Movie Monday 1/27

Despite our exhausting week and recovery weekend, we didn't watch a lot of movies. Since my 16-year old son had knee surgery on Thursday, we let him choose what to do or watch, and he's not a big fan of movies. Even post-surgery, he gets impatient with being inactive and doesn't like like to just "veg," so he would rather play video games. However, on his first day home, he was exhausted enough to sit still for a movie with us, so I chose something light and fun, to perk us all up:

We finally got to see Despicable Me 2! I just love those minions (wish I had some of my own!). This sequel features Steve Carell in the lead role again as Gru, the now-reformed super-villian who is living a quiet life in the suburbs with his adopted daughters. The Anti-Villian League recruits Gru to help them with a particularly troubling case, and he meets a female agent named Lucy. Ah, the plot doesn't really matter - just like the first Despicable Me movie, this one is all about fun and laughs, with plenty of cartoon action, romantic sub-plots, and very mild suspense. And the minions! The scene at the end when the minions are the Village People is the best! This light movie was perfect for us, and it lightened all our moods and inspired lots of hearty laughs - highly recommended during your next down day for some laugh therapy!

On TV, we have been watching Almost Human (new show and excellent), Arrow (my sons' favorite), our old favorite Bones, plus the sitcoms that my youngest loves (two current faves are Brooklyn 99 and The Goldbergs). With our oldest son, we also enjoy Elementary and The Following. My husband and I kind of have all of our own favorites on hold while he is home from college. I hope the episodes we missed are still On Demand.

Have you seen any good movies or TV shows lately?

Recovering

My sons and I are all recovering this weekend. My youngest son had knee surgery (#4) on Thursday, so he is recovering from that. I crashed just from spending most of the day at the hospital with him!  I thought I was doing better this morning and planned to go to the grocery store, but my husband wrestled the list out of my hands and sent me back to the couch! He was right - within a couple of hours, I realized I was still achy and had a sore throat. Sometimes, he knows me better than I know myself. Even after 12 years, I still tend to overestimate what I can do. I am lucky to have him looking out for me!

My oldest son is still struggling to fully come out of the bad crash that started January 2. Actually, he has had a rough time all last semester. He decided to drop his winter session class and just rest and recover, but now there are only two weeks left until spring semester starts. He is definitely doing better, but it doesn't take much to push him over the edge again. I think going to PT yesterday (for a leg injury) was probably why he woke up this morning feeling bad again. He is doing better now, after a nap today and lots of rest. He had to cancel plans with friends to go to a concert today, so he was disappointed about that. He and I are both doing better as we address the yeast issues, but we are getting fed up with the sugar-free diet!!

We are hoping our youngest will recover from his surgery pretty quickly. It turned out to be minor and very quick (he was only under anesthesia for about 15 minutes), plus we asked for 12 hours of post-op saline IV to counteract the effects, and he ended up getting more like 20 hours! Fingers crossed. I will keep you up-to-date on how well our strategy works.

So, that is the news with us this weekend - lots of TV and movies and resting (though now I am wiped out again after making dinner). Hope you are having a good weekend!

Movie Tuesday 1/21

Still very busy and very hectic here, now in the middle of a huge snowstorm! So much for getting anything done this week before my son's surgery on Thursday. This storm is so bad that the area hospitals have cancelled all surgeries for tomorrow - hoping it is cleared up by Thursday. The good news is that I am feeling better - back on Diflucan and frantically gathering information on various types of probiotics, hoping that switching to a new one might help. Several people have recommended Prescript Assist, so I ordered some.

We spent our weekend at my mom's condo in a ski resort so my son could celebrate his birthday (and his freedom before knee surgery) snowboarding with his friends. I mostly stayed on the couch in front of the fire! We did enjoy a couple of movies:

My husband and I watched The Way Way Back on Saturday night, and we both really enjoyed it. It's a coming-of-age story with a large dose of family dysfunction. The main character is a a 14-year old boy named Duncan. As the movie opens, he is riding in the back of a vintage station wagon (what we used to call the way back when we were kids!), reluctantly on the way to spend the summer with his divorced mom (played by Toni Collette), her boyfriend, Trent (played by Steve Carell), and his snooty teen daughter, Steph. Trent has spent summers at the same beach house (looks like Long Island to us) since he was a kid, so this is all his territory. As the cute next-door neighbor girl explains to Duncan, "this place is like spring break for adults."  Duncan hates Trent (with good reason) and is miserable watching his mom and Trent and the other adults go wild, until he stumbles into a job at a local water park, where he meets happy-go-lucky Owen, an adult who never grew up. There is a vintage feel to the movie (they joke that the water park hasn't changed since the 80's) that at times reminded me a bit of Adventureland (which I loved). The movie contains both drama and comedy and was very enjoyable.

Sunday night's movie, which we watched with our 19-year old son, was less of a success! We watched an older sci fi movie, Solaris, starring George Clooney. We all liked the premise: Solaris is a space station orbiting a strange planet where weird things have been happening. Clooney is a psychologist on earth who is sent into space to investigate what's been happening on Solaris. What he finds there is even stranger than expected and impossible to explain. It's a fascinating concept - even my son agreed that the book it is based on was probably very good - but it didn't have enough action for my son and husband. I liked it - my only complaint was that it is filmed with a lot of very dark scenes, dark both thematically and cinematically, so that it was sometimes difficult to see what was happening. But I thought it was thought-provoking and interesting. If you don't care much for action and enjoy sci fi or psychological thrillers, then you might want to give it a try. Incidentally, we never did quite figure out whether we'd watched it before, years ago. Brain fog and getting older can be beneficial at times!

Have you seen any good movies lately?

Struggles and Challenges

I just thought I should pop in to let you know I am still here! I apologize for the lack of blog posts lately. I have so many of them planned in my head but no time or energy to write. Our family has had a rough start to the new year.

My oldest son, who also has ME/CFS, as well as Lyme disease plus two other tick infections, was severely crashed from January 2 until just a couple of days ago. He has been incapacitated, stuck on the couch, and feeling pretty down. He had to drop the Winter Session college course he'd planned to take, and he still needs to make up his Calc 2 final from last semester. Thankfully, he is feeling a lot better now, as of a few days ago, so we are hoping that bad period is behind him, and he can get back to his normal baseline (symptomatic but able to function, taking 3 college classes at a time and living on campus when school starts again in February).

Then about a week ago, my youngest son felt something pop in his right knee, where he'd had three previous surgeries to repair cartilage damage. He says it feels just like before surgery #2, when a chunk of cartilage broke loose and was floating around in his knee. So, we saw the surgeon twice and took him for an MRI, and he is now scheduled for knee surgery #4 this coming week. The MRI didn't show any obvious damage, and it looks like the last cartilage repair is still intact, so the surgeon is hopeful this will be a simple procedure to just remove the loose piece (which seems very small) arthroscopically. Of course, there is no such thing as minor surgery for someone with ME/CFS and OI! We did learn something from those previous surgeries, though, so we've requested a full 12 hours of IV fluids post-surgery, even though this is normally a quick out-patient surgery. We are hoping this will prevent the month-long crash he experienced after the first two surgeries. Fingers crossed!

