Tag: chronic lyme

chronic illness, The Present

Summer 2019

When summer started, I needed a couple of weeks to decompress. I was wiped out completely by the very last day of work – teacher workday. My brain was not working well at all, and I was having some medium to severe lower back pain and right hip pain. As I walked out of our campus doors on May 31st, I wasn’t sure what the summer would hold for me healthwise.

I had 2 goals for this summer: get off of the sleep meds I’ve been taking for several years and to try and add some exercise to my daily routine. I stopped taking the sleep medication immediately. I’m not going to lie, it was really tough the first week or so. I would go to sleep and then I would keep waking up almost every half hour to hour most of the night. I almost caved in before things started looking up.

My sleep had not been improving on the sleep medication this spring at all. In fact, insomnia is now one of the lingering symptoms I am dealing with as far as the chronic Lyme is concerned. I spoke to my in-town doctor about this at my June visit, but remember, she takes insurance and if I am lucky, I get about 8-10 minutes with her. It is impossible to discuss much in that short of a time frame. And at this appointment, I wanted to focus on the deep hip pain I’ve been having since February so that was the topic of our brief visit. Let’s just say she didn’t help me with that either and leave it at that.

I really wanted to use the summer to try and get a regular, good sleep pattern back if at all possible. So I endured. I haven’t taken a Lunesta since June 1st. I do take time released melatonin and Valerian Root before bed and a supplement of DIM my out-of-town doctor suggested. I’m not saying I haven’t had some tough nights. I have. But overall, I’ve been pretty happy with the results of stopping the medication. While I still wake up a few times every night, I’m able to get back to sleep most of the time.

I’m sincerely not sure what I will do if, once back at work, I can’t sleep well. Not sleeping well for weeks and/or months at a time is just so horrible for me on so many levels (for anyone really!), that I will probably have to go back to Lunesta or ask my doctor for a different sleep med if that happens. I won’t make it if I can’t sleep. I am sincerely keeping my fingers crossed that I can maintain my sleep naturally!

My other goal this summer was to add a bit of exercise if possible. Before Lyme, I liked to walk 2 miles a day and do yoga. I always had a strong energy level so I could do these before school or after school. But these past 6 years, I just have not had the energy to do anything. Even just working has been a serious challenge for me. When summer started, I added 30 minutes 5xs a week on the elliptical machine I’ve had sitting around for years LOL. Oh dear God, the first 2 weeks were not fun, my friends. Wow. I knew I was out of shape but DAMN! But I have been able to continue this workout 5xs a week all summer! I am so happy about this! I want to be optimistic and say that yes, I will continue once I head back to work August 12th, but I just don’t know. I need to be realistic. Look, I am going to try. That’s all I can do.

To be honest, I haven’t done a lot this summer. We went to the river 3-4 times this summer which is always great but otherwise, I just did some cleaning at home and enjoyed the time off. Oh, plus a few doctor visits! My hip has been killing me so I am trying to figure that out. That’s for another post though.

I hope you and yours are having a good summer! Take care – B

Image by Ursula Bodnar from Pixabay
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Coping, The Present

Lyme Update

When the anniversary of my diagnosis of Lyme disease comes along each year, I get a little freaked out. It’s irrational. But it does make me pause and reflect (which isn’t a terrible thing to do necessarily).

After about 4 years of experiencing what appeared to me as random and some migrating symptoms, after seeing 7-8 different doctors, mostly specialists, after having an MRI, a variety of blood test (more than once), and after becoming more and more ill, I lucked into seeing a doctor who tested me for Lyme disease. By the time I was diagnosed, I was very sick; I had severe daily headaches, joint pain, numbness in my feet, insomnia…the list goes on.

This March, it has been 6 years of treatment for Chronic Lyme disease. Ten years of being severely ill. And yes, I have seen improvement. The lasting symptoms that seem to never end are the chronic fatigue, the joint pain, the insomnia, and the memory/processing issues. Considering how long this list was in 2013, I can only be grateful for the progress I have made.

However, this anniversary also reminds me of what I am still struggling to deal with on a daily basis. That’s the part of this that gets me down sometimes. It’s hard not to compare the Before and the Now. And this comparison is only amplified by the years that have gone by.

The lasting and most enduring symptoms of this illness, at least in my case, are the fatigue, the insomnia (it’s so bad right now), the joint pain, and the memory/cognitive issues. Sometimes, it’s tough to see if there is any progress. I feel like these are things my doctors and I have been working on for the past 6 years. While I hope they become less severe, I also simultaneously realize this may be as good as it gets. I’m not sure I am at the acceptance stage in this case.

