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!
No matter how much you think you have Gastroparesis beat, you never fully do. There will always be a setback that hits you. For me, it always seems to be when there is a large shift in the weather. It is so incredibly frustrating to be on a good path and then something completely out of your control throws a wrench into the whole scheme. It’s in these moments that I hate Gastroparesis the most. It’s in these moments that I struggle to stay positive and keep fighting. It’s in these moments that I have a hard time fending off the depression and self-doubt. Today has been one of those moments.
The weather had a giant shift yesterday which wreaked havoc on me and my Gastroparesis. I have been fatigued and this morning had extremely horrible stomach cramping. I stand by my acupuncture post from yesterday, because even though I faced this setback I noticed that my body is bouncing back faster than it did before the acupuncture treatments. It still doesn’t bounce back as quickly as I would like, but something is better than nothing.
This morning was not only filled with fatigue and severe stomach cramps but was also filled with self-doubt and depression. What is my point in life? Why was I changing my diet, taking supplements, blending my food, getting acupuncture just to remain sick? Why do I always have to get sick? Why don’t more people know about Gastroparesis? Why keep fighting it? Is the blog really helping anyone? Should I keep doing the blog? The list goes on and on and on. These moments are EXTREMELY difficult to pull yourself out of. Once the snowball starts rolling it takes a giant yeti to make it stop.
Somehow, someway I was able to get the snowball to stop. Maybe it’s because I had to force myself out of bed to get some work done.. Maybe it’s because my dog was insistent that I needed all the kisses she could give me. Maybe it’s because I saw an adorable photo of my friend’s baby in a safari hat. Maybe it’s because my amazingly calm and supportive boyfriend was saying all of the right things. Maybe it’s because I know I’m meant to make a difference for the Gastroparesis community. Whatever the reason was, I was able to slowly snap myself out of the funk today. I’m not fully out of it but still slowly getting there. I saw the image for today’s blog & I think it will be my new motto: Chin up buttercup!
Ever since I found the image, I’ve been telling myself this over and over. It seems to be working. I’ve thought of additional ideas that I can do to expand the blog to more than just my daily posting about life with Gastroparesis. I’ve thought of some possible ways to arm others with copies of the Advocacy Binder.
I’m excited about the future and hoping that you will be too. I’m hoping that you will like the changes coming soon to Adventures with Gastroparesis!
Never give up & keep your chin up! We will find a way to make our voices heard, just you wait & see!
Let me start out by saying that the photo above is false advertising. No one looks that good in a spin class. Sweat is dripping everywhere. It smells. People are grunting. If there is a pause in the music you hear people sucking wind. People’s bangs are sticking straight in the air because the people can’t handle having them on their forehead anymore and there is enough sweat to spike them straight into the air. Oh wait….that’s just me and I don’t care! I have Gastroparesis and am just happy to be there.
Okay, I’ll fess up. Several people are looking like a hot mess in spin class, but only I have the spiked bangs. I think that I might bring back the 80s headband. As I mentioned, I’m just happy to be there. Today I had A LOT of frustration to get out of my system. Frustration over how so many people are fighting Gastroparesis and in constant pain. Frustration over the lack of treatment options for Gastroparesis. Frustration over the lack of knowledge of Gastroparesis. Extreme frustration about how we receive this diagnosis and then basically told to “live with it” with no end in sight.
All of this was going through my head and the more frustrated I got, the faster I went. I was wishing that if I could pedal fast enough that a cure would magically appear for all of us. It is still absolutely mind boggling how in this day in age we are just left to the wayside to fend for ourselves and frequently treated by the medical profession as if we are a bother.
I know that there are A LOT of GPers struggling right now. My heart breaks when I read some of the posts about how debilitating Gastroparesis can be. About how the medical bills pile up. About how our lives have been ripped away from us and we have to sort out a Plan B. I wish that I could give everyone a big hug. I wish that I could pedal us a cure.
However I do know this. My Gastroparesis is mild compared to most (which in and of itself is mind boggling, because I know how bad I get.) This means I have more energy available to fight for us. A fight that I take extremely seriously. I promise all of the GPers having a bad day that I have so much fight in me that I am on a mission to make Gastroparesis a household name so that one day we can have better lives. Do NOT give up hope (I know this is MUCH easier said than done on some days). We are a strong group of people and we are determined to have our voices heard and make a change!
