I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I am still having trouble finding the time to write all the blog posts I want to write here! I have a long list of posts planned: an update on my son one year after his relapse and new diagnoses and treatments, research updates, and another COVID-19 and ME/CFS update. But those kinds of posts take a lot of time and energy and research. Things here at my house are still super-hectic.
So, I thought I might try some shorter, quicker weekly updates, about what's going on medically with my son and I and what's going on personally with me, too. I realized that I used to write multiple posts a week here when I first started the blog, using it as more of an online journal (for a little nostalgia, you can check out my posts from July 2006!). These days, much of that day-to-day chatting occurs more on my Facebook page and on Twitter. So, I'm going to try going old-school and posting updates here on the blog more often. Please let me know what you think about that and which kinds of posts you like the best! (Note: I am having a problem with Blogger not showing comments made from mobile devices, so if that's you, you might try commenting on Facebook or Twitter, at the links above, for now, while I try to resolve the issue.)
Viruses and Other Infections
Still no sign of COVID-19 in our family, thank goodness, but as I explained in my post earlier this month, Crashes, Infections, and Treatment ... Oh, My!, my Lyme disease relapsed this winter, which was probably the cause of the HHV-6 virus reactivating in me this spring, causing a long--and these days, unusual--crash. As I explained in that post, I am treating it with Famvir (an antiviral) but started out on much too high a dose and Herxed (worsened) considerably. I'm happy to report that I figured out the dosing. I stopped taking it entirely for a few days, and once I felt better, restarted at just a half pill every 3 days (normal dose is 1 pill per day). It took about 6 weeks, but I am now up to the full dose, taking one pill a day, and feeling pretty good. I am theoretically able to take walks again, though it's been far too hot and humid here!
On the Lyme front, this relapse came just about 15 months after the last one (it's usually more like 3-4 years), so I have added some things to my treatment protocol (based on advice from my son's Lyme specialist). Stephania extract is supposed to help draw the infection out of the tissues where it hides (that's how the Lyme bacteria manages to hang on for so long in many people). I was careful with that one because the label said to be cautious if you take beta blockers (which I do, for Orthostatic Intolerance, OI), but I kept the dose low-ish and haven't noticed any side effects. I am also taking Samento aka Cat's Claw, a common herb used to treat Lyme and other tick infections, which is also supposed to help pull it out into the bloodstream where it can be treated. Those two are in addition to the A-L Complex (part of the Byron White protocol). I recently reached the full dose of Samento (the latest one I added), so I'll give it a month or so at this level and then try stopping treatment again. I haven't had any obvious Lyme symptoms in months. It's all so complicated!
Other Medical Issues
As if ME/CFS, Lyme, and assorted infections wasn't enough to deal with, I've had a couple of unrelated crises come up this past week. Last Friday, I was making a pitcher of iced tea, and when I poured boiling water into the glass pitcher (as I always do), it exploded! The pitcher only broke into a few big pieces, but the boiling water was hurled all over (including straight at me) at great velocity. It hit me in the stomach (again, so grateful there was no glass as well), leaving a pretty bad burn in a ring around my belly button. It was mind-blowingly painful that day, but I used cool water compresses and LOTS of aloe, and it is gradually healing, There's one blister, but otherwise, it's getting better every day. The combination of pain and adrenaline left me completely wiped out the next day, as you can imagine.
Earlier that same day, I began to notice a dark spot on the edge of my vision, so I went to see my eye doctor yesterday. It's not a floater--it's just one dark spot that stays in the same place; I can see it in the right eye when I look to the right. She did a thorough exam--twice!--and couldn't find any sign of retinal problems or anything else, so that's a relief. Just a "wait and see" thing for now; hopefully, it will go away by itself.
Our biggest issue here the past few months has been my 95-year-old father-in-law. He lives in his own apartment in Independent Living but has, of course, been isolated since March. They closed the dining room and have been delivering meals to the apartments, and even though it's not a nursing home or assisted living, the company that runs it has forbidden residents from leaving the building. Bottom line is that we saw a gradual decline in him, mentally and physically, with the isolation. He was OK on Father's Day, when they finally allowed us to visit with him outdoors, but then he declined sharply in the month after that. We treated a mild UTI (which can have a serious effect on senior's cognitive function) and hired in-home care to stay with him three hours a day, five days a week. That just started two weeks ago, but between that and treating the infection, he has improved somewhat. The downside is that it is very expensive, and he won't be able to afford it for long. So, my husband was running over there twice a day (down to once a day now), and I spent many hours on the phone calling in-home care services and assisted living facilities (which are all still on complete lockdown here, so we would no longer be able to see him). It's been a very difficult and stressful situation, and we're not out of the woods yet, but we had a nice socially-distanced visit with him outdoors on Sunday.
