So this sadly ( pathetically) is more a venting post then anything else.
I had a flare up that started mildly on Friday and progressed into a mega beast over the weekend into Monday. I hate that even with being 98% strict with my diet, quantity, and quality I still can't mange or control these flare ups. Sometimes I am lucky and feel one coming and switch to fluids only (such a fun thing) making it disappears before becoming a full blown disaster. But mostly boom when one begins I am down and out.... Sometimes for days.
On Monday the vomiting was so intense I started having nose bleeds. My poor two year old Charlotte was so freaked out it broke my heart. She couldn't stop trembling and crying about my "broken nose" for hours. Not something I had ever invisioned subjecting my children too.
I need food, I want food yet when I eat food I get sick. It's a mind game that sadly I feel like I am too often on the loosing end of. On a fluid only diet I am weak, loosing weight, cranky, sad, hungry oh so hungry and I miss the actually action of eating terribly. I still have to make meals and snacks for the family which is a whole different level of torture. I can loose anywhere from 2-10 pounds in a week from fluid only diet. Making me weaker and sicker feeling and looking. When eating small balanced meals like the ones I post I can maintain a healthier weight, enegery level and mood . But it seems like my flare ups and pain are stronger and longer lasting. It's also seems that they are becoming stronger in general. Like the GP is progressing.
It's the new normal having mom walking around with heat packs and tea and getting up at any given time to go vomit and then return to whatever I was doing. Our youngest often asks me "how's your belly feeling mama" or I hear Ellie saying "oh moms going to throw up" if I leave the room suddenly and my oldest makes plans and then looks at me and goes " if you aren't too sick then". It's like I have become a unreliable person. And that is a first for me, I am use to being accountable and punctual. The kids, bless them don't seem to love me any less and are really starting to consider it all "normal".
My husband is a trooper, having a suddenly sick often vomiting wife can't be fun. But he never lets on to that, and for that I feel so blessed.
It has been getting me down that I no longer can function "normally". I am easily tired, often sore, weak, foggy, starving, anxious, overwhelmed and did I mention starving?! I once read this disease is like slowly starving to death and I think that person may have been right. Even when I am at a more healthy weight ( heighest BMI to date 17.6) I am still hungry, feeling deprived and feeling anxious about food because I know it's so fleeting and could be days again before the next meal stays down.
All that venting said and done I know I am incredibly blessed and that I have numerous healthy days where I can act normally and pass as disease free. But the physiological part has been wearing at me.
Hoping some day sooner then later they find a way to repair the Vagus nerve and this will all be just a bad dream!:)
- JVW
So sorry to hear you are going thru this cycle that us GP'ers are all to familure with. Have you considered your " healthy" eating May be causing you more problems?
ReplyDeleteMy GP HATES HATES HATES 99.9 % of every food I have ever seen you post. Which has often been extra disheartening to me being that you have marketed yourself as gastroparesisfriendly . I'm not criticizing please don't get me wrong, I very much support what you are doing. Just explaining my experience and understanding of my GP over the last 6 and a half years. Most if not all of the food you list would and has in the past sent me to the hospital in full flare mode. My gi tract just will not tolerate fruits or veggies, not in smoothie form, not in any form. So I know just how frustrating it is to want to eat as you know to be "healthy" but your body say otherwise..
As my GP progressed there were more and more things I just couldn't tolerate , so I just wanted to share my info with you in hopes maybe it'll help you with your flares.
I really hope you are able to find relief soon. I know it's hard.
You have my support.
Hi Gwendolyn, Thank you for taking the time to share and for your support. I understand everyone's GP is different and that GP often progresses unfortunately. I am trying a less then main stream approach to managing mine. From what I have read, seen and heard even the " basic GP diet" of soda and saltines doesn't often help or work for people. In addition it is extremely unhealthy for my body. I don't tolerate Gluten, high fructose sugars and dairy well even before Gastroparesis. I also find that even people with all the pharmaceuticals are still suffering, having terrible days, ER visits, chronic pain so those don't seem to be working efficiently either. That's why for me I am choosing a different Gastroparesis management method that so far seems friendly (most days) for me. Either way this illness is a beast and it seems no one has a solid answer to curing or managing it we all just do what works for us as individuals. I am sure you are familiar with Living well with Gastroparesis , Crystal Zaborowski's book. She tries and mostly manges her GP with diet and natural remedies as do many of her followers. I hope some day we can find a cure that helps us all. Right now just trying to share my journey and my attempts. Wishing you all the best xx
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