Creeping In

Posted on February 1, 2023 by

59 Comments

Overall, I’ve been happily semi- cautious about my health since this past summer. I mean, yes, I’m still chronically ill, but less on the ill side, I think.

JIC, since I haven’t mentioned it much, my situation briefly is: a decade ago after 3+ years of trying to figure out weird and seemingly unrelated health issues, I was finally correctly diagnosed and treated for Lyme disease. Lyme is spread by a tick bite. It’s a bacterial infection (although lots of other very nasty bacteria and viruses can be transmitted by ticks).  However, that’s been a battle in and of itself over the years.

Since I was sick for so long and not diagnosed correctly and not being treated, and then in  treatment for so long, I now have leftover issues both my doctors conclude (auto-immune stuff). The bacteria from Lyme is insipid, taking over anything and everything it can in the body.

One leftover issues at this point for me is recurring Epstein Barr virus and the other is Chronic Fatigue. There are a few more, but these two are the ones that cause the most trouble for me overall. Dang trouble makers!

I knew a few weeks ago that something was up. I’d been doing fairly well since the summer. Of course there were days here and there that I really struggled, but they were still manageable.

However, a few weeks ago my brain started having glitches. Familiar brain issues that had calmed down in the past few months back at ot. Lots of word loss and processing trouble were back, unfortunately. Short term memory issues also. No fun!

The brain issues seriously suck. It gets to a point in the day where I feel like my brain is hitting a brick wall and after that, I just can’t do thinking at all. I haven’t really had much of this for the past few months. But it’s back. Ugh.

The fatigue is also creeping in. Slowly, but methodically. I had to take Monday off from work. I just couldn’t manage it. I slept most of the day. I worried that I might not be able to go back to work. Last year. I had to take a medical leave right after winter break. I was out about 5 weeks. It was my first – and hopefully last- prolonged leave in the decade I’ve been doing this chronic illness life.

I’m back to work, and we’ll just have to take it day by day. You’d think by now I’d be used to this pace, used to the unpredictability, used to the ebb and flow of symptoms. And I am to some degree, but I’m also hard headed sometimes ,(husband would say most of the time) just trying to push through when I absolutely know that isn’t helping!

For now, I’m grateful that it’s not much worse (because, been there), that my family and colleagues are supportive, and that I have a few paid sick days left. One day at a time, one day at a time.

Take care, my friends!

Category: chronic illness, Lyme disease Symptoms, The PresentTags: , , , , , , , , , , , , , , , , , , , , ,

59 Comments on “Creeping In”

  3. I think the unpredictability would be the hardest for me to deal with. If you break a leg, the bone gets set and the leg heals. It’s predictable. But in a situation like yours, the coming and going of symptoms would keep me on edge. Just remember — those symptoms that come also can go. And aren’t we lucky that we’re not having to deal with that ice storm? What a mess that is.

    Liked by 3 people

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    • You’ve hit the nail on the head! Not knowing when (sometimes) it might get worse is frustrating. But you’re right. It does get better. Yes, wow. We are very lucky. While the rain is getting tiresome on day 6 or 7, it’s waaay better than ice! I hope you’re staying warm!

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  4. Wishing you the best. I know with pain working as a teacher becomes even more challenging as teaching is one of the most challenging jobs, ever. It makes one want to have a sit down job where you can take a load off your feet and heart. My thoughts are with you. Stay warm, also in Texas.

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  5. Goodness, I’m so sorry you’re going through this. I’m in a similar place–infinitely better than I was several years ago, but worse than a month ago. The unpredictability is so tough, especially when you’re “doing everything right” and feel like you *should* be feeling fine. One day at a time is key. I hope you find some relief soon. Sending a big hug! ☺️

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    • Thanks, Erin! Yes, you know it all too well. I know you’re having a rough time also. Hang in there. Hopefully, we’ll both be moving out of this space into a better one very soon! ❤️❤️❤️

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  6. Oh, I’m so sorry to hear this. How frustrating to feel the issues creeping back in. But this post is full of all the wisdom you’ve gained and earned over this past decade – and I hope it makes the experience more manageable and easier to deal with. Sending great thoughts!! 🙂 ❤ ❤

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    • Hi. Ally Bean sent me. I picked yours because of it’s title. My niece is affected with Lyme disease as well and it’s been a struggle for sure. Sounds like you live like me — I am just going to do this shit and consequences be damned. It’s taken me decades of back pain and sciatica to realize that sometimes I really do need to lay down and rest. Take care. Bernie

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      • Hi Bernie! I’m sorry your niece is dealing with Lyme as well! I can’t believe there aren’t more treatments and knowledge about it medically. I’m sure dealing with back pain really sucks. My mom has had back trouble for many years now. Does anything help at all?