And then there's me. I had a rough week, with badly flared up symptoms and a lot of "must-do" activities that kept me from resting. My son's 16th birthday was this week, my mom came to visit for a few days, my neighborhood book group met, and then we packed up and went away for the weekend. Whew.

I think my recent worsening is due once again to yeast overgrowth. I am really frustrated by this. I went off the Diflucan a couple of weeks ago and have been struggling ever since. Every few days, my symptoms return - sore mouth, thrush on my tongue, terrible aches all over - and I need to start taking Diflucan again. My prescription is almost out, and I keep trying to get off it, but the yeast is obviously still not under control. If I have the tiniest bit of sugar, it flares up again. So, I will try to get in to see my doctor again when we get home - in between taking one son out of state to see his Lyme doctor and the other's knee surgery! Sometimes, it is a real challenge taking care of myself, as a sick mom with kids who have their own medical problems.

I am resting now. We are staying at my mom's condo in a ski resort (they aren't here) so that my son can celebrate his birthday snowboarding with two friends (the surgeon gave him the OK!). They are out having fun in the snow, and I am lying on a comfy couch under a fleece blanket, with a cup of herbal tea and a nice gas fire by my side. There is something so relaxing about just being away from your own home, filled with so many reminders of all the stuff you should be doing! Of course, the packing and unpacking and travel is tiring, but for now, I am getting some much overdue rest...at least until hungry hordes of teen boys come in from the slopes for dinner!

So, it looks like this week will be just as busy, but hopefully I will feel better. If anyone has additional tips for me on the yeast overgrowth, I am open to anything! I am still doing everything listed on my post on yeast but am still struggling.

Hope you are having a relaxing weekend!

Air Travel with ME/CFS

Or maybe I should call this post The Traveling Circus. I used to pride myself on being low-maintenance, but now I have to carry so many supplies with me and stick to such a careful routine that traveling is a real pain. Our preferred mode of travel is by car (preferably with our pop-up camper in tow!) - in our own vehicle, I can bring along all that I need and we can stick with our own little routines (like my nap time after lunch). Sometimes, though, like just recently during the holidays, we need to fly to visit family.

I thought I'd share my own strategies for travel - and especially air travel - since I've gotten pretty good at it over the past 12 years. I try to keep my carry-on bag as light as possible, though it is usually stuffed full.

Nap/Rest As Much As Possible

First, there are my napping/resting accessories:

I carry a backpack which is the easiest way to carry stuff through an airport, though my husband needed to carry my pack for me several times this trip. Inside the backpack, I stuff a very thin fleece blanket, a small neck pillow, and this time, I added an extra inflatable U-shaped neck pillow (all four of us have these now - they are awesome and easy to bring along! Here's the one we like and a cheaper alternative). The fleece blanket I usually fold up into a small rectangle and use as a lumbar support on airplane seats - even if I were healthy, those seats are uncomfortable, especially when you are 5'1" and they are designed for 6' tall males! I could also use it if I got cold, but that is unlikely - since ME/CFS, I am usually too hot!

The neck pillow(s) I use when I nap, which I have to do even more frequently on a long airplane/airport day. I also bring an eyemask and earplugs (for even better noise reduction, try silicone earplugs). Once the plane is in the air, I usually put all that on, lean my seat back, put my feet on top of my bag, and do my best to rest/nap as best I can. My sensory deprivation kit! The pillow and blanket pretty much fill up my backpack, but they are lightweight.

Treat/Monitor Orthostatic Intolerance

The other group of items I carry in my backpack (besides a lightweight paperback or my Kindle) are related to Orthostatic Intolerance (OI). In addition to too much exertion going through airports, the other major danger in a day of air travel for someone with ME/CFS is even worse OI than usual, brought on by air pressure changes and being upright too much (if you have ME/CFS and think OI doesn't apply to you - it probably does. Over 97% of ME/CFS patients have some form of OI, basically an inability to maintain a steady blood pressure and heart rate due to low blood volume and autonomic nervous system dysfunction).

I wear these lovely-looking kneesocks (they come in much nicer styles now, like the ones at this link). They are compression socks (you can also buy compression tights; wearing compression shorts around the pelvis area also helps). People with OI have difficulty keeping the blood circulating properly to heart and brain - it has a tendency to pool in the lower extremities, especially when upright - so the socks or stockings help quite a bit. You can buy them in any drugstore or online.

Other items, like the water bottle, are related to hydration. While it's important for anyone who flies to stay well-hydrated in that dry environment, it is critical for those of us with ME/CFS. Part of OI is not being able to hold onto fluids, so we need lots of fluids and lots of salt. Post-9/11 restrictions have made this more difficult! I used to bring a full water bottle and a large can of V-8 on planes with me (my son brought Gatorade), but now you can't bring liquids greater than 3 oz. through security. So, I bring my empty bottle, along with a small bottle of Elete, salt water drops that you add to your water (Elete is sold in tiny bottles that would meet airport regulations; I brought an almost-empty bottle - I buy mine on amazon) and fill my bottle with water from water fountains or just buy a couple of bottles of water once I am through security. My son does the same, plus he adds electrolyte solution (we like GU Brew tablets). I still look for V-8 in the airport before I fly or order tomato juice or Bloody Mary mix (without the alcohol) on the plane - both have lots of sodium plus potassium, too.

And finally, I wore my heart rate monitor while walking through the airport. It was enlightening, as always! I found that if I was carrying my backpack, my heart rate went up past my AT pretty quickly - that's when I handed it over to my husband to carry for me (I also had my laptop in my pack this trip which added too much weight for me - lesson learned).

Request Wheelchair Assistance

(added June 2023)

Thanks to many treatments (including treating OI), I am normally able to manage the walking that comes with air travel. I try to arrive at the airport early enough that I don't have to rush, I wear my heart rate monitor and stay within my limits, and I try not to carry too much weight. However, even with all that, air travel involves a lot of walking and standing in lines, all of which can cause a post-exertional crash for those with ME/CFS and long-COVID.

This past January, my husband and I had to fly at the last minute to Texas for a family funeral. This meant two connecting flights each way, with a full day of travel there and back. At the time, I was not in very good shape and knew I couldn't tolerate that much walking and standing. For the first time ever, I requested wheelchair assistance.

What a game-changer! In all three of the airports we flew through, the people who assisted me were incredibly kind and helpful. Our first flight left out of the very last gate in a very long concourse, and I never could have walked it myself at that time without crashing. On the way back, our first flight was delayed, leaving us less than 20 minutes to get from the end of one concourse in Atlanta (huge airport) to the end of a different concourse; we would have missed our connection without the assistance.

Plus, I learned about a hidden bonus with wheelchair assistance: no standing in lines! At security, we were whisked to the front of a line and through very quickly. I opted to walk onto the plane on my own, but that involved a lot of standing, too, and the assistant will stay and push you right to your seat, if you need that. Since standing still can cause a crash even faster than walking (again due to OI, with blood pooling in lower extremities even faster when you're not moving), this is a very important benefit.

Don't be afraid to ask for the help you need! It was a very positive experience for me.

So, those are my air travel tips. It all helps, though a long day of air travel is still exhausting. With all of these aids, it is easier and takes me much less time to recover.

Do you have any air travel tips to add to my list?

