I went from working to being worn out

What is my daily life like living with gastroparesis? My daily life went from working my tail off 7 days/week to suddenly no energy. No nothing. Just sick. At that pesky little vagus nerve …bradycardia and tachycardia. Also Dysautonomia and Ehlers-Danlos Syndrome. It has meant I went from working (in my 30s) to being worn out just sitting upright on a couch all day. I dread activity. The constant nausea is unbearable but after a couple of years, you accept it as normal as you have forgotten how normal truly feels. Not being able to eat foods I once loved and sometimes nothing at all. Days are full of feeble attempts to try to manage the symptoms. It is hoping I do not have to go to the ER for IV fluids only to be lectured by another ER doc about wasting their time or being treated as though a drug addict looking for a fix. (PS, no matter what horrible level of pain I am in, I always always always turn down pain meds in the Hope’s that I am taken… Read more “I went from working to being worn out”

It’s Hard To Make Plans

What is my daily life like living with gastroparesis? I have anxiety, depression, fatigue, muscle cramps, pain, nausea, diarrhea, & I never know what my day to day will be like , It takes a lot out of me when I shower & do things.. It’s hard to make plans because I never know how I’m going to feel like that day. Gastroparesis sucks, I had a life with my horse that I’ve had ALL my 13Yrs. I’ve had a daughter that I missed out on because I was always going to the Hospital or Dr’s, or just staying home because I would feel awful.… Read more “It’s Hard To Make Plans”

Continuous pain

What is my daily life like living with gastroparesis? I’m in continuous pain all day… Read more “Continuous pain”

Exhausted and dehydrated daily

What is my daily life like living with gastroparesis? Pain every day. Nausea if I eat.. Nausea if I don’t. Exhausted and dehydrated… Read more “Exhausted and dehydrated daily”

Never making plans without a contingency plan

What is my daily life like living with gastroparesis? I spend a majority of my days in bed, eating what I can because I have to, not because I am hungry or desire to. Never making plans without a contingency plan. Pain and nausea dictates my schedule, and an outing has to be scheduled before any nutritional intake with recovery time afterwards. Managing life not knowing what each day will bring until I wake up each day has taught me to be spontaneous and not take for granted my better… Read more “Never making plans without a contingency plan”

Nauseated from a smell

What is my daily life like living with gastroparesis? Never knowing if I’m going to just be nauseated from a smell, just trying to eat (if I even get hungry), whether eating will make me sick, if for no apparent reason that I will get very sick or be in… Read more “Nauseated from a smell”

Tiring and painful

What is my daily life like living with gastroparesis? Tiring, painful and full of multiple every week… Read more “Tiring and painful”

Lots of planning around food

What is my daily life like living with gastroparesis? Lots of planning around food, especially if I’m going out for the day or traveling. I hate getting sick away from home. Cancelling plans at the last minutes due to GP related pain. Avoiding events that are food… Read more “Lots of planning around food”

Malnutrition makes it hard to do anything

What is my daily life like living with gastroparesis? Malnutrition makes it hard to do anything. If I use a little energy today, it takes 3 days to get it back. I’m always tired and feel like I’m wearing a lead… Read more “Malnutrition makes it hard to do anything”

A never ending battle within my own body

What is my daily life like living with gastroparesis? It’s like a never ending battle within my own body! My family worries all the time! Smelling, seeing and even the thought of food makes me nauseous. Every event involves food, even watching television, there’s food! Some days I just end up throwing in the towel, and stay in bed in a fetal position with my heating pad. Just trying to stay hydrated while being nauseous is a challenge. Being so tired, it takes all your strength just to use the restroom and crawl back in bed. So I keep fighting and praying for a… Read more “A never ending battle within my own body”

Severe waves of nausea

What is my daily life like living with gastroparesis? I’m on disability at the age of 36. Couldn’t even get regular SSDI because I never accrued enough work credits. I’m sick everyday to some point & degree. I live with my parents now and my Mom is my caregiver. I live in constant pain to a degree in the belly just from all the surgeries I’ve had due to GP and Crohns. Some days are worse, some days I must wear diapers to keep from going on myself. I eat like a grazer. I munch on a few bites here and there. Even the good days I still mostly graze. I get severe waves of nausea some days and some days I just can’t get anything down. I deal with nausea, bloating, and fatigue every single day. I developed multiple other conditions due to my GP and Crohns and daily life is hard dealing with all of this. I never get hungry anymore because my brain basically forgot that my body needs food to survive. Life with GP is difficult, but some days are much better than others, that’s my daily… Read more “Severe waves of nausea”

