Navigation

Illness narratives

Hi all, 

A late night thought: have you guys heard of illness narratives or written your own? Here’s a little description of them: 

When I was in school, we had patients come to our class to share their experience of illness. Because it is one thing to know the signs and symptoms of disease, but quite another to understand what the experience of illness is like, my teachers made sure to continue these visits because they wanted to make sure we never lost sight of the most important person in medicine: the patient.

After the last few months of this tumultuous struggle with my lungs, I have been trying to write my own illness narrative to make sense of all that I’ve experienced and pick up the pieces of what a bad bout of asthma shattered. I’ll take a stab at sharing my illness narrative here, but was wondering if others would consider sharing theirs too? A few questions: what does “illness” mean to you, what has chronic illness taken from you? What has chronic illness taught you? What has illness given you? Has your hopes/dreams for the future changed? 

35
147

Comments 35

  • LK

    Em,  What a grand idea!  Not only does it help those of us with a chronic illness put down in words answers to those questions but it also is a possible future source of help to others in our situations or others who may have family or friends who are or doctors and nurses who deal with these illnesses.

    Wow!  That article has so many good points and many of them we all have delved into here on these forums.  A few of them - 

    "Illness, especially illness that doesn’t go away, creates a profound disruption in a person’s life. Although we are aware that change happens continuously and no two days are completely alike, when we’re healthy we have expectations that our lives will continue tomorrow pretty much the way they do today. We get used to believing that our bodies will function the same from one day to the next and we’ll be able to accomplish what we’ve set out to do. But chronic illness destroys those expectations; ill bodies are no longer dependable or predictable and may even feel like an enemy. Many plans, both near-term and far, may need to be put on hold or abandoned altogether."

    "Additionally, when patients tell their story to others they help promote understanding of the lived reality of their illness. They connect with others who have the same illness and open up lines of communication that can provide emotional support."

    and my favorite - 

    "It is rare for a person with a chronic illness to have the opportunity to tell their story without the listener interrupting the narrative. Listeners often want to offer help by suggesting alternative treatments or specialists or recounting the experiences of others who had “the same thing.” What many healthy people don’t understand is that often the best way they can help is by listening to the ill person’s whole story without interruption.

    The offer of unsolicited help may often be a response to the listener’s discomfort or fear. Healthy listeners may cut the story short so they can offer the ill person a solution that they believe will lead to a happy ending. But it also results in a false narrative for the ill person. The listener may feel better, but the ill person is left feeling more isolated than before."

    Will take some thinking and editing to come up with the short version of all the things we all have written about here and in journals to ourselves but it sure is a worthy endeavor!  I would be glad to try to write one.  

    Thank you for suggesting it!  

  • K8sMom2002

    Em, I love this! Thank you for sharing! Like Lisa, I think those quotes are the ones that stick out for me, too!

    Another thing about sharing our stories — it's a chance to help move us through the stages of grief and figure out what parts of this story we can change and what parts we learn to accept. 

    I can't wait to read yours and everyone else's journeys! You guys inspire me and give me daily encouragement!

  • Shea

    Em, I think you found a really great gem here with the personal illness narritives. It sounds like a really great bridge to help connect us with others after the isolating experiences illness can bring. 

    Lisa, those are great highlights from the article. I really feel they put into words what so many of us go through on a day to day basis. 

    I think it brings out an important part of patient care too– change the way doctors actually speak with us (not to us, or at us, or over us, but WITH us regarding our treatment). A little excerpt:

    Kleinman states, when the patient’s experience is included in the conversation, “Practitioner becomes a moral witness, neither a judge nor a manipulator. Patient becomes an active colleague, not a passive recipient. Both learn and change from the experience.”

    Id like more doctors to do this, and I really appreciate when I come across those that do. 

  • LK

    A though/question just occurred to me in regards to the part about how doctors should listen more to how illness affects patients.  Not sure this will make any sense so please bear with me.  