Visit with my father-in-law
Just to end on a positive note, among all the stress and crises have been some good times, too. As I've been feeling better, I've been able to start walking again and occasionally meet a friend or two for a shady walk at our local nature center. We've had temps in the 90's with high humidity and heat indices in the 100's the last couple of weeks, but sometimes we can get out in the morning before it gets too bad.
Covered bridge at our local nature center
I even enjoyed an evening out with my two closest friends this week! We got Thai take-out (and ate it at a long table, well-separated!) and caught up - we've missed each other. Then, we relaxed in recliners and watched Hamilton on her big screen TV. Broadway needs to add recliner seats to its theaters! It was my first time seeing it, so I was very excited--and yes, it was as good as everyone has said. The songs are still rattling around in my head.
In the midst of a very stressful day and week, we celebrated my 55th birthday last week. It had been a rough day for me, but I had a very enjoyable evening with my husband and adult sons. The four of us actually ate OUT at one of my favorite restaurants (they have a huge outdoor patio, with lots of space between the tables). It was wonderful to just be out again, the shade and breeze made it a decent evening, and the food was delicious. I even had an 8 oz. beer! Then, we came back home for a mocha cake from a local bakery, and a pile of presents. It was a very relaxing, nice evening with my family.
Wow, my quick update turned out to be pretty long, but you're all caught up now! I'll try to keep up with shorter weekly updates. Let me know what you think.
So, how are YOU? How's your summer going so far?
P.S. If you like to read, join my annual Big Book Summer Challenge over at my book blog! You just need to read at least one book of 400 or more pages by early September. I've had a record number of people sign up this year--I think everyone is happy to have something fun (and safe) to do! So, join the fun (and yes, audios count, too).
As I mentioned in my Summer 2020 TV preview, our son recommended a show to us that my husband and I are loving so far. Lie To Me
is a unique crime show about a consulting group that can tell if
someone is lying, based on the science of micro-expressions, by studying
subtle changes in their facial expressions.
actor Tim Roth stars as Dr. Cal Lightman, who has devoted his life to
studying the science of using facial expressions to tell when someone is
lying and when they are telling the truth. He runs an independent
consulting firm with his business partner, Dr. Gillian Foster, played by
Kelli Williams, and their firm is often hired by various law
enforcement officials, including the FBI, to assist with cases. Eli
Loker, played by Brendan Hines, also works for the firm and has a rule
to never lie, which makes working with him interesting! Rounding out the
team is a new hire, Ria Torres (played by Monica Raymund), who is what
they call "a natural" and has an innate ability to tell when someone is
lying, though she is gradually also learning the science from the
others. Always knowing when someone is lying makes relationships
interesting, as when Cal's teen daughter, Emily (played by Hayley
McFarland) tells him she is sleeping over at a friend's house, and he
can clearly see that she is lying. Cal has learned there is a time and a
place to call someone on a lie, though the younger members of the team
are just learning that. In each episode, the team is hired for a case
(sometimes two cases, and the four of them split up), where telling
truth from fiction can provide crucial information to law enforcement or
private clients. Early cases range from a drug kingpin in prison up for
parole who says he is reformed to a high school student accused of
killing a teacher who swears he's innocent to a congressman accused of
having an affair. Sometimes, they discover the accused or the witness is lying but perhaps not about what the police think.
are really enjoying this entertaining and unexpected show so far. Each
case and each episode is unique, with twists we don't see coming, plus
as with most crime shows, the personal lives of the characters come into
play as well. There is a bit of a Mentalist feel to the show (an
all-time favorite at our house), except the focus here is on science
rather than tricks and mental maneuvering. One fun aspect to the show is
that when one of the experts is explaining how a certain facial tic
denotes lying, they often show photos of historical figures illustrating
the rule! The characters are all interesting, and the acting is
excellent. The combination of suspenseful mysteries, great characters,
and a sense of humor has made this show one of our current favorites, in
our regular rotation.
Lie to Me originally ran for three seasons, from 2009 to 2011 on Fox. It is available on Amazon or free through IMDB (use the Amazon link to see the free option).
