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One of the worst aspects of Lyme is the setbacks. Lyme is a disease that keeps on giving – one new symptom after another.
I’ve been quiet for so long on this blog, but I’ve thought about it and you who read it, nearly every week! I spent a long time this afternoon going back into my archives and rereading many of my posts. I’ve had so many up’s & down’s while treating this disease, I’d forgotten most of them. Perhaps I chose to forget them, who knows.
I think it’s time now for me to post an update on my progress and my life (or lack thereof) since it’s been so long since I have.
2011 has not been the best year for me, medically speaking. It feels like one big experiment-gone-wrong. I don’t remember a time this year that I fell well, really well. And it’s June already. Half of the year is gone!
I’m going to be honest. I feel worse now that I did at this point last year. Last summer I was in much better shape! I was excited and felt like I was finally on the right track in my treatment. Now fast-forward to this spring… I’m having a repeat of spring 2009. I’m going through the exact same symptoms, diagnoses, and experiences. I feel as though I’m reliving this part of my treatment.
Today is day 36 of a life-consuming pressure headache. At times, I’ve become non-functioning because of the pain of this headache. Some of you may remember I went through this in 2009 as well. My POTS (Postural Orthostatic Tachycardia Syndrome) is back with a vengeance, and my fatigue is insane. I don’t know about you, but I live on my couch. We have a symbiotic relationship.
Since I was following a similar pattern to 2009 we immediately thought of my eyes. Were my optic nerves swollen again? So in I went to be checked out. After many weeks of patience, and follow-ups, I was told on Friday that I need another spinal tap. I had 3 in 2009. I was really, really hoping those would be enough for a lifetime! I’m scheduled to have my 4th done this Thursday morning. Better sooner rather than later. I’ll know the results sooner this way, and hopefully have some answers. My neuro-opthamologist is LL and is concerned that I may be experiencing pseudotumor cerebri, a condition where the brain behaves as if there is a tumor present, but there is none. The number one symptom of this is unexplained increased intracranial pressure, which is what the spinal tap is for on Thursday.
However, I don’t know what to wish for. Do I want to have pseudotumor cerebri – another medical condition that is reversible, but needs medication and/or invasive assistance? Or do I wish for a normal, low pressure from the spinal tap and therefore have all of this be attributed to random Lyme-related symptoms? I just don’t know.
In addition to that development, I’m now completely off of my Lyme protocol. My LLMD and opthamologist told me to back off for now until things calm down. I was put on beta blockers a few weeks ago to calm my rapid heart rate and I’ll be referred to a cardiologist sometime this summer. I think the beta blockers have helped the POTS a bit and the fatigue, thankfully! My LLMD believes that m adrenals are a problem again and I’m most likely iron-deficient. I had a slew of blood tests done on Friday and I’ll learn more in a few weeks.
I’m afraid my LLMD is feeling overwhelmed by me. I’m not getting any better yet, and she’s afraid of making me worse. I’m taking this all one day at a time, but I really am beginning to feel overwhelmed myself!
I’ll be back soon. I’ve missed you all!
Wishing you health & healing,
molly
Every day is a journey filled with twists and turns. Every day, if you smile, you will feel alive, my son. — Santosh Kalwar
Toxins.
My LLMD brought up The Big Bad Word at my appointment this week. I hate the word toxins. Even more so do I hate the word toxic. I’m a visual person, and the word “toxic” brings with it only bad images.
I see hazmat suits and warning signs.
My LLMD appointment was on Tuesday. My LLMD is moving to a new building this month, and the next time I see her will be there. I can’t wait. For me, atmosphere means a lot. The clinic I have been seeing her at for months makes me ill. They have those lights that buzz, the nurses wear too much perfume, and the overall feeling of the place is sterile. It has nothing that stimulates healing for me. I really hope that the new office will be more suited for her; I really do. We patients deserve it.