    Since it takes emotional energy to listen to all our troubles and challenges, is it asking too much of doctors to ask them to be so empathetic?  I am thinking that with the large number of a patients that most doctors see each day that they would be emotionally drained by lunchtime if they were to not be slightly emotionally detached with patients.  They have to keep at least a slightly clinical detachment in order to keep a good perspective.  Same as doctors are not generally allowed to do surgery on close relatives because they are too emotionally attached and may not make the tough decisions in a pinch.  Does that make any sense?  Don't get me wrong, I love a doctor who listens and tries to understand where I am coming from.  My PCP is such a doctor and my dad, when he was a practicing anesthesiologist was such a doctor.  

    Perhaps I am not understanding what the article is saying.  Just some stray thoughts!  

  • Wheezy Me

    It's just my lungs; not me.

    They are slightly wheezy and tight.

    Well, what I believed to be minor

    Soon proved I wasn't right,

     

    For these lungs take me everywhere, every day

    When they play, I can enjoy my game

    They are my voice when I sing and laugh

    They closely touch the heart of life

     

    Now it is not just "them", as they are mine.

    And I needed this journey to find

    How I'd much rather enjoy the road

    Than mourn what was left behind

     

    And when I reach the top and look around

    At that unforgettable, breath-taking view,

    My heart will fill with gratitude and pride

    As my lungs say, "I made it through!"

  • LK

    Oh, Wheezy Me!!  What you wrote is awesome!!  You have quite a talent!  Very well said!

  • Wheezy Me
    LK posted:

    A though/question just occurred to me in regards to the part about how doctors should listen more to how illness affects patients.  Not sure this will make any sense so please bear with me.  

    Since it takes emotional energy to listen to all our troubles and challenges, is it asking too much of doctors to ask them to be so empathetic?  I am thinking that with the large number of a patients that most doctors see each day that they would be emotionally drained by lunchtime if they were to not be slightly emotionally detached with patients.  They have to keep at least a slightly clinical detachment in order to keep a good perspective.  Same as doctors are not generally allowed to do surgery on close relatives because they are too emotionally attached and may not make the tough decisions in a pinch.  Does that make any sense?  Don't get me wrong, I love a doctor who listens and tries to understand where I am coming from.  My PCP is such a doctor and my dad, when he was a practicing anesthesiologist was such a doctor.  

    Perhaps I am not understanding what the article is saying.  Just some stray thoughts!  

    I believe doctors can learn a lot from the stories of their patients, and sometimes, understanding the patient's side better can have a direct impact on their treatment.

    In the same time, you're totally right. They have many patients and limited time and energy to help them all. They are human like anyone else, and each one has his or her own way of helping as much as they can without getting burned out.

    I guess they are able to handle small parts of the stories of most patients, and fuller life stories of some patients (e.g if they know them for a long time or if a special bond was created).

  • Emelina

    Wheezy me, beautiful! I love it! 

    Lisa, you bring up an excellent point. It’s a personal decision that many docs make about how close to get to their patients. I think one of the points is to teach young physicians that it is ok to ask and bear witness to a patient’s pain and their story. Some young docs think they shouldn’t ask … it’s not germaine (instead they should focus on symptoms, side effects, drugs … not hopes, fears, experiences). One of the biggest challenges that I struggled with is intense personal pain and disappointment when I couldn’t offer a cure. the revelation for me was not all ills can be cured, but the caregiver can still heal by being present and forming that therapeutic alliance. Sometimes I think there is more power in just sitting and listening than any pill or IV in the pharmacy. 

  • Emelina

    What is illness, the state of disease or abnormal function? What is sickness, the state of illness with a role defined by society? What is disease, an abnormal physiological response to normal stimuli? What is asthma? A chronic inflammatory illness characterized by intermittent bronchospasm, mucus production and wheeze. Before 2019, I could tell you the book answers to the questions above, but had never truly experienced the life changing ordeal of a serious chronic illness. I knew the definitions but didn’t know what it was like to live it.