Living life with Gastroparesis is a guessing game

What is my daily life like living with gastroparesis? A guessing game, can be vastly different from day to day, week to week. Very difficult to plan anything or work or just to live. Some days it is an effort to just breathe and sometimes I have few symptoms and I am very grateful. My life is a giant roller coaster with Gastroparesis at the… Read more “Living life with Gastroparesis is a guessing game”

Daily life is physically challenging for me

What is my daily life like living with gastroparesis? Daily life is physically challenging for me. Each morning I wake up with lack of energy, unrested from restless sleep IF I had any sleep to start off with, along with nausea & a cramping abdomen from trickling a total of 200mL of pedialyte into my small intestines via my feeding tube all night. In the morning I unhook for an hour before rehooking to my feeding tube for my nutrition. During the entire day I carry around a backpack with my tube feeds to receive up to 500 calories of formula. My body won’t accept more without severe symptoms. I try to force a pedialyte popsicle l or 2 times a day as I remain chronically dehydrated even with the feeding tube. Most of my day consist of being home bound under a heating pad. When I do attempt to go out, it is with my family and usually consist of going to a restaurant and watching them eat, a doctor’s visit, or attending a movie. All of which wear me down and take a day or two to recover from. Making plans in advance is always questionable as don’t… Read more “Daily life is physically challenging for me”

Never take for granted what is before you

What is my daily life like living with gastroparesis? It’s like playing cards. You have an ace in the hand. You feel like you may win today only to find out that ace is a club to knock you down. Nauseating moments, pain sucking the energy out of you, and being hungry and full at the same time is all part of the game. I have moderate gastroparesis and a higher tolerance for illness due to other issues. I know mine is not the worst. I know my issue is not the best. My thought living with disease is this…. Never take for granted what is before you. Something as simple, but important, as eating and not being sick is not a given, it is a blessing. So, I deal with it and hope every day, I can do something to play MY… Read more “Never take for granted what is before you”

Alone about 90% of the time

What is my daily life like living with gastroparesis? I’m now alone about 90% of the time. No one including my family bothers with me because I’m “sick”. I’m nauseous and very bloated the minute I eat. I get very tired because of my meds. No one understands GP no matter how much I explain… Read more “Alone about 90% of the time”

I have to take my day minute by minute

What is my daily life like living with gastroparesis? I have to take my day minute by minute. It begins every morning with being woken up by nausea. Then the vomiting begins. I try my best to get dressed and drive to work (having to pull over multiple times some days). Constant fear of… Read more “I have to take my day minute by minute”

Sick like I have to throw up all day

What is my daily life like living with gastroparesis? I always have nausea, abdominal pain and sick like I have to throw up all day. I force 1/2 a cup of food two or three a day. Very hard to move around because I feel weak. Threw up the other day with diarrhea since then the pain, nausea and sick has gotten worse. I can’t wait to fall asleep, then the throw up sick wakes me up. Only take zofran and that isn’t working anymore. Gave up on doctors, they all have brushed me off. Most of my time is laying down in bed with lots of blankets, I am always cold. I think I might have missed a few but I’m sure you got the idea of a day in my… Read more “Sick like I have to throw up all day”

This disease has weakened me

What is my daily life like living with gastroparesis? Too limited my Life by Tiredness, weakness from Nausea, Vomiting and pain. This disease has weakened me, and damaged other organs. My Daily Symptoms are WEAKNESS, Dizziness, Fatigue, and Gastroparesis Treatments has damaged my Heart. Specifically the Ventricular area, having that damage, the Treatment is suspended. Which is why I am lying down 24/7. This DISEASE is very difficult. Only My SOVEREIGN GOD I have placed my Faith and… Read more “This disease has weakened me”

I miss my old life

What is my daily life like living with gastroparesis? I wake up usually in pain ..Its like being stabbed in my stomach ..I’m always weak from Malnutrition issues..I drink my breakfast which is a nutritious shake..if I don’t vomit I have burps with an after taste. I feel like I ate a bowling ball for hours the pain never goes away these days. My back is messed up because the way I sit leaning forward because sometimes the pain is so bad I can’t sit straight up..by noon I’m vomiting and if I try not to vomit, it comes out with a burp..I sometimes take bites of food and chew it up and spit it out just so I can taste the food, I don’t realize I do it..I am the strongest person I know but sometimes break down and cry because I miss my old life -I miss food and I miss just being able to go places without fear of vomiting ..I go weeks without leaving my house or putting on outside clothes..I don’t feel like I’m living anymore I’m just existing..I’m so isolated and… Read more “I miss my old life”

