Friday, July 14, 2017

Facing Forward: Sue

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Sue
Location: Delaware (U.S.)
Diagnoses: ME/CFS and Lyme; both of my sons had ME/CFS also - one recovered after 10 years & the other is still sick and also has 3 tick infections.
Age at Diagnoses: I was 37 when I got sick; 38 when I got diagnosed. My sons were 10 and 6 when they first got sick.

How are you currently treating your conditions?
I have researched relentlessly to find treatments for ME/CFS, since there are no officially recognized treatments in the medical community. I also went to see (and took my sons to) some of the top ME/CFS doctors in the nation to learn about various treatments. All of that has resulted in a large number of separate treatments that we have found effective. In our experience, nothing helps a lot, but each treatment helps a little and that adds up over time to improved functionality and quality of life. My younger son is now fully recovered, and my older son and I live fairly normal lives, which is quite unusual with ME/CFS.

Briefly, we treat Orthostatic Intolerance (OI), an integral part of ME/CFS, with medications including Florinef and beta blockers, plus increasing fluid and sodium intake and monitoring heart rate. We take medications (technically tricyclic antidepressants but used in tiny doses and for different purpose) to correct the sleep dysfunction that is a part of ME/CFS. We have helped to normalize or rebalance our immune systems using inosine, low-dose naltrexone, glutathione injections, and multiple herbal antifungals, antibacterials, and antivirals. I also took prescription antivirals (alternating Valtrex and Famvir) for about 5 years to treat underlying, reactivated viruses like EBV and HHV-6. We have also treated methylation with folate supplements and B12 injections.

For Lyme disease and other tick infections, we are under the care of an LLMD (a Lyme specialist). We both took various antibiotics for over three years to treat Lyme and bartonella but have both switched to the Byron White herbal protocol in recent years, due to chronic yeast overgrowth (for which we now both take prescription antifungals, in addition to loads of probiotics and herbals). We have found the herbals to be surprisingly potent.

We are also under the care of a brilliant dietician who also has a MS in Biochemistry. She recommended a Paleo diet (no dairy, grains, or sugar), which has been helpful to us. The Paleo diet helps with energy, methylation, reducing inflammation, and helping to control our yeast overgrowth. She has also recommended many supplements to us that we now take, for a wide variety of purposes, including immune support, controlling yeast overgrowth, methylation support, cognitive dysfunction (aka brain fog), energy, and more.

What are the biggest challenges you have faced since your diagnosis?
Actually, the biggest challenge was getting a diagnosis in the first place. I saw dozens of doctors and had hundreds of blood tests over the course of a year, all while I was completely debilitated, and no one could tell me what was wrong. I know I am lucky - many people with ME/CFS go 5, 10, or even 15 years without an accurate diagnosis, but that first year of uncertainty was horrible.

Since my diagnosis, the first few years were the most challenging, especially two years later when both of our sons also got ME/CFS. With three of us debilitated and often homebound, we struggled with depression. We had no effective treatments in those days, either.

One challenge that continues now, 15 years later, is that my extended family doesn't understand our illnesses. Most of them have stayed in patterns of behavior that include denial and avoidance. That has been very hurtful and has permanently damaged some of my relationships with them. 

What are your favorite tips and tricks for managing everyday tasks?
My daily nap is sacred! Without it, I would feel awful by 4 pm every day. I nap after lunch every day - no exceptions! - and that gives me the energy and recovery I need to enjoy the evening.

It's also critical to ask for help when you need it. I was fiercely independent, so that was a hard lesson for me to learn. Now, if I wake up feeling awful, I call it a Plan B day. Instead of forcing myself to do things I don't have the energy for, I go through my list and consider what can be postponed and what I can ask for help with. I'll text my husband to ask him to pick up something at the store, for instance.

For anything active, I wear my heart rate monitor - it helps me to stay within my limits to prevent post-exertional crashes.

How do you manage to keep facing forward every day?
I'm a naturally positive and optimistic person, so moving forward each day comes easily for me, but I have learned a lot of important lessons through living with chronic illness. 

I learned to focus on small moments of joy every day by keeping a Joy Journal. Things like sitting on my back deck, reading a good book, looking up at the clouds, or listening to the birds in the trees bring me joy. I have tried to pass this onto my sons.

Going through these challenges together has brought us closer as a family. Though our sons are now grown and in college, we remain very close and enjoy each other's company. 

Helping others has also been a big part of the healing process for me and for our family. I started a local support group for families whose kids have ME/CFS, fibro, Lyme, and related conditions, as well as a Facebook group for parents and another one for teens. All of these groups have not only helped others - which feels good and makes our own struggles feel worthwhile - but have also provided support and friendship to me, my husband, and our sons.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Tough question, since there are still no miracle cures or amazing treatments for ME/CFS. I'm not sure I could have gotten to where I am today without going through the challenges I did. I think I did all the right things after my diagnosis - read everything I could about my disease, searched for others in similar circumstances, and tried every treatment I could find.

I guess I might tell myself that I needed to balance acceptance and hope - accepting my current situation while still holding out hope for a better future. I did eventually learn that. I think I had to go through some of the struggles to get to the point where I appreciate what I have and can help other people.

Do you have a blog you would like to share?
Living with ME/CFS

My blog features posts on effective treatments for ME/CFS and Lyme, updates on the latest research, posts on our experiences, and inspirational/coping posts, as well as fun stuff like movie and TV reviews.

Also, if you are a parent of a child with ME/CFS, FM, Lyme, EDS, or related conditions, you are welcome to join our Facebook group - watch for a FB message after requesting to join because that's how we confirm membership:

Would you like to be featured on Facing Forward? If so, please send an email to  

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