I can weather the storm
Never say die
I’ve been down this road before
I’ll never quit
I’ll never lay down, mm
See I promised myself that I’d never let me down
I’ll never give up
Never give in
Never let a ray of doubt slip in
And if I fall
I’ll never fail
I’ll just get up and try again
Never lose hope
Never lose faith
There’s much too much at stake
Upon myself I must depend
I’m not looking for place or show
I’m gonna win
No stopping now
There’s still a ways to go, oh
Whatever it takes, I know
I’ll never quit, no no
I’ll never go down, mm, mm
I’ll make sure they remember my name
A hundred years from now
When it’s all said and done
My once in a lifetime will be back again
Now is the time
To take a stand
Here is my chance
That’s why I’ll…
“I will do whatever it takes to get better,” says a note card on my bathroom mirror. I put it there to remind myself that I WILL fight, I WILL get up, I WILL win.Each day mocks me however, as the pain increases and the side effects of Lyme such as excruciating aches and pains in all my joints and muscles, a cluster of headaches that never go away, debilitating exhaustion, little-to-no energy, and the psychological urge to give up. These are only a few symptoms.
When I decide to fight every day and every day it seems like I lose, my self-esteem seems to vanish as though to say, “whatever you are doing, it isn’t enough and whoever you are as a person, you aren’t enough to beat this.”
I fight to maintain a positive attitude and, thanks to 14 years of fighting these battles, I am often able to catch these low self-esteem thoughts before they drag me down to the dark pits of discouragement.Everywhere in my apartment, I have notecards reminding me why I fight, why I fight every day, and why I must continue to fight even if it means battling for years and years.
Even if we fall, as we all do, we do not fail. I had to share the song above as encouragement, and point out those special lines.
Falling does not mean failing.
The side effects of Lyme can change your body in many ways, including both weight gain and weight loss, as well as an altered change psychologically that can leave you wondering if you are really YOU because, well, you don’t FEEL like you.
Good self-esteem can be altered by these changes, unfortunately.
I’m certainly living proof of this; three years into getting sick, my body had amazingly packed on a good 30 pounds. There was no reason for this, considering I was barely eating after trying every diet under the sun after cutting out bread, drinking gallons of water daily, juicing fresh vegetables for my “meals,” cutting out sugar and preservatives and “indulging” my body in liver and colon cleanses on a regular basis. Throughout this, I was also navigating the early years of being a teenager and the pressures I felt as a young woman.
I had horrible, horrible self-esteem. It took years of pain, an eating disorder, and the truly miraculous rescue of my dog (who then in turn, rescued me from my eating disorder) to bring about a sliver of appreciation for the person I had become.
Now, as my weight again fluctuates however it wants, thanks to the intense Treatment I am currently undergoing for Lyme, my self-esteem also bends to and fro as I ask myself this question:
is it more important to look and feel good, or to be healthy?
Lyme forces us to answer. Often we have to choose the answer that, at the time, is best for our bodies…
just not the body we see in the mirror every day.
- The physical aspect of chronic suffering is, well, physical and can therefore be dealt with through medications, supplements, exercise, diet, etc etc etc.
- The psychological aspect of chronic suffering is h*** on earth.
You seem to have no control over the swirling despair that sucks up your mind like a hurricane, dumping you emotionally on a pile of s*** once it decides it has had enough for the time being.
Don’t believe me? I dare you to read on.
I dare you to walk in my shoes.
I dare you to even try to understand the mind of Lyme.
Approximately one hour ago I was caught in the sudden psychological wave that some might call a panic attack or anxiety attack, but to a Lyme brain is nothing less than emotional warfare.
My brain began to buzz slightly and, having over a decade of experience in these matters, I knew by the nausea, increased heart rate and onset of tears, Lyme had taken over my mind and I now had to fight like h*** to bring my psychological and physical senses back to a normal state.
“I’m sorry, I’m sorry, I’m so sorry.”
The words began pouring out of my mouth after I suddenly snapped and raised my tone to a frightening degree when responding to a loved one. The words were out before I could stop them, angering me to no degree as I fell into the pit of despair and depression that accompanies these attacks. Tears fell out of my eyes without my knowledge. My hands began to shake. My breathing became shallow. I began to see gray descend over my vision.
No. No. No.
I can fight this. I can’t stop it from happening, but I can fight this; this attack is not caused by my inability to deal with reality! It is caused by Lyme and the herxing that accompanies the enormously difficult treatment required to flight chronic Lyme disease. In short, these psychological outbursts of despair are caused by PHYSICAL issues.