My appointment can be summed up by the title of this post: The Big Bad Word.
I went in feeling that I was herxing. I know what this feeling is. My body is slowly becoming overwhelmed by toxins. The newest antibiotic trio has been working. But, is it too much? If you’ve been reading my blog for a while you’ll know that I’ve always been sensitive to treatments.
I feel as though I take two big steps forward in treatment. I make progress. I taste it. Then, my body forces me to back up again. I feel as though I’ve been in the same place for months. What has changed? Very little, actually. I had those great 3 weeks, and since then I’m back to where I was.
I’m frustrated.
My body is trying desperately to detox. I’m breaking out in whole-body sweats. My skin literally itches. My body is showing signs of trying to shed these toxins but it needs help. I left her office with the names of two new supplements to add to my regime which will aid in the detoxification. One I still need to order, and the other is in the mail already. I should be starting at least that one next week.
My antibiotic dosage has also been slightly reduced in order to help my body adjust. We’ll see if between these things I’ll see a difference. I hope so. Right now I’m living in a fog. My head feels as though it will explode at any moment, and my overall pain levels are increasing. My fatigue has struck again. What I laughingly refer to as my memory is becoming tiresome. I’m shaking like a leaf.
My daily functionality differs day by day.
Today I had plans to go shopping with my best friend. We ended up staying at my house, making popcorn, and watching Robin Hood: Men in Tights. All in all – it was a great day!! I’m grateful for it. I had so much fun. I laughed. I smiled. We talked. I loved this day. But our plans changed because suddenly this afternoon I was hit unexpectedly with a wall of fatigue.
I literally turned off my computer, the lights, and fell asleep on my couch for 20 minutes. I never take naps. When I do, I know it’s serious.
Maybe that’s why I enjoyed Robin Hood: Men in Tights so much today… humor to heal the herx? I’m willing to give that a try. Anyone ever tried detox by laughter?
Laughter heals – that much I know. But does it detox?
Well, it can’t hurt :)
Wishing you health & healing,
molly
“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” – Bill Cosby
I’ve been meaning to write this for over a month now, but I’ve never gotten very far on it. Oh, I’ve opened my writing program, dashed out a few lines now and then, but it never felt right. Nothing ever clicked. Nothing ever seemed right. It still doesn’t.
But I’ve decided {albeit belatedly} that this is what needs to be told. This difficulty to write is a symptom. Writing has never come hard to me. This, this isn’t normal. No. It’s a symptom, and I want to have this chronicled, if not for myself then for all those others out there who know what I’m talking about.
I feel as if there is literally a blockage in my brain. The frontal lobe has separated, and I can’t connect the pieces. I feel as if most days all I get accomplished is simply running around after myself picking up the small bits I keep dropping, only that I won’t notice until tomorrow that I really didn’t pick up any more than I missed.
Two steps forward, one back. Two thoughts forgotten, one remembered.
I feel disconnected. My body is telling me things and I’ve lost the decoder key. That’s never good.
I see my LLMD this week. I’m still not sure what I’m going to tell her. Maybe writing this will help me pick out the bullet points, I don’t know. A month ago I didn’t know what to tell her either – other than exactly what she had been waiting for me to say. I told her that I was placing myself in her hands, and she could do with me what she willed.
Of course, I’ve been doing that for over a year. But this is different. I told my doctor that the time has come for me to hand myself over to her. I have no school, no job, limited plans, and an entire year to concentrate on healing myself. I told her that she could throw at me whatever treatment she felt would be best for me and not worry about how the treatment would affect my life. This is what this year is for, I told her.
You should have seen her face.
She knew this was coming, and was she ever prepared. I’m now on a trio of antibiotics which are supposed to be working in unison, as well as an herbal tincture. I won’t get into the specifics of medication names – maybe I will at a later date – but I’m absolutely sure that I’ve gotten myself into exactly what I knew I would.