    My descent from wellness to illness took about 6 months. I had mild asthma through childhood, college and my early 30s, but if it were a lion, it usually only whimpered a few times. I could beat the symptoms down with albuterol and occasional Flovent and only once previously required prednisone. This flare was different. It all started with a cold; then another cold, and another. Every month it was a new cold. I started walking up the treatment step ladder. First Flovent, then higher dose Flovent, then low dose advair, then medium, then high. Eventually I’d gone to urgent care and my pcp enough times, I think they just threw whatever they could at me. “Here, take this and just go away, feel better for heavens sake” was what it felt like. 

    By February, asthma didn’t whimper or make gentle cat calls, it roared. I had oxygen tubing in my office and a tank next to my desk so I could nebulize while working. Pretty soon I was coughing to the point of incontinence and throwing up in the bathroom from uncontrolled coughing fits. When I landed in the hospital for the first time, I had no idea how far I’d fallen. I looked at my vitals and the frowns on the doctors faces and thought, those vitals can’t be mine (hr 155) even as they attached ecg leads to my chest, started iv fluids, handed me a nebulizer and said you can’t go home like this. 

    By March and April, I’d been mauled by asthma. It was ugly. I ended up in the ED and urgent care several times. My arms became covered in bruises from IVs and blood draws. I couldn’t work anymore, but what concerned me more was I couldn’t function anymore. I was so short of breath getting dressed and brushing my teeth took all of my effort. I lost my appetite and became so sick I lost weight and couldn’t drink enough to stay hydrated. I couldn’t stand up long enough to cook a simple meal. I tried driving my kids to school one day and had to pull over from the coughing fits and dry heaves. I returned home crestfallen and crawled into my bed to cry. Sometimes I would try falling asleep to escape, but even then I was tortured either by prednisone insomnia or would fall asleep only to awaken gasping. 

    During these hard days I learned sickness, illness and disease are like vines that touch every aspect of your life. When seriously ill, life stops and in the throes of it, the future disappears into a frightening cloud of uncertainty. You don’t know what’s wrong with your body, but every cell screams for relief. Your mind wanders; can I care for my kids, can I support my kids and in the darkest days you wonder, will I survive this? 

    I learned illness and sickness and disease strips you of confidence and leaves you vulnerable. Strangely, for the first time I felt jealous of healthy people. As I laid in the CT scanner, heavy lead over my legs and arms above my head and slid into the machine, I looked over at the scanner room and thought how did this happen? I am supposed to stand outside in the radiation shielded room, not here on the bed. I am well, I care for the sick. “Take a deep breath, now blow it all out and hold.” My thoughts were jarred by the mechanical voice. That’s right, I wasn’t well anymore. I was sick and I felt alone. 

    I felt lost. As my health worsened, the numbers of pills and inhalers grew, as did the side effects. Many nights and days I cried alone or on my husband’s shoulder. I cried in pain when a severe flare left me with chest heaviness and a chest pressure that felt like the classic elephant; only my elephant didn’t sit still, he trampled my chest with each breath. I also cried for the future; I didn’t know if this would become my forever, I didn’t know what the specialists could offer me, I didn’t know how much of my life and independence asthma could be coaxed to give back to me. 

    In May, things began to turn. I saw specialists and found a combination of medications that calmed the angry pacing and clawing of the asthma lion. Where others had shaken the steroids up and down and tapered, they said no to aggressive change. Let’s give you a rest and leave your dose alone. I was relieved. Where others had stopped dosing medications due to comfort, the specialists said, let’s go higher. Where others had said I don’t know what’s wrong or your tests don’t reveal anything, my new team pushed the computer monitor to face me and said, let me explain. They added more drugs, but this time I could finally breathe.

