Odes to Lyme victims
Living with a chronic illness changes your life in so many different ways.
One of the ways in which I’m still trying to manage is budgeting my energy. “Just like you budget your money, you need to budget your energy.”, a friend of mine told me recently. She worded it so well, and it’s been quite a realization at how true those words have become in my life.
Prior to Lyme, going to three different family events over one weekend was normal and while tiring, didn’t wear me out to the point of needing a few days to recoup.
Now, I have to really think about how much family time or extra events are ‘too much’ and learn to say “no” without feeling guilty. Even trips to the store or naturopath need to “planned” for me. No more quick jaunts about town to pick up a card for someone or buy that needed birthday gift. I just get too run down and need to factor in my eating schedule, too. Putting off eating or not eating properly drastically impacts how well I feel. It seems to take longer to get back up to “normal” for me if I miss meals, don’t eat or drink as typical for me when I’m at home, or if I miss my supplement regime.
One week recently, I had a wake, funeral, dance recital practice, and dance recital show in the span of 4 days. In my heart of hearts, I knew it was going to be a long four days, and I’d pay for it later, but I just couldn’t say no to any of these events. I had lost a childhood friend suddenly, and it was my daughter’s 5-year dance recital, complete with a trophy. Saying ‘no’ to these events that were truly important to those involved just wasn’t an option for me to even consider.
But true to form, all this activity was too much for my tick sick blood and body to handle. Even though I tried to pack enough food and drink to keep up my energy, just zipping around from place to place took its toll on me. I had a day’s break between the practice and the actual recital, and boy, did I need it!
Memorial Day weekend just passed, and it is one of my favorite weekends in the year. As a child, I loved going to my town’s parade, with the bands, the old cars, the never-ending Brownie troops, and the veterans. I would proudly wear my red, white and blue each year, waving a flag and clapping and singing along to every patriotic song played. I still do this each year, and my ten-year old daughter has been encouraged as well to wear her colors and wave her flag proudly alongside me.
My husband has been helping with a Veteran’s float in a neighboring town for many years now, but this year, the parade was cancelled due to weather. I hate to admit it, but I was relieved. We had already hosted people at our home that Saturday night, and then we went to another family gathering on Sunday. I knew I needed a day to just recoup just from those two days, and I really didn’t have the energy for another all-day affair on Monday.
We will be going to the Memorial Day parade this coming Sunday instead. Thankfully, I will be able to rest up for the picnic food preparation, early morning drive, parade watching, and then the picnic that follows.
We’ve already been invited to a July 4th picnic. And my sister hosts one as well, although hers, I just found out, will be on the 2nd. We’re already planning on bowing out of some activities that weekend so that we can at least enjoy time with friends and family without me becoming completely worn down.
I need to budget my energy right now, like my friend so aptly stated. Next year, I hope it to be a different kind of budgeting!
Yours in Lyme Adventures,
Dedicated to my family
I’ve been noticing little glimmers of love and generosity since Lyme has become my best friend and worst enemy. It’s hard to keep a positive outlook at times when you notice new symptoms cropping up, a reminder of how clever and persistent Lyme disease can be. But finding generosity in my life is one of the ways I use to keep myself from going down that dark rabbit hole and never coming back up to feel the sun.
I recently received free samples of soap from two different companies. One is Dr. Bronner’s, and the other is a local company here in Connecticut called Soap What. I had sent out emails asking for coupons so I could try their products, and they quickly responded to me with free samples! I’ve been keeping a loose “soap study” on the different soaps to see how my body reacts. So far, the peppermint Dr. Bronner’s leaves me feeling tingly, but the mild baby one, their shaving soap, and the lavender bar seem to agree with me. I put the bar of Citrus and Herb from Soap What in my bathroom. It smells really nice and doesn’t seem to bother my hands when I wash with it. I’ll continue on with my little study and hopefully find some more positive results and options.
I’ve received so many cards, gifts, and gift cards from co-workers and family. My daughter made me a cute card the other day that I put by my bedside. And I also received two letters from former students last week that brought a smile to my face and made me chuckle. I enjoy these little mementos. They remind me that I need to continue to spread these little joys with others. Taking the time to send little cards and notes to family and friends is a small action that can really lift one’s spirits.
My family and extended family, on both sides, have been very supportive, always asking how I am doing, even though I “look good”. And that’s the paradox with Lyme. You look good, but inside, you can and often feel lousy. Eating for me is a chore and not a joy anymore, since I am so limited to what my body can handle. Family events can be challenging on my system, but life goes on. I don’t want to be sitting on the bench if I can be out their playing, even if it’s not a home run inning for me at every game.
