Okay, this is what should have been outside of my front door this morning. It was, instead, covered with cobwebs in the back of my brain. I have ever so slowly started coming out of a bad Gastroparesis flair up last week. Nausea, vomiting, etc, etc, elves, etc etc, all the usual fun stuff. However, my brain has been in go go go go go go go mode. This is NOT good when your body says (insert record scratch sound effect) nope, not going to happen (insert either the charlie brown, wah wah wah, sound effect or the Price Is Right “ba dum daaaaah” you lost sound effect). I think those Gastroparesis elves are having a blast following me around this week playing sound effects!
Well, this morning I decided to go to Kettlebell class at the gym. I went bright and early at 6 AM before my body could say…nope not happening. I thought that I could trick my body into letting me get a work out in. (This is were the Proceed with Caution sign would have been helpful!) Things were going well and then like a shot of lightening things started to fade in and out, spin, and that lovely nausea feeling was back. At least my brain was smart enough to say…put the 18 pound kettlebell down and the really great bonus was that my body listened to my brain without much of a delay. (All the GPers reading this understand how long the delay could have been!) I set the kettlebell down, turned and looked at my trainer and then realized just how dizzy I was. She immediately told me to go lay down with my feet elevated. So for the next 15-20 minutes, my workout looked something like the photo below.
And there you have it! The workout that anyone with Gastroparesis can successfully do! Only someone with Gastroparesis would realize that the act of getting to the gym, doing a 15 minute warmup, and then laying with your feet on a chair is technically a successful workout and should be celebrated. In years past, I would have been mortified by laying like this in front of everyone. Now, I could care less. I embrace it with pride because it falls under the category of “it is what it is”. Yes, I might be extremely frustrated that my body can’t keep up, but I am definitely not embarrassed.
The trainer told me to keep laying there until the nausea passed. I didn’t have the heart to tell her that I could be laying there until next month! My Gastroparesis acting skills also came in handy as I swallowed some vomit, left the gym, got in my car, popped a Zofran, and came home to enjoy the rest of my day off. A day spent celebrating that I made it to the gym because last year at this time I would have never considered it!
This past week I felt like the photo above. I forced myself to keep going and eventually got to the finish line and even had a few folks help pull me across the finish line. However the week was a reminder that I will never be ‘normal’. I will never be able to just wake up and push myself to the limit and have it all be okay. I was reminded that there is only so much I can do in a week otherwise I have to go into hibernation to recharge my batteries.
Granted my Gastroparesis has been cooperating for the most part lately, but fatigue has set in to an extreme. The past week I felt constantly tired and never felt like I was fully awake. However I kept crawling along because that is what people with Gastroparesis do. The world doesn’t stop because you are tired so you put one foot in front of the other and do the best you can to get to the finish line, which in most cases is Friday afternoon. You find away to keep going, you’re not really sure how you do it but somehow you do. Somehow you manage to keep it together and take care of what needs done. Somehow you keep your eyes open. Somehow you make it another week.
This Friday was extra special, my fiance had plans to take me out to dinner for my birthday. However, I was exhausted and just wanted to put on my pjs and sleep. We decided to call an audible and go to a location closer to home. I somehow miraculously gained some spoons and we had a really nice night. I slept well into Saturday morning and was recharged enough to have some friends over for a bonfire. It was nice to see some dear friends that I haven’t seen in a few months. Today on the other hand, I have been lounging around watching tv and potentially reading a book. My batteries are slowly recharging to prepare for another week.
Gastroparesis might take its toll and make you crawl across the finish line, but there are always people around to pick you up. You just have to find the right people to surround yourself with because spending time with those people will give you more spoons than you can imagine.
The past few days have been a bit frustrating. It is feeling like my Gastroparesis is flairing back up again. I’m not sure if it is the weather, the fact that I have strayed somewhat from my eating plan (curse you ice cream!!!), or that I have been trying to stretch out my digestive enzymes/probiatics. In reality it is probably the combination of all of the above.
So the past few days, I could feel my stomach having slight spasms. Today, they were in full effect. They were the spasms that you feel as soon as you put a morsel of food in your mouth. You know that it has barely made it to your stomach and then you feel it start. It’s like there is now a washing machine in your belly complete with the sound effects. You feel it ripple down from the top of your stomach to the bottom and back up again. I swear you can even see it.
