The Ultimate Guide to Family Travel as a Spoonie

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Coming fresh off our trip to Lake Placid, NY with the kids, I thought it might be helpful for other people struggling with chronic illness to hear how I manage to travel with kids, my dog, and my plethora of autoimmune and chronic illness issues. 

Here are my top 10 tips for family travel with fibromyalgia and other chronic illnesses:

If you are driving to your destination, there are several tips I have for you.  I haven't flown anywhere since my illnesses emerge, so I can't speak to that just yet.  But some of my tips are definitely useful for any type of travel, since I am sharing with you many of my tips for your time at your vacation spot!

1.  Pack everything you will need for the trip AND the car the day before you travel.  It's too much on your body to do all of the packing and preparing for the trip...and then drive/ride in the car for several hours all on the same day. If you can adjust your schedule to do so, plan the whole day beforehand as your packing day so that you can pack a little, rest a little, pack a little, rest a little.


2.  Travel in the morning, if you are able to, so that you are only contending with your typical pain and fatigue, not your typical plus all-the-packing-getting-ready-managing-kids-pain-and-fatigue.  You will most likely still feel additional pain and fatigue from packing the day before, but you will be better off with having some sleep in between packing and traveling.

3.  Hopefully you will be traveling with another adult companion, be it your spouse/significant other, family member, or friend.  You need someone to go with you that will be able to do at least half, if not the bulk of the driving.  Traveling in the car tends to be uncomfortable for Spoonies, whether driving or resting in the passenger's seat.  But the additional mental and physical energy it requires to drive long distances can be even more fatiguing and you don't want to wear yourself out before you even arrive at your destination!

4. Try to make frequent rest stops to use the bathroom, grab a bite to eat, and stretch your body out.  But keep them as short as possible.  You need to have the break from sitting, but the longer it takes you to reach your destination, the more fatigued you will be.  Of course, with kids in tow, frequent stopping is completely typical anyway, so take advantage of the kids' needs to meet your own, as well.  If you're like me and have IBS, too, that can mean more frequent stops, as well.  It can also mean that you may run into a situation where you need a rest area immediately, but there isn't one in sight.  Many times in the past, we have scooted off the highway to the nearest gas station, store, or fast food joint.  Just like for the kids, make sure you always have a package of wipes, plastic bags, and an extra outfit packed in your car that is easily accessible...just in case.

5. Try to schedule your trip so that you are not in a rush to get to your destination.  Even though the goal is to arrive in as little time as possible (limiting your sitting time), if you add the pressure and stress of a scheduled arrival time, it will increase your fatigue and pain.  So if you can, just go with the flow and try to enjoy the downtime with the family! 

6.  But also make sure you have activities for the children to do!  That's typically a mom no-brainer.  But when you have a chronic illness, the noise from the children being in such close proximity to your ears could make you extremely irritable.  You MUST prepare for them to be occupied if this is a possible outcome for you on your trip.  The point of traveling with your family is to have fun together and spend quality time together, not for the kids to be driving you nuts so much that you end up on the brink of insanity, screaming at them to JUSTBEQUIET because it truly hurts your ears due to their highly sensitive nature.   Oh, and also--the Quiet Game almost always works!  Whenever I say those magical words, "One, two, three, four, Quiet Game!"  I am guaranteed at least a couple of minutes of no whining, complaining, shouting, squealing...you get it! So use it whenever you need to!



7. Once you arrive at your destination and settle into your room, take at least a 20-30 minute rest.  If there is still time left in the day to do any sight-seeing or fun activities, you will need to recuperate as much as you can from the drive.  Of course, since we are often fatigued no matter how much rest we do get, you will most likely still feel it when you are up and moving about again, but that little bit of a rest could mean the difference between enjoying your family and wanting to cringe every time they speak.  (It ain't easy being a spooned!)

8.  Throughout your trip, plan times that you will be back in the hotel for downtime if you can.  The kids need the rest as much as you do (even if they don't want to admit it!).  I can't always get a nap in when we travel, but I have to have rest time planned into each day.  Sometimes that might mean just sitting down on a bench at a park or attraction for 15-20 minutes several times throughout the day if it's not feasible to go back to our room.  But life has changed since being diagnosed with my illnesses, and in order for me to last throughout the day, our pace for sight-seeing is no longer break-neck.  It might mean that we cannot do everything we'd like to do at our destination, but that's okay.  The point is to enjoy your family, experience new things together, and see the world. That doesn't mean that you have to kill yourself doing it!  You will be of no use to your family when you return home if you completely overdo it while you're away.