As I mentioned this week in my Weekly Inspiration post (Lift Up Your Spirits), my idea of comfort TV is shows about teens and young people. I don't know why, but I love watching a show set in high school or college (or shortly after), especially in stressful times. Maybe it's because their problems are so very different from my own, and I already successfully survived that stage of my life. In any case, I have a new favorite show in this genre that also touches on the world of chronic conditions/disabilities: Atypical. I am completely obsessed with this show about an 18-year old boy with autism and his family.
Sam Gardner, played wonderfully by Keir Gilchrist, is an 18-year old with autism who is in his senior year of high school. His mother, Elsa, played by Jennifer Jason Leigh, has built her whole life around helping Sam overcome challenges, fighting battles to get him the rights and accommodations he needs, and making sure that Sam and his teen sister, Casey (played by Brigette Lundy-Paine), have perfect childhoods. She has a color-coded calendar on the wall, stacks of Post-Its at the ready, and she is generally super-mom in every respect. Her husband, Doug, played by Michael Rapaport, works as an EMT and loves both of his kids, though he's been far less involved in Sam's life than Elsa has. Sam's therapist, Julia (played by Amy Okuda), encourages him to take steps toward independence, and when Sam says he wants a girlfriend, Julia is supportive. Sam's newfound independence, though, completely disrupts Elsa's life, leaving her to wonder what her role is now. Sam gets questionable (hilarious) dating advice from his best--and only--friend, Zahid (played by Nik Dodani), who works with him at the local electronics store. Meanwhile, Casey struggles with the decision of whether to leave her public high school when she is recruited by a fancy private school for their track team. Through the three seasons (so far), Sam takes increasing steps away from dependency into his adult life, while the rest of the family tries to adjust and deals with their own issues.
I love everything about this show! Though I was unfamiliar with any of the actors other than Jennifer Jason Leigh, the entire cast is outstanding, and I like all of the characters. Gilchrist is particularly convincing in his portrayal of a young man with autism (I was actually surprised to find on his IMDB page that he's not autistic himself). The relationships between the characters and especially the family members are warm and lovingly portrayed, including the inherent paradox for Sam and Casey of her sometimes have to take care of her older brother. The show is by turns moving, thoughtful, and funny. From my role as the parent of (at one point) two kids with chronic illnesses, who required accommodations at school, much of the show--and especially Elsa's role--are very true-to-life and an accurate representation of how one person's condition can affect the whole family (don't worry--I understand that autism is not an illness, but many of the challenges in life are similar; there is a lot here I could relate to). On the other hand, I am also learning a lot about autism specifically, which has been very enlightening. It is dealt with honestly, openly, and, from what I understand from others, accurately. I love this family, and I love this show! I am now into season three and dreading when I finish it (though I see that a fourth season is planned).
Atypical is a Netflix original, so it is available on Netflix.
Check out the trailer to see a glimpse of the family dynamics and the fabulous humor in this show:
I haven't had much time for this blog lately; life at my house has been busy, chaotic, stressful, and exhausting! Both adult sons are living at home, one just started his new job this week, we are still struggling to care for my 95-year-old father-in-law who has sharply declined in recent months, and my older son and I had an out-of-state doctor's appointment for him this week (about 5 hours in all for us). Whew. Oh, and this week, I was also trying to take an online course I'd signed up for a while back about running Amazon Ads for my book: I've been working on it all week (in between all the rest), and so far, every single one of the 12 or so ads I've submitted has been rejected. Why? Because using the words "chronic illness" is "unfairly targeting customers based on their personal characteristics"! Yeah, really! Anyway, all the activity and stress finally caught up to me, and I crashed badly on Thursday. Luckily, my crashes now don't last long.
All of that is a long way of saying that I often need a mood boost! Anything that makes me laugh or smile or lifts my spirits can help. This is especially true in these challenging times we are all living in; the constant barrage of news, politics, and conflict can really affect my mental and physical health. Sometimes, I need a break from it all.
So, here, I thought I'd just collect a few of the sources I turn to to lift my spirits. Please share your mood-lifters in the comments or on social media. I'm on Twitter and have a Facebook page for this blog, and I often post uplifting things in both places, so there's your first tip!
