I'm sure the majority of people with chronic illness, whether invisible or not, have faced the confusion of how to best answer the "how are you" question on a regular basis. Whether you are at home, work, hospital, store, etc this question is all too familiar. I know that most people ask out of habit, as it's natural to say these three words when greeting someone. Most people are accustomed to replying with an "okay", "fine", "good", or some other simple response. I am guilty of answering in that fashion often, especially around strangers that I don't know. However, like many, I am not always speaking the absolute truth, just trying to be polite.
It's easy when the person that you are speaking to is not familiar with you or your health and it's not imperative for them to know the truth, then quickly saying "fine" and moving on is alright. But what if it's a family member, friend, medical professional, colleague, or someone else that knows you personally? How do you answer the question then, especially on days when you really don't feel fine or when being falsely positive can be a hindrance in your care or best interests?
Below are a few recent scenarios that have made answering the ordinary "how are you" complicated for me to answer.
As you can see the common question, "How are you?", can be complex to answer, with the normal "okay, fine, and good" answers carrying a variety of different meanings, sometimes accurate and sometimes just portraying what everyone, including me, wants to hear.
Once again, seems to be too often recently, I was awoken in the middle of the night with strong abdominal pain & intense nausea. The nausea was at extreme levels that made lying down or attempting to return to sleep impossible. Slowly, to avoid dizziness, I got up out of bed. Could I use the bathroom and reset my body to return to bed?
No, the pain & nausea were relentless and I surely didn't want to wake my husband. So off I paced slowly to the kitchen. I had already consumed all of my normal medications prior to bedtime, including my 3rd does of my current antiemetic (Tigan). Not knowing what else to do, I scrambled to find a zofran to see if it would actually help. I then progressed to the couch & picked up my gallon sized ziplock bag, still there from the previous day, just in case I returned to heaving/retching once again..
I tried to slip into a slumber there on the couch, but after 10 minutes or so of agonizing discomfort, I moved to the floor. I attempted to escape my pain and nausea with calm relaxing floor stretches for a few minutes and then returned to the couch, still nauseated and crouched in pain. I literally felt as if my abdomen was going to be ripped into shreds.
What the hell! What could be the cause of another night of painsomnia full of nausea?
My next action, beginning to seem as if I am in a recurring state of motion, was to return my heating pad to the setting of “HI” and replace it on my abdomen once again as I stretched out in my recliner with a bag by my side, just in case the nausea evolved to more retching or vomiting.
While everyone else (including my pets) peacefully slept as if nothing was wrong, I tried to breathe through the moments. Longing to find some relief, maybe an effective distraction, I tried to focus on what else I could try in the meantime. I mean who would want to sit by themself in the wee hours of the morning, in a dark quiet living room, with tears flooding their eyes as a result of the relentless nausea and unexpected gut wrenching pain?
The heating pad, having to be checked often to ensure that it was on, is questionable in its’ effectiveness. I could tell that it was helping some, but no longer feel the heat that it provides. My abdomen has apparently become so accustomed to it being a regular accessory recently, that I have to touch my skin with my bare hand just to make sure that it is in fact hot.
My next step, in an effort to reduce my symptoms, was to close my eyes and focus on my slow mindful breaths. There is no worrying, there is no panicking or anxiety , just slow breaths in and out to re-balance and allow my body to embrace and lessen the severity of my pain and nausea. What else can I do with my time? Is there anyway that I can be productive and use this time for something positive. Maybe check my email and delete some junk emails, sort some downloaded pictures, words with friends, twitter, read about the 8th grade and 10th grade math curriculum to better assist my kids, listen to some relaxing music from my playlist? Thankfully, my earbuds were right next to my recliner!
Slowly my nausea started decreasing, though at a snail’s pace, to more tolerable levels. Not great by any means, but the extreme level of heaving diminished to a more controllable level. Though I still felt extremely nauseated, I was no longer at the point of dry heaving. (It’s now 2:40 am and all of this disturbance began around 12:39 am).