We had some family here the other night for a little get together. (My husband is the youngest of ten children from an Italian family, so even just a few of his siblings here makes for a big party!) One of his sisters brought a dairy and sugar free dessert for me to try. When we went to her house the next day, she had purchased a special kind of rice chip for me as well. I really appreciated those little gestures. It just affirmed to me that people are thinking of me and are generous with their time in their own way.
When an extended family member was leaving that picnic, she expressed some encouraging and supportive words to me, handing me a Mother Mary stone from Lourdes she dug out of her purse. She told me to rub it and say a little prayer to Mother Mary to help me. I did as I was told, even though I am not officially Catholic. (I think I may go get one of those stones to keep with me. It may just be one of those generous links that will help get me well.)
It’s these little twinkles of love that occur that signal to me of the importance of family connections. I speak with one of my aunts quite regularly, either on the phone or through our Scrabble games on the computer. We check in with each other about our lives and share so many laughs that my stomach hurts. One of my sisters has been sending recipes for me to try, and I keep in touch with other family members via email as well. My niece and I had a lengthy conversation recently about LUSH, a company that makes all natural makeup, skin, and hair products. We’re going to take a trip to the mall soon as she is a LUSH expert! My mother visited a few weeks ago with plants for my garden, and when I visit my parents, they always want to feed me, making sure to ask and prepare foods I can eat. And my husband has been a great support through all of this. From taking over cooking and cleaning, to buying extra meat for my meals, to checking in each day to find out if I need anything , to just giving a hug or kiss, he’s always there for me and with me when whether I’m having a good day or a more tired one.
It’s the little moments of generosity that make living with a chronic illness a bit more bearable.
Yours in Lyme Adventures,
I just found out yesterday that a friend from middle school, Alex, died suddenly on Saturday.
She was an only child, and I can only imagine what her parents are going through. She was married with two boys, one in elementary school and one in high school. She volunteered at her sons’ schools and supported her sons’ love of hockey and baseball, and her younger son’s fashion sense. She also taught religious education, and was always a happy Mom and wife. Their lives are forever changed. Her parents, her sons, and her husband have had the gift of time with her, which can both heal and hurt all at once.
When I struggle with the few foods I can eat, the inflammation that is in my body, the itchy or painful or red skin reactions I get from eating a “new” food, I get frustrated. The need to constantly maintain my blood sugar testing and track my meals and water intake is tiresome. Taking my numerous supplements and remembering which ones to take and when is difficult, and sometimes I make mistakes. And being on the hunt for a new doctor or remedy breeds hope and helplessness.
But then I remember that my tick sick blood pales in comparison to what Alex’s family must endure today and in the future. It can always be worse.
Rest in peace, Alex. You will be missed.
If it’s one thing that people don’t like to feel, it’s the feeling of being abandoned.
When you are diagnosed with any severe or chronic illness, that feeling of abandonment can compound your suffering so much that you lose sight of the fight that you’re in. The final bell seems to be looming over your head, and yet you don’t have the energy to get up and give that final knock out punch that is so desperately needed to end your anguish and misery.
I’ve been so fortunate to have many people in my corner. My husband has been my number one cheerleader: encouraging me to keep looking for new avenues to heal,taking over many of my responsibilities early on when I was literally bedridden, and even picking up the pieces on better days when I still need to get back to bed. He’s gone to doctor’s appointments with me when he himself hasn’t felt well either, all the while carrying the burden of his own job and other responsibilities of our family and extended family.
Family members have been very empathetic as well. Phone calls, emails, cards, and hugs have all helped to boost my spirits. When visiting my parents, they ask what I’d like to eat and supply me with huge hamburgers and glasses of water, knowing how sensitive my system is towards any “normal” diet that includes carbs, fruits and dairy. When my mother in law was ill in the hospital before she died, she asked how I was feeling. That was such a moment for me, and one that I won’t forget.
My co-workers surprised me with a beautiful basket filled with cards from my students, some snack items, a beautiful handmade prayer shawl and wooden cross from Bethlehem, and several gift cards with very generous amounts on them to use while I am home. I’ve received numerous cards from people as well. My boss has also been very understanding of my need to be home instead of coming back to work prematurely. All of these people have really help me stay connected and not go down that dark pathway of abandonment.