This entry is dedicated to Kristi Jewel. You are stronger than you know! 🙂
Today I have one simple question, “Where did the energy go?” I would really like to know. Although I did need quite a few naps throughout my chores this weekend. However, I feel like someone pulled the plug or hid the batteries. I can barely open my eyes.
I’ve written about this topic a handful of times, but it is one that continues to haunt me. I’ll be on fire getting things done for a couple of hours and then have to take a recovery nap for 3-4 hours. It absolutely amazes/dumbfounds/confuses me. I feel that my body is still in recovery mood from becoming ill on Thursday night. I’ve also been battling stomach cramping this morning which has not been fun. I wonder if our bodies put us in hibernation mode so that we don’t feel the pain.
This weekend I took my prescription strength Vitamin D pill. I’m only supposed to take 1 per week so I can only imagine how much Vitamin D is jammed into that little pill. However, I think that it is having the opposite effect of what it is supposed to. Vitamin D is supposed to help with your energy and brain function, but both of mine have tanked.
I feel like a slug. This feeling is the part of Gastroparesis that I have the hardest time with. I can accept the pain, nausea, vomiting, etc. However, I can’t stand the feeling of knowing that things need to be done and I am rendered useless on my couch. My brain doesn’t want to cooperate enough to even watch some TV shows. As a result, I have been laying there falling in and out of sleep listening to a bird in the back yard sing and my dog snore. Both very pleasant sounds, but not as pleasant as actually getting work done, making my smoothie, reading a book, putting a glass in a dishwasher, or really doing anything at all.
I couldn’t stand laying there anymore so I did what I always do to try to break the spell. I set myself a goal to accomplish just 1 thing and then hope that the 1 thing will lead to more. If not, it will at least wear me out enough to go back to sleep and not think about being unproductive. So I decided to hobble over to my computer and type today’s blog.
Hopefully, it is turning out coherent because I think I see the GP Elves fluffing my pillow for me. Maybe they can drive me to my acupuncture appointment in hopes of it knocking this bad energy and cramping out of me!
Okay, I’ll be the first to admit that there at times I want to scream when I see the quote above. (You were given this life because you are strong enough to live it.) Some days I just don’t want to hear it. It’s the last thing I need. I’m sure that almost anyone with Gastroparesis has felt the same way. You wonder just how strong you are expected to be and just how much more life is going to throw at you. You want to rip this paper from the pushpin, ball it up, and throw it in the garbage (maybe even set the paper on fire).
However, I will say that my fellow Gastroparesis fighters are some of the strongest people I have ever met in my life. It seems that once we get over the initial mental hurdle of being dealt this incurable condition, that we develop a mental toughness like no other. Sure we have our days of Brain Fog. We have our days when depression takes over. We have our days of self doubt. But what I am noticing is that once you start to gain control of your brain and are able to push the negative thoughts out. It is downright amazing how tough GPers really are. This toughness is why the little post-it is correct. We are strong enough to live this life.
We are resourceful enough to start Facebook groups, blogs, and forums in order to educate ourselves and to educate others. We know the limited amount of research occurring for Gastroparesis so we use ourselves as human guinea pigs in an attempt to feel better even for an hour. We will try anything. I think I would even try eating a mouse if someone told me it would make me feel better. Those of you who are healthy and reading this are probably completely disgusted by that thought. Those of you with Gastroparesis understand that I am only half joking and are contemplating in your head if you have heard anything about this before.
We have the resolve to keep fighting. We have the resolve to fight for legislation that would expand research for Gastroparesis. Legislation that will hopefully keep us from serving our guests mouse BBQ. We are sick and tired of being sick and tired. We are tired of laying in our beds. We are tired of laying on our bathroom floors. We want a change and we want it now!
This is why the statement is correct “You were given this life because you were strong enough to live it”. We are strong enough to make the voice of Gastroparesis heard. We are strong enough to not take this lying down with the GP Elves serving us mouse!
PS…Please do not try to eat mouse as a result of this entry. Please consult a trained medical professional before making ANY dietary changes.
