By TheFeatheredSleepPosted on

Illness is the defining point. It tells us if we have been going the wrong or right direction, it forces us to our knees, we find out the truth whether we want to or not.
I’d been blessed with good health. I didn’t even know it. I thought those who were tan and never got the flu were healthy, surely not me, I often felt a little rough. But I didn’t know what ‘rough’ could feel like, I mistook a morning allergy or sleep deprivation or a headache or stomach-ache as suffering. I had no idea.
I could write a book about this. But for now I want to write the most important salient things. Namely, what you learn, where you go and crucially, what you should AVOID.
You should avoid thinking the internet is some kind of medical reference library. The majority of information online is actually negative, it can scare you senseless. It can misdirect you, it can make you give up.
If you Google Gastroparesis you would come to find out it was an incurable, little-understood disease that would cause chronic life-long suffering for all who were diagnosed with it. You would not find out that in many ways, it is an umbrella term, just as many things before it were, that it is completely contradictory pointing to gross error in definition and that there are so many reason(s) for it and presentations, no one size fits all.
I often wonder who decides to write; Chronic incurable disease. Don’t they know what that does to people?
It’s pretty scary when you Google a disease and find so little on it, and what you do, is negative and bad-news. When you are sick you need hope more than anything else. You desperately search for it but all you find are horror stories of suffering.
That’s why I am writing this. In hope that if ONE person who has been told by their doctor they have Gastroparesis and has found the horror-story world of Google, they may see this and have their hope restored.
You may think … what’s the point of having hope if you might end up with a chronic incurable disease? Exactly for that reason. And because there are many things UN said about most diseases and many experiences NOT documented that should be. They say there are no cures for most things but so often there are ways to cure the body that go beyond what is ‘said’ and well documented.
Gastroparesis loosely means a motility disorder of the stomach (it doesn’t move right) which can cause a paralysis of functioning which are known as Gastroparesis attacks that often lead sufferers to the ER. When you experience Gastroparesis it often is 24/7 with cycles of ‘really bad’ and ‘bearable’ symptoms.
What the internet will not tell you and what the poorly trained doctors in most ER’s will not tell you and what the money-hungry Gastroenterologists will not tell you is if you get diagnosed with Gastroparesis, it doesn’t even mean you have it, and if you do have it, it doesn’t mean you will always have it. Yet if you Google Gastroparesis, most sites from the Mayo to the Cleveland Clinic will tell you it is incurable and may even lead to you having a feeding tube.
The first time I read that, I searched and searched the internet and found NO story of someone overcoming Gastroparesis. In that moment I lost hope and everything became SO much worse.
I was lucky, in that my family doctor thought to do an Epstein Barr Virus test on me, it came back VERY positive, suggestive that it was a virus that caused the symptoms of Gastroparesis. If you add ‘viral Gastroparesis’ to your search term, you may find some mention of virally-induced Gastroparesis going away in 1/2 years time.
I found out that it’s what you pair your search words with that brings up the right articles, and by searching in more detail I found tons of examples of Gastroparesis symptoms going away after a virus and the period of time needed for the body to heal from the nerve damage (much like Shingles). The average time being 1/2 years, some longer, some shorter.
Nobody told me this. Everyone told me Gastroparesis is a Chronic life-long disease that you will always have, and there aren’t even any good treatments for it and if it gets really bad you will need a feeding-tube and you may even have a pacemaker in your stomach implanted. Not once was I told there was any hope. If my family doctor hadn’t thought outside of the box due to having a similar case a couple of years ago, I may well have found the highest bridge in my city.
It got me thinking … we need to be more responsible about information and most positive. I’m all for realism, and anyone who knows me knows I’m not always glass-half-full but when you experience the negativity of the medical system and the incompetency (and the sheer cost) and you get only bad news, you quickly realize that something is very, very wrong.
If you are reading this and you have been told you have Gastroparesis or you suspect you might, bear in mind, for every negative story there are stories of cures and remission and complete resolution of symptoms. It depends upon why you got Gastroparesis and how you body copes and how you cope. There are things you can do.
First and foremost, you’re going to feel like never eating again, you may become anorexic unwillingly, because who wants to eat when they are sick all of the time? Nevertheless, keep eating, eat like your life depends upon it, don’t quit, eat through gritted teeth, eat when it makes you cry, because your body needs its strength and this will get you further away from the risk of having to be fed via a tube.
I felt a moment where I could have given in and quit eating, because truthfully I HATE food with a passion right now, but I hated the idea of a feeding tube even more, so now I eat even though I am NEVER hungry, NEVER have an appetite and hate food. I eat enough although it is very, very hard and some days I throw up what I eat and I have to wait and begin all over again. It has been a total nightmare, a complete living hell, and many times I have wept with fury that I ever have to eat again, but I remind myself of those who have NO food and I remind myself of my goal (to get well) and I eat.
Second to eating, when you have the lowest points where you may have to go to the ER to be rehydrated, because you cannot keep anything down, don’t forget that THIS WILL GET BETTER. Keep telling yourself you are strong, you are healthy, you are a warrior, this may lick you but it will not beat you. Remember during a really bad period where you are sick EVERY SINGLE MINUTE that you will recover, you will feel differently. Hold tightly onto that.
I have been BLESSED with friends who have helped me through this. My friend Mark is now my brother, he has been more than I could ever, ever have wished for and I love him dearly. It still astounds me that anyone like him could exist. He has selflessly given and given and given, even as he himself suffers. He is the perfect rare example of a truly selfless soul and has renewed my faith in humanity tenfold. I may not have had much family support but that has been made-up by the support I have had from my friends and it is true, in sickness you find out who your true friends are and often there are more than you realize.
Let me take a moment to thank anyone reading this who has been one of those people, I have thanked you personally but please know, your mercy literally has saved me from the brink.
So if you are going through this yourself and you have anyone – reach out to them. If you do not have anyone, contact me and I will help you. We must be willing and able to help those who go through these things because they cannot do it alone and should not have to. I will write more on this as I go through this – I am going to recover. I am going to get well. I will document what I learn to help others. We need to pay it forward.
Finally (for now) take the experience and grow from it. For me, I have experienced crippling anxiety with the Gastroparesis symptoms, the doctor(s) told me this is due to the nerves being damaged and how the mind-gut connection is so close, what feels like mental anxiety is actually physical anxiety and you cannot tell the difference. It feels like a huge panic attack. There’s not much that works against that, except taking some type of anti-anxiety medication in the short-term or long-term if it helps. I used to think taking pills was a last resort and yet, it’s sometimes necessary, to get through really hard times.
I have learned that if you had any anxiety beforehand (which I did) it will be exacerbated by Gastroparesis symptoms and you may also experience other issues connected to the reason you got the symptoms in the first place. In my case, Epstein Barr often causes very bad fatigue. By understanding what is going on, taking sublingual Vitamin B6 and B12, you can keep your immunity up, and keep your hope alive. After all, even if it’s a year from hell or two, it’s not your entire life.
That is what I am trying to hold onto. I may wake up heaving every day right now, but I’m hopeful that won’t be the case in a years time. I panic and worry that it will go and then return, but what I have to do as my friend told me, is take it day by day and not imagine worst-case scenarios. I can honestly say the advice and support of others is how you get through the worst of days. I may be too sick right now to work and I may be broke but I am more grateful than I have been in years, for the kindness of those who have extended their hands and said ‘let me help you’. Those words are a miracle.
My friend Mark says what helped him the most with his illness was to pay it forward, and focus not on himself but on others. I hear him and I am attempting to do the same. Currently it’s day-by-day, some weeks are unbearable still and I pray to die, whilst other days I can almost remember how I was before I got sick. What I do know is, if you get sick, with anything, don’t rely upon the internet as your go-to, and don’t isolate yourself. In my case it was my family doctor, not the fancy high-paid Gastroenterologists, who found out what had caused my sudden and violent symptoms. I have learned so much from this experience and continue to.
If you’re reading this and you feel hopeless, know that you are not alone and there is hope.