I’ve found solace in other victims of Lyme as well. Misery loves company, but when you are dealing with an illness that is like the invisible man in your system, you need all the company you can get. I stay positive by writing about my illness, adding bits of my own sarcasm and humor to my prose. I don’t want to make anyone more miserable than they already are in dealing with their own issues. I want to share my own misfortunes that I’ve brought on myself to help others avoid some of the pitfalls I’ve fallen into. For example, I recently made nut bread with almond flour because I wanted some kind of “fun food” to eat, and I thought this would be a healthy alternative. And it would have been….if I didn’t react to nuts! But that’s what Lyme does to you…it makes you do things without thinking clearly about it. I also want to share my successes and insights through my writing to those who may or may not understand the complexities of Lyme.
My medical doctors have tried to help me, but their expertise hasn’t been enough to rid me of this nasty bug that is still ravaging my body and trying to steal my spirit. I’ve found that while they haven’t abandoned me per se, it seems like they don’t really understand all my issues in full color, resulting in lingering symptoms and a lack of supportive guidance to get me treated properly.
I’ve found more help from my naturopath and dietician for reasons unknown to me. All I can really point to is that they seemed to have listened to everything I’ve said, and I’ve done a lot of homework prior to meeting with them as well as afterwards to help get me to the head of the class in this university of Lyme.
Medical abandonment is a striking place to be in, but it is also a catalyst to push forward and find new pathways to healing. I’d often heard of naturopathic care, but I never really knew anything about it. I was always a little leery of it, thinking that it could amount to a little bit of fairy dust and luck and not real science. But that is the kind of care I’ve been used to: go to a medical doctor, explain your symptoms, and you’ll get some medicine to get better. At one point in my illness, I became so ill with what seemed to be the flu. When I went to my primary doctor, he did prescribe an antibiotic, which helped my flu-like symptoms, but it also caused a new symptom to erupt, which had to be addressed with yet another medication. Should I have abandoned my medical doctor initially and gone to my naturopath? I don’t know.
I’m not ready to give up on the medical community as a result of my experiences just yet. But I am willing to discard my own ill-informed views. I think that being open to many viewpoints and finding the right combination of therapies is a better approach than simply relying on one type of treatment plan that is commonly accepted. That is truly the only way that I can get better and abandon this horrible illness called Lyme once and for all.
Yours in Lyme Adventures,
At the start of all of my medical adventures, I was so weary. Tired didn’t explain it and fatigue was the medical word out there, but that still didn’t feel right to me. Exhausted wasn’t quite correct, either. Weary seemed to capture some of what I was feeling. It didn’t matter how much sleep I got, I still felt as weary as I did when I went to bed.
We had a funeral service to attend in January in Rhode Island. I had just been diagnosed with Lyme, so I was really in the infancy of my learning about this illness. We planned on staying over night, and it was during this event that I actually didn’t sleep for a full day. My body was just awake. I didn’t feel weary, exhausted, or even tired. I took two melatonin pills that night to fall asleep because I knew my body needed the extra help to do so.
After I took my medical leave from work, I would try to do some of my normal routine and get up to make my daughter’s lunch and breakfast, then go back to bed for a few hours. I was that weary from just doing those two every day activities. It was mind-blowing to me. I was used to doing 3 or 4 things at once, and now I was reduced to being in my pajamas and so, so weary… All. The. Time.
I can remember thinking about the previous summer and how I would be tired, but not weary. I wished I could turn back the clock to those few months, but I knew that could never happen. When you’re sick, it doesn’t really help you to think back to when you were healthy. It just adds to your misery and confusion.
As a mother, and I think many are like this, I feel I need to be in charge of everything “motherly”, like food, clothing, homework, and cleaning. My husband had to take over much of these duties early on for me, because I just didn’t have the stamina to do any of my normal 492 motherly activities. At times, they weren’t done the way I would do them, but who really cares in the end? Just me. There isn’t a house police force inspecting how and when the laundry is done, nor is there a food inspector checking on how and when groceries are purchased. The leaves will get raked or just decay…who really cares? And the kitchen floor could use a good scrubbing….but it’s just going to get dirty anyway, right?
In March, I remember seeing some leaves by our back door that I wanted to rake. That half hour job put me on the couch for 2 hours! After that, I went to see a naturopath because I just couldn’t stand feeling like that after such a mundane activity.
I am feeling better now that I am seeing my naturopath, and I do see a difference in my energy level that I didn’t have back in January. But I still get tired as my body adjusts to its new chemistry, and I realize that I will need to be my own best doctor. When I need to rest, I need to do it, regardless of what other duties I think I need to complete. My health will only improve when I take care of myself.
No one likes to be tired, but it beats being weary.
Yours in Lyme Adventures,
When I first believed that I had lyme in December 2015, I talked to numerous people about lyme and what to eat. A close girlfriend of mine had a very severe case of it and still struggles with it daily. One of the things I heard from her was to eat gluten free products. Lyme feeds on sugar, and gluten transforms into sugar. So I began to stock up on gluten free bread and crackers. I even bought gluten free chocolate chip cookie mix to try out.
