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.

94 Replies to “Six Months”

  1. Please know that if you EVER get sick again and I pray for your health but should you find yourself there again you call me I will be there for you I care and think the world of you, you will NOT go thru it alone again. I mean it. But I also know you are a very strong and special person and I admire that so much.

  2. My family are not REALLY there for me and I’ve reached out because of that and got out of my she’ll a bit because I wasn’t as strong as you were ๐Ÿ’“๐Ÿ’“๐Ÿ’“

  3. Oh, I wouldnยดt call me strong. I think that there is a true strength in being able to reach out, and to draw people in. I lack the strength to trust in other people, or to break out of the walls Iยดve built around myself. It is not from being strong that I learned to survive, but by hiding in isolation.

  4. We do what we feel we must. *shrugs*
    I am always wishing you well, praying, caring, and everything else too. But, you know this. Thank you.

  5. I very much appreciate the comment and sentiment, and the same to you! Look forward to hearing about your full and speedy recovery!

  6. So, I’m cheesing right about now like a little kid getting into too much mischief. ๐Ÿ˜€ I am awfully happy to have you in mine. *nods*

  7. Sounds scary and horrible.
    I can’t imagine what you are going through right now.
    My prayer wishes for you to be and get well.
    Be strong and powerful we are all here for you.
    ‘Google’ should in no way be a source of medical cures.
    I’ve read articles of too many people who relied so much on ‘Google’ search
    for symptoms. They panic and their anxieties build in the read of fear.
    Be well and I’m happy that you have a good friend whose helping you out and overcoming this ordeal you are going through. As your readers and supports we are praying for you.
    And your not alone.

  8. Candice, I too have the Epstein Barr virus! It hasn’t given me the same stomach problems as you and hopefully that’s a good sign for you that it’ll relent on your digestive system. Will email you soon about this!

  9. Please do! More commonly you get chronic fatigue or nothing but in rare cases it causes Gastroparesis but hopefully it will diminish as the EPSTEIN Barr goes away. Please write me but no rush ๐Ÿ’“

  10. I am with you! Every day when the wind changes direction, or the temperature rises or lowers or it rains there are constant painful reminders of the illnesses which try to lay me low. Copd, costochondritis, MS, Ulner Nerve Palsy, severe arthritis throughout from my neck to my feet from several injuries from service. I accept it and I just say it still could be worse. The best medicine for me is to keep serving what He allows me to share as His spirit guides me. You do it also, and I read His word daily and take comfort in the fact that one day I will shed this body for one like his! Keep pushing you do inspire many. Your strength is recognized…especially by me! You inspire! Love hugs and blessings!!!

  11. Candace
    I thank you and know many others will to. I’m with you, the Internet is a big server of conflicting information. I’m thrilled your doctor paid attention, the outcome sounds much better. It’s nice to know someone who really knows the answer. I’m always here.
    Huge Hugs

  12. You are definitely thought of and prayed for. I praise the Lord for your friend Mark and those who are helping, especially your doctor as well. I pray for them each. But I especially pray the Lord would be your comfort and your embrace as only He can. He loves you so much. You mean so much to Him. <3

  13. I am just reading this now dear and so very sorry to learn you were going through so much. Stomach things are so insidious and awful. I recall having Giardia for 6 weeks before a doctor diagnosed me (it’s a freaking parasite)…I was emaciated by the time he figured it out! I too have been haunted by my gut and certain experts now believe that our stomachs may be one of the most vital organs we have in our system. It may be responsible for so much of our well-being, even our brain health, so if our gut isn’t well, then none of us will be. I’ve started on a pretty strong regimen of probiotic food and vitamins to help me get my belly in order. I hope you have found a cure too for all that ails you. Finding the right doctor who believes all this is critical. Let me know how you are feeling now! xoxo

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