I began my attack on my attack
by finding a dark corner and quickly putting my feet up as high as possible. My father, once trained to be a fighter pilot, taught me how to deal with the sensations of defying gravity while pushing G’s as your blood rushes to your feet instead of your head…he taught me how to deal with these attacks, the sensations of which are very similar to mastering a fighter jet:
- – concentrate. focus. tense all your muscles, harder, harder. now let them go.
- – tense your muscles again, harder, harder, harder, forcing the blood to your brain. get you blood back there, allow your brain to fight this, allow your brain to fight the overwhelming psychological odds.
- – tense again, keep your feet up if you can, release.
Having trained myself in mediation, relaxation and hypnotic techniques, I focused my eyes on one spot, focus, focus, focus. Tears, unbidden, fell from my eyes.
My gaze glazed over as I maintained tunnel vision. Now, meditation. Remove your mind from the situation. Place yourself elsewhere. Concentrate, tense, release, breathe, tense, release, breathe, cry.
Fifteen minutes later, I stood up. Checked my pulse: normal. Checked my breathing: normal. Checked my emotions: still under attack.
Slipping on shoes, I walked into the frigid air in shorts and a light top, shocking my body temperature as I maintained tunnel vision and deep concentration, calling on self-taught breathing techniques to accomplish this.
I spent approximately ten minutes in the cold, walking, tensing, breathing, concentrating, breathing, breathing, meditating.
Then, I lost the control:
a sob escaped my lips and I saw gray and black engulf my vision as new tears flew from my eyes. My breathing hitched; where was I? My tunnel vision, concentration and meditation was lost completely. I don’t know how, but I know why.
Thanks Lyme, you really reward a girl who has struggled against you and fought battles such as these constantly. My body is riddled with you, riddled with Lyme, chronically suffering from the aspects of this detestable disease.
I’m not a hero like those serving in the military as soldiers. But d*** if I am not a soldier against Lyme.
My personal journal concludes here. Those with Lyme, you know how these emotional battles end but never end. You know how these scenarios, whether to this severity or not, are faced constantly when going through Treatment. You know. It’s h***.
Those without Lyme, please realize that I’m chronically ill and have been for over a decade. My physical body has deteriorated at a horrific rate during that time, yet I still fight with all my might and power to receive healing from this disease, at least to a maintainable degree so I can live as a young adult in a realistic world.
Please realize, read and understand this if nothing else:
I dare you
to go through what I just did, and what thousands of other young adult Lyme patients go through as well. Let’s see how well you deal with the
PSYCHOLOGICAL REALITY OF LYME DISEASE.
After my last post (10/19/13) regarding loss of sleep, I have had more than a few nights of restless tossing and turning, willing myself to fall asleep but failing quite miserably.
Sleep is like a secret weapon for those with chronic illness:
it silently allows your body to heal and gives you strength to get through the next day.
When sleep evades you, your body goes back into a “fight or flight” mode, using energy you do not have while withholding the healing you desperately need. Other symptoms seem to double in strength after the sun slowly rises on your restless soul with a force and power greater than you can overcome.
For me, anger and tears often follow these nights. Why can’t my body settle into enough of a peaceful mode for just a few hours? Why am I fighting my body on this issue after engaging in this same fight all day? Why can’t my body realize that it is draining me of energy that, after engaging in war throughout sun-filled hours,
is running on empty?It’s easy to get frustrated when sleepless nights are common. Sleep is SO important when you are trying to heal your body from the beating it has taken during the days, weeks, months, or years of illness. When my body or mind is restless and hours pass without allowing me to fall to sleep, I get up and try to fill the next hours with books that I love to read, computer work that I enjoy doing, or movies/TV shows I enjoy watching.
A famous figure I admire and try to emulate once said,
“I can walk through h*** with a smile.” That quote however, takes on a whole new meaning for a LYMIE.
“Walking through h***” is possible, yes; but for those with illness or chronic disease, “walking through this new CLASS of h*** called THE DAILY REMINDERS YOU HAVE NO CONTROL OVER THE PAIN OR PSYCHOLOGICAL AGONY“ is the reality we face as we experience the layers of this dark place surrounding our bodies and minds.
How do people go to sleep? I’m afraid I’ve lost the knack. I might try busting
myself smartly over the temple with the night-light. I might repeat to myself,
slowly and soothingly, a list of quotations beautiful from minds profound; if I
can remember any of the d*** things. ~Dorothy Parker
What, that feeling of actually wanting to et out of bed in the morning and immediately get into the swing of life instead of heading straight to the couch?