A basic catch 22

What is my daily life like living with gastroparesis? Pain, nausea, vomiting, diarrhea and or constipation, malnourished, headaches, body hurts, fatigue, muscle cramps, blood sugar bottoms out, hair breaks off and or falls out, kidney failure, UTI’s double vision, anxiety, panic attacks, dizziness. Every day is different..a basic catch 22..you never know what you’ll be dealing with. And for me constant praying that things will get… Read more “A basic catch 22”

Like being locked in a prison

What is my daily life like living with gastroparesis? GP is like being locked in a prison with no… Read more “Like being locked in a prison”

It’s like living on a roller coaster

What is my daily life like living with gastroparesis? It’s like living on a roller coaster with no end in sight. And one that has so many twists and turns you can’t ever get two steps ahead of… Read more “It’s like living on a roller coaster”

Nausea and fatigue are a constant

What is my daily life like living with gastroparesis? Nausea and fatigue are a constant, pain is a surprise every day..never know when or how… Read more “Nausea and fatigue are a constant”

Trying to keep nausea and acid reflux under control

What is my daily life like living with gastroparesis? My daily life is trying to keep nausea and acid reflux under control so I’m able to eat small amounts of food throughout the day. Life for me is to try hard to be really intentional with life choices and food choices to keep things as in balance as possible. Not easy! If a flare starts I practically live in bed until I can regain control… Read more “Trying to keep nausea and acid reflux under control”

Every day is different and unpredictable

What is my daily life like living with gastroparesis? Every day is different and unpredictable. Today may have been a decent day and I left the house. Tomorrow, I may be puking more times than a drunken 21 year old who rode the tilt-o-whirl a dozen times too many. Today, I may be wishing to see my gray hair days and live as long of a life as possible while tomorrow, I might pray to God that I do not wake up the next morning. It is organ failure. No other way I can think to describe it to those who have never heard of it. But, we can’t transplant stomachs. We can get rid of them but we can not replace them. It is something you cannot imagine. No matter what you read from a medical text book or hear from our own mouths …the pain, nausea and changed quality of life with this illness is just…… Read more “Every day is different and unpredictable”

Too scared to eat

What is my daily life like living with gastroparesis? Too scared to eat at times, painful bloating, no energy. My every other day life since being… Read more “Too scared to eat”

Nauseous but hungry at the same time

What is my daily life like living with gastroparesis? Nauseous but hungry at the same time is awful. But a flareup is even worse! I don’t have a lot of energy most days. Sometimes walking hurts my stomach, like I can feel every vibration of every step, in my stomach, so I have to walk slowly and hunched over. I go into an almost remission sometimes, where I feel good, like I can eat, but then I eat too much and then my stomach says “nope you’ve gone too far” and removes whatever I’ve eaten for the past couple of days, in a flareup. I’m on the low end of the spectrum and I can only hope that’s where this terrible condition stays. It’s terribly ironic that I am a Personal Chef and have always loved to cook and EAT I feel like I am slowly losing my drive to cook new… Read more “Nauseous but hungry at the same time”

I don’t have a life anymore

What is my daily life like living with gastroparesis? Laying in bed looking at 4 walls with a puke bucket beside me along with my medications.. I don’t have a life anymore.. May I add this is a short… Read more “I don’t have a life anymore”

The constant fear and worry never stops

What is my daily life like living with gastroparesis? I don’t have GP myself but, as the parent of a daughter with GP I can say this: every day is a roller coaster ride. The constant fear and worry never stops. The knowing about the pain, bloating, nausea, etc., looking and seeing that she’s up and dressed and headed to work and still knowing she feels awful is there. The guilt you feel because you can’t afford to let her stay home eats away at you. Knowing that at any minute it could all change again. One day is good, the next three are bad. She doesn’t scream out in pain any more, not because she doesn’t have it but, because she knows I can’t help her. She hides her pain and the other symptoms behind a fake smile. She gets up, puts on her makeup to hide the circles beneath her eyes and the pallor of her skin. A little blush to add color to her sunken cheeks and lipstick to hide her cracked and dehydrated lips. And, she looks good, she looks….normal but, I can see the pain behind her eyes, I can see the smile that just… Read more “The constant fear and worry never stops”