Chronic Illness Boosters
There are large, supportive communities for chronic illness on social media. I have a separate Twitter account and Facebook page for this blog, and that has worked out well. Those chronic illness communities are like my "safe spaces"--the places where I can go on social media to (mostly) avoid politics and conflict and instead find kindness and support. So, you can start by "liking" my Facebook page and connecting with me on Twitter, and from there, you will find others who are like-minded. A few particularly positive and uplifting people/accounts to connect with:
ME/CFS Self-Help Guru
Julie and I worked together for years for the ProHealth website (she edited their Inspiration Corner page, which I frequently wrote for), and she has very active social media accounts, all focused on optimism, support, positivity, and lifting the spirits. You can follow her on Twitter or like her Facebook page or visit her blog and in all of those places, you can always find joy, comfort, and kindness. She offers free courses and videos, as well as daily posts, all focused on self-care and inspiration. This post of hers was particularly helpful to me this week, and I shared it to my own Facebook page:
Not Just Tired
This is another of my favorite chronic illness people to follow online. She is well-known for her #MyDailyThankYouand #JoyinSummer (or whatever season we happen to be in) posts, and lots of people join in! This creates a whole supportive environment of positivity and kindness that I always find soothing and fun. You can follow her on Twitter, like her Facebook page, or visit her blog (her latest post is actually about those two hashtags above and the positive impact they have had on her life). Then, join in the fun! Post your own gratitudes and joy with the hashtags, and you will find an entire community filled with uplifting posts.
One of my own recent #JoyinSummer posts
To Make You Laugh or Smile
Sometimes you don't need chronic-illness support, you just need something to lift your spirits and take your mind of all the bad stuff going on (or your own symptoms). A few things have caught my eye recently: The Far Side is Back!
Gary Larson fans rejoice! The renowned cartoonist, famous for his many years of irreverent and hilarious The Far Side comics, is back from retirement! I guess he figured with all that's going on in the world, we needed a good laugh more than ever. He says he is now experimenting with digital cartooning. He kicked off his renewed career with a cartoon called The Taxidermist, which you can see at the link. From the home page of his website, you can laugh your way through plenty of classic Far Side cartoons or check out the section called New Stuff. A great place to visit for your daily laugh or to immerse yourself in silliness for a bit. Seniors Pose as Classic Album Covers
I just saw this one this morning on the Today show, and it is so cool! A group of seniors in a retirement home in the UK posed as classic rock (and a few contemporary) album covers. They are all just awesome and guaranteed to put a smile on your face. Here's a sample below, from a David Bowie album, but you can check out all of these amazing seniors here. This is an especially good lift if you've been feeling old lately!
Hoda's Morning Boost on the Today Show
Each morning, at about 8:05 am (Eastern time), the Today show does a happiness boost after their 5-min overview of the day's news (which is just about all the news I can take these days). I look forward to these daily lifts, which can vary from a reunion that brings happy tears to your eyes to something sweet that makes you smile to something that will leave you laughing out loud and sharing with everyone you know. You don't even have to watch the 5-minute news recap first--you can find a whole page of Boosts on the Today website. As an example, this was one of the boosts that made me laugh like crazy and run downstairs to show my husband (turn up the volume):
Comfort TV and Movies
Sometimes, you just need to totally withdraw from the world, wrap yourself in a blanket, and comfort yourself with some good escapist TV and movies. This means different things to different people. For some, it's trashy reality TV (both of my sons are currently obsessed with Trailer Park Boys). For others, it's rom-coms or favorite old movies. And for others, it might be silly sitcoms. Me? I get my comfort TV from shows about high school students. I don't know why, but I love watching shows about young people, preferably those with a sense of humor mixed in with the drama. Maybe it's because teens' problems are so very different from my own.
I was a huge Glee fan and still turn to it when I need extra-comfort--it's not only got teens, drama, and humor but also awesome singing and dancing to lift your spirits. If you've never watched it before, I highly recommend it (currently available on Netflix). A more recent TV show with similar "feels" is Zoe's Extraordinary Playlist(on NBC website, Peacock, Hulu, and Amazon). It's a silly premise--a young woman can hear other people sing their feelings--but I loved watching it this spring because it's fun, colorful, funny, and filled with music and dancing (my review at the link above).
I was late to the game with Freaks and Geeks, but once I discovered it, I loved it. Unfortunately, it is no longer on Netflix (where I watched it) and is currently unavailable anywhere, due to some music copyright issues, but hopefully they will sort that out soon. For now, it is only available on DVD.
My recent comfort TV choices (and I have needed a lot of comfort TV lately) have been Never Have I Ever (on Netflix), about an Indian-American girl struggling to fit in (loved it!) and my current go-to, Atypical (also Netflix), a really awesome dramedy about an 18-year-old boy with autism and his family. I love this show! I am totally hooked on it. Besides being entertaining, it is an excellent portrayal of life with autism and also how a child with a disability affects the entire family (something we can certainly relate to). It's just really well-done. I am also watching an old favorite of mine, The Bold Type, about 3 best friends in their 20's who work for a fashion magazine in NYC.