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Movie Monday 1/6

Well, between more holiday days last week plus snow days when we returned home, our family had lots of down time together, so we watched a couple of good movies. As always, with two teen boys and a husband, they are all suspense/thriller/action movies, but if you like those these were both good:

Friday night, my younger son had a friend sleep over, and my husband wanted to watch his alma mater (Oklahoma State) play football, so my older son and I picked a mystery/thriller from Amazon Prime. We settled on an older movie, Copycat, about a serial killer. Holly Hunter does a great job as the SF detective trying to catch an elusive serial killer, and Sigourney Weaver plays a serial killer expert who has become a recluse ever since being attacked by a serial killer who'd read her books. It's a tense thriller filled with twists and turns. And, though it took me a while to recognize him, Harry Connick, Jr. plays the killer who attacked Weaver's character - you have never seen him so ugly or creepy! We both enjoyed it.

Saturday, our younger son went to the movies (you can see who has the active social life around here!), so the rest of us watched Elysium, a sci fi action film that my son has been eager to see. It takes place in 2154, when the earth is a mess and its wealthiest, most powerful citizens have left the planet to live on Elysium, an idyllic space station orbiting earth. Anti-immigration laws prevent the poor masses from coming to Elysium (ah, perhaps a bit of a political statement here?). Matt Damon plays an Average Joe who dreams of someday getting to Elysium with his childhood friend, Frey. The plot was unique and suspenseful, the acting good (Jodie Foster also stars as the evil Secretary of Defense on Elysium), and the movie is filled with nonstop action.

Have you seen any good movies lately?

Happy New Year 2014!

I am home!!! Ahhh....

We had a good trip to visit my father-in-law in Oklahoma, but I am so happy to be back in my own home. My father-in-law keeps his house at 78 degrees F year-round, so we all sweated through the week! My oldest son and I are always hot because of difficulty regulating our temperatures since CFS. At home, we usually set our thermostat at 65 - 67 during the day and 63 at night, so staying with my FIL is a major adjustment. Even when it is 20 degrees outside (as it was one day this week), we are all in shorts and t-shirts. And the funniest part? We talked my FIL in turning it down a couple of degrees, to 76, and he kept complaining he was cold!

He is 88 years old and lives alone, so it is quiet and low-key when we visit, but he normally eats peanut butter sandwiches and canned goods, so I try to cook a lot while we are there. This time, I made 3 big meals and froze left-overs for him. Try standing over a hot stove in a 78 degree house! Not good for OI!

The biggest problem I encountered this week, though, was that I got bronchitis. The very first morning we were there, I woke up with a KILLER sore throat and congestion. For me, that pattern always ends with bronchitis. Normally, it takes a week or two to get to that point, but this time, I was coughing within 2 days, and my chest felt like it was in a vise. I self-diagnosed and immediately started Zithromax (thank goodness I had thrown some in my medication bag when I packed!). Thankfully, within 12 hours, I started to feel better and the pressure left my chest, so by yesterday, I was in good enough shape to fly home (a long 8-hour day of airports, airplanes, and car rides).

On the downside, you may recall that I just spent months battling yeast overgrowth. I had finally gotten it under control, with Diflucan, supplements, and a no-sugar diet, just in time for Christmas so that I could indulge in a few sweet treats. So, now I am back on antibiotcs, and the thrush is back in my mouth! I am still on Diflucan and all the rest and am now back to the strict no-sugar diet. And I just discovered that my cough drops contain sugar. sigh....

Anyway, it is a new day and a new year! I absolutely love this time of year. My natural optimism shines through with thoughts of all the promise and opportunities of a fresh new year. I won't have much time to myself until next week - my son and husband are at school and work today, but there is a big snow storm predicted for tonight which means everything will be closed tomorrow here in Delaware. But, next week, I will take a look back at my progress toward goals in 2013 and new goals for 2014.

Here's to a Happy and Healthy New Year!

Celebrating New Year's Eve with my son in Oklahoma

Movie Monday 12/30

We are enjoying the holidays, visiting family out of town (yes, again! third time this month). I seem to finally have the yeast overgrowth under control, though I am still on Diflucan. However, the first day after we arrived here, I got a killer sore throat and congestion - usually the starting signs of a long, difficult crash that often ends with bronchitis. I'm not feeling completely crashed - a bit low in energy - but I do still have some congestion and a cough is starting. I just hope I can make it back home without things getting much worse. A long day spent in an airport when crashed is torture.

Anyway, with everyone home for the holiday break and now visiting my father-in-law, we have had a little time for movies:

Before Christmas, we watched The Holiday with our sons. My husband and I had seen it before, but our sons hadn't. It's a fun, sweet holiday story with a great cast. Kate Winslet plays a British woman from a small town who wants to get away to help herself recover from a toxic relationship. Cameron Diaz plays a young woman in LA who creates movie trailers for Hollywood production companies and just broke up with her long-time boyfriend. Both women want to get away from their lives, and they connect on a house-sharing website and agree to switch homes for two weeks. Their homes and their lives are very different, so lots of fun ensues. Of course, there are love interests to help heal their wounds: Jack Black plays a sweet music composer who works with Diaz's character in LA, and Jude Law plays the adorable brother of Winslet's character. We all enjoyed it - it's a nice modern take on the holiday movie.

Here at my father-in-law's house, we all watched The World Is Not Enough, a James Bond movie starring Pierce Brosnan. It is the typical Bond movie, with a complicated plot, cool gadgets, and lots of fast-paced action and explosions. I'm not a big Bond aficionado myself, but my husband and sons said this wasn't one of the better ones. I agree that Brosnan isn't the best Bond - he didn't seem to have that classic Bond confidence and unflappable calm. But it was an action-packed movie that everyone from my 15-year old son to my 88-year old father-in-law enjoyed, so if you like action, it's good for a little escape from reality.

In between, we have been watching lots of The Mentalist (season 5) and Modern Family (season 4), two DVD sets that we gave our sons for Christmas, both excellent, as always.

Have you seen any good movies lately?

Movie Monday 12/23

With my college son home and the holiday break in full swing, we were able to watch some movies this weekend.

Both boys were occupied with friends in Friday night, so my husband and I watched Frozen Ground, a very creepy movie about a serial killer in Alaska. If tension and suspense keep you up at night, it's better to skip this one! It was an excellent movie and very well made, with an outstanding cast. Nicholas Cage plays the state trooper heading up the investigation, and John Cusack is chilling as the psychotic killer who is a loved member of the community. Vanessa Hudgens gives a surprisingly emotional performance - far different than her role in High School Musical! - as a prostitute who was beaten and raped by the killer but managed to escape. The movie takes place in Alaska in winter, so it is a very dark setting and a darker theme, especially when we found out it was based on a true story. It was gripping and compelling, with nail-biting suspense, and thoroughly chilling.

Saturday night, our younger son had friends over, so we watched Arbitrage with our 19-year old son, a movie we'd seen previewed on the DVD we watched the night before! This one is free on Amazon Prime right now. It was another suspense movie but of an entirely different sort. Richard Gere stars as a wealthy business man who seems to have it all - good looks, a beautiful wife (played by Susan Sarandon), a loving family, and a thriving business. He's on the cover of Forbes, and is closing a deal to sell his business for over 400 million dollars. Then things begin to slowly unravel, after he is in an accident and his various lies come back to haunt him. "What a tangled web we weave..." It's a good movie with a great cast and a complex plot that keeps you guessing.