    I am better now; I can sleep through the night and my nebulizer mostly sits quietly by my bed. The peak flows have steadied and I look forward to the future again. I am still weaker than ever before, but each day I grow stronger and more confident. Asthma will never go away, but now I am more attune to it. I watch peak flows and pace myself. I know now the signs to watch for. Through medicines, support of family and friends, I have pulled back and recovered the independence and dreams I thought I lost. Battling Asthma helped me see incredible kindness and grace in the people around me. It also bestowed a new perspective on my life and priorities. I rediscovered my faith and my family. When you rest in a gown in a hospital room, with an IV in your arm, and struggle just to breathe; or sit in a waiting room 350 miles from home hoping for answers, it forces a re-evaluation of what you want from life and what you’ve accomplished thus far. I know the battle isn’t done, but I thank God for it. It taught me the meaning of kindness, mercy, resilience and humility. I have been humbled by the outpouring of love and support shown to me while struggling and hope I can carry this forward and help others with the same compassion and care.

  • LK

    My compliments Em on a beautiful, thought provoking look at how asthma has affected you and your life.   Well said!!  

    You have set a high bar for the rest of us but we are up to the challenge!  

  • Shea

    Some doctors act like they KNOW everything already, and dont want to give you time to speak, or hear your opinion, or go over a new study, or truly discuss risks and benefits of anything, or talk about how a medication is affecting your life or other organs.

    They think THEY can answer the risk/ benefit question FOR you, so they do without even asking or telling you why.

    They only talk meds instead of finding out life factors and avoidance measures and masks and other things. Sometimes their meds just enable the causative factor to continue to wreak havok on one's life.

    So many of us DO have a side effect and we are called weird for it because we arent in the majority INSTEAD of acknowledging that medications can have multiple negative effects and thise negative effects can make a certain medication inappropriate for us (not US inappropriate for the medication and US as some kinda weirdo).

    Harms that are caused are dismissed as something else wrong with us, and we are just supposed to trust the next med change and try not to be difficult (like it is something we tried to do). And that is if we are believed!

    No advice or tools or education are given in how to actually see if something is working, and what to look out for that could happen if it isnt. I used to trust they would at least know, but they apparently only know if I complain about sonething– which is hard to do because I have to call and speak through a nurse and maybe get a call back like passing notes in a classroom to have a discussion.

    They think we are all better if emotions are cut out of the picture altogether. I think emotions are guiding lights that deserve to be included in the conversation of disease and healing– not separated to another doctor where it is "anxiety" to be treated with another pill as a separate issue. It should actually be addressed by the treating doctor and his med and the health issue that brought the anxiety.

    For example, I just had AFib one night out of the blue and had to call 911 and be hospitalized. I was nervous about that happening again. They said it could. My followup was 2 weeks away. I felt the anxiety first and had bad dream. I had to think about where this anxiety came from by looking at what happened in my dream and how this new diagnosis affects my life. It was justifiable anxiety related to this particular issue and it was tgere for a reason– to help me find solutions and ACT because I needed infirnation and the doctors information left huge gaps. No xanax is not the answer– I dont want another med altering my heart rate. I want to know why the Afib happened to me. I want to know what tools I can use like learning how to track my pulse over time, because I read bp cuffs do not track it accurately with Afib. I want to know when to call 911 vs my primary care after hour number vs just doing sonething like breathing exercises. I want to know if this can happen when I am asleep– will it wake me up? What to eat and drink and what NOT to eat and drink if it happens again tgat could make it better or worse.

    But I bet you they would mention none of those things to me at my followup appointnent (which is today). I bet itll be like pulling teeth to ask one question, and they will try and rush outta there with just Some predetermined script left in my hand, with another med I dont trust and know nothing about, and if I mention being anxious it will be considered another problem with me and an rx of xanax and about how to only take it once the anxiety has built up so high that I start to panic. I wouldnt panic if their answer wasnt that I am a weirdo whos emotions dont matter and isnt educated enough to have my questions taken seriously and shouldnt try to do my own research online because "they are the doctor" but tgey arent actually there to listen because they just dont have time for that, can I please stop inconveniencing them and the otger patients and hurry up already. Call the pharmacy if you think your heart med may be affected by a recent recall because it has cancer causing substances in it. 