This morning, I watched this inspiring TED talk by Jonny Sun, and I could immediately relate to what he's talking about here:
While I am never lonely these days, with a full house and often wishing for some solitude, I do sometimes feel alone in the sense of feeling like no one else could possible understand what I am going through or what my life is like. I am fortunate to have some amazing, loving friends and family, but with this crazy illness, I can still sometimes feel alone in my unique situation.
Then, as Jonny explains in his talk, I reach out via the internet into "the void," and I find my people. I get the understanding, compassion, and camaraderie that I need.
Of course, in my case, I am not just reaching out to the worldwide web indiscriminately but am reaching out to the online chronic illness communities that bring me so much comfort, support, and joy. In the past 17 years since my diagnosis, I have slowly, gradually found--and in some cases, built-- these communities, and they are now someplace where I can go, at any time, to find others like me who get me ... and not feel so alone anymore.
You can be a part of these loving, supportive communities, too (it takes a bit of trial and error and caution, as not all chronic illness groups online are supportive and tolerant). Here are some that I've found along the way.
On Twitter, you can connect with my Twitter account (which I use exclusively for chronic illness; I have another for other stuff), then look at my connections and connect with them yourself--it's a whole subset of Twitter devoted to people like us, living with chronic illness.
On Facebook, you can "like" this blog's page, and you will find a caring community there, where you can--as Jonny explains above--interact not only with me but with each other. I try to do daily #GratefulToday posts (on Twitter, too), where you can build your gratitude muscle by sharing what you are thankful for, plus sharing stuff from my own life, interesting or inspiring things I find elsewhere, and opportunities to just share how you are today and what's going on in your life.
And there are LOADS of Facebook groups, many specific to your illness and whatever other interests you may have. There are literally hundreds of groups just for ME/CFS alone. I have listed a few of my favorites, with tips on where to find more in this post on Facebook groups.
Keep in mind it may not just be communities for chronic illness that will help, but any kind of interest you have: knitting, reading, TV and movies, photography, and more! In addition to my online socializing in the chronic illness world, I am also a member of a bunch of groups and communities focused on books and reading, since that is a passion of mine.
My husband and I were scrolling through Amazon a few weeks ago on a
Saturday, looking for a movie (specifically a thriller) to watch, and we
found Lie to Me. It sounded interesting, and we like Helen Hunt,
who stars in it, so we watched it. What a pleasant surprise! It turned
out to be a very clever, twisty thriller with plenty of surprises in
Helen Hunt, most famous for her role in Mad About You
in the 90's, plays Jackie Harper, who is married to Greg, played by Jon
Tenney. They have a teen son named Connor, played by Judah Lewis. Greg
is a police detective in their picturesque small town. It's clear from
the beginning that Jackie recently cheated on Greg, and though the
couple is trying to stay together, Connor has not forgiven his mom and
is very angry with her. In this midst of this domestic trouble, a young
boy has gone missing from their quiet town, last seen while riding his
bike in the woods on his way home. Greg and the rest of the police force
are looking for him, and members of the community join in with search
parties through the woods. There is some reference to past incidents of
boys going missing, though the details aren't clear at first. Meanwhile,
Jackie starts to notice strange things going on in their home, as
tension builds both within and outside their family.
is the way I like my thrillers: smart and unpredictable. This seems to
start out as a simple mystery--boy gone missing--with some family drama
mixed in. Then, the weird things start happening around the house, and
you begin to wonder if there could be something supernatural going on.
Eventually, some of those questions are answered, but there are still
plenty more surprises to come. The cast is excellent, the writing is
great, but the star of this movie is that surprise-filled plot. We
absolutely loved this super-twisty, tension-filled thriller that kept us
guessing right up until the end (even my husband, who always guesses the ending of movies, was stumped). It just gets better and better.
Stress and anxiety are sky-high at our house lately. My 95-year-old father-in-law has been struggling during the pandemic, and we've seen a decline in him both physically and mentally because of the isolation (he's still in independent living, so my husband visits, but he can't leave his building and spends every day just sitting in his apartment). We were finally able to get the whole family together with him on Father's Day for an outdoor socially-distanced visit, and he loved it! We brought his favorite McDonald's meal (his favorite meal, period - ha ha), gifts, and got him telling old stories. In the days following our visit, he seemed more engaged and mentally "with it." So, we tried another outdoor visit that following week, just four days later, but he was confused the whole time and couldn't even remember old stories he's told thousands of times.
