Finding a Smile Along the Journey

Moshe King
Moshe King

Hello All, My name is Moshe King, I am 38 yrs old and I live in Hendon – north of London with my wife and 4 kids. I finally got diagnosed with GP after meeting with Gastroparesis 5yrs ago. This is the first time I have shared my story in public as requested, so here it goes – I am no writer but I hope through the pain you might find a smile along the journey too, I didn’t realise how much I wrote until I pasted it across just now – sorry in advance.

Like many sufferers, my history dates back many years is rather complex rhetoric. In a nut shell and as far as we can ascertain my story really starts when I was five and a stomach infection / bacteria left me with Idiopathic Gastroparesis, except it was never diagnosed nor at that the time was it even thought of from main stream medicine.

So you can image the pain, concern and confusion of my parents, Doctors and teachers whom never knew what to make of me or my condition. From this young age I was sick every morning of my life upon waking, I would find it hard to eat my meals, and was always being labelled as a fussy eater. I felt sick after eating and drinking most things and most times after eating I would end up vomiting, whether it was in the car on the way to school after breakfast or after “every food break” during school or after dinner… Forcing myself to eat knowing that I would feel sick or be sick the other side.

With a stiff British upper lip and limited diagnostics available those around me decided, that the show just had to go on, and I had to just “pull myself together”!

The saga continued, being dragged from GP, to specialist and back again, to only be continuously told the familiar story that it was all in my head, so I had to de-stress, stop worrying and take some more pills. I grew to ignore my own cry’s and tried my best to hide my pains and discomfort as most the world grow tired of my broken record, my head hurts, my tummy aches, I feel sick, I don’t feel well. Even now the world around us seems to just stop listening and simply moves on day by day, never to be held back or miss a beat, whilst leaving me sinking in quicksand.

Longer story short – by the time I was in secondary school my being sick was rather discreet, I had it down to a fine art, I found chocolate, cake, crisps, and fish fingers got me through the days.

In Rugby throughout my career managing to play till I was 26, when I stop playing for religious reasons, I was sick at most line-outs, rucks and scrums, getting the affectionate nickname for myself as the “sicking hooker of St Albans.”

By now my relatively random existence was to me rather normal, and I was used to being sick between 3-5 times a day.

Life moves at a vicious pace, and I found myself excepted to University and was on course to go into the Officer Training Core with my heart set on going into the British Army as an Officer in the RLC after training all the way through school within the CCF. During the early mornings of army training, I would rise early to be sick and sneak back to bed ready for the PT offices to come wake us, every now and then I would just vomit during the exercise itself, which would lead me to have to work even harder to prove it wasn’t a lack of fitness. If ever I was challenged I blamed it on a heavy night or paining injury like bruised ribs.

Life then really changed in my 4th and final yr of University, I was competing for Leeds University (their club was joined with Leeds Metropolitan as was their OTC) in the National Student Judo Championship and in my second fight I vomited blood. I was stopped from my fight and immediately shipped straight to hospital. I tried to explain to the Leeds Doctors that this was normal for me, and although I appeared on the outside to be robustly fit, surviving on porridge and Tuna Rice they would not hear anything of it at all, they told me that this was no way for a person to live – I was in shock as the message resonated deep inside that maybe it wasn’t in my head after all.

The next thing I know and a number of months later, I was “under the knife” being diagnosed with excessive reflux; the solution was key hole surgery, trans-abdominal Anti-reflux surgery. Little did we realize that this was a major misdiagnosis and the Surgeon had missed the reverse peristalsis of the esophagus, which might have looked like reflux but was actually my body trying to bring food back out its shortest and easiest route.

So a month before my Army intake to Sandhurst, there I was – stuck in bed, with 5 holes in my abdominals, having to look for a new career path, my dreams shattering in front of me, the rug pulled from beneath me. No rugby, no judo and no army, for now I was devastated and the worst thing of all is that, I wasn’t even cured.

Masked for another ten years, still dragging myself to specialists on a wursts to find what seemed like the holly grail, but all I wanted was to know what was wrong with me. I went to Israel for a few years where I was looked with no joy, and then back here in the UK, Where I was still told it was in my mind or possible the catch all favourite of IBS. Due to the operation everything seemed more intense, more painful, more difficult to be sick, sharper cramps which just got worse and worse. The pain was debilitating yet I still ignored my bodies cries and suffering, I just “carried on” went to work the best I could, not eating was by default position to make it through my day. Just a late night meal and a painful morning sickness seem to be my daily routine to just get by.

It wasn’t till I got married that my wife again pushed me not to settle for this “way of life – if it could be defined as that” with irregular bowel movements catching me unawares and cramps so intense I could get out of bed for hours / days. I just felt that after 30 years to go back to the Doctors again it would be futile.

Most Unlike me I actually listened to my wife and went back to the Doctors regardless. By pure luck I was guided to a different specialist, superior to the one I was supposed to see, just days after my second Son was born, (named after the Angel of healing Rafael to try and help my search for healing).