Have you seen any good movies lately?

Symptoms of and Treatments for Yeast Overgrowth

Yes, I am still here! Sorry for the long silence here at the blog. As most of you know, I have had a very difficult fall and have been severely crashed for much of the past 3 months. With the holiday season on top of that, I just haven't had any time/energy at all for writing (my book blogs and commercial writing have been neglected also!). But I am back now - back to feeling pretty good and back here on the blog.

As it turned out, much of my suffering the past three months was due to yeast overgrowth, a fact that I didn't figure out until about a month ago. I wanted to share my recent experiences with you in the hopes that perhaps it might help some of you.

Yeast (aka candida) are a type of fungus that normally live in small amounts in your mouth and digestive tract. Problems occur when the yeast increases and/or good bacteria in your gut that normally keeps it in check decreases. One common cause of this yeast overgrowth is taking antibiotics - they kill off all the bacteria in your system, including the good stuff that lives in your digestive tract, allowing the yeast to take over. This is what happened to me this time. Back in September, I took 5 days' of Zithromax for bronchitis. Under normal circumstances, such a small amount of antibiotics wouldn't bother me (especially since I take probiotics every day - see below), but ever since I was treated for Lyme disease (over 3 years of antibiotics every day), I've had occasional flare-ups of yeast overgrowth.

For those of us who have ME/CFS, we don't even need antibiotics to cause yeast overgrowth. Since immune system and GI dysfunctions are an integral part of our illness, yeast overgrowth is a very common occurrence, though one that is often missed or not diagnosed.

How did I know I had a problem with yeast overgrowth? Well, it took me many weeks to figure it out, even though I've experienced it before. My symptoms included fatigue that was much worse than usual and severe flu-like aches all over my body; in fact, the aches these past few months were some of the worst I have experienced in my 12 years with ME/CFS. Increased brain fog is also common with yeast overgrowth. At one point, I looked back at my records and saw that of the past 60 days, I'd only been well enough to leave the house 14 days. That's far worse than is normal for me. For a long time, I assumed that the virus that triggered my crash initially (and started my bronchitis) was the reason for the prolonged crash.

I finally figured out that yeast was responsible when I noticed that my tongue hurt, especially when I ate certain foods (anything bitter, sour, or sugary). The light bulb finally went off at that point, and I ran to the bathroom mirror. Sure enough, I had active thrush on my tongue. Thrush is one sign of a yeast overgrowth - when you stick your tongue out, it looks like a whitish or yellowish fuzz on the back of your tongue and mouth. It generally makes your mouth hurt or feel sore, as mine was feeling, though sometimes it's your throat that feels sore - something easily excused by "normal" CFS symptoms!  While I usually get thrush in my mouth when I have yeast overgrowth, some people get vaginal yeast infections or an itchy feeling around the vagina or anus.

So, what do you do about it? Well, I should have gone directly to my doctor, but instead I tried to treat it myself first (and lost another month to the couch!). There are lots and lots of herbal remedies and supplements that can help, as well as dietary changes, but I wasn't making much progress with those approaches. They definitely helped, but I found that if I had even the tiniest bit of sugar, my symptoms returned. I finally went to see my doctor a couple of weeks ago, and she prescribed an anti-yeast medication (the two most common ones are Diflucan and Nyastatin). This time, it had gotten so bad that it took me a full 10 days on Diflucan before I finally began to feel better...and then it was like someone had flipped a switch!

Here are all the remedies that my son (who is currently being treated for Lyme disease) and I have tried for yeast overgrowth:

* Probiotic: Probiotic are the healthy bacteria that normally live in your GI tract; they also affect the immune system, so it's a good idea for anyone with ME/CFS to take them daily and to double the dose when you are on antibiotics (always take it at least 2-3 hours away from antibtiocs so the meds don't kill off the good bacteria). I take New Chapter All-Flora (dairy free), 1x/day normally and 2x/day during a yeast flare-up; my son takes HMF Forte brand, which was recently rated as having the highest amount of active bacteria.

* Saccharomyces Boulardii: This is a specific type of probiotic that is most effective against yeast. Ever since my Lyme treatment, I take it every day (as does my son). I am now taking it 2x/day until I get the yeast under control.

* Phytostan: This supplement blend was recommended by a Lyme treatment guide that I read, but it seems to have been discontinued just this week. Its main ingredient is caprylic acid, plus other anti-yeast ingredients, so I found an alternative that seems to be comparable, NOW brand Candida Support. My son and I are both currently taking it 2x/day. (NOTE: Phytostan has been discontinued but there are lots of anti-yeast supplement blends available)

* ADP (emulsified oil of oregano) and/or Olive Leaf Extract: Both of these herbal supplements are potent anti-fungals, antivirals, and antibacterials. Our Lyme doctor recommends ADP, and we have taken Olive Leaf for years when exposed to a virus. One potential problem, however, is that both of them could possibly kill off good bacteria while also killing off yeast. Currently, we both take one or the other 1x/day.

* Grapefruit Seed Extract: Another supplement recommended in Lyme treatment guidelines to prevent overgrowth of yeast. We both take it 2x/day for now; I will probably stop once I get this under control again.

Raw, unfiltered apple cider vinegar:  This is NASTY tasting stuff! My son tried it once and said no way, but I took it every day for a while, until I started the Diflucan. Lots of websites recommend this for yeast - I have no idea if it helps, but it seemed to at the time. 1 Tbls diluted in water, 1x per day as needed.

Tea Tree Oil:  Another herbal remedy I've read about - you can add a drop to your toothpaste (and brush your tongue, too) or add a few drops to a cup of water and gargle/rinse your mouth with it. Again, pretty nasty tasting, but it did seem to help, especially if you have active thrush in your mouth.

Avoid Sugar, Refined Carbs, Yeast, and Alcohol: OK, this is the one that's been the toughest for me, and I still can't convince my son to try it (even though his Lyme doctor told him at the last visit that sugar is like poison for him!). People with ME/CFS already avoid alcohol (since it makes OI so much worse), but the rest has been tough for me. However, I did find that it helped. That's when I finally went to the doctor - when the yeast seemed to be improving and even a single bite of something sugary would make it flare up again. I miss my square of dark chocolate at night! (not to mention fruit). Just like you see when you bake something with yeast, yeast literally feeds on sugar, so this can be an important step in difficult cases.

Diflucan or Nyastatin: These are prescription medications and are often necessary when yeast overgrowth has been present for a long time or is stubborn. Like I said, taking Diflucan finally flipped the switch that got me back on my feet, so I am grateful. I have been on it for 16 days so far and still can't eat sugar without a flare-up, so I will probably need to stay on it a bit longer. My son has been on it for years, as part of his Lyme treatment (and I took it every day when I was being treated for Lyme, too). I know people who were totally incapacitated by Lyme disease even after their treatment, until they took an anti-yeast medication and were magically better. I highly recommend seeing your doctor sooner rather than later if you suspect yeast overgrowth or have signs of thrush or yeast infection.