Since then, he's fallen off a cliff, cognitively. He hasn't had a single lucid moment in weeks now and just gets worse and worse. My husband is running over there (about 20 min from our house) at least twice a day because he's completely forgotten how to care for himself. Meanwhile, I spent my week first calling services that offer in-home care (much too expensive on top of his rent) and now, assisted living facilities. We were determined not to move him into assisted living during the pandemic because we won't be able to see him, but we no longer have a choice. We are working with his doctor to test for UTI and other possible causes of this sudden decline, but he was already going downhill, and this may just be his new normal.
The stress for my husband and I has been huge. I spent all day Thursday crying, after a very upsetting phone conversation with my FIL where he barely knew who I was. I just couldn't stop sobbing! It was all the accumulated stress boiling over. Then, I got back to my phone calls. We've both just been feeling completely wrung-out, and of course, that emotional stress resulted in a physical downturn for me, too--I was useless on Friday, and my husband had to get our weekly groceries in addition to his visits to his dad. Luckily, he had the day off work, at least. I am feeling so fragile that I have been avoiding the news and even mainstream social media (my connections in the chronic illness world feel like my only "safe places" right now!) because they just add to the stress and anxiety.
All of this is a long way of telling you that I've been thinking about how we handle stress and was going to write about it today ... then realized I already wrote about this topic in my book! Here is a reprint of the chapter titled Roll with the Punches, which is all about what to do when a crisis hits. You might also be interested in a couple of my recent posts, each of which has lots of tips and ideas: Dealing with STRESS and Coping in a Crisis. I sincerely hope your life is crisis-free right now, but I think we could all use some help with stress!
(Note that this chapter was first published as an article on the ProHealth website on August 26, 2018; it was edited for my book, and this is the edited version.)
Roll with the Punches
We recently had a tough year with a lot of unexpected crises
that created emotional stress, financial problems, and the need for fast
action. Most significantly, one son was assaulted in Europe and had to return
early from a study-abroad program due to a serious concussion. During that
trying time, a family member commented on how well we coped with these kinds of
emergencies, how we stayed calm and did what had to be done. It made me realize
that so many years of living with chronic illness has taught us how to go with
the flow when things go wrong.
I have learned to expect the
unexpected while living with ME/CFS myself and having two sons with the same
disease, one of whom also battles tick infections. The only thing you can count
on with these illnesses is their unpredictability. I’ve lost count of the
number of times I’ve had to cancel time with friends at the last minute, couldn’t
go to my book club, or had to call off a family trip. It’s never fun, but you
do get used to the rollercoaster life.
Our sons have grown up this way,
learning to roll with the punches and change plans at a moment’s notice. They’ve
learned to bear the disappointment of missing out on something but also to make
the best of a bad situation. For example, when my oldest son relapsed from the
flu and we had to cancel our usual Thanksgiving trip to see family, we focused
instead on the rare treat of being in our own home for a holiday.
When we got that unexpected phone
call from our younger son in Europe, of course my husband and I were very
upset. However, with so much experience with crises under our belts, we quickly
moved on to what needed to be done. I contacted our son’s concussion specialist
(he’d had one before), a caring doctor who replied immediately with advice for
our son and assessed him long-distance with online concussion testing software.
We spoke with our son every day to comfort him and to assess his progress (or
lack thereof). When it became clear that he couldn’t participate in any activities,
we made arrangements to bring him home early.
Back home the next day, our son
kept thanking us for acting quickly and bringing him home. He’s never been so
grateful! We got him into the concussion specialist immediately and followed
the instructions for “brain rest.” Even at that point, our son was remarkably
positive about his experience. Yes, a horrible thing had happened to him, and
he missed two-thirds of the program he’d been looking forward to. He told us, though,
that his first week there had been amazing; he’d seen and done so many
wonderful things and learned a lot.
Within a month, he was almost fully
recovered from the concussion. He could think clearly, had returned to normal
activities, and his headaches were almost gone. His professor worked with him
on an individual project to get credit for the course. Our travel insurance (we
never travel without it) came through with reimbursement to us for the outrageously
expensive last-minute plane fare soon after.
In the midst of all of this, I
realized that living with chronic illness has made us emotionally stronger and
taught us to adapt when things go wrong. All of those unpredictable days,
weeks, and months taught us how to cope with uncertainty and crisis.
