A Day in the Life of Chronic Lyme Disease

In honor of Lyme Disease Awareness Month, I would like to help shed some light on Lyme disease by showing what a typical day living with chronic Lyme disease looks like. For each and every person with Lyme disease, their day looks entirely different than another person with Lyme. There are many varying degrees of disability and any and all combinations of symptoms among those of us with Lyme disease.

Click here to go to A Day in the life of Lyme disease with Heather.


A Day in the life of Lyme disease with Alyson**
My day starts at 7:45 AM--that's the absolute latest I can sleep in before my husband has to leave for work--and now it's my job to take over getting my 7 year old ready to catch the bus. I rarely sleep well at night and I have great difficulty waking up. If I'm in a lot of pain, my kind hubby will bring me breakfast in bed to minimize my trips downstairs.

Going up and down the steps is painful and uses up a lot of energy. There have been times when I have to crawl or scoot up or down the steps. There have been times when I've had to be piggy backed. Even worse are the times when I've been too exhausted for a piggy back and have had to be carried like a baby.

After I get up, it's time to gauge my current energy level in order to figure out what I can do as far as getting my son ready for school. My husband always packs our son's lunch, because I'm usually too exhausted or too forgetful to do it. Usually, I can walk the 200 feet there and back to the bus stop, but sometimes I can only sit on the porch and watch my son get on the bus--knowing that all too soon there will come the day when he's too big to have his mommy come to the bus stop. Because my memory is shot, my son often ends up without his lunch (Mr. Picky will have to settle for hot lunch), and a handful of times, I've managed to send him off without his backpack.

After the bus comes, if I'm feeling strong enough, my three year old and I will take a very small walk around the block to help keep my muscles from atrophying since I have to spend so much time in bed. We come home and I think about all the things we will need (drinks, snacks, etc.) and we trudge upstairs for as long as he will stay up there. I prefer to be upstairs because the bathroom and my bedroom are upstairs.

After we go upstairs, I put on a movie for my son and get in a hot epsom salt bath. I stay in my clawfoot tub for as long as my son will sit still and watch his movie (he's very active, so not usually long). One day a week, he has a play-date with Grandma for a few hours so that I can rest. A few days a week, he goes to a relative's house from about 9 AM til 2 PM. Once or twice a week, we have a babysitter that comes to our house so I can rest as needed, but still be able to spend time with my son. This babysitter cleans our pigsty-of-a-house and usually cooks up a big batch of chili or soup that I can eat for the week for lunch.

Because I can't keep weight on, I'm always hungry, so after my son goes off for the day, I usually heat up some leftovers and settle myself in with a movie and 2nd breakfast. Sometimes I get back in the tub again for a longer soak and if my muscle pain is bad, I'll add in peppermint and eucalyptus oil. I take my morning medicine, check to see if I need to call anything in to the pharmacy, and rest, rest, rest.

Around 2:00, my wild three year old comes home and I have approximately four hours to make it until my husband will be home from work. The battle is on: Alyson vs. Lyme disease vs. Motherhood. It's a close race and Lyme disease doesn't play by the rules.

3:45 P.M., my 7 year old is home from school. Although lately he's been very moody, he is generally a very easy child (unlike his brother!!)-- he's a bookworm, he's good at entertaining himself, and he's always content to go outside and play with friends until we call him to come home.

6:00 P.M. Husband is home! Phew! I made it, but usually just barely. I feel so guilty doing the absolute bare minimum required to take care of my children. I hate putting them in front of so many movies, but I remind myself that it's only temporary. I will get better....right?

Hubby is home and back I crawl into my bed. I rest, feeling guilty thinking of my exhausted Houdini of a husband downstairs--who has just worked a very, very long day--scrambling to make dinner for two picky kids and a wife with a very restricted diet, while at the same time trying to occupy a very naughty/hyper/cooped up three year old.

Dinnertime! I can usually sit at the table so we can have a meal together as a family. Then, back I go to my bed. I listen, sometimes teary eyed, as my bone-tired hubby gets the grumpy three year old ready for bed. My job is to read him his bedtime story. Sometimes I muster up the strength to play a game with my 7 year old, even though I'm unbelievably exhausted and in a lot of pain. I'm missing out on so much and my heart breaks each and every day....