As the spasms were happening, I tried to continue to focus on the positive. I tried to focus on the fact that these spasms no longer happen every day. I tried to focus on the fact that I haven’t vomited for months. I tried to focus on the fact that I haven’t had a smoothie in a long time. I tried to focus on anything but the rippling going up and down my belly.
The spasms are now subsiding, but I am viewing them and my extreme fatigue as a huge wake up call. It is a reminder that I have to stay on a strict schedule and a strict wellness plan. It is a reminder that I will never be “normal”. It is a reminder of how bad things really were. It is a reminder that I can never fully run away from that. It is a reminder of a lot of things.
Now I just need to keep reminding myself to focus on the positive and not spiral into the sea of negative that these flair ups can create.
Okay! I’ve had a rather nice break, but now it is time to get back on the blogging wagon. I promise that I will begin to blog again regularly. Over my hiatus, I’ve received numerous messages thanking me for writing about Gastroparesis life. These messages always bring tears to my eyes. When I started this blog, I never dreamed that it would turn into such a strong source of encouragement and inspiration for so many people. My hope was to help a few people some insight into what life is like with Gastroparesis and to provide myself (and others) a forum to vent. I had found myself trying to explain to friends and family what it was like to live this life and always seemed to come up short. I also got tired of telling the same story over and over again, so I thought I would make this little blog so that I could type the story once and they could read it.
Early in my diagnosis, I searched for various Gastroparesis support groups and was fortunate to connect with some amazing people. However, I noticed there was not a lot of information out there about what daily life is like. There is plenty of information out there on symptoms, tests, feeding tubes, pacemakers, etc. But there really wasn’t anything out there about becoming so bloated that you look 6 months pregnant, there really wasn’t anything out there about feeling isolated, there really wasn’t anything out there about trying to keep working, and a whole host of other issues. There also wasn’t anything out there that described the funny parts of these symptoms, the frustrating parts, the things you can do to try to take control of your life and everything in between. So I decided to start this little blog and see what happens.
Well, here we are several months later and the blog is still being viewed at a high rate (even during my hiatus). I’m still receiving messages as to how helpful the blog is. This all reminds me that I need to keep this up. It is important. It is important for others to know that you are not alone in this battle. It is important for others to know that you can begin to feel better (it takes A LOT of work, but it is possible). It is possible to laugh about all of the randomness that we have to go through (brain fog, anyone?!)
So hold on to your heating pads, castor oil packs, and toilets…because Millie is back and has plenty to write about that occurred during the hiatus! 🙂
Thanks for sticking with me & from the bottom of my heart, thank you for believing in this blog and for all of the wonderful messages/comments you have sent me.
The two items above should NEVER occur within the same week! But it happens and it happened this week. My Gastroparesis is NOT happy with it and is proving a point. Stomach cramping, vomiting, fatigue, the whole nine yards of exciting GP fun paid me a visit this week. Needless to say it was not a fun week and I am hoping beyond hope that the weather has chosen a season & temperature to stick with. (I’m hoping for fall because it is my favorite!)
I know of others with Gastroparesis that have exceptional flair ups when the weather changes, so I think that there is something to it. I think that there must be some type of connection. Someone once told me that it has to do with the barometric pressure and how that pressure affects our internal organs. I really have no idea if this is true or not, but it seems as good of answer as any.
As I rotated between the bathroom and laying with my heating pad, I had so many different thoughts going through my head. “Why is this happening to me again, I thought that I was on a good path?” “Why did some of my ‘friends’ disappear and say hurtful things when I got so sick?” “Why do people not understand that this is serious & I’m not just being a whiny wimp?” “Why…Why…Why…Why…?”
Then it dawned on my that asking all of these negative questions was not helping matters. So I wiped my eyes, turned up my heating pad, got doggie kisses from my faithful nurse (aka my doggie Leela) and decided I would focus on the positive. I started to tell myself “You haven’t had a flair up this bad in months, the changes you have made in your life are working.” “Look at all of the amazing friends who have stuck by you & check on you.” “Look at the amazing man in your life who would do anything to help you.” “Look at the positivity that you are giving the GP community with a blog that you didn’t think anyone would read.” “Look at the Personal Best in a Half Marathon earlier this year.” “Look at the fact that you were able to even complete a half marathon.” “Look at the fact that you did two half marathons.” Then I started to turn around. I started to feel better and more mentally tough. I started to get my fight back. I started to say…take that GP…I WILL get off the couch today and I WILL get something done.