I’ve opened a door, and walked through it. I’ve committed. This is Lyme Disease treatment, baby; and I’m grateful for it!
At first I was shocked. I didn’t feel a horrible herx. Every day I took my dose in the morning, afternoon, and at night and just waited. I waited to feel something. And I did. Soon, I felt –gasp– better!
Each day flew by. I was making jewelry, rolling paper beads and listing items on Etsy. I was talking to friends. I was doing things!
One morning I felt different, and not in a good way. I spent that day on the couch. I gave myself time. And the next day I was up, feeling great again! I couldn’t understand it – but I wasn’t questioning it. About another week went by before I spent another day completely on the couch. Then, slowly, I began to notice more symptoms each day. Little things piled up.
Cold sweats, heart palpitations, constant, nagging headaches, and brain fog crept up on me until before I knew it they felt normal again.
I’m so, so grateful for those blissful few weeks! They gave me time to feel my feet grow steady under me. I enjoyed them! I was tired, of course, but I was never actually sure whether I was tired from being sick or tired from doing too much because I felt so good. Those are the days I would choose to live over again. When I look back on this month, they are the ones that I remember. I don’t recall what caused me to spend a day on the couch 3 weeks ago. But I do remember getting to listen to live Irish music downtown with one of my oldest friends. I do remember all the jewelry I made, and the family who lovingly supported me whilst doing it. I remember the days that I could cook, rather than the times I was too sick to eat, even though I know both of those things happened. They must have.
Some of these things I’ll blame on the whole horrible-memory-due-to-neurological-Lyme-disease thing, but I want most of the credit for this to go to the fact that there were just so many more good days than there were bad, and that’s something that I haven’t gotten to say in a really, really long time!
I might be hitting a herx now, but I had some great days before it hit. I think we’re on the right track. And I think now I have a better idea of what I’ll be sharing with my doctor this week.
As far as my blogging goes – look for me. I’m intent on sharing my healing journey with you all, and that involves the ups, and the downs. And I’m telling myself that my writing won’t improve at all by ignoring it. I need to polish the tarnish away, sweep away the cobwebs, and join the land of the bloggers again.
In peace & healing,
molly
“Happiness is nothing more than good health and a bad memory.” – Albert Schweitzer
I’ve given up on the idea of predictability. It’s a myth, a scam, a relentless tease. At least, it is when you’re living life with Lyme. I’m not trying for the “half glass empty” approach, or the storm cloud affect. No I promise I’m not. I’m as hopeful as ever. I’m simply accepting reality.
I’ve known this for a long time. If this disease had an owner’s manual it would be remiss to omit it. But sometimes Lyme can just punch you in the stomach. Literally.
My last post was a celebratory one about the tilt table test results. At the time, I said this:
I was also having some horrible abdominal pain. My entire abdomen is swollen and painful to the touch right now. Yuck. I wish my doctor appointment was sooner!
Let’s see… that was on Friday the 22nd. A week later (last Friday) I was back at the hospital again. But this time I was getting an abdominal ultrasound.
The pain, and swelling, increased each day until my appointment with my LLMD on Wednesday. By that time the pain was literally in my entire abdomen. But it had localized with the most severe pains coming from underneath my ribcage on my left side. Yep, my spleen. Great!
I was measuring the swelling. At one point it was almost 3 inches more than my normal measurement. 3 inches! It stayed pretty steady around an increase of 2 inches for the week, however. The pain was dull, shooting, stabbing, burning – you name it. Sometimes I couldn’t even sit up straight.
My LLMD felt around (painfully!) and was worried since she could feel the tip of the spleen sticking out from the ribcage. I should mention that she had checked in early December and didn’t feel a thing. So, off I went for a blood draw and an ultrasound appointment.
It wasn’t too bad. The swelling had (of course) gone down since Wednesday by Friday. But the lady was so nice, and so quick about it. My mom and I grabbed a cup of tea at the coffee shop on the way out, and were home just as the sun had fully risen. Why it had to be that early I have no idea. I’m a person who doesn’t function until noon on a good day!