    Sorry– I had to vent. I really don't like doctors. 

     

  • K8sMom2002

    Shea, sending good your way that your doctor will anticipate your needs and help you walk through your own decision path. The "average" is a collective measure — and it's not always the best way to describe someone or the most accurate description of a group of people.

    But it's a handy way to measure, and a shortcut that's tempting to take. Hoping that your doc will understand that shortcuts don't always work.

    Em and Breatheeasy and Lisa, can I say that I love the thoughts you've shared? They are so valid and resonate deeply with me! And all are beautifully written!

  • Wheezy Me

    Em, wonderfully written as always! I could sense your sadness and worries from the lines. Yep, chronic disease sucks. All of them. And it is strange when you know the system from the other side. I'm glad, however, that the specialists are taking a good care of you and help you better than the ones before.

     

    Shea, I see your frustration too (and venting is fine, that's one of the reasons this forum exists). Doctors should care and listen, I agree. Maybe yours really were not OK, and didn't do their best; however, even the best ones have their limitations. My pulmo is amazing, he listens and has a lot of patience, he considered what was important for me personally when making treatment decisions. But I know that when many other people wait outside, he just can't afford to listen to lengthy stories from each and every one of them. It won't be fair for those in the bottom of the list.

    And it's your right to decide to put lifestyle measures first of all. Not everyone is the same. For example, elderly patients who are dependent on others or limited in their way of adjusting their surroundings, adding a relatively innocent med can be more practical- and sometimes lifesaving- than relying on their caregivers to eliminate all triggers and put their mask on. Doctors know they can control the meds they recommend much better than the patient's way of life. Other patients may prefer trying a new medication in order to enable them live more freely- and that is their right, too.

    The part with the anxiety medication sounded unpleasant. I'm sorry. I hope you see more empathy from now on.

  • Shea

    Thank you all for the messages. Doctors need to be on time to appointments, I get it, but sometimes new diagnoses or cerrtain events need to have more time– and they arent allocating enough or being fair to rush justified issues/anxieties– and a written plan can be helpful to actually give to the patient, and stay on topic but not miss things either. I take notes but I like an official-looking action plan too and hard copies to show other specialists too. I like my anxieties to be addressed.

    I just got back from my cardiologist appointment. It was much better than my followup with my primary care doctor last week, for many reasons. My anxiety was listened to and addressed (not by a xanax rx) but by actually incorporating it into the treatment plan for the Afib. I will get a holter that measures me for 24 hours to start and then possibly for 7 days. It has to get insurance approval but no mention of me going over cost to my insurance– like my primary care seemed concerned about. Then, based on if my Afib is showing itself during the 24 hours, I could get an internal thingy ma bob that could shock me back into rhthym permanently. And we have an idea that this could be related to my heart attack back in 2012 because my Ejection Fraction is low enough from that, and that can increase chances of afib, so  the meds I am on now can help raise the EF higher (toward normal) and I have a retest for that in 3 months to see if it does. So that whole thing is a good plan, I feel. And I can call when Im feeling bad or HR is higher than 120 or other symptoms in the interim until I get my holter: them or my primary care after hour number or 911 if it is bad like last time also I learned tge symptoms of stroke and nutrition ideas from their TV in the waiting room. My only down part is I wish I had the holter now– they couldve set this process in motion at the hospital discharge.  My heart rate was not normal when I took my pulse this afternoon… Fast, slow, weak, strong all over kinda stuff, and when I first woke up it was at 115, but they did an EKG there at it was in normal rhythm then — so that is good news but not that comforting because it can change. Overall I was happy with how we went over results step by step and with the plan. It was the nurse practitioner I met with– she is very kind and thorough I like her. And that is what I want in an appointment– a dynamic discussion, which is what we had. I am hoping that tomorrows immunology appointment goes similarly. Last time I was there they didnt have my lab results, they were rushed, I barely got a question in and felt dismissed and like I got nothing from the appointment. So Im hoping that was just a bad day because I need to go over a plan of action and have specific questions I need to be addressed AND I have hard copies of my lab results this time. 