I hope spring is opening its doors in your world. Here in Houston, we are enjoying the mild temperatures before the real heat begins at the end of this month.

Best to you and yours, Belle

    Doggies, The Present

    River Staycation

    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

    chronic illness, Coping

    And the Thunder Rolls

    It’s 9:20 p.m. and lots of thundering going on. Not much else though. If we get rain, that would be awesome. It rained all day on the 4th which is unheard of for the most part here in this area of Texas. We were grateful then. If we get more tonight then, boy, howdy!

    The summer seems to be speeding right along and while I’ve learned over the years, unwillingly I might add, not to have nor to set any crazy goals for summer break, I do it anyway in the way back of my mind. I know I’ll be disappointed because well, chronic illness. All the magical thinking I conjure doesn’t change the facts that there is much I just can’t do anymore or I can’t do for any extended period. Ugh.

    I wanted to start adding some exercise. Maybe yoga. I used to get up early before work years ago and do a 35 minute yoga session daily. I loved it. But that’s way too much right now. I got a yoga stretch DVD. I’ve done it a few times but nowhere near what I thought I would/could.

    I need to work on school stuff but every time I sit down to do it, I just can’t stay focused. I reset but it only helps for a bit and then- what was I doing?

    The more time goes by, the more I realize what I haven’t done, what I haven’t accomplished, what I haven’t produced. It’s all just expectations I’ve put on myself. I know this fact, but I still feel unsettled about not doing more with my time off.

    But it’s been good to be off of work. I can rest when I need to. I can do basic chores. I can cook. I can clean. We’ve gone to the lake a couple times-just for a few hours- as the heat is killer for me. I’ve also been reading a lot. Picking up reading again, longer pieces, has been a true joy. I lost the concentration skills when Lyme showed up, and during my first 4 years of treatment I was so sick I just couldn’t manage it well at all. I have like 10 ebooks checked out from the library and several others on hold. I’m very happy about being able to read longer texts again!

    Well, the thunder has moved out of here with nothing to show for all of the drama. I guess it’s just a heat storm.

    I’m going to try to get some sleep. Happy dreams, friends. xoxo – B

    chronic illness, Daily Grind

    I Still Gots the Lyme!

    Hi all!! I know it’s been a skip and a beat. The aftermath of Hurricane Harvey ate up much of my time, then school started. Starting school 2 weeks late has thrown things off and so, I admit, it has taken me awhile to get back into the swing of things. I honestly didn’t realize that it had been so long since I had posted.

    I hope this finds you and yours well. While the first day of Fall has come and gone, I can attest that it certainly has not arived whatsoever here in Houston much to everyone’s dismay. In fact, yesterday, the high was 90 degrees. No bueno. Yes, the shadows are changing, birds are gathering, and clouds look “fall-like” and yet, it is no cooler. I believe there is a cool front rolling through this evening (LIES!), but I don’t dare to look at WeatherBug and be disappointed again.

    Pumpkins1

    But hey! I still have Chronic Lyme disease! However, the months of July, August, and most of September were the best I have felt in the past 4 years!!  It has been like the clouds in my brain cleared away and the sun felt brighter and life was more beautiful. Sincerely.  When I saw my OT (out of town doc) in September, she asked me what I thought was working and making the difference. Here’s what I told her:

    1. the additional thyroid medication she put me on in May,
    2. being off of work (I had all of June, July and half of August off completely),
    3. and maybe the combo therapy of antibiotics ahe put me on in June.
    4. But really, I don’t know for sure.

    I started back to work in mid-August, then the Hurricane/flooding, then 2 weeks off, then back to work. This is week 6 of being back to work full-time. So far, it hasn’t been bad. But I can start to feel a change in my body. It feels like I’m slipping somehow, albeit very slowly.

    At my OT doctor appointment in early September, my doctor decided that it was time to start weaning off the antibiotics. I was hesitant but I also know that we have to see if I can manage without them. I have been on Rifampin since March and on Ceftin and Zithromax since June. I eliminated Zithromax first, then Ceftin, and this is my last week on Rifampin. I felt alright without Zithromax. But the week I stopped Ceftin (about 3 weeks ago), the daily headaches seemed to return. 

    At first, I blew it off thinking it was becuase I had a cold. But I can say for sure now that the headaches are back. I’m also feeling a little less energetic. Again, I doubt myself and make excuses – I’m back at work, I’m not sleeping as much, I’m…..but I know deep down that it is Lyme related. 