1What a wonderful commodity and how incredibly helpful that would be – how do I get some??
All LYMIES, no matter how long they have battled, know the feeling of an exhaustion that follows you around and leaves you unable to complete sometimes the most basic of activities.
It’s humbling, defeating, and discouraging.
Today I did two loads of laundry and took a shower.
It was a good day!! I had energy to do several very small, insignificant activities on life’s “must-do” list.
Yesterday I got some mail organized. Oh it’s not filed yet; but it’s on the floor in a neat little stack waiting for the day I devote what little energy I have to putting them in their proper place.
Every day I, like so many other LYMIES, choose a few small tasks to try and accomplish.
Some days we fail; some days we succeed.
Every day WE TRY.
So powerful but elusive, a night of good and decent sleep is a rare gift when you are going through Lyme disease.
Volumes could easily be filled in regards to sleeplessness and its constant presence when struggling through Lyme disease. However, it was my choice to fill the following post with an entry on this subject, written a year ago in my personal Lyme Journal.
Words from the past are testimony that the writer understands the subject they have chosen to discuss. My Lyme Journal holds countless entries written during the hours when my body should have been sleeping, resting, and healing. Not only is it difficult to fall asleep due to the amount of pain experienced with Lyme, it is hard for your body to sleep through the night and wake up rested. Sleeplessness is a symptom of Lyme disease and is, as one health practitioner put it, like a black widow; it effects all other areas of your life when it comes and goes with a will and maddening power all its own.
It’s barely 4:00am and I’ve been awake for a while. I woke up as if my alarm had gone off wondering where the fire was – if I was in pain or had perhaps forgotten something and my body or mind was trying to remind me. But no, there was nothing. Just another morning where I was reminded that no matter how diligent you are with your schedule of food, water, and pills, your Lyme symptoms can still flare at any given moment.
All the muscles in my back, shoulders and neck ache. My right upper arm and right hand feel as though I have been typing madly on a typewriter all night. My right pointy finger barely wants to move…I’m doing some light yoga and deep breathing to try and get my body and muscles to relax so hopefully that will help. I just bought brand new PosturePedic pillows for my bed but considering the tension in my neck, I may need to invest more money into pillows and look into other options.
Money, money, money…someday, someone will need to explain to me why it costs so much to get better. The sicker you are, the more it costs. That seems so wrong – it IS so wrong.
Freaking h***! Why can’t I just sleep???
It seems so simple that when you first read the title of this, the next installment in “THE LOSSES OF LYME” series, you may well have laughed.
But think about it – with Lyme disease, our bodies can quickly fade into a state of intense fatigue with multiple symptoms such as headaches, muscle or joint pain, joint swelling, as well as a digestive system that breaks down in record speed and a psychological state that threateningly swirls around us as suddenly as a dust storm, surprising us…
Leaving us to wonder…
Wonder why our bodies seemed to have suddenly turned against us, attacking parts of us from our head to our toes with ferocity…
Wondering why the supplements and medications and treatments that we endure seem to make us worse, and not better. The phrase,
“you will get worse before you get better,”
begins to take on a sarcastic ring in our head after a dozen doctors say that very phrase, and then add to it “well, your body just won’t respond to my (perfect, complete, studied) treatment…you should get some help for that,” when we report that the “worse” has not turned into “better.”
Chronic Lyme patients face the bitter truth that their health, something that most in the world take for granted, is disappearing into thin air with the speed of an F-16 aircraft.
So precious is our health that when we lose it, we face battles that many in the world are never called upon to face.
Having been chronically ill for nearly 14 years I have been through so many “treatment plans” I truly couldn’t even give you a number. I’ve been on every diet under the sun, every medication used for this disease, every multiple medications used for this disease, alternative medications that are recommended, etc, etc; however (despite the ferocious cost that I’ve choked down for the chance that maybe, maybe this will work) these did not “do the trick” and allow my body to begin to heal itself.
I’ve tried Chinese Medicine alternate therapies. I’ve tried
natural IV therapies,
pulsing medications with natural treatments like those I just indicated.
In fact, for a year and a half, I pulsed medications WHILE driving an hour each way to do two natural IV’s a week (natural meaning they were filled to the brim with high amounts of multiple vitamins), then returning home and completing three Sauna therapies, 1hr each, as well as doing three Colonic Therapies EACH WEEK.
will go to EXTRAORDINARY lengths and use AMAZING AMOUNTS of strength
that physically they do not possess but mentally, they hold onto with stubbornness.