9.  The kids are probably going to want to take in all of the sights and activities that are energy-consuming for you.  But that doesn't mean you cannot choose an activity or two that is less physically-exhausting.  I find that when I plan activities for the children that are lower-key, mixed in with the exciting, all-consuming, physically-draining ones, it makes it less exhausting for them, too.  And they appreciate those moments just as much, when we are sitting in a park watching the squirrels, or next to the ocean/a lake/a stream breathing in the smells and relaxing to the sounds of the water.  Just as kids need to learn how to be "unplugged" from electronics, they also need to learn to just "be"...in nature, in the moment, with us, in our world...without the "whatarewedoingnext" mentality we've come to know and expect in our culture today.

10.  If you are able to, I highly recommend scheduling at least one down day right after you return from your trip.  Don't make any major plans to do ANYTHING!  And if you can, try to enlist the support of family or friends to help with the kids that first day you return home.  You will most likely need to rest quite a bit and the vacation laundry may have to wait a day or two, but it will all get done eventually.

If I think of more tips, I will come back to this post and edit it to include them, but for now, that's all, folks!  Do any of you have tips you could add to the list?  Please share them in the comments below!

Exhaustedly yours,
Marathon Momma

Are you a Marathon Momma?  Do you run marathons in between raising your little people to be decent humans? Or maybe you aren't a traditional runner, but a runner-after-kidser? Do you feel like every day is a marathon?  Yeah, me too!  Come join our community! Sign-up for our Email List!

This is Halloween, Halloween, Halloween!

Halloween has been my favorite holiday since 1976. The day I was born. OK, maybe not that long...since I wasn't aware of anything for a few years yet. Still, I have always loved Halloween. I was the girl who continued to trick-or-treat all through high school. And into college, I still wore costumes. Then it was time to start having Halloween parties while I was in grad school and that continued through until I had the twins. I have always decorated to the nines for my favorite holiday. I have more decorations for Halloween than for Christmas...and we're talking like six or seven giant bins! The fun and excitement of Halloween has always captured my heart, and the child in me never gave it up.

This year, was a little different, though. I was feeling overwhelmed, my body has been in pain, and I was feeling depressed. Although I felt guilty about it, I didn't decorate or do any of my usual fall or Halloween activities with my children. Last weekend, we did finally go buy our pumpkins. But I didn't have the energy or desire to carve them. I had purchased the boys costumes ahead of time, but not Little Miss's. That ended up being fine, because she decided she wanted to be a rockstar, anyway. And we already had things around the house that we could use to pull together a costume for her. So that worked out fine.

As Halloween was nearing this week, and Little Miss kept asking to carve her pumpkin, I finally relented and spent Thursday evening doing that with the children. Well, sort of. Little Miss carved her own and she did a great job! 

The boys well, they didn't really want to have much to do with it. Chub-Chub did try to carve a little and scoop out some of the pulp and seeds. 

But Miracle Man didn't want to even touch the pumpkin guts! It totally freaked him out! He did, however, take the stem off!

So basically, I carved three pumpkins-mine and the boys's!! Here they all are:

Little Miss's is the bottom left pumpkin.

So, there. We carved the pumpkins. But we still didn't have any decorations up. The kids kept asking if we could go ahead and put them up, and so I figured that we would do that on Friday. Sure, there would be only one day left before Halloween, but at least it was a day before and not the day after! Besides, I decided I would only pull out a few things so that it wouldn't be as exhausting and as much work for me.

Friday night came (all too quickly)! And there we were, pulling out the Halloween decorations. All of a sudden, MiracleMan  started running around the house shrieking, "Aahhhh! It's a spider! Aahhhh!!" He had pulled out one of my furry spiders and was so thrilled with the thing that he was making a huge deal out of it!

And it was at that moment that I realized that I had to do this for my children. No matter how terrible I felt. It was important to them. And they loved it!

The more they all screamed and shreiked and got excited, the more I kept pulling out and hanging up. Miracle Man's excitement especially continued to escalate! He grabbed my phone and started snapping pictures. He's a budding photographer (wink, wink). Here's a sample of his work:

They almost look like pics from a horror movie, don't they!?

