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!
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!
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.
It is the middle of the day and I FINALLY just made my way out of bed. I am still not feeling well after my journey and am still extremely depleted. My head is spinning, my stomach hurts, and my hand and feet are extremely swollen. Needless to say, another fun day in Gastroparesis paradise. Had it not been for my dog wanting some lunch, I would probably still be in bed.
These days are hard. The days when your mind is mostly with you but your body is stuck in park. You often feel as though you have a devil and angel on your shoulder telling you two different things. It is a constant battle going on in your head and a difficult one to manage.
The devil tells you that you are too sick to do anything. You need to lay in bed. You can’t continue to make it in the “normal” world. Your going to have to stay home and watch the bills stack up while you don’t get paid. This leads to a viscous cycle which leaves you in bed all day in a combination of a lot of pain and hiding from the world. It’s when this side wins that Gastroparesis gets REALLY ugly.
However, there is another voice in your head which is telling you that you can do it. That you just need to rest for 30 minutes more and then you feel at least well enough to accomplish just one item today. If you accomplish one item, then you are a success and will continue to succeed. This side of your brain is screaming to be heard because it knows the truth of what you can accomplish. (I personally play the loop from Stuart Smalley from Saturday Night Live: You are good enough, smart enough, and dog gone it, people like you. Cheesy but effective.)
Teaching yourself to hear the positive side of your brain is one of the hardest pieces of Gastroparesis to manage. This is something that is taught and takes a tremendous amount of willpower to accomplish. If you are able bodied and reading this, you might think it’s no big deal. However, think of the time when you had the flu and were too sick to get out of bed. Now couple that with a time that someone was just down right nasty to you and made you doubt yourself. Combine all of this with the fact that you know these times will always follow you. They will never go away. The best you can hope for is that they are limited and happen fewer. This is what someone with Gastroparesis fights with to get out of bed and get back on a normal daily routine.
It is a hard battle and one that I am determined to win today.
A special thanks to my amazing dog for helping get me out of bed today and doting on me non-stop this morning. (More on pet therapy in future blogs.)