→ BUT HEY… ←
Let’s take all of my blabbering away and look at something else. Something that tells a thousand words with one glance; a photo of what it takes for a Chronic Lyme patient to attempt with all their might to reverse that incredible loss: their health.
In fact, why not tell a few thousand words?
This entire counter has been dedicated to the requirements for a particular treatment for a chronically-ill Lyme patient from a Doctor.
This counter cannot even fully represent all the items required for this treatment; although carefully organized (as seen by the papers taped in front of each pile), the overall number of items and the mass of piles seen gives you an idea of what a chronic LYMIE can go through to get better.
Oh, and by the way, this entire counter represents more than $5000.00 worth of items.
««« In the photo to the LEFT:
On the counter you saw above, these elements were included: two types of gloves (sterile and non-sterile), alcohol swabs, and masks.
Have you ever purchased these items? A chronic LYMIE, going through particular treatment for their fragile body, pays for all these items in order to be extremely careful to keep germs and bacteria away. Both could easily damage nerves, weaken the digestive track’s functions, and allow toxins to build up in their body.
»»» In the photo to the RIGHT:
An entire calendar has been dedicated to tracking symptoms that a chronic LYMIE experiences as they go through both life’s pain-filled days and particular treatments. These symptoms are important to record because they not only indicate how the LYMIE is progressing, or not progressing, but the info allows the Doctor to see how their treatment is working within the body of their patient.
In the blue pitcher to the RIGHT, a LYMIE can keep track of exactly how much is spent DURING any treatment they are going through… just from experience, after just one treatment these pharmacy receipts often add up to several thousand dollars.
In this treatment, in which all needed articles have been laid out on the counter, Saline is required. See those tubes wrapped in plastic that are rather falling out of the box marked with an “M” ? Those are Saline Flushes. Three boxes full of Saline Flushes. (Don’t ask the price),
Next to the three boxes of Saline Flushes you will notice a pile of tubes encased in plastic wrap.
Ever heard of IV Infusion Treatment for chronic Lyme? I have. I’m familiar with the treatment! Those packages are extra IV tubing that will be used on a daily basis during this particular treatment. They hook to whatever IV treatment has been prescribed by the Doctor, and then screw into your body like a nut into a bolt.
LYMIES go through so much just to get better!!! Believe me! It’s incredible what treatments a LYMIE can endure, even though they are chronically ill, in order to simply restore their bodily health to the point where they can FUNCTION.
You know, I love tea. It’s relaxing and comforting, especially on a rainy day when curled up with a book.
But tea can be a part of a treatment program for a chronic LYMIE; the boxes to the right contain Green Tea (high in antioxidants and greatly recommended to a LYMIE in the “prescription” of several cups per day), as well as Kambucha (another tea that cleanses your system and provides natural support to your body, but from my experience, tastes awful! If you must drink this truly wonderfully healthy tea, get some healthy sweetener).
Also, tea that contains Magnesium with a fruity flavor is recommended to calm your body and nerves in order to sleep (often called “Sleepytime Tea”). Tea that contains natural herbs to help “awaken” your foggy, Lyme-filled brain can also be recommended every morning.
Countless other teas contain nutrients and supplements that give a LYMIE a bit of a break while on treatment: instead of popping another dozen pills, multiple cups of tea can be made throughout the day.
Ah, gluten-free food.
Chronic Lyme patients, even when not going through intense treatments, often switch to a Gluten-Free diet. Although they may not be sensitive or allergic to gluten, the diet allows their digestive system to better process the nutrients in other foods and in supplements.
I have been on a gluten-free diet for several years now. Oh, I cheat sometimes; I’m not actually allergic to gluten. But after switching to this diet I can tell you, I noticed that I was not having as much stomach aches and pains and my colon found it easier to process foods down the remainder of the passageway.
As a chronic LYMIE… I will take what I can get, as far as any relief for my body as it struggles to regain its footing within a healthy world.
as it always produces a chuckle within my throat and often, a smile on my face.
Isn’t the message exactly what we all want? The straight poop, or, if I can interpret for us chronically-ill LYMIES,
the straight path towards a better life and better health?
We may be sitting on the toilet now, but our goal is to stand up some day and walk away on our own two feet, flushing the past away as we go.
Treatments, treatments, treatments… how many have I been through? How long have I sat on the toilet, crunched down because of exhaustion, fatigue, low spirits, extreme muscle and joint pain, endless migraines and restless sleep?