8:30, both kids are now in bed. I'm desperate for some time with my husband, but my dear, overworked husband is desperate for sleep! There is never time to clean up the house. I take my nightly meds and pray for sleep. My husband falls asleep easily, and I listen to his soft breathing, while I toss and turn trying not to think about how I will make it through another day like this. I try to stop looking at the clock around midnight...

It's a hard life, but it's all I've got right now. It's very difficult to show others just how bad it is. I do have some good days here and there, and some days I even have energy enough to get out of the house for a short trip-- generally to my favorite place on earth: the barn! Occasionally I will bump into people when I go out for dinner or to the bookstore, and it strikes me that they have absolutely no idea just how bad things are. They see me out and about, and since I don't look sick, they have no idea what life with Lyme disease is like. Well, friends, this is it. It's not very pretty, but like I said, it's all I've got right now.

**I wrote this a while ago, and I'm now doing much better now. My typical day no longer looks like this. However, since this was my normal for well over a year, I wanted to show the world what it looked like. Though I can function again now, the odds are very high that I will relapse again (not to be negative; chronic Lyme is just very unpredictable).

***If any of my Lyme friends want to join in on this post, send me a link to your blog entry and I will add it.

Adventures in Lymeland: Lyme Friends, I Need Your Help!

Fellow Lyme friends, this is your last chance to join in on this! Please leave me a comment and let me know if you're interested in participating. So far, I only have one taker! Click on the link below.


 Adventures in Lymeland: Lyme Friends, I Need Your Help!:

I Am Feeling......WONDERFUL!

I am so happy to report that I am feeling wonderful! I can function at about 90% of what I used to before Lyme disease pulled the rug out from under me. It feels like nothing short of a miracle!! I can cook, bake, ride horses, drive, watch my kids, keep up with the house, go for walks, etc.

Now if I'm having a "bad day," I am no longer referring to my pain levels--I'm now referring to the normal stress of chasing after a very rambunctious three year old and his moody older brother. I love the chaos of being a mother to my two boys and I wouldn't trade it for the world. I'm on cloud nine being well enough to take care of them and to do all of the things I love again.

Operating Heavy Machinery At the Touch-a-Truck Event

Ctrl/Alt/Delete Me

Antibiotics have been my body's version of ctrl/alt/delete. They rebooted me and now I'm up and running again. Chances are, when I stop antibiotics, I will likely have to hit ctrl/alt/delete again with more antibiotics. Like many others, because my Lyme disease slipped undiagnosed from early-stage Lyme disease to late-stage Lyme disease, I may have to hit ctrl/alt/delete several times throughout my life to keep my Lyme symptoms at bay.

For many years, "antibiotics" was a dirty word to me. However, when I found out I had chronic Lyme disease, it stopped being a dirty word pretty damn quickly when I learned that it would pave the road back to good health. When it came down to choosing between having my life back versus never regaining my ability to function without the bone-crushing pain that had become my new normal, the choice was a no-brainer to begin the controversial treatment for late-stage Lyme disease—long-term antibiotics.

Many doctors won't treat chronic Lyme disease with long-term antibiotics because of the fear of creating antibiotic-resistant super-bugs. That's a very scary thought! However, when you have a disease that is so painful that you often can't walk without agonizing pain and are sometimes too weak to even talk--except when you are being treated with long-term antibiotics--the benefits far outweigh the risks. Quality of life must be taken into account.

For many of us with chronic Lyme disease, antibiotics are like a dam, holding back our symptoms. Long-term antibiotics are a frowned upon solution for our disease among mainstream doctors; however, no one has yet to come up with a different treatment. One "solution" even suggests that what we have doesn't actually exist! Most of us struggling with this disease know all too well the look of absolute disgust from medical professionals outside of our Lyme doctors--often times when our disease lands us in the ER--when they find out that we are "those" people--the lepers of modern-day society: those of us being treated with massive doses of antibiotics for a disease that's steeped in controversy.