Living in debilitating pain

What is my daily life like living with gastroparesis? Living in debilitating pain along with feeling nauseated all day. As well as the littlest things you do wears you down to… Read more “Living in debilitating pain”

Good days we grab, and bad days we somehow get through

What is my daily life like living with gastroparesis? My daughter has GP (now changed to global dysmotility). Some days she does OK, and we might do something. Whatever the something is, it will wear her out. Other days she is bloated and distended, in pain, beyond tired has a headache. Friends her own age are few and far between. She is lonely. The family tries there best, making sure to spend time with her throughout the day. Lots of discussions about feeling like she is a burden. We love her so much she could never be a burden. But our love is not enough to change the amount of grief we all feel. She smiles and tries to do her best. But Moms can tell when it a real smile and a smile that is an attempt to cover-up how rotten she really feels. Each day we face our fears and do our best. Good days we grab, and bad days we somehow get… Read more “Good days we grab, and bad days we somehow get through”

Bad days are spent in bed

What is my daily life like living with gastroparesis? I’ve had GP for 14 years 9 months. I’m on disability. After 2 years I was able to go back to work. Only 10-20 hours a week. I wake up tired, nauseous and in pain. I take my meds 6 of them, 2 anti emetics, 2 pain meds for my neuropathy, 1 for GERD, 1 for my anxiety and 1 dilaudid. I also take a few hits of my medical marijuana. I change my jtube dressing and take my blood sugar. I usually go in to work between 11 and Noon. I don’t set an alarm unless I’m driving a resident to an appt. I love my job. I am an LPN at an assisted living home. I mostly do paperwork like making sure all the charts are together and purged and accurate. I complete forms and contact physicians offices. I get to spend my days with some of the best humans on the face of the earth. They are the reason I get out of bed. I also get my grands once a week. At the end of my day, oh yeah, I cannot eat all day if I’m working… Read more “Bad days are spent in bed”

Gastroparesis runs my life

What is my daily life like living with gastroparesis? Gastroparesis runs my life! I can’t make any plans, can’t eat, bloated, debilitating nausea. Lost 36 pounds in a few months. This disease is… Read more “Gastroparesis runs my life”

Waking up with the flu and going to bed with the flu

What is my daily life like living with gastroparesis? Waking up with the flu and going to bed with the flu. Exhausted, weak, chronic nausea with the inability to puke. Horrible stomach pain. I have no energy and no desire to get out of bed, let alone take care of a house, my family and show up to work. And can I say depression? I see doctors more than I see my friends. I am blessed to have a very loving and supportive family though! And some days are better than others. I cherish those SO… Read more “Waking up with the flu and going to bed with the flu”

Food is terrifying

What is my daily life like living with gastroparesis? I wake up each day to nausea. Food is terrifying. Malnutrition is even more terrifying. We are battling our own bodies every… Read more “Food is terrifying”

Sometimes I am in denial

What is my daily life like living with gastroparesis? Acceptance is my biggest problem, because I think sometimes I am in denial, but my body continues to remind me that I cant tolerate a lot of food intake, my system doesn’t want to accept fluids so I stay dizzy and dehydrated too much. How could buffets, subs, fast food, any food be the norm, and because of a Gall Bladder gone wrong, my life is so different. Some days I don’t want to go in public or drive and this is coming from a bubbly lil social… Read more “Sometimes I am in denial”

I never know what the day will bring

What is my daily life like living with gastroparesis? My daily life is me laying on the couch or bed, stinking from not having the energy to shower. Taking all day to do a few dishes, begging people for toilet paper, etc.. because I cannot work. It causes daily anxiety because I never know what the day will bring as far as symptoms. Gastroparesis daily for me is the biggest, saddest, most desperate needing illness that needs better treatments and a cure. Gastroparesis is a daily battle that is hard to fight… Read more “I never know what the day will bring”

Nausea, extreme fatigue, stomach pain and swelling

What is my daily life like living with gastroparesis? Nausea, extreme fatigue, stomach pain and swelling, side effects from meds including dizziness, drowsiness, blurred vision, memory loss. With all this, I find my anxiety goes up as I worry about carrying for my family, not being able to work, and alot of days, not even able to get out of… Read more “Nausea, extreme fatigue, stomach pain and swelling”