Here is a general overview on diagnosis, treatment, and prevention of yeast overgrowth. And here is a far more complex article on yeast overgrowth that might be helpful specifically for those with ME/CFS. This ties in with methylation issues which are very, very common in people with our illness. This is a complex topic for another day, but we have been investigating this in depth because it is certainly a huge factor in my son's illnesses...and after reading this article about the connection between methylation and yeast, I am now wondering if it might be critical for me as well. If you like, skip past all the details about methylation and focus in on the "Recommendations for reducing yeast overgrowth" at the bottom. We haven't tried many of these yet, though I plan to.

So, that's been my recent experience - another of many examples where I thought I knew all about a topic and then I found out I had a lot to learn! I hope this is helpful.

And, please, let me know if you have some tips or remedies for yeast overgrowth that I didn't mention here. I am still relying on Diflucan at the moment and still unable to eat any sugar (plus my son is constantly battling yeast overgrowth), so any information is greatly appreciated!

* P.S. Please see my later post on Timing of Supplements as to when to take the anti-yeast supplements and probiotics. I had it all messed up at first!

The Invisible Illness

Sorry I haven't posted in so long. We spent most of last week in my hometown, Rochester, NY, visiting family for the Thanksgiving holiday weekend. As you can imagine, it was exhausting, but I did enjoy seeing everyone. It took us 11 hours on the road to get there Wednesday (with a stop at the Lyme doctor who is sort of but not exactly on the way), then there was a BIG family gathering each day with a different branch of the family. Then, an 8-hour drive home on Sunday (most restful part of the weekend!)

Anyway, I managed OK while we were gone by resting a lot at my dad's, but I am still not doing well overall. I've been struggling with yeast overgrowth for months now. I think I am finally getting it under control (I promise a post on all the remedies I've tried when I am feeling better), but this week I have still been feeling pretty horrible, especially in the second half of each day, with sore throat and severe flu-like aches. Each afternoon and evening has been a major struggle for me, both physically and emotionally.

A couple of times this week, I have been reminded of why ME/CFS is called an Invisible Illness.

The first time was on the phone with a family member who'd been in Rochester with us. She remarked on how great my son had seemed, so full of energy that he must be doing much better. In fact, as most of you know, my son has been much worse the past six months (and this relative knows that), and I explained that on the day in question, he'd spent all morning and afternoon in bed because he felt so terrible after playing with his little cousins the night before. He was in such bad shape that morning, he was lying on the floor, until he decided to just go back to bed. But, by late afternoon, he had rested enough to be able to play football and laugh with another set of cousins...and THAT is what everyone saw. Invisible.

This week, even though I was feeling awful and knew I shouldn't, I went to my neighborhood book group Wednesday evening. I'd tried to rest as much as possible all day, but I was still not in good shape. I figured I could manage just sitting on someone's sofa for a couple of hours and talking, but I was wrong. The aches quickly deepened, my orthostatic intolerance flared up, and brain fog began to set in. After an hour, I was feeling horrible. I tried pulling my feet up on the couch and sitting cross-legged (for OI) which helped temporarily, but my symptoms continued to worsen. I was slumped way down, with my head against the back of the sofa, and began to have trouble concentrating and speaking. When I went to the bathroom, I had trouble walking normally and had to shuffle along slowly.

So, of course, I figured it must be obvious to all my friends and neighbors around me. Nope. When I mumbled that I needed to go because I was having a bad day, a close neighbor/friend who has health problems of her own was surprised: "Really?" she asked. By this point, I was ready to curl up on the ground and burst into tears, and I was stunned to realize that no one could tell. How is that even possible? Invisible.

My husband often says that no one outside of our household can possibly understand or even imagine the bizarre life that we live. People only see us when we are well enough to be out; no one but our immediate families are there to witness the days or weeks spent lying prone. It's been months since I've been well enough to manage the grocery store - my husband had to go again tonight to restock. It makes me feel lonely to realize what an isolated world we sometimes live in, that even among close friends and family members, our suffering - even when severe - is often invisible. 

WEGO Post #19: 3 Tips for Caregivers

To celebrate National Health Blog Post Month, WEGO Health is hosting a 30 Days, 30 Posts Challenge for health-related bloggers. Each day, they have a different topic for a short blog post, with a Facebook page for posting links. Today's topic: 3 Pieces of Advice for Caregivers.

That was actually yesterday's topic, but you should be used to my always being behind by now! Besides, this is a timely topic that deserves attention because November is also National Family Caregivers Month, a time to recognize the unsung heroes in our lives: those who devote themselves to taking care of ill family members or friends. For more information, plus resources like books and websites for caregivers, check out this older post on National Family Caregivers Month from November 2009.

I have unusual insight on this topic because I am not only a chronically ill person who sometimes needs help myself but also a caregiver of my two sons. Thank goodness they are both doing OK at the moment and in school, but they've both had CFS (one mild and one more severe) since 2004, and my older son also has Lyme disease and two other tick-borne infections. So, I have had many years of caring for them when they are in bad shape or crash (my older son has been completely incapacitated at times). Those are difficult times, indeed, when I am sick myself but also needing to take care of them.

So, from first-hand experience, here are my Top 3 Tips for Caregivers:

Take Care of Yourself. It seems obvious, but even for healthy caregivers, it is easy to overlook your own needs when you are so focused on taking care of someone else. If it seems selfish to think of yourself when your loved one is suffering, just remember that you'll be no good to them if you don't take care of yourself and maintain your own health (as much as you can). Eat a healthy diet, get enough rest, exercise if you are able to, and get outdoors as much as possible. Doing these things for yourself makes you a better caregiver.

Connect with Others. It is so important to connect with other people in similar situations and so much easier now with the internet! In a recent post on favorite quotes, I included this one:

“Friendship is born at that moment when one person says to another, 'What! You too? I thought that no one but myself...'.”
          - C.S. Lewis

It is such a powerful feeling when you meet (whether in person or online) someone in the same situation as you, someone who instantly understands the challenges you face. It feels like a huge relief, like a weight being lifted from your shoulders, when you are able to talk to someone else who totally gets it. If you are a parent taking care of a sick child, teen, or young adult, consider joining our Facebook group for Parents (just send me a quick e-mail or leave a comment here or on my Facebook page to let me know who you are - that way I can approve your membership right away without a background check). If you are some other sort of caregiver - a spouse taking care of a sick partner or a child taking care of a sick parent, etc. - then try that blog post from November 2009 - there are plenty of links there for caregivers.

Take a Break. Though similar to #1, Take Care of Yourself, just taking care of yourself on a daily basis isn't enough. You also need to take a break once in a while. Find someone else - a friend or family member, someone from church, a professional caregiver - who can take over your duties for a while, and get out of the house!  Whether it's an hour-long lunch with friends or a weekend away by yourself, getting away from your duties is rejuvenating and will help you to be a calmer, more patient caregiver. A year and a half ago, I had ignored all of this advice for too long, had two sick kids at home, and got to the point where I felt like I was just going to explode. An impromptu weekend away by myself helped immensely. Having no responsibilities and no one to take care of but myself for 24 hours felt life-changing, and I came back a better caregiver for my sons. If you can't manage a weekend (mine didn't cost anything - I stayed at a friend's beach rental in the off-season!), at least get out by yourself once a week or so - not to go to the drugstore or grocery store but to do something just for you. See a movie, go shopping for yourself, have lunch or dinner with friends, go to a museum...whatever fulfills and restores you.