When early-stage Lyme disease progresses into chronic Lyme disease, it is frequently (and I'd love to see statistics here) due to the fact that doctors failed to recognize and treat the disease in its early stage--causing the disease to progress into a painful disease that could have been prevented. The gross misdiagnosis and mishandling of Lyme disease--a disease that has been well-known for over 35 years--is absolutely mind-boggling.

Precious time is being wasted arguing over whether a chronic form of the disease exists, when that energy would  be better channeled into teaching doctors how to correctly identify this rapidly spreading disease--not only in its late-stage, but especially in its early stage when it can be treated and cured. If most cases were caught in time, when Lyme disease is generally easily treated with a short course of antibiotics, this would eradicate the problem of difficult-to-treat late-stage Lyme disease patients who can only function on open-ended antibiotics. Problem solved, right? Wrong.

Once I became totally debilitated by the symptoms of Lyme disease, my doctor, and six other doctors after him, couldn't recognize my symptoms for what they were--Lyme disease. How sure are you that your doctor could?

Misdiagnosis, long-term antibiotics, controversy, super-bugs....it's enough to make your head spin (and if you have Lyme disease, your head is probably already spinning!). I wish someone would hit ctrl/alt/delete on Lyme disease once and for all. But until that day comes, I keep swallowing down my handful of antibiotics, because those controversial little pills have taken away a monumental amount of the bone-crushing pain of this disease and have given me back my life, my ability to function, and the ability to take care of my two little boys.

I've Been Slymed

Try as I might, over the past few days I haven't been able to finish any of my blog posts. I have about 6 working drafts in progress on various different subjects, yet I can't finish a single one of them. It is absolutely driving me up the wall! I get rolling, when all of the sudden, Bam!  Progress comes to a screeching halt and I suddenly find myself reading the same sentence over and over. It's like my brain has been coated in a thick fog preventing me from.......UGH....I have no idea what I was going to say...

My brain feels like it has been SLYMED by Lyme.

Finding Out You Have Lyme Disease

                ** This post is dedicated to my new Lyme friend, Melissa **



Desperation, fear, anger, uncertainty, hope, relief--finding out you have chronic Lyme disease will do a number on your emotions. I remember clearly the phone call from my doctor, "Your Lyme test came back positive." That day will forever be etched into my memory. I remember perfectly the relief, the tears, the anguish, THE FEAR!

If I could scoop each one of you up into my arms and hold you tight, I would! I would tell you what I wish someone would have told me about Lyme treatment: It's going to be hard--perhaps the hardest thing you've ever had to do in your life--but you are going to fight with all you've got, and you are going to do it! Believe in yourself and NEVER GIVE UP!

One of the first and most important things you can do (if you don't already) is start loving and respecting your body--it is going to be fighting very, very hard for you. You may feel incredibly angry and disappointed at your body because you are sick and unable to do the things that you want to do. That is normal! But if you can change your focus to what your body is doing for you, instead of what your body can't do, it can make a huge difference in your attitude. Your body is fighting a war for you even though you can't see it. Most of us would never talk to a loved one the way we talk about our own bodies! Be proud of your body!

You have likely figured out that everything about Lyme disease is controversial. Sadly, there are going to be people in your life that don't support your diagnosis. (This very blog was inspired by one of those people!) Though it is very, very hard, the quicker you can distance yourself from the negative people in your life, the easier your recovery will be for you. Surround yourself with people who are kind and compassionate and who will lift you up as you go through treatment. Often times, the negative people are well-meaning family members, and you may have to make some tough decisions. Your health is worth it!

A very helpful thing to do is to find a Lyme disease support group-- whether in your city, online, or both. There are many wonderful blogs out there about Lyme disease. I have linked several on the right to get you started. Again, I caution you to try to avoid surrounding yourself with negative people. Many people with Lyme grow very bitter about being so sick and you yourself may be struggling to keep your head above water. Surrounding yourself with negative people who are battling this difficult disease can make it hard for you to keep up hope. Look for people who inspire you and give you courage! Remember, also, that reaching out to others who are struggling with Lyme can help you, too.