Within about 5 minutes of explaining the above pathology, with the aid of new found medical knowledge and technological advancement Prof Epstein was the first Doctor, not just to listen to my whole story without judging me, all the way from the beginning but he truly understood my symptoms and believed he could demonstrate what I actually had, it was as if he had truly seen other people with my condition!

Within a month I had a full diagnosis, and it was no longer in my mind alone, a crazy fantasy, although there are most likely pains and scares in my mind now too for sure. It was liberating to know I was “normal” of sorts and that although my stomach didn’t really want to work with one mild judder ever 5 minutes, now at least I was aware of it, and I could start to try an “help” be kind to myself. For example I could Stop punishing myself, for not being able to achieve everything I felt I was obligated to by the people around me, to stop eating more than I could to prevent causing myself crippling pain, to allow myself to crawl into bed for an afternoon in my day off to recover and gain my strength to fight the pain the next meal.

I slowly started to self manage my life, and started learning about my body, every aspect. Intermittently, liquidising and avoiding foods that I now understood why they hurt so much such as raw vegetables & Red meat.

It’s Still not easy and there are ups and downs like everything – one of the hardest things I find is looking healthy but internally feeling so rubbish, and knowing that’s it’s OK not to be OK but still feeling guilty for not being OK and having a lack of energy to be there for my Family and Friends. I have really investigated my diet, using a mix of GP friendly foods & IF (intermittent fasting) to make it through my days.

Other positives is that after 13yrs I bravely went back to Judo as I needed my energy back and to feel I was taking back control of my life. With the clubs help I am now grading 4yrs later for my Black Belt hopefully in March 24th 2019. I coach and train twice a week, come rain or shine, I even compete as a veteran, regardless of my fatigue levels or nausea (Judo days I can only drink to avoid being sick unnecessarily although sometimes it’s simply unavoidable).

Only now have I felt strong enough to try and help those around me that may also be struggling with GP or even talk about it openly rather than just hide it, as the awareness might help others struggling to be diagnosed. I have managed to get to a place or relative stability (medicine free – for the first time in 33 years) although it’s phenomenal tough and challenging, a relentless rollercoaster, a warrior is warrior not just when he wins a battle but when he stands to fight in every battle.

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I’ve accepted that my journey is here

Amanda Hall
Amanda Hall

As this year comes to a close i am truly disheartened by the fact that my body is crippling and dying and no one (not me, my parents, the doctors) can change this for me. I have fought my hardest fight for 6 years since my life was taken from me by Gastroparesis, Sepsis, and now Dysautonomia. I have learned more than i could ever possibly imagine.

That being said, I have accepted that my journey is here. I spent this year feeling the emotions of these diseases so I could feel the emotions of everything that surrounded me. I coped by being so hard & emotionless for 5 years because i would have died otherwise.

This year has been a year of unexplainable growth and i am so content in knowing that although things are shutting down, my soul is flourishing and very much alive. Although my body may show chaos, inside it feels peace. I live in an aura of life and death and it has been damn hard to get here… but my life has never been more beautiful. I have never been full of so much love, blessings, acceptance, and nonjudgment.

When I talk about it, it sounds absolutely scary. But I am not scared of anything anymore. I have prioritized what is important in my life and every day, every minute, I am grateful to make a tiny step toward that unconditional love and acceptance- for myself and others. I have no hate in my heart, I am genuinely kind to everyone, and my spirit is something that is out of this world.

As I continue to put one foot in front of the other every minute of every day, I am reminded that I am here for a purpose. I have found love in my soulmate, Eric Scott, and each day I feel like I am the luckiest person in the world. I’m so glad I let my walls down and trusted that things were going to start fitting perfectly beautiful in this life if I just continued to stay on my path. It took days, so many days. My body and mind are beyond tired, but I truly feel like i have finally made it. My soulmates Paris and Brittany have taught me honesty, character, strength, and pride from both me to them and them to me. My brother is a father and as I watch them thru my own lens, i am so happy. The life they have is full of beauty and God am I blessed to be a part of it. My parents have given their all to me in every aspect and I cant help but feel so incredibly loved and supported- something i realize most people don’t have.

One day this disease will take me from this physical world, but my determination to live my best, most positive and abundantly grateful life will leave the most beautiful legacy on this world and the people that have crossed my path in the past 6 years, especially in the past 6 months. I chose happiness in a world of overwhelming sadness and I practiced being kind to myself every second of everyday. I chose to take the overwhelming rawness of this disease to put myself in the best spot for my mind, soul and body to continue along this journey until my time comes.

I have loved hard, I have been loved harder and I hope each person that has been a part of my journey feels the gratitude and embrace that I have tried so hard to give. Each day I step outside I see beauty. there is no more pain. I am eternally grateful for every single piece of my life. With the cards I have been dealt, I have played the winning hand. I am not sure what ‘enlightenment’ is supposed to feel like, but I truly believe that is my calling and I believe that each day, each minute of my life is making this beautiful dream a beautiful reality.❤

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