Being a caregiver is a never-ending, challenging, and often thankless job. I hope these tips help to make things easier - and if you are the ill one, then encourage your caregivers to do these things!

WEGO Post #15: 3 Favorite Chronic Illness Blogs

To celebrate National Health Blog Post Month, WEGO Health is hosting a 30 Days, 30 Posts Challenge for health-related bloggers. Each day, they have a different topic for a short blog post, with a Facebook page for posting links. Today's topic: 3 Favorite People to Follow on Social Media. Since I have avoided Twitter, Pinterest, and Instagram so far (seems like they would suck up too much energy - I can barely keep up with Facebook and blogs as it is!)...so I am focusing on my 3 Favorite Chronic Illness Blogs:

Wow, it's hard to pick only 3. I may have to cheat a bit here. I'm going to divide these into two categories: Informational Blogs and Supportive Blogs.

Informational Blogs are those you can count on for the latest information on research, advocacy, and other important, ever-changing topics that I just can't keep up with on my own. In this category, I rely especially on two excellent blogs:

Jennie at Occupy CFS - Jennie was a lawyer in her pre-illness life, and she has a rare talent for distilling complex information into understandable bits. She is an excellent writer and has the ability to report on complicated, even controversial topics with uncommon grace and a lack of bias. Besides, I have met Jennie (she lives near me), and she is a kind and delightful person. I rely heavily on Jennie to sift through all the information and keep me up-to-date.

Research 1st...which I see has just (a few minutes ago) announced its new name and location, Solve CFS Blog - This is the official blog of the CFIDS Association of America which has proven itself over the years to be the #1 resource for keeping up-to-date on research news, as well as other news of interest to those with ME/CFS. I have relied on this website for almost 11 years, ever since my diagnosis, and the blog they started last year has proven very useful in staying current on all the latest news.

Supportive Blogs - these are the personal blogs written by other people with ME/CFS, the ones that are great for honest accounts of what life is really like with chronic illness and for finding emotional support. Here are some of my own personal favorites:

My World, written by Upnorth, a Canadian woman who has had ME/CFS for over 11 years, is a beautifully written blog that often includes nature photos or artwork. Upnorth writes eloquently of the ups and downs of life with this crazy illness and has an upbeat, positive attitude. Although we have never met, she's become a good friend of mine.

Infinite Daze by Baffled - Like many of us with chronic illness blogs, she writes of her own daily struggles, but she also often writes of medical issues, healthy eating, and even some much-needed humor. Another excellent blogger who has been around the blogosphere for many years and has become a good friend.

Mummy and M.E. and MEcuperate by Jennifer Barber - Mummy and M.E. is Jennifer's blog, about being a chronically ill mom of young kids, and MEcuperate is the website she started last year to provide a place for people with ME/CFS to gather - a virtual clubhouse for talking about books, movies, recipes, crafts, and yes, illness, too. I enjoy both the blog and the website, and Jennifer has also become a virtual friend.

OK, so that's 5 in all.  I could just go on and on here - there are so many great blogs out there that I follow! But these are a good sampling of the ones I have followed most closely.

What blogs or other social media resources are your favorites?

WEGO Post #13: How Has Illness Changed You?

To celebrate National Health Blog Post Month, WEGO Health is hosting a 30 Days, 30 Posts Challenge for health-related bloggers. Each day, they have a different topic for a short blog post, with a Facebook page for posting links. Today's topic:

Evolution
Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?

 Wow, this is a big topic, but I will try not to be too long-winded. The past 11 1/2 years of living with chronic illness have dramatically changed my life. I think their word - evolution - is a good one because for the most part, parts of me that were already present have been enhanced while other parts have faded, in a slow, gradual process of change.

I have always seen myself as strong, capable, independent, and confident, so suddenly finding myself helpless and at the mercy of an unpredictable illness was a severe blow, requiring significant changes to my normal ways of approaching life. Before illness, if I ran into a challenge - sick child, looming deadline, insane travel schedule - I attacked it full-on: push through, do more, sleep less. My life philosophy back in those days was work hard and play hard, though having children definitely began to slow me down a bit. I was also a perfectionist and often put pressure on myself to get it all done and do everything well.

I must admit, those tendencies are still here, under the surface, but I have had to accept that I can not do it all anymore. This has definitely been an evolution, not an overnight change, in slow steps, often one step forward and two steps back. Since I usually operate at about 40-60% (and sometimes even lower) of the energy level and stamina that I had before becoming ill, I have been forced to adjust my expectations for myself. Sure, a part of me still wants to do everything, but I know where my limits are and I work hard to stay within them.

Similarly, I have had to lower my standards - for housecleaning, for cooking, for entertaining, for just about everything. Cleaning is a guaranteed crash, so I just don't even attempt it; I wait for our cleaning service to come every other week (a luxury in the old days but now a necessity) or ask my husband or son to help and often just live with the mess. I do still love to cook and do still have high standards for making tasty and healthy meals, but those meals are simpler these days, as I know I can't spend much time on my feet. In the old days, I would have been horrified at the thought of serving take-out to house guests, but now I know that if we are having visitors, my energy will be especially limited and I need to conserve it however I can. (Coincidentally, my mother called while I was writing this to ask me what I can cook and bring for Thanksgiving dinner! I explained that the 8-hour trip will take all my energy, and I won't be able to do any cooking. She didn't get it, just kept saying what a great cook I am. Sigh...see, in the old days, I would have let her talk me into doing more than I know I can manage, but now, I know that attempting to bake pies the day before a big trip like this would leave me with no energy left for enjoying my family's company. Still evolving...)

I am still very goal-oriented, but the nature of my goals has changed somewhat. I do still have similar writing goals to before I got sick, but I have had to accept a much slower pace of progress. I know I can only manage an hour or so (at most) of productive time per day for writing. Other goals have become simpler, focused on basic self-care: to take a short walk and do at least 10 minutes of gentle yoga a few times a week, to rest when I feel bad, to try to see friends once a week. I do still tend to set too many goals and think I can accomplish more than I can, even though I have adjusted my goals downward constantly.

As for values, I think certain values that were present before have become more prominent through my illness experiences, particularly the importance of family and helping other people. These have always been important to me, but with so many other aspects of my life stripped away, they have taken on a greater emphasis in my life. The experiences of having three of the four of us in our household seriously ill all at the same time changed all of us - we know that those ties that bind us together can never be broken, that we will always be here for each other, and that together, we can face any challenge.

Experiencing severe illness together has left our family more resilient and more accepting of the normal ups and downs in any life. We know we need to roll with the punches and take things one day at a time, so when something bad happens (like last week, when our college-aged son came home very ill), we tend to take it more in stride. Learning first-hand that you have little control over your own life is a hard lesson, but it tends to allow you to handle the bad stuff more readily.

