Star Trek Exhibit Highlights at Indianapolis Children’s Museum

Over the weekend my husband and I visited Indianapolis to see the Star Trek exhibit at the Indianapolis Children’s Museum. My husband was in heaven lol. I was there. I did find a few fun things to concentrate on though.

I annoyed my husband by sitting in the captain’s chair like this:

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My personal favorite in the exhibit was this painting of Data’s cat from The Next Generation, I would hang this in my house:

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My husband got assimilated and beamed up (along with a little friend):

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I did get to ride the museum’s carousel (one of my favorite things to do at any museum, zoo, or park). Unfortunately, I threw my hip out climbing onto it. I think from now on I may need to sit on the little benches on the carousel like all the other old, broken down bodies:

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I also got a photo op at Candyland:

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Now I am back home, exhausted, sore, and will probably need a few days to recuperate.

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CFS/ME Flare Up and Park Outing

It’s been a rough week physically. I had a CFS/ME flare-up, which feels a lot like mono if you’ve ever had that, or the worse flu you can imagine. During these flare-ups, I run a fever, my body aches horribly, I feel too exhausted to move, too exhausted to breathe, and if I sit up or stand up long, I feel faint. Trying to do the simplest tasks is overwhelming and can make me feel like passing out, even just putting up my dishes or trying to take care of my personal hygiene.

Yesterday I was finally feeling well enough to get out and since the weather was warm, my husband and I went for a picnic at a local park. We got subs and then after eating, walked the short distance to the lake edge. As you can see, it was pretty darn muddy:

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I’m glad we went, because I needed the mental distraction, but now I am really sore and exhausted from even that short bit of activity. Trudging through the mud really wore me out because the mud sticking to my shoes made my feet feel like they gained 10 pounds, and I almost slipped and fell a couple times. It probably wasn’t the brightest idea to go, but mentally I needed to feel alive again, even if just for a little while.

Bad Flare Up After Car Broke Down

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Feeling like shit today. Woke up after sleeping 10-11 hours, ate breakfast, and then went to take a nap for another couple of hours. So, why am I so exhausted and feeling like I got run over by a steamroller?

Well, yesterday my husband was driving home from work when a tire fell off his car. I had to go pick him up and once I got there, we had to wait for the tow truck to come get the broken down car. It was supposed to be about an hour before the tow truck arrived, instead it was almost three hours. Three hours of sitting in the cold (we did turn on the heat in my car occasionally, but didn’t want to run it the entire time we were waiting). Three hours of sitting in a position that is not good for my back, neck, and joints. Three hours of my joints stiffening due to the cold and being cramped in the car.

I knew today I would feel rough after all that and expected my CFS/ME and Ehlers Danlos to flare up. As usual, I was correct, but I wish I wasn’t. Those who don’t have chronic illness and chronic pain have no idea how easy it is for normal, annoying life events to set us back for days. I think it is something you have to experience to truly understand.

Poetry: Waiting for the Doctor

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Waiting for the Doctor
By: Maranda Russell

Perch on the edge
kick the drawers down below
lay back
wish I had a pillow
turn to the side
curl up in a ball
poke a hole
through the thick
tissue paper cover
read the poster
about acid reflux
for the 15th time
flip onto back again
count the ceiling tiles
12 in all
play with the blood pressure
thingy on the wall
stand up
run the water in the sink
look through the cabinets
hear doorknob start to turn
hop back onto examination table
try to look innocent.

Thanksgiving Mini Vacation

I hope you all had a lovely Thanksgiving if you happen to celebrate it. I had a really good day. My husband and I went over to Indiana to have dinner with my mom and her husband. We decided to go over there a day early to break up the drive, and to go to Marion, Indiana to see their holiday Walkway of Lights. It was cold, but we still got out and walked around the park a little bit to enjoy the lights and gardens:

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I threw in a penny and made a wish on the fountain pictured above. I certainly hope it comes true!

I had a lot of fun and am glad I went, but now I am EXHAUSTED.

Vacations: A Harsh Reality of Chronic Illness

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Over the weekend my husband and I took a short vacation to Louisville, KY to celebrate our 15th anniversary and spend some quality time together. I did have a good time, but I must admit that I dread and sometimes even regret vacations just as much as I look forward to them.

Why? Simple. Chronic Fatigue Syndrome. Vacationing when you have CFS sucks. Big time. Planning the vacation wears you out. Packing wears you out. The travel wears you out. Even though I don’t do the driving, I am still exhausted by the time we even get to our destination. Often, as soon as we get to our hotel I immediately have to lay down for at least a couple hours to recuperate, even if it is only a 2 or 3 hour drive as this one was.

