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Lyfestories: Incorporating Exercise Your Life with an Invisible Illness

Hi, I’m Zoe and I am actively autoimmune!

When I was diagnosed with lupus, I felt like I had lost control of my health and body. As a physiotherapist, I have always believed that movement is key and began to use exercise as a way to take back some control. Whatever the illness, injury or challenge, I believe exercise will support our health and recovery.

In saying that, I know how difficult it can be to motivate yourself to be active. Pain and fatigue, alongside juggling work, family or school plus hospital appointments and medication regimes; exercise can just seem unachievable. Health can fluctuate on a daily basis preventing consistency and progress. Here are my top 5 tips into how I incorporate exercise into my life with a chronic illness:

 

  1. Be kind to yourself!

Sounds simple, but I find adopting the right mentality about why I am exercising, helps to motivate me. A lot of social media is aimed at fit and healthy people, striving for excellence. With chronic illness, we are striving for different goals.

You are not exercising to punish your body. You are not a bad person if you miss a workout. And you should not feel guilty if you cannot keep up with what others either on social media or in the gym are doing. Find what feels good for you and be kind to yourself.

2. Set realistic goals

Find a balance between something realistic but challenging, and something you care about or enjoy doing. Our bodies cope with enough medically, so we don’t want to add to the stress it goes through!

I find comparing where I am and what I want to achieve is very different to the average #goals on Instagram. Realistically running 5k and doing 50 burpees are not possible at the moment. But to aim to get on my mat 5 times a week, whether for a gentle workout, stretch or yoga is attainable and helps motivate me.

 

3. Be flexible

“Be stubborn with your goals, but flexible how you get there”

Health is unpredictable (the number of days I wake up with my list to do and due to how I feel, I achieve zero of them). Add in spontaneous hospital trips and appointments and it can feel disheartening not achieving what you set out to do that day. I try to use these moments to mix up my routines, walk instead of run, stretch instead of workout or on really bad flare days, simply sitting and doing some breathing exercises. Frustrating as it can be, it is about listening to what your body needs.

4. Learn when to rest and when to progress

Lots of my clients used to ask me:

“If I feel unwell should I still exercise?”
“Do I stop if I have pain?”
“Should I keep pushing past fatigue?”

For those of us with invisible illness, if we listened to our bodies every time they were unwell, in pain, or fatigued we would never exercise. That being said, we can be too brave and push past symptoms we should pay attention to. It is a really difficult balance and often ever changing due to drug changes and disease activity.

The best way to find out your limits is to test them! I started very lightly and monitored how I feel during, immediately after and the next day. A gradual increase in activity is a lot wiser than getting stuck in a pattern of over exerting yourself and then needing days to recover.

 

5. How to push through

Everyone has bad days, either physically with raging symptoms, or mentally due to a lack of motivation or simply fed up. It is absolutely okay to have these days off! However, it is often on these days when I am feeling rubbish, getting on my yoga mat can have the biggest positive effect.

Sometimes it is the thought of exercising that can seem overwhelming more so than the workout itself. The process of getting in my activewear and getting out my mat can sometimes seem a big a task as washing my hair aka. huge. One method I use is to break down the task so it seems more manageable. I give myself a target of 5 minutes. If after 5 minutes, my symptoms are still horrible or worse, then I stop but more often than not, I carry on.

 

I hope a few of my tips helped, for more guidance or if you have any questions please reach out to me on @activelyautoimmune or on www.activelyautoimmune.com

Professional Patient

I have been labeled a “professional patient” before by friends and family. “PP” for short. Inappropriate humor fans, have at it. While this mostly accurate term is not the initial impression I want people to have, if the shoe fits.

Like it or not, the “PP” title has followed me for 13 years now. You may be asking how or why it was bestowed upon me. The short version? I have a pesky and mysterious autoimmune disease called Lupus. The long version? Well, it seems I also have nine lives. While walking to my car years ago, a drunk driver hit me and ran me over (not my best day!). This triggered the Lupus to reveal itself. Since my diagnosis, there has been a flurry of mini-strokes, a small brain aneurysm and blood clots. Throw in some heart issues, chemo and an occasional wheelchair for good measure, and you have my semi-condensed medical history.

These events happened at a young age and I had no choice but figure out how to navigate our country’s health care system and manage a chronic illness, all while attempting to lead a “normal life.” This was especially difficult in my 20s. I was clueless as to how one lives with an incurable illness and felt the medical community did not take me seriously because I was young (and looked even younger).

