What We Wished Our Loved Ones Knew About Our Chronic Illness

By Jenny Lelwica Buttaccio

(Note: This article originally appeared on Pro Health on October 25, 2015. www.prohealth.com)

It’s difficult for our loved ones to fully comprehend the suffering we endure with a chronic illness. Our lives often change drastically– confusing the important people around us because we don’t always look sick. My hope for this article is that you, our loved ones, would gain some insights into what it’s like living with a chronic illness, and find ways you can support us as we navigate this often scary situation.

Here are 5 things we wished our loved ones knew about our chronic illness:

1. The illness is here to stay.

A chronic illness is constantly recurring. There are ups and downs, periods of improvement and decline. For those of us living with any chronic disease, we are never truly free from it. We usually don’t discuss the day-to-day fluctuations in our symptoms because we don’t want to alarm you. You may not be aware we battle a set of invisible symptoms the world never sees.

Recovery from any illness is tricky. It’s important to remember this process takes an immense amount of time, effort and has no official timeline. Through trial and error, most of us eventually find a treatment strategy that yields some improvement.

2. There is no quick fix or magic pill.

We know it pains you to see us suffer. We know you would do anything to help us get well. With that being said, your suggestions to try more vitamin D, get more exercise, try new cleaning products, volunteer, see this brilliant chiropractor/doctor who cured one person of said illness is rarely ever helpful.

While we appreciate the time and effort you took to research our illnesses, the suggestions you offer (and I say this with love) are almost always too basic for where we are in our journey with a long-term health condition.

Let me explain.

We will see more doctors for our chronic illness than most people will see in a lifetime. We spend exorbitant amounts of money trying to get well. We investigate countless treatment options– even treatments that may seem too alternative or like medical quackery to people. We are willing to try almost anything to get better and we follow every feasible (and sometimes unconventional) lead.

We immerse ourselves in Facebook groups, Instagram, Twitter and blogs. We communicate with people who have our same illness from around the globe. We ask a lot of questions to our fellow chronic illness pals. We compare treatments. We watch as some of us get better. We take notes on what seems to help and what doesn’t. We are sponges soaking up every piece of information we can get our hands on. We live and breathe the hope of getting well 24/7– we learn there is no quick fix to getting better. Realistically, progress is a slow process.

3. Expect our lifestyle to change.

As time goes on, a few symptoms improve, some become our new “normal” and others we get better at hiding. Our stamina, strength and ability to tolerate pain have limits. We adapt our lives, pace ourselves and cautiously allocate our energy to finish our daily activities. Sometimes, we overdo it on one day and leave nothing to spare for the next. If we are saying “no” to your invitations for family events or social outings, don’t take it personally. We want to be there, but we have already used up our energy reserves or have reached our pain threshold for that day.

4. Asking for help is a necessary life skill for us and not a weakness.

A few weeks ago, I encountered a tiny, but still terrifying, mouse in my kitchen while home alone. After a three-hour standoff with my landlord and a runaway mouse, my house was in shambles. My physical and emotional energies were quickly draining. Fighting back tears, I collapsed in an exhausted heap on my chair. The ability to finish the cleanup by myself was gone.

So, I did something I had never done before. I posted a message on Facebook asking if anyone had a couple of hours to spare on a Sunday afternoon because I needed some help. Eventually, help came in the form of three friends and a little dog. My dogs were kept occupied by a new playmate, friends mopped my floors and the night ended with a Chipotle dinner party. Simply asking for help made a tiresome day better.

Some of us have learned that asking for help is a sign of weakness. It’s ingrained in us that we must always manage on our own. Many of us wrestle with the reality that we have lost some of our independence. The truth is that asking for help is a life-skill necessary for us to effectively manage our condition. We will probably ask for assistance from you throughout our continued health challenges.

5. We value our relationships and losing them when we get sick really hurts.

Having a chronic illness is very isolating. We spend less time out and about and more time at home conserving our energy. With a spirit of creativity and persistence, our friendships and family connections need not completely slip away. We may have an illness that requires care and attention, but we find new ways to enjoy our lives.

Our relationships don’t need to be one-sided either. Please share your lives with us! We can laugh with you, cry with you, celebrate and support you. We make great friends and companions even if our activities shift from wine, parties and fancy restaurants to a cup of tea on our couch, while binge-watching Netflix.

I hope this list gives you a better understanding of what we need as we continue the fight for a better quality of life. We don’t say this enough, but we value your presence in our lives. Your support makes us stronger.