Chub-chub was fun, too. His excitement for the night was setting up my giant skeleton that stands over 6 feet tall and says things when you walk past him. I set him up inside the house on Friday, but on Saturday I put him outside the house where the trick-or-treaters would be walking past. Mwahahahaha!!!!

Chub-chub couldn't wait to open the box and put him together, but once he heard the skeleton speaking, he wanted me to put him back in the box! Immediately!! Which I did NOT do! Of course, that doesn't quite compare to our dog, Kallie's, reaction. She was quite unnerved by this giant skeleton man! She wouldn't stop barking at him!! I had to turn him off and "introduce" him to her. She did eventually get used to him last night and all was well.

So, in the end, we had a great time, even if I got to the point where I was flat-out exhausted! The kids were thrilled to have decorations up for Halloween! And I was grateful to them for bringing me back some of my Halloween joy. 

When Saturday finally dawned, I couldn't wait to take them trick-or-treating! We cleaned a little bit and prepared some food, as we also got ready for trick-or-treaters. The boys took their afternoon nap, and once they woke up, it was time for costumes! :-) The boys were firemen, and Little Miss was her rockstar costume. She was too cold in it, though, so she covered up with her jacket. Kallie was a bumble bee, and I was a "good" witch (though some might argue that point). Prince Charming pulled out his cow costume that we got for him many years ago. Our whole family was ready to go!

We had a nice evening, walking, chatting with neighbors...and the kids brought home a ton of candy for us! Oops! I mean for themselves....yeah, themselves!

Today, I'm a train wreck. Every single part of my body hurts. And I am feeling incredibly fatigued. I didn't really move around the house much today at all. But, I am thrilled that I had enough energy yesterday so that I could enjoy trick-or-treating with my children! 

And in the end, I'm grateful to my children for reminding me, once again, that this is all about them. And I have to push through my pain, exhaustion, and depression, for them! They need me. They need me to show them how to have fun and how to celebrate holidays. They need me to teach them that it's OK to still be young and not have to shoulder any adult burdens. They need their momma to be who she used to be...even if only for a day!! I'm thankful for my kiddles...in some new ways, even.

Feeling blessed,

Marathon Momma 

The Bus Stops Here

I was driving by a bus stop today and started thinking to myself...I could park my car in the parking lot........get on the bus........and go somewhere....Forever. I could leave behind this life that, at the moment (a very long moment), I feel like I merely........exist.........in.

I actually started plotting out my escape as I was driving further down the road. I could get on one bus, take it somewhere, anywhere. Then, transfer to another one, and make my way down to Tennessee to visit my brother, whom I have not seen in 3 years. From there, I would go down even further south, like Florida, perhaps...where it's warmer and the cold and damp wouldn't hurt my body so much. Of course, it is damp there, though. Or maybe I could head over to California. I would love to go back to San Diego sometime! I could travel. Alone. Without anybody. I've done it before. I could do it again. I don't need anything.  There are soooooo many places I could go! And there would be so much freedom! And...quiet. Ahhh, yes! Quiet.

But I've never been a quitter. One of my favorite songs has always been Simon and Garfunkel's, "The Boxer." There's a line in it that says, "In the clearing stands a boxer, and a fighter by his trade. And he carries a reminder of every club that laid him down or cut him till he cried out, in his anger and his shame, 'I am leaving, I am leaving,' but the fighter still remains." I had wanted that to be my yearbook quote when I was a senior in high school, because that was, and is me. Even despite it all, and despite any complaining, I always stick it out, push through it, and fight for what I believe is right. Unfortunately, that quote that was so near and dear to me was too long to fit in the eensy weensy space below my photograph in the yearbook, so I couldn't use it.  I ended up choosing another line from a different song, by the way...this time by the Beatles. "Here comes the sun."

Life has never been easy for me. I grew up in a broken home, emotionally abused, physically abused, neglected. I overcame obstacles that were insurmountable. I went to college, graduated with honors; then went on to graduate school and got my Masters...with a 3.9 GPA. I made something of myself. I followed all the rules. I did everything I was supposed to. And I never, ever quit. I always took a difficult situation as a challenge...and overcame it. But I never, no never quit. So I will not quit now. But damn, it sure sounds easier!  And where did all this goody-two-shoeing get me in the end? I've got this horrible illness that nobody understands, some people don't believe, and it is debilitating. I can't work. I can't use my degree that I worked so hard for (and am still paying on). I don't get to enjoy the career I longed for and loved. I don't get to really and truly live life and enjoy it. I feel like I've been robbed of the life and future I worked so hard to earn. And I feel like my children are being robbed of the mother they deserve.