I won't sugar coat it, Lyme disease treatment is hard. But fighting to get your health back is worth it and it is possible. There are going to be a lot of bumps in the road. There will be times when you want to throw in the towel. But it should be said again, NEVER GIVE UP HOPE! The best thing I ever read about having a chronic illness was this, "Never, ever give up: Your breakthrough might be right around the corner!" (I wish I could remember where I read that so I can give credit to the wise person who wrote it!)

Lyme treatment involves a lot of trial and error. There is no one treatment that works for everyone. This can be very discouraging, but with each new medicine that you try, try to remind yourself that it could be the one that brings you back to health. You never know until you try!

The beginning of treatment is hard, because you have to face the fear of the unknown. It's likely to be a long and slow journey, but you have to start somewhere! So I leave you with this quote from Lao Tzu:

“A journey of a thousand miles must begin with a single step.”

Peace Does Not Mean...

Wisdom Tea

Yesterday, I walked almost a mile. Not once, but twice in one day! After feeling so wonderful for a few weeks now, yesterday I was filled to the brim with hopes and dreams. On walk number two, I found myself dreaming....I can have a horse again, soon.....I can go backpacking this summer....I can fulfill my ten-plus-years-long dream of going to school to become a massage therapist....

Today started off well. I went to the Farmer's Market; I ran some errands. I got very tired, though, and my vision started getting funky, so I knew it was time to come home and rest. Then it was time to take my meds. This is day three of Bactrim. A good friend of mine had a wedding shower this afternoon and I had to scrape myself off the ground to get there. I made it, but really, who was I kidding?? Conversation is nearly impossible when I feel like that!

I came home and I crashed in a heap; I barely made it. The words I had cheerfully piped to friends this morning at the Farmer's Market cruelly echoed through my head, "I'm feeling great! I'm feeling a lot better! I had a breakthrough in treatment!"

Like a thief in the night, Lyme disease steals your dreams away from you. It takes them and it tosses them out into the ocean, where they quietly disappear--down, down, down to the bottom. Lyme disease takes your dreams and throws them off a cliff, shattering them into a million pieces, right before your very eyes. Lyme disease smacks you in the face over and over again. It kicks you while you're down.

It is so hard to go from one extreme to the other. I know this part is temporary: I am Herxing. I believe with all of my heart that good days will come back. I know I can get through this...But right now I'm just really angry. I will pick myself back up and dust myself off like I always do, but I'm not quite ready to do that yet. I just want to sit quietly with my feelings for a bit. I am what I am, and right now that is angry.

And funnily enough, as I gaze down at my tea, a little slip of paper catches my eye. I have forgotten it is wisdom tea: There is a tiny quote dangling over the edge of my mug. It reads: May this day bring you peace, tranquility, and harmony. Thank you universe for that tiny little hug of comfort when I need it most. And just like that, my anger has vanished...

Grow Where You Are Planted

Lyme Friends, I Need Your Help!

In honor of Lyme Disease Awareness Month, I would like to help shed some light on Lyme disease by showing what a typical day living with chronic Lyme disease looks like. If you have chronic Lyme disease and you'd like to participate, please write a blog entry walking us through your average day with Lyme disease.

Email a link to your blog entry at adventuresinlymeland@gmail.com and I will put them all together. Please help me spread the word to other Lymies and stay tuned for "A Day in the Life of Chronic Lyme Disease!"


Thank you!
Alyson

Surviving Chronic Illness

I know I've said this before, but it's worth saying again: It is incredibly hard to be sick day after day. But being chronically ill does not mean that you cannot find happiness and peace in your situation. Lyme disease ripped me straight out of the ground--uprooting me from a life of normalcy, and replanting me on what felt like an entirely different continent. I had two choices: learn to grow where I was replanted or whither away...

Having a chronic illness doesn't have to mean a miserable life just because it's a different life than you expected. You, and only you, are in charge of which way you choose to look at it. When your body doesn't cooperate and you can no longer do the things you want to do, it is frighteningly easy to let yourself get sucked into a deep pit of despair. It is no surprise that many people become depressed when battling a long-term illness.

