Two u-turns in two days…oh,the unpredictability of debilitating chronic conditions and the disappointment they cause, not only for me but for those I love and care about. The past two days I have tried to get out of the house with my daughter for lattes and shopping and had to cut both exertions short due to Gastroparesis sudden attacks. These attacks consume me and cannot be walked through, talked through…but quite easily moaned and groaned through. The only option my daughter has is to makes a u-turn and drive her sweat dripping, stomach holding, moaning and groaning mom straight home.
I remember when the kids were little and I’d start a day feeling pretty well–well enough to take them to a toy store. Filled with excitement, they’d get dressed and ready. Too often when they’d come running down the stairs ready to take to the garage and jump in the car, they’d find me horizontal, and apologizing for suddenly being unable to stand up, let alone make it to a toy store.
Ouch, my heart would hurt as I watched disappointment spread across their adorable faces. They learned to accept too much disappointment too early. (There is a silver-lining though–we all love when we can carry out our plans and never take for granted a “normalish” outing together.)
My daughter is eighteen now and old enough to drive anywhere she wants–thank goodness! It doesn’t stop the disappointment of the blowing up of our plans, but it cuts it a bit. Her and a friend are now out shopping, hopefully treating themselves to the iced coffee drinks we her and I planned to indulge in (mine without the coffee).
Today’s GP attack has calmed down and (knock on wood) has not turned into the monster it did yesterday. I am thankful for that…but hungry. To avoid the monster symptoms of Gastroparesis, you can’t eat. I just realized, I have the TV set to the Food Network. What an interesting thing the subconscious is. Am I eating with my eyes?… hmmm…
U-turn stories welcome–I know most of us with chronic unpredictable conditions have a slew of them.
I have a question. What is the pre-cursor symptom to the attack? And why do you stop eating? The reason I ask – not trying to be rude – is because my friend, Daniel,whom I told you about, is now having attacks almost every week. Sometimes they last days or weeks. I thought maybe if he knew the trigger symptom and didn’t eat, he could prevent the length of time they last.
I hope you are feeling well enough to do ’some’ things with your family. It is so hard when you have to change your plans or cancel them. I have been thinking about how I am going to get out of going to the rehearsal dinner if it is in my son-in-laws parents garage, in AUGUST! Yikes.
I’m so glad that I have met you Kerry! You are an incredible human being! I’m am blessed just by being your friend!
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I was thinking back to disappointments and realize that the most difficult for me have been when we have had to tell our adult children and their families they could not come to visit because I was too sick…or that dad had to cancel a trip to see them because I was too sick…As adults some of my children have not handled this well..and it has fractured our relationship ~ they have taken it personal. I did not become too sick to travel or “push” until they were all adults. What you go through is alot worse, Kerry. Your courage and strength is to be admired…
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Here’s a u-turn story. When my granddaughter was born over two years ago, I felt well enough to plan a welcome to the world party. It would take place at my son and daughter-in-law’s house that’s a little over an hour away. I sent out invitations, arranged for food, made plans for how the day would go…and then when the day came, I was too sick to go. I like to think that my husband went for both of us. It’s so hard to make plans. I think that’s why I rarely do anymore. I just take “pot luck” as far as visiting goes!
U-turn stories…. well mine mostly just involve a very silly lady who has not always been good at accepting her limitations, and was always trying to push too far.
Sometimes she could pull it off, others she just couldn’t, however hard she wanted to.
There have been shopping trips to ‘malls’ (shopping centres here) which just ended up with me resting in the car after driving there, only to drive straight home without ever leaving the car, Xmas list still untouched.
The momentous occasion that (Yes I know, very stupidly!!!) I set off on a walk with a huge group of friends, a route that was to take all day, up and down hills etc.
I made it to a nice little pile of rocks near a stream, smiling gamely about being happy to stay there and maybe wander back to the tents later. “But no, I ‘m not coming with you all today.” When they were out of sight, and I could sit upright no more I had to lie down on the grass all day, to passers by I looked like I was sunning myself, but in reality I was unable to sit up, or get myself home!!!!!
Thankfully their walk took longer than expected, and I had made it to my feet and was back in the tent by the time they got home. (Don’t really remember how I did it though!)
They could all see I was ill, but didn’t know the reality….. just the way I like it!
You have constant challenges to your health and happiness Kerry, and are an inspiration!!!
I really hope your GP gives you some good days soon, I don’t have it myself but it sounds horrific. It must be scary for your daughter too, she sounds like a really great girl. A credit to her Mum.
Take care Chuck,
Zar
xxx
So sorry your plans turned out this way. Can I ask you, the gastro condition you are talking about…do you get a horrific pain in the stomach that can sometimes go thru your back like a knife stabbing you and it is always debilitating, but sometimes as you talk of the monster attack will worsen and last hours on end. and I know you can’t walk and talk thru it…just moan, groan and sometimes scream the pain reaches such a point.and you get where if you just stop eating, you may not have an attack …Since our poisoning and I know burns and necrosis/lesions to internal organs …they don’t seem to know what is causing these pain attacks…endo and gastro exams just showed bad inflmmation and some scarring… of course half of them don’t understand or believe in toxic injuries and mold poiosning either…. How were you diagnosed of this condition….if they examine you when you’re actually having an atack can they find it like on a sonogram or something?
I’m so sorry for your pain, I can relate and I thank you for your sweet spirit and positive attitude toward life and love…. it is so hard sometimes, but we can move forward and try to help others who live with this type of pain on a daily basis….or even mcs, being unable to go anywhere…even with the mask the chemcials make you sick…. I will keep you in my thots and prayers and I’m glad to be your friend…hope you have a good day….