If you live with a chronic disease, you may be able to relate to me. You likely have a roster of physicians you see regularly, hospital experiences which have taught you a thing or two (or fifty), a small home pharmacy (who says we aren’t ready for the zombie apocalypse?), and an unending desire to get the best health care possible.Everyone wants to feel good. After all, it’s hard to check off our bucket list and accomplish life goals if we can’t get ourselves out of bed. So how can we obtain our best health and health care when battling a chronic and/or incurable illness?

I believe we can make further strides on our “best health care” journey when we feel empowered as a patient. Over the years, a variety of ways to deal with a chronic illness has been compiled in my mental Rolodex. In addition to learning how to be flexible and arming myself with a quirky sense of humor, I’ve also created a list of my favorite patient empowerment tips. These are shared below with the hope that you will receive better health care and improved health outcomes. I have even turned them into a snazzy, easy to remember acronym for you: HEALING. I hope they help you on your journey.

HEALING:

H — H is for health summary. This is vital and you should consider drafting one. Using a Word or Excel document, list your conditions, medicines, doctors, past interventions, outcomes, etc. This will come in handy when you have a new physician appointment, go to the hospital, or if you are unable to speak for yourself and medical specialists need to know your history (let friends or family members know where to find the document).

E — E is for expert. Become an expert in yourself! Research your condition/disease, medication and alternative therapies, and any clinical studies that may be taking place. You may be surprised at how confident you become when discussing your illness with others, once armed with the facts.

A — Accept support. Whether it is a spouse, family, friends or a caregiver, if someone is offering you support, please take it. Something as simple as a friend picking up your groceries, or driving you to a medical appointment, can help reduce stress. If you are in need of support, try searching online for local support groups in your neighborhood. This can be a great way to meet others who are experiencing similar challenges and situations.

L — Look for a second opinion (and do not feel guilty about it). If you are being told you have a disease or illness, you have every right to get a second opinion. By doing so, you may learn of additional treatment options or therapies that were not discussed by the first physician. Prepare well thought-out questions for the medical provider and have it organized and written down so you do not forget anything during your visit.

I — Involve yourself. Most physicians I have spoken to or interviewed in the past state they appreciate patients who work with them and take an active role in their own health care.

N — N is for “Saying no.” Do not be afraid to speak up if something does not seem or feel right. We have instincts for a reason.

G — Give thanks to outstanding medical providers. A simple “Thank you” can make all the difference to your physician and health care staff members. They do not have an easy job. If you have a physician who goes the extra mile to help you, let them know how much he/she is appreciated.

Follow Marisa Zeppieri-Caruana on Twitter: www.twitter.com/Lupuschickcom

Luck Fupus

If you were a child of the 80’s then most you likely remember Smurfette from The Smurfs. She was blonde, sweet, cute as a button, and had trademark Smurf blue skin. I was a real-life Smurfette; blonde, sweet, cute as a button and I had blue skin.

I was born with tetralogy of Fallot, a complex congenital heart defect comprised of 4 physical abnormalities that occur together, leading to low blood oxygen saturations causing cyanosis (appearance of blue skin). Without open-heart surgery, I wouldn’t make it to my 2nd birthday.

I had my first heart surgery when I was 6 months old, and went on to have three more open-heart surgeries by the time I was 6. Life at times was pretty touch and go, but somehow I managed to get through each obstacle stronger than the last.

It blows me away when I think about what my parents went through; practically going bankrupt to pay for everything, the surgeries, sleepless nights, endless medications, cardiac arrests, carrying an oxygen tank everywhere they went with me, holding blood drives, congestive heart failure, “tet” spells, pneumonia, cardiac catheterizations. It’s enough to make anyone’s head spin.

On top of obviously being physically traumatic, it all took a toll on me emotionally. Growing up I was always much smaller than my peers, I developed much slower both physically and cognitively, I had a huge scar going down the middle of my chest, and I wasn’t allowed to participate in any type of contact sports. I desperately wanted to play soccer, and begged my mom every fall to let me play (sorry for the guilt trips, Mom). I never quite felt like I belonged.

When I hit my teens, my trips to the cardiologist were only once a year. I still had physical limitations, but I was your normal, awkward adolescent with your usual teenage problems. I graduated high school, went away to college and got to experience everything newfound freedom had to offer. There were frat parties, boyfriends, pulling all-nighters to study, and even a few bad decisions here and there. Even with my limitations, those college years were the first time I felt like I fit in.