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94 Replies to “Six Months”

  4. Thank you so much for sharing this. So many people have been terrified because they’ve used the internet as their sole source of information. I’m so glad you have a doctor who is invested in finding out the cause of your illness rather than just treating the symptoms. I hope you start to feel much better soon. Until then, continue to fight. Blessings to you!

  6. Sharing your story is going to help someone else. That’s brave of you, truly brave.
    “If you’re reading this and you feel hopeless, know that you are not alone and there is hope.”
    Amen.

  7. Illness is truly the worst. 🙁 Like, you may lose your job, your home, even your friends or family. But all of that is manageable so long as you have your health. I am so sorry to hear about your health struggles. I wish we could live in a world where illness simply didn’t exist, so that we could all just enjoy our lives. You are so, so, so blessed to have a strong support network to help you through this. When I was struggling with mysterious, chronic health issues, and having all sorts of tests done, and suffering in silence, I had no one. No friends, no support system. One of my sisters stepped up for a short while, but all she really did was add to my anxiety and make me feel as though my health issues were my own fault. It sucks to be sick. It sucks even more to be sick and completely alone. But I learned to rely on myself more than ever, and also learned that I must never, ever count on having someone to be there for me when life is difficult, and that I must be prepared to fight for my own wellness and always lean on myself, no matter how ill. I guess my lesson was the opposite of yours. I am continuing to think good thoughts for you, and for your continued journey back toward wellness. I hope that anyone else who is experiencing what you have reads your words and feels encouraged. {{{Hugs}}}

  8. What a journey you are on, Candice. I am so proud of you for taking charge of ‘it’ rather than the other way around. That takes guts. And motivation. And strength. And faith in yourself. All of which you have even if at times it does not feel like it. To have a clear diagnosis, and true information makes such a difference. You’re right, you know, Dr Google can be such a trap. Knowing how to do a good search is more than luck – it’s a skill. One which you obviously have honed. Keep on fighting Candice. You can do it! There are many of us out here who are behind you all the way. Sending you much love, hugs, healing xxx

  9. Thank you for sharing your experience. It will undoubtedly make a difference in some lives. I’m so glad you have a doctor who was open to finding the true problem. Hope your healing comes soon and completely.