Here are some tips for when the
unexpected happens to you.
Time to Grieve
It’s important to acknowledge and feel the raw emotions that
come up when something bad happens. You can’t move forward until you allow
yourself to grieve. It’s OK to cry and let go and feel awful for a while. In
fact, it’s healthy and necessary.
Once you experience that anger and hurt and sadness, it’s
time to start thinking about what you can do to help. Even in our case,
thousands of miles from our son, we could contact the doctor, talk to our son
frequently (he was very upset), and begin thinking about what came next. Taking
steps to ameliorate the situation will also help you to move forward
emotionally, as long as you have first dealt with the grief.
One Day at a Time
Try to think about what you can do right now, today, to help
with the crisis. It’s best not to worry too much about what comes next week or
next year because that can lead to ever-worsening anxiety. Instead, focus on
today—or even just this minute. Taking things one step at a time will help you
to stay calm and able to help.
A few days into the crisis around our son’s concussion while
abroad, I realized I really needed
someone to talk to (besides my very supportive husband). I turned to my online
support group of parents whose kids are sick. True, this incident had nothing
to do with ME/CFS or the other chronic conditions covered in our group, and it
was the recovered son who was injured. I knew they would get it, though. And
they did. I vented all of my concerns and anxiety to our private group; as
always, they responded with compassion and understanding. It was just what I
needed. Try to find the right source of support for your situation, whether that’s
a friend, support group, or therapist.
Unexpected crises are not just a part of life with chronic
illness; horrible things happen in every
life at one time or another. When these things occur, though, our lives of
chronic illness have an unexpected silver lining. We’ve been training for this
ever since we got sick! You can use the skills and coping mechanisms you’ve
learned from your chronic illness world to help you through whatever else comes
up. As an added bonus, we can also help our loved ones to find their way
through whatever life throws at them. Hang on—it’s going to be a bumpy ride!
I am way overdue for a personal update on my health here,
but I just haven’t had the energy for the past four months … which I guess says
it all! Here’s an overview of what’s been happening, what I’ve learned, and
what I’m trying to resolve it. I’ll try to keep it brief!
First, back late 2019, I couldn’t figure out why my left hip
was hurting. I couldn’t remember injuring it, my massage therapist wasn’t able
to help, and it took me months for
the lightbulb to finally go off: my Lyme disease was back, flaring up again!
That’s a whole story in itself, but the quick version is that I got Lyme way
back in about 2009, and ever since then, I treat it and it goes into remission
for awhile and then—probably due to the immune dysfunction of ME/CFS—pops back
up again every few years. Usually, I know immediately that it’s back because of
sudden-onset knee pain (I don’t normally have any pain issues, other than the
flu-like aches of an ME/CFS crash) and nausea. This time, it surprised me with
the left-hip pain, so it took me longer than usual to realize what was
happening. Lyme works that way—with joint pain that can sometimes hop around
from one joint to another.
So, around January, I restarted my Lyme treatment; I use a
tincture called A-L Complex from the herbal Byron White protocol. I began to
feel better pretty quickly, and the hip pain went away, confirming that it was
indeed Lyme disease rearing up again. I felt good—at my normal baseline--in
February and into early March, continuing the treatment (it came back this time
after only 18 months, so I was determined to treat it more completely). Then
the pandemic hit in mid-March, and we hunkered down at home, not that much
different from our normal life. Soon, though, I began to go downhill.
From mid-March until recently, I was in a crash but couldn’t
figure out why (that sort of unexplained crash is extremely rare for me now,
thanks to treating immune system dysfunction). I was worn out all the time, had
no energy, and was very achy at times. I kept waiting it out, but the crash
wasn’t going away. I suspected that perhaps I’d been exposed to COVID-19 way
back at the beginning without realizing it. After all, that’s probably how any of us with ME/CFS would
react, right? By crashing badly, even if we didn’t “catch” it and get the
common symptoms of it.
By May, I was no better, so e-mailed my ME/CFS specialist in
NYC. She agreed with my theory that there was probably some infection behind
the scenes, so she sent a lab slip for COVID-19 antibodies and also for some
other common viral culprits for people with ME/CFS.
What I Learned
I had a phone consult with her after my lab results came
back, and we were both a bit surprised by the results. My COVID-19 antibodies
were negative, so that probably wasn’t the trigger (I have since heard the
antibody testing isn’t all that accurate). However, I did test positive for
adenovirus, which is … the family of viruses that cause the common cold! That
was a surprise to both of us (and later, to my primary care doctor) because I
rarely catch colds, and I had been at home for most of the past three months,
other than an occasional trip to the store with a mask on! But, there it was.