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  10. I’m dealing with brain issues “creeping in” too, but in my case (being an octogenarian) , it’s due to old age. The worst part is knowing that it’s only going to slowly get worse as time goes by, and there’s nothing I can do about it except cope as best I can. Still, I can’t complain (or should I say, I shouldn’t complain) because I’ve lived longer than most and suffered less than many.

    Take care.

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    • Hi Mistermuse, I love your name BTW 🙂 I shouldn’t complain either. It’s just hard to see progress and then it slips away. But, like you said, we cope as best we can. That’s something. I hope you are well!

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  11. I have a couple of friends who have Lyme Disease. Their stories are remarkably similar to yours because their conditions went undiagnosed for a long time. One of them told me that there are over 80 autoimmune diseases and many of the symptoms are similar which accounts for it being hard to diagnose.

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  12. At least you didn’t say…one day at a Lyme…I take a ..wake up med…for my fatigue so I can continue working, I am also fairly stable but with MS , but Jan- Feb it’s like the tank is empty, or any fuel I put it screams through me at wharp speed… one day at a time…it’s the best way!

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    • Hi Sarah! Dang! One day at a Lyme…love it! I’m sorry you’re dealing with MS. I’m sure the challenges you face are similar if not more so. Do you like the wake up med? Does it bother you when you try to sleep? Maybe it’s this time of year that can cause flare ups along with other things. This is usually a tough time for me. I don’t know why I act surprised when things go south. I never complain when I’m on an upswing lol I hope you are having more good days than not ❤️

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      • Teehee! A new blog name for you ! I think there are a lot of similarities between auto – neuro – diseases that make our body go haywire and parts have minds of their own. The wake up med I only take first thing in the am and has a 4 hour life, which is usually enough to do the trick ! Lots of different choices, just a matter of finding the balance between meds, food, exercise and living our best life !

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  13. That sounds horrible. I’ve read and learned more about Lyme disease in recent years due to celebrities like Justin Bieber talking about their experience. I’m sorry it continues to challenge your daily life. Thanks for helping spread awareness! And hope you get well and have less challenging days soon!

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    • Hi AB, I wonder how JB is doing now. I hope he’s getting some relief. I knew about Lyme disease when we lived in NY. But here in Texas, it’s like it doesn’t exist. When I was searching trying to find out about my health issues, it was never mentioned and it never crossed my mind. I was very lucky to stumble upon a chronic fatigue doctor and on the first visit she tested me. Winner! 🙂 I sincerely appreciate your well wishes.

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  15. My doctor tested me several years back for Lyme disease as a precautionary measure, and she noted she had a couple other patients who had it at the time and were struggling. You sound like Mrs. Chess in regard to trying to push through medical issues – I’ve convinced her sometimes you just have to take a little break and recharge. Hoping this is a short-term situation and wishing you the very best.

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    • Hi Bruce, I’m glad your doctor had Lyme on the radar at least. Here in Texas, many doctors just say it doesn’t exist here which makes no sense to me. Mrs. Chess is lucky to have you in her corner! My husband helps me as well if I start getting too extra or geared up. He knows me well. 🙂

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  17. Thank you for sharing !! I have some issues also (though not Lyme’s ) and I know you will overcome with family, friends and help in your corner.. and everytime you think you may have a setback , it just gives you the determination to overcome and return stronger.. “Victory is not always winning the battle, but rising every time you fall” (Napoleon Bonaparte).. 🙂

    Hope life is all that you wish for it to be and until we meet again..
    May your day be touched
    by a bit of Irish luck,
    Brightened by a song
    in your heart,
    And warmed by the smiles
    of people you love.
    (Irish Saying)

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  23. You sound courageous, something that counts for a lot. Physicians can be life savers, but often have to work by eliminating possible disorders until the right one is reached. Looks like you have many people rooting for you. Add me to the list!

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  24. It is so hard dealing with a chronic illness and it’s vagaries. I feel for you with the fatigue. Somehow even getting enough sleep doesn’t help that feeling of exhaustion. Wishing you well and less glitches. K x

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February 2023
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