    I’m giving it this week, and then I will contact my OT doc. She said to let her know if I start having symptoms again as I come off the antibiotics. Of course, I am having all kinds of thoughts, worries, emotions about this but that is for another post. 🙂 

    I just keep telling myself not the dismiss ANYTHING nor any SYMPTOMS. I have to trust my gut on everything and that is OK. Lyme became CHRONIC in my system because it was left to go bonkers for years in my body.

    That ain’t happening again. Not on my watch.

    Pumpkins

     

    Peace to you, friends. Until next time xxoo – Belle

     

     

    Communication, Coping, relationships

    Lyme and Relationships

    Mary_Oliver_quote1

    So, I have totally steered away from discussing and writing about the reality of trying to have a marriage, well any relationship really, while dealing with chronic Lyme disease. Why? Because it is TOUGH. In most cases, I feel like a failure and I feel guilty. I know, I know. It isn’t my fault I’m sick and I don’t choose to be sick. But still. All these feelings get tossed around. Many times, I feel like my husband and I just can’t speak the same language.

    He’s been awesome, don’t get me wrong. But after 4 years of this illness and not a lot of progress, I think we are both just stuck in how to move forward. How to be more accepting of the chronicness of my illness, and then how to accomodate what comes along with it. We aren’t doing too great of a job, honestly.

    I guess like Trump said about being president, “I thought it would be easier.” I thought figuring things out as a couple would be easier than it feels like right now.  We are talking and discussing all kinds of things so I think that’s a good sign. But I’m still scared sh**less and freaked out about it all.

    I don’t want to lose my husband and my best friend. I want it and US to work but I don’t have a clue what that might or should look like.

    Any advice or wisdom you can share? It would be much appreciated!

    Anyway friends, I hope your Sunday was and is a joyous one. Peace.

     

     

    Daily Grind, Work

    Hey Tired, Meet FATIGUE

    Over the summer, I’ve felt like my cognitive issues or the neuro Lyme, have improved. In June, my LLMD here in town (I have another doc out of town) started me on a supplement, ATP Fuel. Since being diagnosed with Lyme disease in March 2013, severe fatigue has been one of my major, and quite consistent soul crusher, er, I mean symptom.

    It’s continued to be a lingering symptom. Now, when I say fatigue, or severe fatigue, I don’t mean “tired.” There is a chasm of difference, one I never understood anywhere near well enough BLD ( Before Lyme Disease).

    You know what makes me “tired”? Staying up too late, doing too many activities, physically or mentally exerting myself ( this excludes Pokemon Go).

    But fatigue? A whole other ball game, my friends. Being “tired” means you need sleep so you sleep and wah lah! You wake up feeling like a million bucks! You are King of the World!

    But with fatigue not so much. Instead, waking up is a never-ending continuation of the fatigue you’ve been feeling for the last 3, 6, 9 months, or even years. It’s like a prison sentence that you don’t even have enough gumption to get angry about. It’s like being in a cave without light. I could go on but basically FATIGUE is not being “tired.” Fatigue sucks the f-ing life force from your body. And the most depressing thing about chronic fatigue (well, there really is a list of things), is not knowing when or IF it will end. No matter how much rest and how little of everything else, that’s always the question. Will it Ever End?

    I’ve written about fatigue before HERE and HERE. Hopefully, these posts can give you an inkling of the severity of the fatigue many Lyme patients as well as many chronic illness patients experience.

    Happy belated Martin Luther King day!

    Peace -b

    chronic illness, Coping, The Present

    Just Well, No.

    Hi my people. Yep, I’m missing you too. But, I am struggling with inspiration and with life in general at this point it seems. These past few months have been tough. I know I am being vague in a way, and I am so not trying to be evasive. Overall, it’s been a challenge to keep working. A real challenge. Don’t get me wrong. I love my job. But overall, it has just been a struggle to keep it up while dealing with the chronic fatigue and a myriad of illnesses I contract due to my sucky immune system.

    isayno

    So, yeah, both the emotional and the physical challenges of working a full-time job have pretty much consumed all of my time in recent months. Unfortunately, I am also trying to dig deep to find joy. Even in the little things. I don’t know if it is the time of year or the incessant constant day to day barrage of symptoms, or the trying to escape some of the chronic symptoms that seems to have made me shut-down a little on the inside. I’m trying to figure it out but honestly, I have found even that kind of thinking and reflection just exhausting. IDK.

    I just wanted to check in becasue, well, I miss the blogging world and my blogging people. I promise that I am making a concerted effort to get myself back on track and back in the Game so to speak.

    I hope this finds you well and full of JOY. Peace. -b