PS…Please help pass HR842 to expand research funding for Gastroparesis. Call your congressman and vote on-line: https://www.popvox.com/bills/us/113/hr842
Well….I knew this would happen. I just didn’t think it would be so soon into “Gluten-Free” April. It seems that yesterday I hit a bit of a speed bump (or should I say traffic jam) and fell off my bike! Okay, the photo isn’t literally me. Everyone knows it would be coffee and not soda in my hand! However, feel that this photo portrays what a lot of people with Gastroparesis feel. You go about your daily lives and then BAM…down for the count.
Yesterday I was feeling pretty good. I had energy and was feeling optimistic. I was even planning on going to a spin class with a friend. (Hey, if she can go to class 8 months pregnant then I can go with GP!) Then it hit. The sea of brake lights in front of me when trying to get home. Then another sea of breaklights. Then another sea. Then that nauseous feeling. Then that weird feeling in your cheeks when you know that it is only a matter of time before you vomit. Then the starting to plot where you can pull over to do so and if your body can hang on until you get there.
Needless to say that after my 1 1/2 hr + of driving and vomiting, I was not going to make it to spin class. I did not get to check exercise off on my list. I also did not have enough energy to prepare everything in the evening for work today. (Although I could tell my body wasn’t going to let me go to work anyway.) So I didn’t get to check evening prep off my list of things to do. Since I was so ill, I wasn’t feeling like eating so I managed to stay gluten-free and check it off of my list as well as going to bed before 10 pm.
Even though I faced this setback, it was minor compared to the setbacks in the past. I am starting to feel better today and think that I will be back on my bike by tomorrow morning. I also had a nice chat with my GP BFF. Our schedules haven’t been matching up well since we live on opposite coasts, but it was great to finally catch up with each other. It reminded me that I need to add another item to my goal chart: remember to check on my close GP friends. We all need support and we all like knowing that we aren’t forgotten in the world.
So today, I will start picking myself back up from my fall. I will start to chart my new course in life in an attempt to become as healthy as I can so that I can go tell Gastroparesis to take a hike! (And not the fun kind of hike, the annoying all uphill in 100% of sweltering heat type of hike!)
Today was the start of “Gluten-Free April” and it was a success! Over the weekend I printed out several recipes (which I promise to share the good ones!) and placed them in a binder. I find that I am much more motivated when something is tangible and recipes saved on my computer is just not going to cut it for me. I then sectioned off the binder and place the “Meals for the Week” in the front of the binder. This will make it simple to make a grocery list each week and to stay on target.
However, I decided to add more to “Gluten-Free April”. It seemed appropriate to make April Fool’s Day the first day of looking at today forward. Gastroparesis sometimes feels like a cruel April Fool’s joke so I thought that I should beat it at its own game. In addition to going Gluten-Free I have also resolved to: exercise (at least mildly) for 30 minutes 4 days per week, limit my coffee intake to no more than 10 cups per week, prepare everything for the work day the night before (lunch, iron clothes, etc), and go to bed by 10 pm. These are all realistic and achievable goals. Some will be harder than others but I really think that I can do this.
I strongly feel that by setting these goals that it will help me stay in a positive state of mind about having Gastroparesis. It is EXTREMELY difficult to goal set with Gastroparesis because you never know when you are going to go down for the count. You never know when a flair will hit. However, I have decided to reclaim my life and stop living it in fear!
Throughout my life I have always been a goal-setter. They were goals that stretched me but were achievable. I would always celebrate when I achieved a goal and it was motivation to keep moving forward. Once I become severely ill and received my Gastroparesis diagnosis, I felt like my life was sitting in park. I didn’t want to set goals because I knew they weren’t realistic due to this outside force called Gastroparesis. I learned years ago that goals should only be contingent on what you can control in your life. If you create goals around things that you can’t control you are only setting yourself up for failure. This is why I quit setting goals when I found out about Gastroparesis.
Over the past weekend, I realized that goals were what was missing from my life. By typing my blog about “Gluten-Free April”, I received such a jolt of excitement and energy that I hadn’t felt in a long time. It stirred up more emotions in me than I thought were going to happen. It made me realize that I could still set goals, they would just be a different type of goal.
I can say that I am 1,000% committed to reclaiming as much as my life as possible. I refuse to let Gastroparesis get the best of me and I refuse to let it have more of my days than I do. I will figure out a system that works and shifts with the target. I am on a mission, so GP better watch out because April is going to be MY month!
