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 mariah@fromthispointforward.com.
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