November Health & Life Update

Sharing my Heart and My Life (with help from a dear friend!)

Dear Friends,

(My name is Joelle Lewis, and Hannah is a much-beloved friend of mine. I have the honor of assisting her with writing a health update for this month. For easier reading, I have written it through her “voice.” The final version has been edited by her; while I may have helped supply the words, the voice is uniquely hers.)

Every season brings new challenges with my disability, and while the beauty of fall is a balm to my soul, the harshness of winter weather is brutal to my sensitivities. I am listing my health updates along with the specific needs that they incur, to facilitate friends knowing the best ways to help meet those needs. 

1). I have had to make more dietary changes in recent months; this is particularly challenging because I am already limited in what I can eat, and any new changes means an increase in my grocery budget. Getting food cooked is also a challenge, because I am constantly exhausted. My husband is working a lot AND does so much to care for me and our home. But I am concerned that it’s too much for me and for him. 

Having some pre-cooked/low-prep food options on hand would be REALLY helpful! Emailed Food Gift Cards are the best way to participate in a “meal train” for us. It would be super helpful if about 2 people per month could send us one of the following gift cards (let me know if you need my “chicken” email address).

Buckwheat Sourdough Bread: https://livepacha.com/products/pacha-gift-card 

Local Pizza Place: https://www.yourpie.com/gift-cards

Meal-Delivery Service: https://www.hungryroot.com/gift/

After making these changes, I have begun to see improvements in my IBS symptoms and body swelling; I am also seeing incremental mood changes. 

Photo by Mel Elías on Unsplash

2). A ME/CFS diagnosis offers explanations, but it does not offer a cure. This is often a lifelong disability, one that rarely goes into full remission, but that can be alleviated through intentional, conscious, actions. 

At the direction of my physician, I have begun taking professional, high-grade probiotics. They are expensive, at over $200 a month; I will be on these for at least the next three months. In conjunction with dietary changes, they will help to lower my body’s chronic rates of inflammation, allowing my body to fully rest, and hopefully increase my functional capacity over time. 

The probiotics I need are on my Amazon wish list, along with supplements that help mitigate the inflammatory reactions to food, and delicious treats I deeply enjoy but cannot afford due to prioritizing. 

https://www.amazon.com/hz/wishlist/ls/22VAWKOSGPB0S?ref_=wl_share 

Pictured above: a recent HungryRoot haul, thanks to a kind friend in a neighboring state.

3). I struggle to create feelings of safety within my physical body, from which I can also have the strength to be the Body of Christ outwardly without feeling betrayed by my own physical pain. I do not want to withdraw, and neglect our responsibilities as Christians, but I also know that abject self-sacrifice is not Biblical. We have prayed for wisdom, and God has brought us discernment to know areas where peace is created, to help us recuperate and continue being the hands and feet of Jesus. 

For me specifically, this looks like focusing on slow movement (like a sloth) and deeper rest; a weighted eye mask and weighted stuffed puppy have been helpful. I humbly ask that you continue to pray for grace upon grace, that I would be better at accepting my limitations and needs; better at prioritizing activities that feel safe, motivating, joyful, connecting, and calm. 

There is an overwhelming amount of devastation and sorrow present in this world, and sometimes it seems to increase hourly, an exponential rise in sin and suffering. As an empath, I have a visceral reaction to suffering, which while granting me compassion, often also dramatically increases the inflammation in my body. We cannot hide away, and this fallen world means imperfect bodies. I am seeking ways to engage in church, and with the catholic Body, that allow me to use the gifts and talents I know God has granted me, without compromising my own health and safety. 

I look forward to walking out the opportunities God brings me, as well as expressing them through art and my YouTube channel. If you have not subscribed to my channel, I invite you to join me for joyful videos during which I explore soothing ASMR and silliness. Link: https://www.youtube.com/@asmrlikeasandbox 

My Amazon wish list also contains items that allow me to create art, and my videos; these are “splurge” items that our monthly budget rarely allows me to purchase. 