I want it STRAIGHT – I want the straight answer.
Every chronic LYMIE does.
Review the thousands of words above, contained in each picture;
do you not see the lengths we LYMIES go to in order to try,
with no guarantee of success,
to get better
and regain our health?
Some call these hobbies; some would refer to these as extra activities in their life. Regardless, chronic illness often robs you of something you LOVE to do. Letting go of these hobbies can be extremely difficult and create a scar on our soul, knowing that our lives are changed, knowing that we have been robbed of things we love.
– I took figure skating classes during my teen years and have been nearly every book on the market detailing the directions for forward skating, backward skating, jumping, skating on the edges of your blades as you create a short dance with turns and twists.
I loved it. I loved every moment of it. I have never been sports-oriented or gifted in athletic activities. However, figure skating was, to me, like dancing; my teacher once told me that I “looked like a ballerina” because I was so determined to perfect each skill I learned. “You have no speed though,” my teacher added. It was true; speed required extra strength, a requirement I failed to possess.
When I was 24 years old, I made up a board that contained my “SIX-YEAR GOAL” and posted it in my bathroom so it would constantly remind me of where I wanted to be in life, by the time my 30th birthday came along. One of the goals I wrote was “being able to figure skate again.”
I have met other young people with chronic Lyme who have had to give up athletic activities dear to their heart, due to the amazing gift they had in this area. Giving up something you love can burn a hole in your heart as your realize that you have absolutely no control over this decision.
I have never been a crafty person. I have no patience for sewing, knitting, etc, although I was taught all these skills as a young girl. The ONLY craft I do truly enjoy, however, is scrapbooking. I’ve created scrapbooks for each of my sisters, using photos that contained, for the most part, just that particular sister and myself. I created a beautiful scrapbook for my parents one Christmas that detailed the lives of their daughters as they grew into young women. Being a perfectionist meant spending at least one hour on each page of the scrapbook.
Three drawers contain all the scrapbooking supplies I obtained: colorful pages, specialty pages, stamps, glitter that would melt onto the page, specialty scissors, specialty stickers…they all await the day I can again take up this activity. For now, even the thought of spending an entire hour of my day on a page in a scrapbook makes me tired. I’d love to do it; however, I have no control over the fact that I simply can’t at this time.
While there are so many others I could name, the idea is this: sometimes, hobbies fall by the wayside when health becomes all-consuming.
Unfortunately, this idea often becomes truth for chronically ill Lyme patients.
As mentioned in my previous post
(THE LOSSES OF LYME: BELIEVING IN THE POSITIVE),
the struggle to simply live life as a LYMIE has a tremendous effect on your outlook of life. It can get so unbelievable difficult and for good reason; with high levels of pain, muscle and joint aches, headaches, immune deficiencies and fatigue, the thoughts running through your brain easily tends towards a loss of hope and impatience to heal.
The last thing you want to spend energy on is making sure you have a bright smile for everyone you meet, an encouraging word for friends you talk to, and an ability to see the bigger picture.
It took me almost 8 months to find medications that helped my brain over the “hump” of the inability to view life with any kind of positive attitude. For a long time I thought this inability was my own fault. It took years to understand that depression and anxiety, by themselves, are illnesses; it took even longer to realize that my depression and anxiety came from chronic Lyme disease.
It isn’t easy, getting through these side effects. I truly believe that the psychological ramifications of Lyme can be more difficult to deal with than the pain that hits your body.
It’s so easy to focus on the negative – in fact, because of how depleted our systems are of basic nutrients and the ability to fight the battle that rages within due to Lyme disease and co-infections, the negative aspect of life simply surrounds us and threatens our souls, not to mention our individual personalities.
When I began putting quotes on my bathroom mirror, where I was “forced” to read them daily no matter how crappy my day was, the quotes began to shine through the glass… they reminded me that I, SHELBY, am NOT Lyme disease…yes, my LIFE is Lyme disease right now, but my INDIVIDUAL SELF IS NOT LYME. Because my personality is daily pounded by a tremendous force that hits my body with crashing waves every day, it has truly been good for me to see quotes or sayings that remind me that I still have a personality.
And it will, some day, shine through like a beacon instead of inching its way through the fog of pain and fatigue.
Below are some quotes that are totally me – they are my personality, they are my positive influence, they remind me I’m not a disease.
YOU are not your disease, dear reader. YOU are YOU, even if you don’t recognize yourself at times.