More Than 43,000 Pills Later: A Two-Year Treatment Update

Saturday, October 24th, 2015

Today is my second anniversary since beginning treatment for Lyme Disease and multiple other systemic infections. I dreamed of this day. In my mind, I expected some fanfare, a sign to mark this milestone in a very long fight. In two years, I have swallowed upwards of 43,800 pills, supplements, and herbal tinctures. I make no exaggeration. I expected to be in a different place– to be well by now, back to work, and maybe even thinking about starting a family. However, today is a decidedly ordinary day in my life with Lyme.

In two years, I have spent nearly $40,000 in out-of-pocket medical expenses. I wonder how many other illnesses drain a person of their life savings and leave very little to show for it. I don’t know the answer to this. Maybe there are more, but I can only tell my story– the story of someone trying to crawl her way to the top of the highest mountain. If I close my eyes, I imagine myself reaching the long-awaited summit. I hold out hope that I will finish this climb. I am steadfast in my determination.

In two years, my cell phone alarm has rung approximately 5,840 times alerting me to take my medications. I don’t think I have ever missed a pill. It’s habitual now. Can you be a professional pill-taker? If so, I am one. It’s absolutely second nature. I eat, sleep ( as able) and take my pills– 730 days in a row and counting.

In two years, I have taken around 1,095 detox baths, 1,095 sauna sessions, and 730 coffee enemas. No, you’re eyes aren’t blurry. You read that correctly. Coffee enemas. The funny thing is that I only drank one cup of coffee in my entire life. I really hate the taste.

But, I am willing to try almost anything if it will help. The baths, sauna sessions, and enemas give my body’s natural detoxification processes a boost at removing the toxins accumulated from killing multiple infections and ingesting several medications. It’s a necessary, but inelegant part of recovery.

Some of my medications are harsh on the gut, liver, kidneys and other organs. Blood draws are a regular part of my life to make sure we are not causing more harm than good. As patients, we joke that getting well and managing our symptoms equals a full-time job. I guess it’s not really a joke since it’s actually true. Restoring my health is the most effortful task I have ever faced.

I hear rumors that I am well. Someone mentioned it to “this” person, “this” person then told ”that” person, and finally, “that” person told me that I am doing great. I am flattered people think I am doing so well, but the reality is much less glamorous.

More Than 43,000 Pills Later…

I am not cured, healed or even “well” yet. Despite two years of aggressive treatment, I still struggle every day. To quantify a good day, I function at around 40% of my normal. That means roughly 60% of my day requires me to rest. However, most days are not 40% kind of days yet. This is still better than where I was a year ago. For that, I am happy.

While my pain has decreased, my memory is better and my sleep has improved, crippling exhaustion is the invisible symptom that troubles me the most. This is not the type of exhaustion that comes after working a long day. No, “sick exhaustion” is in a category all to its own. My energy drains and my body becomes too depleted to get out of bed some days. It’s tired from this relentless, intrusive fight. Infections still run amok underneath the surface. Maybe it’s due to the facial yoga exercises I’ve been doing, my new silk, exfoliating mitten or a super healthy diet, but my illness rarely shows on my face. I continue to have ups and downs, moments where it seems like remission is in reach, and periods of going backwards. This cyclical symptomatology is the very real nature of living life with a chronic illness. Thankfully, the setbacks are less severe than they used to be.

Treatment will continue to be aggressive for an undetermined amount of time. I sometimes get asked if I am angry about having to go through this. Most of the time, I am not. I passed the point of feeling like my body betrayed me and grateful that I have a body that refuses to give up. Another person– a different body– may have quit a long time ago. There have been moments of immense joy and self-discovery in the last two years. I live for those moments.

Here’s to another 43,800 pills, unexpected moments of joy and healing milestones. Although this journey is sometimes overwhelming, I will continue to pursue my healing with faith and persistence.

Thank you all so much for allowing me to share my story with you these past two years. To my husband, family, friends, and even strangers, your encouragement sustains me along this weary road.

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Exactly three years ago today…

Looking back at this pic from three years ago, I choked up a bit. I may “appear” okay, but inside my body, a serious war waged on that had me fighting for my life. What many never knew is that I am leaning on Tom because I was too weak to stand on my own. My hair is long and uncut because I was too sick to endure a trip to the hair salon. My glasses were broken because I stepped on them 4 months prior and was not strong enough to go to an eye doctor. I was bedridden 90% of the time and remained that way for 18 agonizing months. After this picture was taken, I immediately had to lie down. The girl in this picture knew she would fight an invisible battle for the rest of her life– a battle that would rarely ever show on her face. I am so glad this girl was brave, had perseverance and most importantly, never gave up. ‪

New Pumpkin Patch Pic

#‎TakeThatLyme‬ ‪#‎NeverGiveUp‬