Anyway, it was Friday so we put a few calls into the office to make sure my Doctor got the results before the weekend, and surprisingly enough she called back with results in a few hours.
Normal. Let me say that again, louder: NORMAL.
When my mom told me I think my reaction was, “WHAT?!”
Something was, and is, seriously wrong here! How can everything look normal?! Ah. That is one of the great Lyme mysteries. We all ponder it, turn it over in our minds, and eventually fume about it.
My LLMD believes that my entire abdomen is enflamed and irritated from organs to intestines. My are nerves sending out haywire responses and my body doesn’t know what to do with them. Funny, neither do I.
So, I’m still in pain. It still hurts to touch my abdomen, and doing so causes a wave of nausea. The pain hasn’t let up since last week. I’ve lost my appetite almost completely. And, I’ve given up tracking the swollen ups and downs.
I’ve accepted that this is a phase in my treatment. Granted, an unexpected one and yes, unpredictable. But I’m not happy about it. Herx or med reaction, I don’t know. I only know that I haven’t lost all hope that it’ll be better when I wake up in the morning.
Much Lymie <3, molly
“It’s something unpredictable, but in the end is right.” ~ Green Day
An update from what transpired during the rest of my LLMD appointment will be coming this week. Mepron, oh Mepron!
… aka the post that’s been building up in my mind for over a week. This blog means so much to me. It really does. It’s my outlet, my face to the world. I’ve struggled lately because as much as I love writing here, I feel as if it’s physically simply too much half of the time.
And here comes my venting session – Why does this, something I love, have to be getting harder as I’m supposed to be getting better? Why? Don’t misunderstand me. I do know why. I know that I’m still getting better; I’m just treating the harder to reach “bugs”. Each and every day I’m getting better. But I don’t want this disease to take anything more from me than it already has before I can get it into remission. Nothing more.
I’m scared that it will. New symptoms are appearing, and old ones are rearing their ugly heads yet again.
Writing didn’t used to be this hard. I mean, writer’s block is one thing but this is on another playing field altogether. Brain fog is intense, and it’s frustrating as hell. I know that I can pass my physics class. And yet, one day I get an F on a quiz. Great. I talk to the teacher, get some advice, and go take the quiz again. The exact same quiz. I got 100% on it. The only difference was the days I took it on, and the amount of actual mental clarity I had at the time. And I obviously didn’t actually remember any of the questions or their answers!
When I sit down to write a blog post I have to ask myself if what I want to say is worth it at the moment. Can that energy be used towards something else? Usually, the answer is yes. And that is so deeply saddening to me. Often, however I’m swayed by how I’m feeling. This is natural, of course. But when the disease I’m blogging about is stopping me from actually blogging, then that’s a problem. I don’t like this reality. I don’t want to accept it. I want to find a way around it because I want to be able to blog about whatever pops into my mind with no fear.
My joints ache so much now that typing is an issue, and writing by hand is only possible for short pockets of time. On the topic of joints, walking is an issue. My knees are locking almost every time I get up, or walk. I’m 17 and I feel as if I were 90. My memory is, at times, disturbing. A month or so ago I began to get sores on one of my fingers. Then the finger blistered. After a few days of wondering what had happened, I realized that I must have burned myself. But I have absolutely no recollection of doing that! About the same time, I was reading in bed and buckled in pain when I tucked my legs up. I threw off the blanket, only to see a bruise the size of a golf ball on my leg. By the next morning it was a nasty, black and blue tennis ball. Again, I have no memory of doing anything to my leg.