Our experiences have also made all of us more empathetic. It has always been important to me to help others and to feel like I am doing something valuable - that turned out to be my strongest "career anchor" back at the beginning of my engineering career (we had to take all sorts of quizzes on career anchors!). Since becoming ill, though, helping others has become a significant part of my life. When our kids got sick and we eventually found treatments that helped him get back to school, helping others became even more important. Somehow, helping others makes our own difficult experiences feel more worthwhile.

Well, I have babbled on for too long, I think. How about you? How has illness changed you?

Movie Tuesday 11/12

Too much to do yesterday with both boys at home and too achy to blog in the evening, so Movie Monday is a day late this week. I didn't want to skip it, though, because we watched a lot of movies last week!

My oldest son is home from college in a major crash. Unfortunately, it is likely that he has mono (still waiting for the blood test results), so this could last a while. He had a very rough week and was understandably upset over having to leave school and all that he's missing, so we watched a LOT of TV and movies together to cheer him up. With two teen sons at home and my husband, we watched a lot of action movies in particular (though hang in for the last and best one below if you're not a fan of action). Although they were all good movies and interesting, I have seen enough fighting, shooting, and blood to last me a lifetime this week! Anyone want to join me in a chick flick? Please?

Friday night, we watched Parker, a crime caper movie starring Jason Statham (who we loved in The Italian Job) as a criminal with a conscience named Parker. He will only steal from those who can afford it and never kills an innocent person. Yes, high standards, indeed! Nick Nolte stars as an old thief (and father of Parker's girlfriend) who sets Parker up with a crew for a major heist at the Ohio State Fair. Parker makes his rules clear to the crew, but something goes wrong, and an innocent bystander dies. The crew fights afterward over the outcome and how to split the take, and the four men leave Parker for dead by the side of the road. Parker is not, of course, dead, and makes it his goal to get revenge on the four remaining crew members. He moves to West Palm Beach where they are busy planning their next heist, and enlists the help of novice real estate agent Leslie, played by Jennifer Lopez. The plot is great and the acting is good, but be warned that this is a very violent movie! Lots of guns, knives, and blood and lots of f-words.

Along similar lines, the next night we watched Olympus Has Fallen, another movie with a great cast, intriguing plot, and lots of violence. Aaron Eckhart plays the President of the US, Ashley Judd is the First Lady, and Gerard Butler plays a Secret Service Agent who used to protect the first family but was moved to a desk job. Terrorists take over the White House and take the President and several from his cabinet hostage. Morgan Freeman plays the Speaker of the House, who has to take charge with so many of the leaders kidnapped. As you can see, this is an all-star cast, and they all do a magnificent job with this tense thriller. The details of the terrorist attack, surrounding politics, and possible solutions are absolutely fascinating, prompting lots of thoughts of What If. But, like Parker, this is a very violent movie, with lots of guns and lots of blood. The terrorists are ruthless and leave a lot of civilians and White House staff dead on their way to capture the President. So, it's an excellent movie, but don't say I didn't warn you, if you don't like violence or can't handle movie tension.

Sunday night, we browsed through the free movies on Amazon and ended up watching Equilibrium, a dystopian sci fi thriller that...guess what? Yup, it turned out to be very violent. Less blood this time but lots of guns and shooting. In this bleak future after World War 3, a frightening leader has ensured ongoing peace by outlawing emotion. Citizens are required to inject themselves with a pharmaceutical cocktail every day that suppresses all emotion. In addition, anything that might cause someone to feel something - art, music, books, and apparently most colors other than gray - have also been outlawed. Christian Bale stars as Preston, a Grammaton, one of the elite police force who seek out and destroy contraband and "Sense Offenders" (his partner is played by Taye Diggs). One day, Preston drops his dose of meds and gets a glimpse of what he's been missing. The plot is unique and engrossing, but again, skip this one if you don't like violence.

And finally, last night, we watched a completely peaceful movie without a single gunshot or drop of blood! Another freebie on Amazon Prime, Robot & Frank is a movie I've been wanting to see for a long time, and all four of us enjoyed it immensely. Frank, played fabulously by Frank Langella, is a retired cat burglar struggling with the beginnings of dementia in the near future. He lives on his own in a small house in rural New York state. His son comes to visit once a week, grudgingly, and his daughter is always calling from exotic places to say hello, but otherwise, he is on his own. When he sees that his Dad's memory is getting worse, his son brings Frank a robot caretaker to watch over his health and keep him safe. Resistant at first, Frank comes to see the robot as a friend, and finds a new purpose in his life in teaching his new friend his burglary skills. Also starring Susan Sarandon, Liv Tyler, and James Marsden, this movie is wonderful - warm, tender, and funny. And, I so want my own robot now! They could revolutionize life for the chronically ill.

Have you seen any good movies lately?

WEGO Post #11: How My Daily Nap Saves Me

To celebrate National Health Blog Post Month, WEGO Health is hosting a 30 Days, 30 Posts Challenge for health-related bloggers. Each day, they have a different topic for a short blog post, with a Facebook page for posting links. Today's topic:

Veteran’s Day
For all our veterans and family members, we celebrate this day because it marks the end of WWI, at the 11^th hour on the 11^th day of the 11^th month. Do you have a task you complete every day at the same time that helps you with your chronic illness? How long have you been doing this, how has it helped?

Something I do every day at the same time that helps my illness? Easy. That has to be my daily nap.

When I first learned about CFS and saw the CDC's information about it online, I went to the library, sat down in the health area, and looked for books that might tell me more. I found two books and brought them home: Dr. Bell's fabulous The Doctor's Guide to CFS: Understanding, Treating and Living with CFIDS and a memoir/nonfiction book called Chronic Fatigue Syndrome: A Comprehensive Guide to Symptoms, Treatments, and Solving the Practical Problems of CFS by Gregg Charles Fisher. Both books blew my mind (for the first time in a year of illness, I was reading about a condition that exactly matched my own experience), but Fisher's book brought me to tears.

As I read about Fisher's experiences (he and his wife both got ME/CFS at the same time and were severely disabled by it), I sobbed on my couch - every bit of it was so familiar to me. This was the first time I learned about the exercise intolerance inherent in ME/CFS and understood why I kept crashing. Fisher explained something else in his book that changed my life - the concept of proactive rest. He explained how people with CFS need to rest before we feel like we need it, how we need to bank rest ahead of time, and how a habit of proactive rest can help us to feel better all the time.

I have been taking Fisher's advice for the past 10 years. I take a nap every day after lunch, no matter what else is going on in my life, and it helps me cope better with my limitations every day. Without that nap, I am a wreck by 4 pm and useless in the evening. With the nap, I can usually manage to make dinner for my family and enjoy their company. Occasionally, I can even manage to go out in the evening with friends. On a really bad day, I take two naps - one in the morning and one in the afternoon.

Sure, it kind of sucks to live my life according to a toddler's schedule - I never schedule anything in the afternoon because I know it's the time of day when I feel my worst - but the alternative (crashing every day by dinnertime) is much worse. I even take that nap when we are traveling in the car (eye mask, ear plugs, and a pillow help) or when we are away from home.

My nap does not interfere with my nighttime sleep; in fact, I sleep much worse when I am over-tired from not resting. It took some practice to get into a routine where I fall asleep every day, but now it is a habit. To help fall asleep at nap time, I take 2-3 Valerian tablets (a mild herbal sedative, like chamomile, that wears off quickly for me), put on warm socks (I read a study where warm feet help you fall asleep quicker and it's true!), make my room as dark as possible, and read for about 15 minutes. I usually sleep between 45 - 90 minutes every afternoon.