  • Wheezy Me

    Hi Shea, good to hear that your cardio appointment went well and that he took all those aspects seriously. I hope your insurance will allow that holter quickly!

    Usually AFib is not a reason to put an internal shocker though. Sometimes they put a pacemaker if there are times of too slow HR as well. Why did he mention it? Was your AFib unordinary, or maybe because of that heart attack?

    Good luck with the immunologist!

  • Shea

    I just have to wear an external hoster to see what type of Afib it is– there are different types some more chronic than others depending the type but, yes if we cant get the ejection fraction higher (iits low because of my prior heart attack from the churg-strauss syndrone) with medications then they cant really resolve the problem causing it AND if it keeps happening it is just dangerous because it can cause blood to pool and clot and give a person a stroke, so an internal device can keep track of that –even when one is sleeping– and shick it back into normal safe rhythm.  I felt the external holster should have been given upon discharge from the hospital. When I check my pulse, it seems to be abnormally beating a lot, and my resting heart rate can be very high then low then high. At least I am on the right meds now– prior to the emergency Afib incident last week I was on a heart med that is actually worse for those with Afib. I also have been needing my inhalers less since the hospitalization bc they gave me a big pred boost, so that seems to be helping. And the new heart med gets my heart rate more normal after I take it too and I can take extra if it gets real high and call them. I am starting another med to take at night that should help keep it at a normal range too. So lots of meds– not happy about it but more unhappy that I ever even had Afib to begin with because it was scary, my heart was beating so wild and my fingers were tingling and I was dizzy– not good feeling at all– so I just want to be safe because I want to live a long life– even if that means meds, surgeries, and devices. I have tried the diet meditation exercise stuff and alone its not enough to keep me well.

  • Shea

    Thanks Melissa. It is tough I am still processing everything they said. I am sure I will go through phases as I do.

    Im struggling because I know above I said I dont like doctors– and I really meant I dont like it when doctors do not thoroughly discuss a treatment plan and maje ne feel like I have a choice in it.

    And also that I dont like having to take medications but I also I dont like illness! And I want my goal to be a path toward health– which really means no surgeries or nedications that entrap me just as much as it means no illness that entraps me. I feel trapped.

    I know it isnt good to have an abnormal heartbeat but I really never want a device inside me that shocks me. I dont like that solution. I know I dont have to make that choice now but I am aware on the future I might. 

    My heart has shown some improvement without medications and they never mention that. I didnt have afib befire they started ne on this other heart medication that supposedly makes afib worse and was the wrong med for me to be on as it was more fir blickages which i told them i dont have, I told tgem about the churg-strauss, I had all mt records– i feel that was a mistake on their part. But they did the heart cath and now they know. I just dont trust them or their meds but I was glad to have doctors when the Afib happened to get ne back to normal. And it could be other causes besides the med they had ne on, and so now I don't want to take anything but i feel i have to. I will try to trust tests and machines and see what the next few noninvasive things show and hope that now I am on the right medicine for the right thing. 

  • Melissa G

    When you get a surprise diagnosis it is like getting a slap in the face. So much to take in and hard to ask questions when your mind can't wrap around what is being said. 

    We have been through that several times with Bekah. And for some reason when it is a cardiac issue, it is even more scary and overwhelming. 

    We are here for anything you need Shea. 

  • Shea

    Thanks, Melissa. You have been through so much with Bekah's illness and you handle it so well, I feel a warm, motherly, normalizing spin on each thing that get thrown at you all– it is really a good way to handle things, and it is inspiring. You are right with cardiac issues– they seem so much scarier! Thanks for being here for me!

  • Melissa G

    Shea, anytime. 

    I have tried very hard to teach Bekah that any diagnosis that he may receive doesn't change who she is. 