You might be housebound, or even bedbound, but the sooner you can understand that you are still useful and that you still have a purpose in life--though it is likely much different than you thought it was going to be--the easier it is to pull yourself out of that dark place. If you can no longer do what you could do before you were sick, your goal is to find your new purpose, because chronic illness, like a tornado, sucks you up and abruptly drops you in a very unfamiliar place. Your purpose is still there, it's just not where you thought it was. You are different after the tornado of your illness and you are on a new path now. "New" can be scary, but it can also be a very beautiful thing.

As a plant grows, the weakest and oldest leaves die off. This gives the plant more energy to focus on its strong and healthy leaves. In order to grow stronger and taller in your present life and live in harmony with your illness, you have to let go of the bitterness and negativity you've likely picked up along the way from losing your health. I had to accept that I can no longer do many of the things I love to do. That was the most difficult part of my journey so far--even harder than coping with the pain--and I had to go through the stages of grief before I could accept my illness.

My life does not look like what I thought it would now, but it is a good life--full to the brim with many blessings and wonderful friends. Living with an excruciating and controversial disease is not easy, but it is quite possible. My heart has bloomed with beautiful flowers that have grown out of nuturing the seeds of hard work that were/are required to live in harmony with chronic Lyme disease. It has not been an easy path for me, but my walk has been made more bearable by wildflowers of encouragement planted along the way by friends and family.


I would love to hear what you have done to survive your own chronic illness or what you have learned from loving someone with a chronic illness!

Julie's Fight Against Lyme Disease

Lyme friends,  Julie needs your help! Please click the link below to go to her blog:
My fight against Lyme Disease: It's Lyme Disease Awareness Month:

Through the Eyes of a Child

 

This is both the most beautiful, yet, at the same time, heart-wrenching thing to me. It is quite surreal to see myself sick through the eyes of my oldest child. My son, Miles, brought this picture home to me yesterday. They had a Mother's Day contest at his school, and he was really hoping to win it for me, but he was sad to report that he didn't win (as though that could make me love it any less!).

Miles is 7 years old and he does not ever talk about my Lyme disease, though I know it must be incredibly hard for him. He is the most mature little boy for his age and he always has been. He never participated in imagination-type-play, because, as he stunningly put it to me at around 3 1/2 or 4 years old, "Mommy, why would I pretend that? It's not real and it won't actually happen!" This same child raised over $1,500 for Haiti last year after the earthquake, of his own accord, by selling his artwork! Of course I am biased, but he is a very special little boy!

Though he's very intellectual, expressing his feelings is a huge struggle for him. What strikes me most about his Mother's Day picture is that I'm smiling at him with a heart over top of me, and he is frowning at me, although he has a heart in front of him, too.  He is extremely stoic for a boy of his age, so in a way, it is a relief to see that he found a way through his art to express his sadness over my illness. 

Despite the melancholy tone of the picture, it's indescribably beautiful to me and I proudly hung it up on my wall. It is the most wonderful Mother's Day present I could have ever received from him! Next Mother's Day, I hope to receive a picture just like it, but with my son smiling and his mama no longer in bed!

Going, Going, GONE Lime Green For Lyme

Yesterday, May 1st, kicked off Lyme Disease Awareness Month! Many people having been raising awareness by turning their Facebook profile picture lime green. It's been so amazing to watch my Facebook News Feed light up lime green by friends and family who have been touched by my Lyme journey. It gives me such inspiration to keep fighting this painful disease! I hope many others will also be inspired to go lime green for Lyme!!

In other news, I've been back on antibiotics for almost a week now, and my body has adjusted to my new medicine quite well. I'm definitely Herxing, but it's tolerable and I've still been able to function. Tomorrow, I add in the third medicine: Bactrim--the antibiotic that knocked my weight down to a very scary 100 lbs and left me so weak that I had to take an unanticipated treatment break.

For the past few weeks now, I've been able to function amazingly well. It's so wonderful for me to be able to get all of my ducks in a row to gear up for tomorrow's big day. I'm following the school of thought of "expect the best, but prepare for the worst." I know I can do this! I'm much stronger now, and all of this lime green love has given me extra strength and encouragement for my fight!