The main excursion we planned was to the Louisville zoo. We had never been there before and both my husband and I love animals. Luckily, it wasn’t a huge zoo, but by the time we had toured about half of it, I was in really poor shape. I had to sit on each bench we came by and rest. I even had to make do with the floor a few times and just collapsed. I was nauseated, felt like passing out, developed a migraine-like headache, and felt extremely overheated, even though it wasn’t that hot out and I stayed hydrated. Heck, most of the buildings were even air conditioned. THIS is what living with CFS is like.

I didn’t get to see much of the rest of the zoo. I was too busy looking for places to rest and recuperate for the trek back to the car. My legs ached so badly and felt so weak that I feared they would give out on me multiple times. My entire body felt like I had been run over or slammed into by something big and heavy. Somehow I did make it back to the car (after resting many, many times on the way there), and then we went directly to our hotel so I could recuperate for the rest of the day. I didn’t even have the stamina to go out for dinner a few hours later, so we ate at the hotel.

I went to bed early, hoping I would feel better in the morning, which didn’t really happen. The next day we visited a cool indie bookstore I had wanted to go to, but I was almost too tired to even enjoy that. We went and found a place by the Ohio River to sit and watch barges pass by, which was peaceful and relaxing. During the drive times to our locations, I curled up with a pillow and laid my seat back to doze.

By the time we headed back for home, I was too exhausted to care about much of anything. When we arrived home, I went almost straight to bed, even though it was only 5pm. The next day (Labor Day), my hip and back were so sore (with a pinched nerve thrown in), that I spent most of the day laying in bed watching a Lake Placid marathon on the Syfy Channel. Any form of movement was excruciating.

All of this makes me wonder if vacations are really worth the trouble. It also makes me wonder if maybe sometime soon I will need to get a motorized chair to even survive simple outings like this. I hate to give in and do that, but my worsening symptoms make it an almost certain possibility eventually.

Support Group and Social Exhaustion

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Today hasn’t been the best day mental-health wise. I just woke up around an hour ago and it took me until now to drag myself out of bed because I honestly just didn’t want to move, let alone get up and face the day.

Yesterday wasn’t a good day either. I’m not sure what was going on, but I felt sick and exhausted the whole day. I did make myself go to a group meeting yesterday (a recovery from religion support group). My husband is helping to lead the group and it is fascinating to hear everyone’s personal stories about religion and how specific forms of indoctrination affected each of them differently. Some of those who come truly have experienced abuse at the hands of religious leaders and organizations, much like I have in my past (mostly due to my messed up family).

The meeting lasted almost three hours, which socially exhausted me. Maybe some of you don’t experience social exhaustion, but when you are autistic, being social takes so much focus and attention to do it “right”, that it always leaves me burned out and just wanting to go home and nap. Add to that, the social anxiety I had about going to the group in the first place, and I guess it is no wonder that I felt like crap both physically and mentally most of the day.

I think today I’m just going to try to take it easy and recover from the exhaustion as much as I can. I need to have my precious time alone and indulge in some distractions to take my mind off real life. I definitely welcome hearing from you guys though!

Physical Therapy and CFS

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Having CFS/ME really sucks sometimes. On Tuesday I went to my traction physical therapy appointment for my bulging disc in my neck and they asked me to do a few minutes of really easy, simple exercises that should have been a breeze. Instead, here I am, 35 years old, looking fairly healthy and fit, and yet, I had to constantly take breaks from even these few little stretching and postural exercises. It makes me feel like I’m really living in an 80-year-old body.

It is embarrassing as well, because I fear the judgment of those who see how little I am actually able to do. I worry they will just judge me as lazy or think I am just being difficult, which is entirely the opposite of my personality. I’m the kind of person who goes out of their way NOT to cause trouble or slow things down. I often wish other people really understood how crippling chronic fatigue syndrome can be. For instance, all my adult life I ALWAYS took a shower every single day and washed my hair. Now, I’m lucky if I can find the energy to wash my hair every other day, even though my OCD traits are going crazy at the change in my lifelong routine. Even typing these blog posts requires frequent breaks.

Sorry if this post seems a bit whiny, it just sometimes hits home over little simple things, how much my life is affected by my new physical limitations, and it is hard to accept.

* Art by Maranda Russell