trying to make the decision about whether to continue working or not this past spring.  I am a high school teacher in my 17th year now. This past March, my health and mental health were at the breaking point, and I had to go on a medical leave. That alone was tough. I was out lof work 3 weeks (one week was Spring Break). It was much needed time off to rest and get physically to a less fatigued state, and I was able to make it through the rest of the school year when I returned from leave. 

But taking a medical leave definitely made my husband and I have some serious and challenging conversations about whether I should continue to work or not. We’ve actually been talking about it for a couple of years now. But finances weren’t where we wanted them, savings wasn’t enough, we have a daughter in college….blah, blah. You know it all. Yet, in March, I was so bad, everything was so bad, that those things just weren’t that important anymore. If I had to stop working, we would deal with it. 

And yet. After some discussions with my husband, my family, and co-workers, I have decided to return for this school year. I’m worried though. And I may be putting myself into an awkward position if I have to leave in the middle of the semester or at semester time. I agonize over leaving my students like that, over possibly leaving my colleagues like that – basically in a lurch. But, work told me that I need to do what I can and what I want and if it comes down to a decision such as leaving then I will have to do it, and it will work out.  Bottomline is they would rather have me there for as long as possible then have me resign prematurely. This in itself is a relief of sorts. I know I’m replaceable; it isn’t that. I just don’t want to cause issues for others. Teaching is hard enough when everything is going smoothly!

Once I made the decision to go back, I was excited. Then, I transitioned to feeling freaked out. This summer, my health has improved. I don’t know if it is the new antibiotics I am on or my additional thyroid meds or a combo but it has been a real JOY! Yes, of course, I am off for the summer and so I can rest, etc. when I want, but I’ve been doing this for the past 4 summers and I can tell you for certain, this summer has been different. I’ve had days and weeks of energy levels I haven’t experienced in YEARS. YEARS. 

With this new found improvement in health, I am even more anxious now to return to work. Weird, right? I’m afraid I will lose this feeling, this energy. I’m fearful I will end up feeling so overwhelmed and fatigued that I can’t do anything outside of working (and even that became impossible in March). I don’t want this little victory for my quality of life to go away or be whittled away somehow.

I don’t know how I am going to handle the 8-9 hour days. Many of my physical symptoms have improved but what if I go into a flare? WHAT IF? I know I am making myself silly by worrying about thinsg I have absolutely no control over. I logically know this. I keep telling myself that I just have to take it literally day by day. Step by step. We’ll have to see how it goes. We have a Plan B…kinda.

dog-734689__340
Source: pixabay.com

Teachers start back tomorrow. We’ll have a few weeks of professional development and then students are back August 28th. I’ve only ben anxious since Wednesday. Off and On….all of today. The alarm is set, I have my bag packed, there’s not much else I can do, right?

I want to be excited, and I am. I’m beginning my 17th year of teaching, my Awesome department chair gave me the classes I want, the schedule that best suits my health needs, the team I want to work with. There is absolutely nothing to not be grateful afor and about! My biggest WISH is that I am able to complete this school year in a healthy state.

Thanks for reading and for listening, dear peoples. Peace – Belle

What’s Going On?!?

HOLY MOLY! I feel good!

WOW! So my out of town doctor (OTD) at my last appointment in May looked over my labs (the ones where my ITDoc said my thyroid was “fine”) and said the numbers weren’t where we should have them. OTD then added more thyroid meds and told me to start tirtrating up from 5 mcg and to continue to add another 5 mcg weekly until I hit 20 mcg. OTD told me to stop at the dosage anytime I began to feel better and more energetic. Since the middle of May, I have added the thyroid meds and maxed at 20 mcg around May 28th. Again, this is medication in addition to the Synthroid I have been taking for years on a daily basis for Hypothyroidism.

With the first 5,10, 15 additional mcg I really didn’t notice much. Maybe a little more pep but nothing too noticable. Then, I hit the 20 mcg. Again, not much felt different the first week of this dose. But after about 2 weeks, BOY HOWDY! This past week has been seriously amazing.

Some things I’ve been able to do this past week that I haven’t done for months on end……and that I definitely haven’t done all in one week for YEARS are: Go out for dinner with friends, go to a movie (at night!), go grocery shopping (I am not kdding), go to lunch with a friend, mow the entire yard (like an acre), clean the house, do laundry, cook dinner, go do errands and actually enjoy said errands! Stay upright most of the day! I also have added small increments of excercise on my old elliptical machine.

No Way!
Source: Netflix GIF

I’ve had the best time! I know that most of the above a normal person can do without much thinking about it, but for me, it has been something else. Have I still had some joint pain? Yes. Have I still hit some energy walls? Yes. Am I not working right now? Yes. But still!!!

Now granted, I probably have absolutely no idea what “normal” is anymore. After 4 years of treatment and about 7 years of being ill what I can remember is most likely skewed. But I honestly haven’t felt this good and full of this much energy in….well, I have no idea how long. While I have had some hours and maybe a few days sporadically over the past year where I felt well enough or I had enough energy enough to do a few things, I have never had an extended period of time – a whole week! – where I felt like this.

I’m savoring every single minute, my people. Every. single.minute. My husband says we’ll take what we can get, and I say Amen to that. I know I’m not “cured.” I also know that my being off from work for the summer helps. I also realize that I’m starting a new treatment protocol of combination antibiotics and high doses of those antibiotics in just a few days. There will be fallout from this treatment. I will have to detox, to deal with new symptoms, to handle herxes. I know. I know. The thought  of lsoing this momentum makes me want to not go ahead with this protocol. But, I need to try it. I’ve never been treated with combination therapy and if I’m going to do it, the summer is the best time for sure.

But until I start the new meds, I’m going to kick it up as much as possible. I’m going to try to squeeze in everything I physically can while I feel good. So I’m off to do some projects. I hope your weekend is wonderful. And a Happy Father’s Day to all you dads out there. Take care of yourselves.

Peace and joy- Belle