Photo by Jeremy Thomas on Unsplash

4). Despite the challenges I face health wise, I do delight in the beauty of fall. The cooler temps can bring a decrease in humidity, allowing me to spend more time outside. When I am able, gentle walks exploring the beauty of creation are a soothing balm. 

However, fall/winter also bring severe illnesses to our community. The state of inflammation I battle daily means any virus will likely cause an overreaction in my body. What would seem like a nominal virus to a healthy person creates a chain reaction that can incapacitate me for months. 

This means limiting my social contact, increasing my sense of isolation, and causing debilitating loneliness. While social contact is available in many areas during this digital age, it is exhausting to me. I cannot sit up for long periods; I also do not have the mental stamina that basic social media requires. Even virtual doctor appointments can exhaust me for a week afterwards. 

I struggle with a constant sense of failure: I am failing my husband, my friends, my Savior. My husband in NO WAY ever insinuates this; he is a strong and secure presence in my life, and I daily thank God that we are together. I also know that Jesus sees me as perfect, wholly and beautifully created. 

Please pray that there will be opportunities for my husband and I to enjoy community, and fellowship, that are physically safe for me, and spiritually uplifting. I always mask in public, which can also cause division, particularly if I ask others to mask when around me. I never want to impose, but it is disheartening when I feel unworthy because I have to ask for even basic considerations. My husband recently was able to find a way to start finishing his M.Div. degree, and we praise God that He brought this blessing! Pray that it will open more career opportunities—and also bring him joy and confidence. 

To all of you who have read this, and continue to walk this road with us, we are grateful. Your love and support give us courage, and the hope in knowing that this life is not all there is: We serve a Savior who is and will be making all things new.

We know that this is a busy season, and that finances are tight for everyone; if you would like to make a simple gift, you can do so through my GoFundMe page. All support is deeply appreciated, even if all you can do is pray. As the isolation of my disability compounds with my physical symptoms, loneliness is overwhelming, as I mentioned above. If you are able, my husband and I would enjoy gentle ways of communication - whether that be a letter, becoming a subscriber on my YouTube channel, or commenting on my update posts. We pray for all of you as well and would love to know ways we can lift you up as well. 

GoFundMe Link: https://www.gofundme.com/f/help-for-hannah-joy 

Quick update: this past Sunday, my husband and me were able to attend church for the first time in a year and a half! The leaders at our church approved reinstating a mask only side room off the sanctuary during morning worship. This past Sunday was our first time to try out this new setup, and it was such a blessing to be with some of our church family in person! We hope this is something that will continue and will be a blessing to many.

For further reading, this is an article on how my disability impacts my life. I have included a few salient points.

https://www.healthrising.org/about-chronic-fatigue-syndrome-mecfs/facts/

Excerpt…

People with ME/CFS are as or more functionally limited than people with type II diabetes, multiple sclerosis, congestive heart failure and end-stage renal disease. They also have a lower quality of life than people with cancer, stroke, renal failure and schizophrenia.

A Centers For Disease Control (CDC) study indicates disability rates for ME/CFS are similar to those found in multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other serious diseases. Twenty-five percent of people with MECFS are home or bed-bound. One study found that only an astonishingly low 13% were employed full-time.

The FDA’s classification of ME/CFS as a serious disorder puts it in the same category as disorders such as heart disease, kidney disease, diabetes, etc. 

Economic costs to the U.S. run to the tens of billions of dollars yearly.

The evidence is clear. Despite its milquetoast name ME/CFS is a serious illness that commonly causes long term disability and severe financial hardships.

(Joelle here: It is awkward asking for help; in this world of self-reliance, “announcing” monetary needs feels presumptuous. It is humbling, more often humiliating, and always embarrassing. However, as the Body of Christ, we are called to not only meet needs, but to ask. I know Hannah and her husband, and their story: They are not exaggerating or seeking fame by displaying an aggrieved mental state. It has been an honor to help Hannah with this update; I am amazed by the trust she has placed in me.)