Maybe I’d been exposed before the pandemic, and it was still hanging around,
due to the immune dysfunction of ME/CFS.
The other test that came back positive was for HHV-6. This
is a herpes-family virus in the same family as EBV (Epstein-Barr), CMV, VZV,
and others. These viruses are common culprits that cause trouble for those of
us with ME/CFS. They are all very common in the blood of most healthy adults,
but most of us are exposed as children (and get chicken pox or mono or other
viral illnesses) and then the viruses go dormant. With the immune dysfunctionof ME/CFS, though, they are prone to getting reactivated. This means that the
immune system begins to react to them again, causing the typical crash symptoms
we are all familiar with. Since both ME/CFS and
Lyme disease can cause these dormant viruses to reactivate, it is likely that’s
what happened with me this spring, perhaps due to the combined effects on my
immune system of my Lyme recurring and being exposed to some random cold virus.
When I first started to see this specialist years ago, my HHV-6 numbers were
also high in my initial testing.
Back in 2007, when the doctor first noticed my reactivated
HHV-6, we treated it with antivirals. I tried a brief round of Valcyte (valganciclovir), but
it was too toxic for me. I ended up alternating between Famvir (famciclovir) and Valtrex
mild antivirals that are effective against herpes-family viruses--for about five years. At the
time, my viral numbers were positive but not super-high, so my corresponding
improvements were modest but definitely noticeable. I stayed on the antivirals
for so long because I got Lyme disease about a year into the antiviral
treatment, and both the ME/CFS specialist and my Lyme doctor agreed it was best
to stay on them until the Lyme was under control, since it is known to
reactivate viruses, too.
we decided to try the same approach this spring, with just a short course (6
weeks) of Famvir to get the HHV-6 back under control. I started that at the
beginning of June, and … I could hardly keep my eyes open for the next two
weeks! I would sleep for a solid 10 hours and wake up still exhausted, barely
able to drag myself out of bed, and was so wiped out all day that I was
far too long, I finally realized this was a Herx reaction! This is what happens
when you treat infections—especially those that have been around for a
while—and you get worse before you get better. The antivirals were killing off
the HHV-6, and a bunch of dead viral material was flooding into my bloodstream,
causing my immune system to think it was under attack (again) and over-respond.
We deal with Herx reactionsall the time
around here, when treating my own Lyme and my son’s tick infections, but it
took me a couple of weeks to figure it out!
mistake was in jumping right into a full dose—one pill a day—of Famvir, so I
took a break for a few days until I started to feel better and then restarted
it at a much lower dose. This is whatI advise other people to do all the time, so I felt pretty stupid for not
taking my own advice! I am now taking just a half pill every 3-4 days. That’s
about right for now, and I will gradually increase the dose as tolerated. I am
able to function again and have even been able to resume my morning weight
workouts (some days) and short walks. I lost a lot of stamina the past few
months, but I am working to get it back, little by little, As with everything
else with this crazy illness … baby steps!
wanted to share all this with you because underlying infections are a huge problem for patients with ME/CFS
and are often behind our unexplained crashes. Anyone can see an ME/CFS
specialist like I’ve got; there aren’t a lot of them, so most of us (including
me) have to travel and go outside our insurance networks or national healthcare
programs. It’s really the same everywhere right now, unfortunately. Luckily,
all of the top experts are used to working with patients long-distance, so most
are happy to work with you via e-mail and phone (like I just did) after an
initial visit. It is well worth the effort and cost to see one of these
specialists, if you can manage it because treating underlying infections (which
is just one of many treatments they can offer) often dramatically improves
symptoms. Check out my Find a Doctor page for more information, including a
list of top ME/CFS experts in the world.
I also encourage you to check out my post on Treating Immune Dysfunction in ME/CFS because the three treatments outlined there are all inexpensive, readily accessible (some you can even try on your own, without an expert), and have resulted in enormous improvements in all symptoms for my son and I. Because of those three treatments, these kinds of random-seeming crashes are rare for both of us now, plus we both feel better every day and can be more active without crashing.
that’s where I’ve been the past four months and why I haven’t been posting as
much as usual! I can sometimes manage a movie or TV review or a short inspiration
post, but I am way behind on research updates and other more complex posts that
require brain power! But I am feeling better and coming back to life again, and
I hope to be posting more again soon (after a short vacation with our sons next