  12. So, like a lot of other medical terms, Gastroparesis is really a description of a behavior (or, lack of a behavior, in this case) and not really a name of a specific disease with a specific cause. As a diagnosis, its like being told you have Hepatitis, but not which type, when which type makes a huge difference in treatment and prognosis. You have a good doctor who didn’t hear the name and throw up her hands, but asked why and how it was happening. I hope your healing and recovery comes soon.
    Reading about diseases on the internet can be a lot like reading the information on rare side effects of medications – very scary.

  14. A strong woman writes here. Remember this as the time you were shaped to be a new you. Take care Candice you will get through this. X

  17. You are truly blessed to be loved by your Mark, your friends, and your family doctor. I admire you who, through your own pain and discomfort, are reaching out to others with this condition and being a voice of hope when apparently there is so little otherwise. For me, personal testimony means a lot. People sharing their own experiences can engender compassion, which brings about healing in a deep way. So thank you, Candice. Take good care.

  19. Medicine will take some changes, i the very different future, nonetheless now would be a go start to begin looking into the paranormal..
    Imagine an alien, their medicine can’t evolve anymore other than knowledge of different sentient creature, an even then, life has some basic rules..
    With their medicine one could live forever, however they have set a variable limit, they’ve watch human’s closely not for our humanity but a ship which has chosen to show it self..
    Silver Ship

  21. It’s very true that we shouldn’t blindly accept what we hear from doctors, etc. I was told numerous things during both battles with cancer, not the least of which was the improbability of surviving the second battle. I was constantly being given the bleakest scenario. As you indicated, the most effective response is to take charge and dismiss everyone else’s boundaries. We are capable of far more than we can imagine. Stay healthy, Candice. ☮️

  23. Thank you for sharing your hopeless and honesty/.
    I have epstein bar high titers and it wipes me out. Am trying monolaurin which helps some

  24. Thank you for writing this. I don’t have the same illness as yours, but… somehow it helped me too.
    It reminded me of what a child of mine went through at some point, when they couldn’t keep anything down for about 3 weeks. I was worried sick, the dad was sort of annoyed at me (see, I was the one making my child sick, of course, by overprotecting or smoething).
    It also reminded me of myself, and others near and dear, and the ‘illness will show who your true friends are’… yes, I’ve certainly experienced THAT.
    Get well my friend.
    XO

  26. Wishing you all the best in your healing process, Candice.
    You are right that there is so much misinformation out there on all sorts of subjects.

  27. It’s never easy, dealing with the physical ailments we’re dealing with, and most of the time, there is no “known cure”, because the physical conditions, ailments we’re experiencing are a reflection of how we’re ill internally, and so, we must solve whatever issues that lie within us (in our psyches) before all of these physical manifestations can be “cured”…like my migraines from before, when they attacked, it was, debilitating to me, and no amount of painkillers worked, until i sorted through the issues in my life, then, i don’t have my awful migraines anymore.

  28. So sorry you are going through tough times with your health. You are lucky to have such a thorough family doctor…they are rare creatures. I have lived most of my life with disability and chronic illness. I have become totally disillusioned with the medical establishment. Most of the time they are just guessing and hide their incompetence behind a veneer of drugs and technology. They know very little. There is more to life and healing than the material facts. The mind-body connection is a mystery. Personally I have found the internet very helpful although you have to be careful of your sources. There is a lot of support and advice on how to cope with chronic conditions that doctors will not tell you. The body is a miracle machine and no one can predict the future. You may have good days and bad days. Appreciate the little things that make life worth living and have faith in yourself. I am glad you have loyal friends. You are a wonderful writer. I find it helpful to channel myself into writing or art. It gives my life meaning even on days when I can’t get out of bed. Thinking of you with love,
    Nikita
    x

  30. Sounds really horrible, I cannot believe that you are going through this. Candice, you are always in my prayers. You know I love you tremendously and that I am always there regardless of the fact that I live in another country. I really hope you know how much I cherish your friendship. Stay awesome and I hope to continue reading your masterpieces for years to come. I try not to comment as much because as somebody told me “YOU ALWAYS SAY THE SAME, you get boring” Love you and stay awesome, smile regardless of the pain, also remember that your gut is connected to your brain.

  34. Dearest Nikita, you’re very right, it’s about knowing how to search the internet it can be very good if you know how ( I am slowly learning!). I’m with you on doctors unfortunately. It’s hideous that it’s mostly the case. Chronic illness is this vast hidden world of suffering and they don’t care. You’re so right about the body and the future. Wise words my beautiful and courageous friend. I wish you only good things you inspire me 💓💓💓

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