My mom has actually expressed concerns over my cooking alone. At first, I was angry. Shocked. Disbelieving. Then I slowly remembered how it must feel to watch this happening to someone you love. I’m still shocked, but I’m being careful in the kitchen. If I can’t chop something I don’t do it. If I can’t open something, I ask for help. If I’m shaking too much to get the bread out of the oven I ask someone else to do it. I can’t control when I’m going to forget about a pot on the stove, however. But, cooking is another outlet of mine. And I can’t give it up. That too is something I want to find a way to make work.
The other night my mom and I were watching So You Think You Can Dance. I love this show. It’s always slightly emotional for me, because I was a dancer for years (ballet, tap, and jazz). Seeing the dancing makes me itch to twirl across the room, or have the opportunity to express the very essence of a piece of music. Dance is so touching, and so powerful. It truly opens a person’s soul. But, the other night instead of being moved by the dance I was stunned by the dancers themselves.
After a week of grueling practices and performances before the judges, the girls decided to go swimming on their afternoon off. They were all smiles, jumping into the pool and laughing. They showed no ill effects. If didn’t already know it I never would have guessed what they had just been doing for hours on end. I can’t imagine not sleeping in that situation. I was so puzzled that I paused the show (I LOVE my DVR) and asked my mom, “So… normal people can do that?!?!?!”. Apparently they can. I would kill to have energy like that. I’ve decided that I want to be able to do that. I want to live like that.
I know that I may never have that life. I can barely imagine having that life. But, I also know that without a dream in mind, my motivation won’t be nearly as purposeful. I’m a dream-fueled person. I run off the fumes of inspiration and dreams. And I won’t let this disease take those away from me.
And, here concludes my venting session for the morning! Thank you, so much, for your support. It means the world to me. Look out for my next post – I have some great news, and some new treatment updates to share!
Peace and healing, molly
“Dreams are like the paints of a great artist. Your dreams are your paints, the world is your canvas. Believing, is the brush that converts your dreams into a masterpiece of reality.”
Oh my. It’s almost unnerving to be sitting here thinking about what to write. It’s been so long, it almost feels as if I’ve kept things from you. How deceitful of me! {grin. Me, deceitful? What?} Know that it’s nothing personal. I’m not on a blogging strike, nor am I intentionally ignoring my lovely blog in favor of Twitter.
It can all be summed up to one word. Just one – Fatigue. Yep, the never-ending complete and utter physical exhaustion that is almost impossible to explain to anyone who hasn’t experienced it. “Fatigue? Oh, so you’re just tired right?” Yeah. Sure. Think being driven over a few times by a semi, right after getting the wind knocked out of you by a really fast and invisible soccer ball only to find out that you have the flu on top of it all. Yes, that right, the flu. And now you’re absolutely parched but you’re just so tired that it doesn’t feel worth it to reach across the table for your glass of water. Maybe just thinking about drinking will deliver that punch of H2O to all those cells that need it. No? Oh well, it doesn’t matter really. Chances are I’d forget about why I was supposed to be thinking about it anyway.
Needlessly I feel the need to explain that I’m not just tired. I’m wiped out. Drained. Of late, I’m even too exhausted to correct the people who assume that I’m simply tired.
I’ve also been herxing on and off for the past few weeks. A few good days here and there, but overall I’ve just felt “off”. Something doesn’t feel right. All the dots aren’t connected in my connect the numbers picture. Doing homework is hard, and that’s coming from a girl who actually enjoys doing homework. I know, it’s weird, but something about having it taken away from me when all I wanted was to be well again and go back to school just makes it mean something. It’s an accomplishment. And, I do take pride in what I complete and turn in. But lately, I’m falling behind. My to-do lists are longer at the end of the day than when I started. Somehow, that doesn’t seem very productive!
My mind feels like sludge. Every single joint in my body aches. It’s as if I’m stuck in sand, trying to climb out. Or maybe it’s more like the creaky Tin Man in the Wizard of Oz before Dorothy oils his joints. I’m not sleeping well. And my poor stomach still isn’t happy!