Maybe instead of being a rule-follower, from now on I should be a rule-breaker? Hmmm....thinking...thinking...

Wondering if I really could rebel,
Marathon Momma

P.S. Just in case I do end up a "missing person," please don't tell 'em where I am! ;)
P.P.S. It is also true that I wouldn't make it very far in my travels with this crappy body that I have now.

Lovin' Me Some ER time!

Today hasn't been the best of days. It started out alright...except for that it was a Friday (I'm currently working on a post about Friday's...look for it soon!). 

After I got all the kids out the door and drove Chub-Chub to school, I needed to make a couple of stops. Simple things...like running into the post office to get stamps (which I wouldn't have done with the boys in tow--or god for bid--all three kids)...and grabbing a gift for somebody. So I took care of those errands, and realized that I was hungry. My energy was already severely depleted, so I decided to drive through the Bruegger's nearby and grab a bagel sandwich, rather than attempt to walk in there on foot. 

After they handed me my order, I pulled over into the parking lot next to Walmart to enjoy the lovely flavors of my tarragon chicken salad sandwich. While I was sitting there in my car eating, I noticed that I was getting really dizzy and just felt awful. 

I have been getting dizziness a bit frequently lately. Over the past several weeks, I have had to sit back down several times when I've been trying to stand up. It's been something I've been concerned about because my doctor is monitoring my blood pressure right now (I have been prehypertensive). And last night, while I was laying down to go to bed, I got really dizzy and decided to take my blood pressure. It ended up being pretty high, so I was planning on calling my doctor today about it anyway.

Ok...getting back to this morning...so given my overwhelming fatigue, pain, and blood pressure for the week, I did not have much on my agenda that I needed to accomplish today. I wanted to get back to the house and rest. But the errands that I ran this morning had to be done today. They just couldn't wait. 

So there I was, sitting in my car...getting dizzy, and feeling worse and worse by the second. I decided that I should find a place to take my blood pressure. Walmart used to have a cuff right near the pharmacy, so despite the fatigue, I climbed down out of my ginormous vehicle and walked in there.  I looked around the pharmacy, but couldn't find the blood-pressure cuff. Realizing how terribly I felt from walking around, I decided that it would be best to get some help so that I could hopefully get my blood pressure taken immediately. I had to wait in line to ask someone in the pharmacy about it, and by the time it was my turn, I felt like I was going to pass out. Unfortunately, the pharmacist said there wasn't a blood pressure monitor anymore.

I walked back out to my car and called my doctor's office. Since it is nearby, I was hoping that maybe they would tell me to come right over and just take my blood pressure. But, given the symptoms that I had, they told me to go right to urgent care if I believed I could make it there...or call 911 and have the ambulance meet me in the parking lot. 

I drove right over to urgent care, which was only a three minute ride or so. And they got me right in and started taking care of me. They took my blood pressure, which was higher than normal, but not as high as it was last night. They did a blood sugar test, which came out normal.

And then they did an EKG. They noticed that my EKG had a change in it from my last EKG only a month or two ago.

After getting those results, they decided that it would be best if I headed to the ER. But of course, being dizzy, they wouldn't let me drive. I was lucky enough to find someone to drive me, andPrince  Charming was able to go home and take care of the kids. 

Tonight is a big night for our Little Miss, who is performing in her school's talent show. She is doing a solo act of headstands and dancing to Taylor Swift's Shake It Off. I am terribly sad that I'm missing it. :(

Anyway, I got to the ER sometime around 1 PM this afternoon. I'm going to be here all night, as I have only seen the nurse so far and the doctor will want to run tests. So here I lay on the stretcher, in the middle of the hospital ER hallway, six hours after arriving. With no end in sight. 

It's a good thing I can make friends anywhere!