Every day is an adventure

What is my daily life like living with gastroparesis? Every day is an adventure because I never know how I will… Read more “Every day is an adventure”

Exhaustion, nausea everyday, and vomiting on bad days

What is my daily life like living with gastroparesis? Exhaustion, nausea everyday, and vomiting on bad days. Losing friends and feeling like a burden to your family. I have an amazing supportive family, but we still struggle at times as this is such a frustrating disease. Not getting to go outside on beautiful days because of being lightheaded or dizzy. Stomach pain and headaches. Crying and frustration. Also not being able to work anymore due to this… Read more “Exhaustion, nausea everyday, and vomiting on bad days”

I feel more like a burden as days pass

What is my daily life like living with gastroparesis? For me it is as if I lost all control of my life. I can’t even call it living, it is more like war. Constant pain, nausea, and vomiting. NPO and TPN dependent for 7 years come October. I didn’t only lose the ability to eat, but my life has been robbed of so much more. My husband suffers, my daughters, parents and brothers. They watch me struggle and fight day in and day out. All the while I feel more like a burden as days pass. We need the ill informed to become educated. Not only is our illness rare and difficult it is also forgotten. We need more funding, we need research, we need compassion and understanding. If it weren’t for our support systems at home or our social media support systems, as patients we truly would be lost. We need a cure.… Read more “I feel more like a burden as days pass”

The smell of food cooking makes me sick

What is my daily life like living with gastroparesis? NO LIFE! I did enjoy flower gardening just too hard to keep them up now with the nausea 24 hours a day .The smell of food cooking makes me sick so fixing my husband something is hard then I cannot eat what I fix for him. If I do I PAY FOR IT with a lot of pain .… Read more “The smell of food cooking makes me sick”

Simply exhausted

What is my daily life like living with gastroparesis? Simply exhausted from this disease. You never know when you’re going to have a good day… Read more “Simply exhausted”

Gastroparesis robs us

What is my daily life like living with gastroparesis? Gastroparesis robs us of so… Read more “Gastroparesis robs us”

It’s like getting severely sick and never getting better

What is my daily life like living with gastroparesis? It’s like getting severely sick and never getting better. I wake up nauseous and go to bed nauseous, constant pain – the screaming out loud kind and never being able to go far because you don’t know how you will… Read more “It’s like getting severely sick and never getting better”

My new normal is not normal

What is my daily life like living with gastroparesis? My new normal is not normal. I cannot work. I’m on disability, have been since 2014. I am fed via Jtube about 50% of the time, though that fluctuates with flares. When I can tolerate foods by mouth, they are very limited in quantity, and always very bland. Most of my time is spent in bed due to fatigue, pain, lack of sleep, and generally feeling unwell. I’m always in pain. I don’t vomit since I have the gastric stimulator, but still often have nausea, though not as severe as before getting the stimulator. I get migraines almost everyday due to lack of sleep from being in pain all the time. It never… Read more “My new normal is not normal”

You don’t know what to expect next

What is my daily life like living with gastroparesis? Constantly in pain, bloated, nauseous, so weak everyday is a challenge. Doctor’s don’t understand you they think it’s all in your head because you might look fine on the outside but in truth inside is a rollercoaster. I get depressed cause I can’t do what everybody else is doing. You just want to be normal again. Food is not a friend, you eat to live not live to eat cause most of what you eat doesn’t stay, it comes out one end or the other or even both sometimes. It’s miserable to have this illness, you don’t know what to expect… Read more “You don’t know what to expect next”

I never know if it’s going to be a good day or a bad day

What is my daily life like living with gastroparesis? I never know if it’s going to be a good day or a bad day. I do all the right things and still sometimes have flares that are debilitating. I am sick constantly so that I have learned to work and live with a degree of constant discomfort or situations like vomiting and going back to what I’m doing that healthy people can’t… Read more “I never know if it’s going to be a good day or a bad day”

Gastroparesis: Fighting for Change seeks to empower the gastroparesis community by providing information and education, hosting support groups and programs, and leading awareness and advocacy efforts.  We seek to unite those with gastroparesis to discuss our vision, goals, needs, services, and resources and endeavor to make a difference for our GP community by educating patients, providers, legislators, researchers, and the general public; spreading awareness of our disease; pursuing beneficial changes in legislation and policies; engaging in fundraising efforts; supporting new treatment options and research; and working toward solutions to our most pressing issues.