I graduated from college with a degree in nursing, and I quickly started working at the only place I ever wanted to work- The Children’s Hospital of Philadelphia (CHOP), the hospital where I had my heart surgeries and was still a patient. It was my way of giving back to the place that saved my life too many times to count. After getting a few years of nursing experience under my belt, I began working in the Cardiac ICU at CHOP, taking care of patients born with congenital heart defects. Do what you know, right? I felt like I could relate to them on such a different level because I had once been there. I was able to connect with patients, and instill hope in parents. I came full circle.

I’d love to say that my story ends there, but unfortunately, it doesn’t. Three weeks after we returned from our St. Lucia honeymoon in March 2008, my brand-new husband rolled over one morning, opened his eyes to see his bride looking like Shrek.

No, I wasn’t green with horns, but my face was round, huge, itchy and my eyes were practically swollen shut. From that moment became a months-long game of Mystery Diagnosis where I had blood drawn, was x-rayed, scanned, and scoped in every part of my body.

In August 2008, I was finally given a diagnosis- Systemic Lupus Erythematous (SLE), lupus, an autoimmune disease that can attack ANY organ system in the body. Because UV light can increase disease activity, my doctor believed that being out in the St. Lucia sun on my honeymoon triggered this initial flare.

It was like my body was literally rejecting my marriage.

Since my official diagnosis, I’ve received diagnoses of Idiopathic Thrombocytopenia Purpura, Behçet’s disease, Sjögren’s Syndrome, Acquired Angioedema, and Raynaud’s Phenomenon, which are all considered overlapping autoimmune diseases.

The diseases and treatments have wrecked havoc on my body; I’m currently on a regimen of two chemotherapeutic agents, a biologic infusion, steroids, and a number of other medications. Lupus has damaged my heart (lupus carditis), my lungs (interstitial lung disease), and my brain. Lupus has taken my ability to have children of my own. I had to give up my beloved nursing career. Lupus has affected every single aspect of my life, has its’ own agenda and I have little control over it. Not having any control to what lupus did to my body has been the hardest part.

Due to a strong family history I had my first mammogram at age 32, and even though it came back clean, the breast oncologist suggested I start getting annual breast MRI’s. I put it off for months because I knew it would be fine, and I was already dealing with a million other labs and tests. You can imagine my surprise (and fear) when I learned a mass was detected in my left breast. After a diagnostic mammogram and ultrasound guided biopsy, I was diagnosed with a pre-cancerous lump, atypical lobular hyperplasia.

It was something else to pile onto my already full plate, and it sent me into a tailspin. I went to two highly regarded cancer institutions, did a great deal of research, spoke to doctors, friends, family, and anyone who was willing to give me insight.

I couldn’t control my getting sick with lupus, how it affected my weeks-old marriage, if I’m going to wake up one morning in kidney failure or unable to walk due to a stroke. I have no power when my pulmonary valve will start to fail due to my congenital heart defect, and I’ll need open-heart surgery. The one thing I could take control of was a way to greatly reduce my chances of ever developing breast cancer.

In December 2014, I underwent a preventative double mastectomy with reconstruction. The months that followed were hell, and I had a few set-backs due to infections. But now over a year later I can look back and have no regrets in my decision. It was empowering to have some control, to know I most likely will never hear the words “Marla you have breast cancer,” like so many women in my family have.

When I first left my job, I was angry and bitter and displaced those feelings on my family and friends (OK, mostly my husband). After some convincing from my sister, I started a blog, Luck Fupus. What started as an outlet to vent my frustrations, has turned into a forum to educate and empower patients. I didn’t think anyone besides my mom and sister read it, so when I started getting emails from people with lupus thanking me for putting myself out there, it hit me that in some small way I was making a difference. In 2014 I won the WEGO Health Hilarious Health Activist Blogger Award (I’m funny, who knew?) and that has been a platform for me to start going to health conferences across the country to share my story, empower patients and do what I can to improve the patient experience for everyone.

I will always despise lupus and all it has taken from me, but without it, I wouldn’t have the opportunities I’ve been lucky enough to have come my way. In my 34 years I’ve been dealt some pretty heavy hands, and it would be too easy to curl up in a ball and hide from the world. But knowing my blog may help just one person makes it all worth it, so I continue to fight every single day and will share my story as long there is at least one person willing to listen.

My favorite quote. I have it tattooed on my upper right arm and describes me perfectly
“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor and some style.”
-Maya Angelou

MarlaJan DeFusco
luckfupusblog@gmail.com
Blog- http://www.luckfupus.com
Facebook- http://www.facebook.com/luckfupusblog
Twitter- @Marlajan
Periscope- @Marlajan
Instagram- @Marlajan
Pinterest- Marlajan81

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