Some of you may or may not know who Stuart Smalley is. He was a character played by Al Franken on Saturday Night Live back in the 90s. His catch phrase was “I’m good enough, I’m smart enough, and doggone it, people like me.”
You would be absolutely amazed at how many times I repeat this to myself throughout a day, week, month, or year. When your battling so hard to just maintain, it is hard to keep your hopes and dreams alive. However, you MUST keep them alive. You can never give in to giving up. (At least this is how I feel.) When I go through periods of self doubt where I wonder if I can keep performing at a high level at work, where I wonder if I am making a difference with my advocacy work, where I wonder if I am pulling my weight at home, where I wonder if I spoil my dog enough, I stop…take a deep breath…and repeats the words of Stuart Smalley in my head. As cheesy as it may sound, I repeat them over and over in my head and then set a goal of something to accomplish for the day. I find that once I accomplish that one item, I end up on a roll and get a whole list of things done. It’s just that sometimes, accomplishing that one item is so incredibly difficult. Who would have thought that a cheeseball character from all these years ago would be what kicks my behind in gear?!
Recently, I have also been doing a lot of reading focused around self-reflection. There are some fascinating books on the subject. It is important to note that these books are self-reflection not self-help. Self-reflection books focus on how to become more introspective and more aware of your surroundings. They also deal a lot with emotional intelligence and how to read/interact with others. One of the books “The Essentials of Fabulous” recommends creating an encouraging loop to repeat to yourself. To create a list of positive things that have been said to you and positive thing to reflect on. Then replay this list whenever you are in a period of self doubt or having trouble getting moving. (It’s the 21st century Stuart Smalley!)
So this morning I added to my Stuart Smalley loop various comments I have received at work about my quality of work and my ability to maintain an extremely high standard while fighting with the moving target that is Gastroparesis. I repeat to myself that I have managed to successfully educate my workplace on Gastroparesis and how I have to live/work to balance it (which is an scaling Mount Everest type of fete for most people). I repeat to myself what my family/friends have said about what I continue to accomplish in spite of Gastroparesis. Most importantly, I repeat to myself several of the comments I have received about this blog from my fellow GPers. My little blog is making a difference and helping others. These are all reasons to crawl out of bed and accomplish some things today.
I’m good enough! I’m smart enough! And doggone it, people like me!
Gastroparesis is a tricky disorder. Not only does it affect your stomach, it also has a profound affect on your brain. As mentioned in previous blogs, I believe a reason for this is due to the malnourishment. However, I suspect that there is something larger going on. My hypothesis is that Gastroparesis also affects the chemicals in your brain. I’m not a medical researcher, I haven’t read anything on this subject, but I know how I felt when I had a concussion, I know how I felt prior to Gastroparesis, and I know what I feel like now. The only logical conclusion that I can come to is that in addition to the malnourishment that there is also a chemical affect.
It also seems in talking to others with Gastroparesis that the brain element is much larger than anyone gives credence to or discusses publicly. It is an area that needs more discussion. This morning has been a roller coaster of emotions for me. I swing between highs of feeling extremely motivated, inspired, and unique original ideas for both my day job and advocacy work. Then the pendulum swings into extreme lows. Lows that are rather dark and only others with Gastroparesis totally understand. When you come out of the darkness, you think to yourself “who was that person?”
The worst instances of the pendulum is when it swings from hour to hour and your brain is literally all over the map. It’s like you are riding a roller coaster and the chemicals in your brain are dictated the course of the car. You have a surge of one chemical and you are flying high. You are happy, you are motivated, you come up with some truly amazing unique work. Then in the snap of the finger the chemical is gone and replaced with another one, you are then in a tunnel underground hoping that soon you will pop out on the other side.
I try to keep my entries light-hearted and show how to remain positive through fighting Gastroparesis. However, I feel it is important to also educate about the dark side of Gastroparesis. When it gets dark, it gets REALLY dark. It is EXTREMELY important to remain positive so that when the darkness hits you can listen to that little voice in the back of your mind that is trying to break through and tell you that you can do it. Without that little voice, it would be hard to come out of the darkness.
Now if I could just get off the roller coaster so that I can ride the antique cars with the GP Elves. It seems like it would be a much smoother ride with time to enjoy the scenery.