Hoping your night is going better than mine,

Marathon Momma

The Sound of Silence

A rough several months have gone by without a post from me. I think I should probably explain why I don't write very often. You see, I have always hated complaining. For me, it's kind of like that saying, "If you don't have something nice to say, then don't say anything at all." While I do know that saying is not intended for this purpose, it still feels appropriate to me. When I'm having a flareup or things are really difficult and there are many challenging things happening, I don't want to keep writing about the negatives and how difficult things are.  So I usually try to write posts that are upbeat or uplifting in someway. Even if it was a difficult time, I try to find the positive in the situation or else I will try to write about something that I think is humorous. So when you don't hear from me for a while, it usually means that I'm not doing too well, and I'm having a difficult time finding something positive to write about.

The truth is, though, the last couple of months have been extremely difficult. Things of been crazy with Miracle Man, Little Miss, Chub Chub, and myself.

Miracle man is doing well in school in a lot of ways. He has made huge gains in several areas, especially with his speech. But we are still struggling with a lot of things as well. The good news is we are finally getting a chance to go to the Epilepsy Monitoring Unit at the local hospital. This is something that we have wanted to do for at least a year, and now we finally get to go.

The major catalyst for this opportunity is that Miracle Man had an episode while he was at school recently. He was sitting down at the table and the teacher's assistant was talking to him, but he wasn't responding. When she looked at him, his eyes were rolling into the back of his head. Next thing she knew, he had fallen off his chair and bumped his chin. This was the first type of seizure that we have seen where he didn't hit his head hard before having one. So, on the one hand, it's scarier and more frustrating that he had one without bumping his head first. But on the other hand, now we get to finally go to the Epilepsy Monitoring Unit and hopefully get at least one diagnosis. He is 3 and a half years old and he still does not have any diagnosis other than developmental delay, even though every one of his doctors believes he has several things going on. Having at least one diagnosis would be great!

We will be doing this in a few months. I do not have the appointment scheduled yet. I have to wait for them to call me. But, when we do get to go, this is how it works: I will take Miracle Man to the hospital and he and I will camp out there in the room. The entire time we are there, he will be hooked up to electrodes to run a long-term EEG. We will stay there for up to as long as a week. Hopefully we will get some concrete data to prove that he is having seizures during that week.

I am really glad that this whole experience will be in a month or two, and not right now. For those of you who don't know me well, or don't follow me on Facebook, my daughter was just in the hospital for a week. She had a pretty severe kidney infection. We are extremely grateful that she has healed well and is doing much better. She has to go to the urologist next week to have some testing done, and we are hoping that everything comes back normal.

In any case, it was a terribly difficult time on our family while she was in the hospital. It will be much easier the next time I am at the hospital with one of our children for a lengthy time because this time it will be planned. We will know far in advance that I will not be around at home to help out with all of the other kids and pets!

All of the stress and extra work over the past several months has really taken a toll on me. My body is barely making it through each day. I am extremely fatigued at this point. In fact, This week I have been struggling with getting out of bed pretty much at all. One morning, Prince Charming had to get everybody out the door without any of my help.  I simply couldn't get out of bed.

And my pain level has been high as well. Everything hurts. My legs, my ankles, my feet, my hips, my back, my arms, my shoulders, my hands, everything.

When I was in graduate school, I had developed carpal tunnel syndrome. I had to wear braces on my wrists for quite some time. But once I was out of school, everything resolved on it's own. I wasn't typing like a fiend anymore, so my wriss and forearms were able to relax. I haven't had this in a very long time. It's been about 15 years, actually. But, now it seems to be back with a vengeance. My wrists and forearms are so bad right now, I'm having trouble holding anything even as heavy as my phone. I am also having trouble writing, twisting knobs, grabbing at things, and of course typing. This entire post has been dictated so that I wouldn't have to type. Buckling car seats are a particular challenge for me. I try to not have to go anywhere if it means I will have to buckle the boys into their car seats. It is really annoying, quite frankly.

So there's a little snippet of the difficulties, but I do have another positive! Over the last few weeks, I have found a whole community of people out there online who are suffering through fibromyalgia, just like me. I am making friends and connections through Facebook and other social media outlets. This has been extremely helpful to me. Knowing that I am not alone is just  huge. And reading my very own thoughts in other people's Facebook posts has been affirming. I cannot believe I didn't search for these forums before. But, I am extremely grateful that I have them now! And, by opening up to people, I have learned that there are people that I actually know who have this illness as well. I am looking forward to learning a lot from people who have been going through it longer than I have.

That's all for today. No more energy, no more time. I hope you're all having a good week! 😉