  • Wheezy Me
    Melissa G posted:

    Shea, anytime. 

    I have tried very hard to teach Bekah that any diagnosis that she may receive doesn't change who she is. 

    You are so right, Melissa!

    A diagnosis doesn't change our essence. However, it can change our lives forever, depending on its requirements.

  • Breatheeasy
    Emelina posted:

    Hi all, t

    A late night thought: have you guys heard of illness narratives or written your own? Here’s a little description of them: ,

    When I was in school, we had patients come to our class to share their experience of illness. Because it is one thing to know the signs and symptoms of disease, but quite another to understand what the experience of illness is like, my teachers made sure to continue these visits because they wanted to make sure we never lost sight of the most important person in medicine: the patient.

    After the last few months of this tumultuous struggle with my lungs, I have been trying to write my own illness narrative to make sense of all that I’ve experienced and pick up the pieces of what a bad bout of asthma shattered. I’ll take a stab at sharing my illness narrative here, but was wondering if others would consider sharing theirs too? A few questions: what does “illness” mean to you, what has chronic illness taken from you? What has chronic illness taught you? What has illness given you? Has your hopes/dreams for the fu ture changed? 

    illness- I don’t know. It’s something but I don’t really understand it. Esp as I don’t understand how and why this started and became my new normal. I have a lot of food allergies develop all of a sudden along with chronic severe asthma so I don’t understand why it happened even though  I studied immunology as a minor for a short time in school. I had a lot of control on my life. I did neglect my nutrition last year. I don’t understand if it’s the food I had. I later found out I was allergic to it. I am on a limited diet now. Have been fir the past 6 months. It makes me feel weak but all the docs say I am doing fine. I need to get an endoscopy done to rule somethings out. I need to go get it done when I am feeling brave. 

    It took a lot of things away from me.  But it taught me that there are other priorities in life. 

    It makes me more disciplined and assertive. I did not have that before.

    I dream as I can still dream of being more active in the future. I am struggling with what is the future now. But I am doing everything I can to keep myself busy everyday. And I plan on adding more things to my schedule as time goes by.

  • Shea

    I agree that my asthma and allergies have helped me become more disciplined and assertive too. But also– it gets tiring. The fatigue is one of the hardest parts for me. I can just barely remember what it feels like to be healthy and energetic– I was trying to meditate on that the other night and on my younger self and although I have never been completely healthy (always had some allergies and digestive stuff)– I have never been this ill this long, and anyways during my meditation I had the briefest memory of how it felt to feel good and I just started to tear up. Even now when my asthma is pretty good the pains and tension I feel in my body and the constant fatigue… Oof.. It is tough. Especially when I don't feel there is any end in sight. This is just my new normal. I feel old. And I am only 34 but I empathize more with older people and totally distanced from other people my age. And I told Tommy I am planning on living until I am 100 even if I have to be half robot. So… I am going to get better and I am going to live long. And I do think the things I do now matter and are helping me. And that I am on the right path. Progress is slow but it is progress. 

  • Breatheeasy
    Melissa G posted:

    Breatheeasy, is there something about an endoscopy that scares you?

    Yeah – scared I’ll have an attack as the first real attack I had was on the table during an emergency c-section. Right after the epidural was administered. The second time was when I had to get my wisdom teeth extracted when they gave me Novocaine. So I don’t know if I am allergic to anaesthesia or something. So I gotta discuss it with someone. My pulmo refuses to give me anything for the procedure. Albuterol doesn’t work for me otherwise I’d do the procedure. 

    I also want to feel better at least a lil better before I go.

     

     

     

     

  • Melissa G

    Oh my, that would scare me too. You can make an appt with an anesthesiologist and that way you can share your history and concerns. 