As I have said numerous times on this blog, I feel the most important thing during a Gastroparesis flair is to set a goal (no matter how small) and to accomplish it. Then say…Take that Gastroparesis! You may have won the battler, but you will NOT win the war!! So I set a goal of loading the dishwasher (there were all of 5 dishes in the sink) and I did it. This of course required a nap, but I went to sleep knowing that I did something and the day wasn’t an entire waste!
No matter how good we are doing, Gastroparesis always seems a way to find us. However, it is so important to focus on anything positive and try hard not to fall into a negative loop! Of course, this is easier said than done, but it is important to train your brain to make the shift. It doesn’t come natural and will take some training, but I promise if you work at it that you can retrain your brain!
It’s Labor Day Weekend here in The States which means lots of picnics and potential challenges with foods, energy, sitting in the heat, and countless other potential triggers to a Gastroparesis Flair. For me, it means going home to the local fair to watch a demolition derby, eating french fries made by the local fire department, and seeing great friends. It is an annual homecoming & one that I hate missing.
This year at the fair, I was eating my french fries and reflecting on how far I have come in the past year. Before, discussing this I have to say that I planned to have the french fries even if it meant being sick. These aren’t any french fries. They come once a year and taste amazing. They don’t have anything on them and are just plain potatoes that are fried, but there is something delicious about them.
Okay, back to how far I have come in the past year. As I was watching the demolition derby (a contest where people smash old cars into each other until only one is left running), I couldn’t help but think about how it is a metaphor for Gastroparesis life. We get hit from all sides. We get smashed up. We get written off but yet somehow we keep going. We keep fighting back. We keep trying to get out of the mud. We keep trying not to get stuck. We keep trying to start our engine. We keep driving even with a flat tire. We keep driving even if our wheels turn one direction. We don’t quit!
The crowd cheers every time there is a large crash, something catches fire, or mud flies. But the one thing I noticed is that some of the largest cheers came from when I car looked like it was down for the count would some how pull a miracle, get the engine going again, and fly across the track. This is what happens with GP. We look stuck, we look down for the count, but somehow we get our engine going and fly across the track. Our true friends cheer so loud when this happens. They have watched us stuck in the mud with our engine dying but they cross their fingers and hope we can overcome it. When we do, they celebrate with us!!
There will always be people that cheer when we crash but we need to focus on the louder cheers that happen when we get going again. These are our true friends and the friends that we need to make sure to thank for their support and wave to when we win the demolition derby of life!
Okay, I’ll admit that the title of this post is extremely long but it just seemed like the right thing to title it!
I have some VERY exciting non-gastroparesis news that I have to share. I got engaged!! WOOHOO!! Finding that special someone and getting engaged is a special moment for anyone. However, I would say that it is even more special for someone with a chronic illness. When you have a chronic illness, that special someone is signing up for A LOT more than most people. They are signing up for frequent doctors’ visits, frequent medical tests, crazy diets, taking over all of the chores because your illness flairs up. Our significant others are AMAZING to stay with us throughout all of this. They know what they are signing up for and rise to the occasion and say that it will be okay.
My fiance (yes, it is going to take awhile to get used to saying that, but I like it!) and I have been together for about two years. Within the first two months of dating is when I became extremely ill. (Actually, extremely is an understatement.) Within these first two months, he took me for a colonoscopy. A few months later, he took me for an endoscopy. A month or so later he was checking in on me while I spent a half day at the hospital getting x-rayed after eating radioactive eggs. He took me for countless IVs. He carried me to bed. He carried me to the bathroom. He walked my dog. He cleaned my apartment. He did my dishes. He did my “grocery shopping” which basically consisted of ginger ale. He never mentioned how bad I smelled because I didn’t have the energy to bathe. He calmly repeated himself while I was in brain fog and couldn’t retain any information. He did all of this while maintaining his own residence and never once complained.
He has tried countless diet modifications in support of me. He has cheered me on at the finish line of 5Ks and half marathons that I shouldn’t be able to run due to Gastroparesis. He is my rock and has been calm and supportive as I have struggled with my health. He never tells me what to do, but listens to me work through the decisions. He encourages me to keep living life and to not give up.
I can honestly say that every day I think of how lucky I am to have him because I have no idea how I would have navigated this path without him.
Now I can celebrate that I will have my rock with me for the rest of my life. Oh…and a rather nice rock on my finger as well!