Thank you all of you for sharing and asking questions…and as usual, making me smile with your support.
IRIS–You are describing Gastroparesis symptoms to a tee–a least how I experience them. Have you gone to a Gastroenterologist. GP is a stomach motility disorder, the stomach muscles can’t contract enough to move food into the small intestine so it stays in the stomach for too long and causes the symptoms. The cause is damage to the Autonomic nerve–in some cases diabetes causes it, autonomic dysfunction and in most cases it is idiopathic.
When I first started having symptoms–by this time my stomach could barely accept a sip of water–my GP did blood tests for pancreatic problems and then sent me to a GE when the tests were normal. I had a CAT Scan which was also normal. The Stomach Motility test for Gastroparesis followed–it is a simple test. You do have to eat an egg with a bit of radioactiveiodine (In spite of MCS, I did fine with this)–then for an hour and a half I laid under an x-ray machine watching tv as a radiologist timed how log it took for the food to make its way from stomach to small intestine. If this rate is much slower than normal GP is diagnosed.
I’m sorry you and your husband suffer so much. I think looking into GP would be a good idea, as I wonder if scar tissue and the damage to your body might have affected your autonomic nerve.
I notice you have a blog Iris–I need to make my way over and check it out. Thank you for your kind words…it is my readers and blogging friends that help make this journey much less lonely and much more fun!
DOM– You never have to worry about being rude my friend! wish there was an easy answer to your question about the trigger symptom. I hope what I share might help your friend. When you have GP, your stomach can’t tolerate whole grains, fruits, veggies or anything with fiber. If I go into a bit of denial and treat myself to a leaf of lettuce or a bite of meat…I find that usually within 24 hours or so my GP flares. Sometimes though I haven’t a clue why.
Usually when my GP’s been mild then suddenly flares by way of an attack, it starts with big time nausea and then a sharp (for me unbearable) pain in my stomach and directly behind it in my back. It sounds like your friends symptoms are quite similar. I hope he can have a work up (like I shared with Iris above) to test for conditions that mimic GP symptoms, including a stomach motility test for GP.
Both, IRIS and DOM–you or Dom your friend probably have to ask the doctor for stomach motility test, unfortunately, diagnosis of this condition can take a long time (familiar huh?) is doctor isn’t looking for GP. Since Autonomic Dysfunction is common with ME/CFS, FMS and I would imagine MCS as well…I hope that awareness that GP can accompany autonomic dysfunction and be tested for when people are experiencing severe stomach symptoms.
RENEE–What I go through is absolutely not worse than what you go through! Oh…the having to tell loved ones they can’t come to visit–I’m so glad you shared your experiences. Yes, we get too sick to have anyone around sometimes, even our dearest loved ones. What a great pain to have relationships with your children severed–indescribable! It is interesting to me how some personalities have a tougher time not taking our situations and the thorn it throws in our being with people…personally and how others can flow with it. You, my friend have gone through so much and with such grace. The pain of estrangement from those we love hurts more than the physical illness doesn’t it? Renee, those who got sick when their kids were adults, their kids seem to have a harder time understanding don’t they? When we get sick when they’re little they grow up seeing our illness and better understand.
TONI- what an awesome party thrower (hostess) it sounds like you are–(though you can’t do it anymore, our personalities don’t change…ie. being a great hostess). How absolutely disappointing to have been too sick to attend your grandbaby’s welcoming party that you put so much into planning–UGH! I’m with you, the once in awhile that we can have people over, its pot-luck and serve yourself. I also loved to give parties…what an adjustment to our social lives.
ZAR- Oh, the image of you sitting in the store parking lot without ever getting to the store…disappointment …and the exhaustion that I imagine followed for quite awhile from the exertion of getting ready and of driving. I can relate much to your “stuck” place on your walk…I too laid on the grass for 45 minutes once…a little strip of it down the street because my body stopped before I made it to where I set off too. What a scary feeling it was. I’m so glad you made it back to the tent!
Disappointment and u-turns-we all sure share them ..as we share adjusting and continuing to do whatever we can.
Thank you for questions and sharing and coming over and visiting with me!
Kerry – I almost fell over when I read your response! No one told my friend not to eat those items and that is predominantly what he eats! Yikes! I just called him and forwarded your email to him. Hopefully (he has no insurance) he can find a way to get help in getting the testing done or at least figure out what to eat. Especially since he has severe diabetes and has to eat when taking his insulin.
Thank you so much for taking the time to share all of this with me!
I am praying for a quick recovery for you! Sending you lots and lots of hugs!
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Dom–I am absolutely amazed that your friend has severe diabetes and hasn’t been tested for Gastroparesis, considering the severity of his stomach symptoms and the association of the two conditions.
A good gastroenterologist is essential. If the first dr. doesn’t look into GP, I hope he will keep on until he finds a doctor who will. Its important that they also test him for other conditions with similar symptoms.
Its tough not being able to eat the good for you fiber food–but there are GP diets that help get as much good nutrition in as possible–they differ depending on severity of the condition.
I’m glad if my experience can help your friend– let him know he can email me with any questions or concerns. Also, the organization G-Pact (on my sidebar) is a great resource. Hope you’re feeling as well as can be Dom. The title of your last blog post has me intrigued…going to rest my brain and come over and visit asap. Hugs right back my friend.
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Zar
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Just catching up on my blogs and was amazed to read this, to see just how many seem to suffer and how little understood it is. Also, I occasionally suffer attacks of ‘indigestion’ which leave me incapacitated and groaning and have required U turns. How interesting. And I also relate to the good feeling associated with a ‘well’ outing. I think in that we are blessed.
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