So, that's my daily habit - what routine helps you to feel better?

(Although Dr. Bell's book is still fabulous, it is a bit out of date, but I was happy to see that Fisher's book has been updated and is even available on the Kindle now).

    

WEGO Post #8: Favorite Quotes

To celebrate National Health Blog Post Month, WEGO Health is hosting a 30 Days, 30 Posts Challenge for health-related bloggers. Each day, they have a different topic for a short blog post, with a Facebook page for posting links. Today's topic is 3 Favorite Quotes.

This is an easy one for me! I discovered these first two quotes in my first year of illness, and they have provided a lot of support and comfort over the years:

"You can only see as far as your headlights, but you can make the whole trip that way."
          - E.L. Doctorow

I think I actually found this one on a bottle of Jones soda! And I have since learned that Doctorow was talking about writing, but none of that matters. This quote is perfect for a life with chronic illness and learning to live one day at a time, sometimes just one moment at a time. We are relearning that lesson this week.

"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.'"
          - Mary Anne Radmacher

I came across this one in a catalog on a plaque and started sobbing! It was just what I needed to hear at that time. I printed a picture of the plaque and kept it in my bathroom, where I have re-read it at the end of many bad days. This really gave me strength - to understand that sometimes the best we can do - the most we can do - is just to wake up the next morning and do our best again.

And finally:

“Friendship is born at that moment when one person says to another, 'What! You too? I thought that no one but myself...'.”
          - C.S. Lewis 

This one perfectly describes the many friendships I have made online, with people I've never met in person but feel very close to (I can see my son rolling his eyes!). One of those friends, Annie, is co-administrator with me of a Facebook group I started for Parents whose children have ME/CFS and related illnesses. Annie added this quote to our group description, and it describes exactly how we all feel about each other and the group. Same with people I have gotten to know through blogging and through other illness-related Facebook groups. There is such power in those shared experiences; no one else in the world can truly understand what we live with and what our daily lives are like.

So, those are my three favorite quotes - do you have any?

(P.S. If you have a sick child/teen/young adult and want to join the Facebook parents' group, please leave me a comment, e-mail, or message on Facebook or on my Facebook page for this blog - it'll save a lot of time doing a background check if I know you legitimately belong when I see your member request).

WEGO Post #6: Mary Poppins Carpet Bag

Did you know that November is National Health Blog Post Month? No? I didn't, either. To celebrate, WEGO Health is hosting a 30 Days, 30 Posts Challenge for health-related bloggers. Each day, they have a different topic for a short blog post, with a Facebook page for posting links. I thought I'd try participating as much as I can manage.


So, I am jumping in at Day 7 - today's topic is Mary Poppins Carpet Bag: what do you carry in your purse/bag/backpack?

First and foremost, I never go anywhere without food and my water bottle! My bottle doesn't actually fit in my purse but I always carry it, and there are always little snacks in my purse in case I go too long between meals and hypoglycemia hits! My water bottle contains lots of ice (I like my water icy cold, even in winter), water, and lately, a quarter teaspoon of Elete, an electrolyte solution (the extra salt helps keep me upright). For food, I often have a mini baggie with a handful of almonds or peanuts or cashews. Sometimes I also have a granola bar, though most of those contain dairy and/or are high in sugar. I love KIND bars, but they are 200 calories each, so I only indulge in them rarely.

I also carry a wide range of medications and supplements - the zipper pocket in my purse is full! There is a baggie of ibuprofen, a baggie of Valerian (in case I need to take a nap in the car), Sudafed and aspirin in case of headache, Immodium, Gas-X, and lots of Lact-Aid.

Oh, and I always carry with me copies of medication lists for myself and each of my sons. My older son and I each have a list that is a full page long, showing all medications and supplements. It is in table format, with columns for Medication, Strength, Dosing (i.e. time of day and number of times per day), Reason, and for Social Security, I had to add Start Date and Prescribing Doctor. I wish I could include a copy here, but I don't know how to do that! I carry these with me in case of emergency, but they are also VERY useful when one of us sees a new doctor - there's no way I could write all these down every time! I just attach the list to the forms and print a new one when I get home.

Otherwise, it's the normal stuff in my purse - my wallet, sunglasses, phone, lip balm, and lately, reading glasses.

How about you, Mary Poppins? What do you carry with you?

A Change of Scenery

The beach is so peaceful and relaxing.

 Sometimes a change of scenery can do wonders!

As most of you know, I've been going through a bad period this past month, and last week was just as bad. Friday I pretty much hit bottom - severe sore throat, horrible aches, exhaustion. I did something I rarely do and stayed in my pajamas in bed all day. By afternoon, my mood matched my physical condition - all of these down days finally got to me, and I was feeling pretty depressed.

I dragged my chair out onto our sunny deck, laid in the sunshine, and watched some inspirational TED talks - that often helps, and it did this time, too.

Rehoboth Beach Boardwalk

Things began to turn around in the evening. I started to feel just a bit better, our son got invited away for the weekend, and my husband and I suddenly had a weekend alone in front of us. We've been trying to get away together for a long time - over a year! - so we made a snap decision to just get out of town. Of course, we had no reservations, and it was too late to use the Bed & Breakfast gift card my mom gave us for Christmas last year. So, we made a quick reservation at our favorite inexpensive hotel at the beach (Rehoboth Beach here in Delaware) - just making that reservation lifted my spirits!

Enjoying a relaxing breakfast

Saturday morning, I was still somewhat achy but definitely feeling better. We packed a quick overnight bag - well, actually, it wasn't that simple, as you probably know - we CFSer's do not travel light! I packed an overnight bag, all my medications, just-in-case medications, my own pillow and blanket in case I needed to sleep in the car, etc. By 12:30 pm, we were at the beach and on vacation! It was such a great feeling just to be away and on our own, with no responsibilities! For me, just being out of the house was a huge relief.

A short walk on the beach.

We had a wonderful 24-hour getaway together. We took a short walk on the beach (I wore my heart rate monitor, of course), ate at our favorite restaurants, splurged on fudge and homemade donuts, watched episodes of The Good Wife on my laptop in bed, and even managed a tiny bit of shopping at our two favorite stores there - a bookstore and a retro toy store. I still wasn't quite feeling up to my normal baseline, but I felt pretty good and managed quite well. It's that Vacation Paradox again - I can handle a lot more activity on vacation because there are no stress or obligations to use up my limited energy.

I had a brief crash again Monday afternoon and evening and thought I was in for another bad week, but today was better - not great, but OK. My college-aged son is not faring so well this week - for the first time in over a year of college, he had to come home last night to rest because he felt so horrible. He's got a severe sore throat, swollen glands, and some congestion, so I fear he may be starting what I went through a few weeks ago. Hopefully, he will rebound more quickly than I did because he can't afford to miss a lot of school. For now, I am giving him extra immune system meds and supplements, feeding him his favorite foods, and trying to take care of him.

The weekend away refreshed me - I feel like I am starting fresh this week! 

A beautiful day at the beach...though a bit chilly!