Yes, my friends this all points towards the inevitable. It’s Fall. My dreaded season. Everything gets worse from now until February. Fall and Winter are my worst months; I spent the rest of the year recovering from them and preparing for them to happen all over again. At least, that’s what it feels like.
Fall is here. If it wasn’t below 40 degrees outside and almost midnight I’d scream it. Maybe not from a rooftop, but I’d scream it all the same.
And yet, as each day that becomes more and more apparent, I’m trying to stay hopeful. This year might be different. This year I might break that pattern. This year is the first Fall/Winter that I’ll be treating the Lyme and other various infections beating the crap out of my body! Yay for that!
So, on that positive note I’ll leave you for the night.
Peace, healing, and sweet dreams, molly
“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” ~ Bill Cosby
School begins in a week. I checked, it’s the 8th. For weeks I’ve put off looking up which day it is that I start my senior year, hoping, and yes perhaps clinging to the idea that if I didn’t know the actual date my lingering last weeks of summer would last longer. If that piece of logic escapes you, please don’t ask me to explain further. I’ve often been told I have a very original sense of logic. I like it, it suits me just fine!
As I sit here writing this I’m up at my cabin for the last time this summer enjoying a relaxing weekend escape. My dad jokingly kicked my mom and I out of the house on Friday morning, taking the opportunity to work on a few projects around the house. My brother’s wedding is sneaking up on us in a few short weeks and we’ve got plenty to do still! Obviously my mom and I had no arguments and gladly escaped! The weekend has been a wet one, with rain almost every day. Since rain = pain I’ve been a little uncomfortable, but it’s been nice all the same.
We didn’t arrive here until late Friday night, but luckily I’d packed enough gluten-free snacks for the car that we didn’t have to stop to eat on the way. We’ve gotten sick too many times trying to do that. We’re learning, slowly but surely. Then as we ate our small dinner that night we caught the amazing Packer’s pre-season game!! Yes, it was amazing. I screamed so much I was afraid I’d go hoarse. You’ve been warned – I am a Green Bay Packer fan, and I’m proud of it. And yes, I do live in Minnesota the new home of Brett Favre. But, I’m not going to go into that here – I really just enjoy watching the games, not talking about the politics.
Yesterday we spent the day inside, snug and cozy watching a few Alfred Hitchcock movies (my favorite!) and reading our books. What would a vacation be without some reading time? Then, a delicious dinner and we spent the evening listening to my cousin play at a local bar. That was so much fun! I love listening to him play, and it was fun to hear some new songs from him. I’m impressed with myself too though. The bar was loud, had ceiling fans, and cigarette smoke. All of which I have issues with! But last night, I had a great time and only had a few minutes where things seemed overwhelming. I spent much more time laughing, smiling, and clapping than I did thinking about how I was feeling. It was nice to get out, and let go for a night. Usually I’m very aware of how I’m feeling at any given moment. And it gets tiring, ironically enough.
Today I did feel a little worse for the wear, sleeping in late and waking up in pain. But today was an important day. Today was the day we decided that I would start the Cumanda tincture I’ve talked about. I’m not sure what to expect, a huge herx or nothing. Either way, I’m taking a super low dose of 1 drop twice daily to begin with. On Wednesday morning I’m going in to have my co-infection panel. We’re hoping that the Cumanda will help bring out a reaction in my immune system that will show up in the blood test.
I’m praying, for what I’m not exactly sure but I’m praying about it all the same.
It’s been a nice weekend, but it ends tomorrow morning. Back home and back to summer homework for me. I’m thankful we got the chance to make it up here once more though. I love it here. It’s very grounding for me. I seem to get lost in the time I spend here. It slips by so fast! And I’m glad I got the chance to spend some time with my great grandparents today too. One small hiccup- it was too cold to swim! This is August still, I should have been able to swim! But, no. The weather certainly didn’t cooperate.
Peace and healing, molly
I'm in the Lyme-Light 
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