But what about my abdomen? (I'm unsure if the current pain is radiating from my stomach or small intestines) The heating pad has steadily remained on it, I've verified that it's working by bare hand checks since the abdominal skin no longer seems able to distinguish he temperature on its’ own, apparently its become immune or accustomed to heat it provides. (This is likely why some people in the online support groups end up with burns from their heating pads. The spasmodic pain is so much, and heating pads turned to on high so often, that the skin cells apparently lose their sense of touch in some form or fashion.)
So here I sit. All by myself, with a phone in my hand, typing away, trying to make sense of how I can best find some rest and relief from awful painsomnia & recurrent everlasting nausea at now, 3:30 in the morning. Exhausting all of my coping strategies (a warm bath was taken prior to bed as this current flare has been going on for days now). My eyelids heavy but unable to remain closed for effective rest. Debating if I should break down and take a tramadol just to see if it can end the present pain, since nothing else appears to help. I am keen aware that I have it available for a reason, this exact reason, but medicines for pain or not ideal for me. I don't want to become dependent on more medications. Pain medicine, while it helps momentarily, often leads to more issues later.
So instead I will sit, hugging my heating pad, snuggling it tight against my bare abdomen under my t-shirt (yes my hands let me know that it's still producing heat) while slowly breathing in and out, postponing medication as long as possible. Praying that I can survive this painful wave all by myself, alluding any additional medications.
In case you haven't realized it, painsomnia and relentless nausea absolutely sucks - and during the morning hours when I am suppose to be sleeping - it's even more frustrating and tiring. My body just doesn't seem to comprehend how to break this cycle or flare, whatever you want to call it, this past week! I don't know what set this course in motion this time. Was it the antibiotic or ibuprofen for my tooth infection and extraction a little over a week ago, the barium study from a week ago, the small banana I tried on Monday, or the little bit of ice cream I consumed on Wednesday? A combination of any of the above or possibly even from no fault of my own? I don't know. I think that's what's so exasperating as I have no clue how to effectively avoid these all too common flares. And when they start, it takes a while (days or in this case a week so far) to alleviate the extreme symptoms. Yet, somehow I'm suppose to keep trying. Regardless, I fight to convince myself to be "brave" and strive as hard as I can to improve nutritional intake (by tube and/or mouth). But at what costs? These attempts most often provoke increased troubling symptoms, leaving me feeling stupid for allowing myself to continue falling into this recycling pit. What's the point of demanding my body to take in nutrition if it's only going to keep me miserably nauseated and in pain?
This week's pain has progressively gotten worse and harder to tolerate. My usual coping skills have been put to the tests, but my pain and relentless nausea continues anyway. Therefore, my plan for today is to simply resist any tube feeds or oral liquids in hopes of resetting my body. But first, I'm gonna try once again, with heating pad intact, to doze off in my recliner for a little bit, now that I'm not actually heaving anymore. I will, however, remain keeping a bag nearby just in case my nausea “sky rockets” once again.
Update: It's now 3:20 pm. No sleep was ever achieved. My house has been full of activity today as my husband, pets, and children scurry around. My stomach is still under the heating pad. I haven't been able to part with it due to the continuous cramping pain I'm still experiencing. The family has been to the grocery store to purchase items for their Labor Day celebration. My daughter made some deviled eggs and brownies, while my husband grilled some ribs for their dinner today. The smells and aromas of food and seasoning have my nausea escalating once again. I have kept true to my word, no tube feeds have been started yet, and the only thing that has entered my mouth has been my routine nausea medication. This is insane and painful, hidden from others outside of my immediate family, but it's my life and unfortunately, I can't change the situation. Instead, I will have to muster up the strength and patience to wade through these extreme symptoms, heating pad and all as I'm determined not to visit the ER unless my ileostomy output completely stalls or in the off chance that a fever begins. Thank goodness, I have IV fluids at home to help keep me hydrated.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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