It was so early on in my illness that I was having inflammation constantly, and I wasn’t eliminating anything but the obvious carbohydrates like regular bread, cookies, crackers, and sweets. We like breaded chicken and pork chops, but for me now, that meal was out. I bought gluten free bread crumbs to try out one night. It was a pain cooking with two different types of bread crumbs, but I knew I couldn’t pass off gluten free as regular to the keen eyes and stomachs of my daughter and husband.
The gluten free bread made by UDI’s wasn’t bad…as long as you toasted it. So, I’d make it w/cinnamon or peanut butter in the morning, or use it on tuna fish sandwiches for lunch.
And the cookies were very sweet…a yummy delight to me!
I was still eating cheese at that point, so I’d try to eat gluten free crackers with them. Again, not too bad, but still facing issues with inflammation.
I was also eating fruit. I had read somewhere that pineapples have a compound in them really good for combatting inflammation. Great! I loved pineapples and I was dealing with inflammation– a win-win in my eyes. So, I bought Dole canned pineapple already cut. I made sure there was no extra sugar—I was starting to become a label reader at this point, and I knew sugar was not good for me by my own body language.
But even eating the pineapple or a regular apple for a snack would give me inflammation. After a while, I realized that fruit is all natural sugar—and my body for some reason just couldn’t handle it. So there went the fruit. I was also drinking lemon water daily, thinking that would help to cleanse my body. It would be three months before the light bulb went off in my head: LEMON IS A FRUIT—maybe that is why I was also having a constant stinging in my system every day!
Ok…with the fruit gone, I still felt like I had some options. I loved vegetables, and I could still eat my tomatoes, cucumber, and mozzarella salad for lunches and snacks. So, I began eating that religiously in the morning for my snack. It was a favorite, although I’d still have inflammation, however slight.
I was steadily becoming a label reader, checking carb numbers on anything that was packaged. I knew that anything higher that 5 or more carbs per serving would cause my inflammation to perk up. At one point, I compared the gluten free bread to regular bread, and I soon discovered that the carb content in both was virtually the same! And since a carb is a carb, my body couldn’t handle either type of product. So…that cut out the gluten free market from my diet.
As the months ticked by and I made my way to my first naturopath appointment in March, she took me off cow cheese as well. Oh man! That hurt. I loved cheese, and it was a natural source of protein! Now, the options on my plate were really getting smaller. Since she prescribed some heavy duty supplements, I was also directed to drink at least 64 oz of water a day! That seemed like so much I would float away! But she knew more than me about my health needs at that point, so I began tracking my food and drink intake as instructed, and drank the 64 oz of h2o a day. I had a Tervis tumbler I had gotten for work which held 20 oz of fluid…and as the days ticked by, I could drink one of those at one meal, so 60 ounces or more became no big deal.
In addition to the naturopath, around the same time I went to a dietician because my meals were becoming less and less in terms of calories and content, and I knew I needed help. She instructed me to get at least 4-6 oz of protein with each large meal. And that definitely helped me feel satisfied and not get lethargic during the day. She had also suggested that I begin cooking in bulk to have meals on hand for myself, since my diet was so compromised. So I decided to go to the library to find some cookbooks that would help me. All of mine were for regular people meals…not tick sick people!
I took out a few books that I thought might be helpful, including a Paleo slow cooker cook book. The next night, I went through the book and found a few recipes to try out. Stuffed peppers sounded good…it was made with things I could eat and using the slow cooker for something other than chili would be great.
I know that early on in my illness, I had read on some website about foods to avoid, and yet it never occurred to me until after I made the stuffed peppers to recheck that list!
I made the peppers the next morning, and kept the residual turkey and pepper meat mixture to eat for dinner. I took a little taste of it after cooking it on the stove before stuffing the peppers, and noticed a little buzzing in my system, but I didn’t think anything of it. At dinner that night, my husband and daughter had pasta and sauce, and I ate my turkey and pepper mixture. Within an hour, I was so itchy under my chin and my neck and my stomach! I couldn’t believe it! It was so bothersome I had to take a Benadryl.
I checked that list again, and sure enough: no tomatoes, potatoes, peppers, or eggplant! So much for the stuffed peppers!
Every day there are new symptoms and things to learn around lyme and my body. I am truly a walking science experiment. And now I know to keep a copy of foods that I can’t eat in plain view! Experience is the best teacher they say…for me, it can be a painfully itchy one!
Yours in Lyme Adventures,