  • Breatheeasy
    Shea posted:

    I agree that my asthma and allergies have helped me become more disciplined and assertive too. But also– it gets tiring. The fatigue is one of the hardest parts for me. I can just barely remember what it feels like to be healthy and energetic– I was trying to meditate on that the other night and on my younger self and although I have never been completely healthy (always had some allergies and digestive stuff)– I have never been this ill this long, and anyways during my meditation I had the briefest memory of how it felt to feel good and I just started to tear up. Even now when my asthma is pretty good the pains and tension I feel in my body and the constant fatigue… Oof.. It is tough. Especially when I don't feel there is any end in sight. This is just my new normal. I feel old. And I am only 34 but I empathize more with older people and totally distanced from other people my age. And I told Tommy I am planning on living until I am 100 even if I have to be half robot. So… I am going to get better and I am going to live long. And I do think the things I do now matter and are helping me. And that I am on the right path. Progress is slow but it is progress. 

    I have fasticulations and they make me feel awful. Wake me up at night. I don’t like taking too many pills. But I guess it’s something I have to do and get used to. It’s hard when people expect you to act your age when you’re exhausted. I am very exhausted right now from travelling and where I am at right now it’s 109 degress.  I hope it’s just the heat that’s making me feel so tired. 

  • Shea

    Breatheasy, you totally hit it on the head with "It’s hard when people expect you to act your age when you’re exhausted". I definitely get that! I just want people to know yes I am young in age but no I am not young in body or spirit– dont expect those strengrhs in me right here and now– I have had to take on being ill and facing death way too regularly to be young in spirit. But I am wise beyond my years and I am caring and smart too, so hopefull that will compensate. 

    The heat makes me more tired too. This week the "feels like" temperatures have been over 100 here and humid. Ive been doing my walks near sunset and staying in the A/C the other parts of the day. 

    I didnt know what fasticulations were but just looked it up briefly. It sounds like that might get worse in heat too. And that really stinks that its keeping you up– that doesn't help with exhaustion! 

    I am up late. Hopefully I will fall asleep soon. 

     

  • K8sMom2002

    Hugs! Fatigue and other people's expectations can certainly weigh us down. Someone this weekend said something that was so wise that I want to remember it:

    Some things aren't necessarily WRONG. They're just not NECESSARY.

    I loved that. It means that we are all individuals. The things that are right for other people may not be necessary for us. And the flip side — just because something isn't necessary for someone else, it could still be necessary and critical for us.

    We are human. Unique. Individual. It takes us time to tune in to what is right for us and for our bodies. Hopefully, more of our friends, family and medical teams will learn to use our own expertise in what is right for us.

  • K8sMom2002
    Breatheasy posted:

    Yeah – scared I’ll have an attack as the first real attack I had was on the table during an emergency c-section.

    on Melissa's advice about speaking with the anesthesiologist who will be administering the anesthesia or the nursing staff that is arranging the procedure. Is it in a same-day surgery or ambulatory care center? Or will it be at your doctor's office?

    If you're doing an in-office procedure, can you forward your pulmo and the doctor doing the endoscopy your post-surgical or post-procedure notes from the last two reactions? You can get those from the records department from the hospital or center that did those procedures.

  • Breatheeasy
    K8sMom2002 posted:
    Breatheasy posted:

    Yeah – scared I’ll have an attack as the first real attack I had was on the table during an emergency c-section.

    on Melissa's advice about speaking with the anesthesiologist who will be administering the anesthesia or the nursing staff that is arranging the procedure. Is it in a same-day surgery or ambulatory care center? Or will it be at your doctor's office?

    If you're doing an in-office procedure, can you forward your pulmo and the doctor doing the endoscopy your post-surgical or post-procedure notes from the last two reactions? You can get those from the records department from the hospital or center that did those procedures.

    Both the pulmo and the gastroenterologist work at the same hospital so both of them are aware of my isues and will work together on getting the things that I need for the procedure. 

    Yes it’s an in office procedure. Well my pulmo kinda ignores the fact that I’m mildly allergic to a lot of things. I asked him if I need to go on steroids before the procedure – he said no. Well I guess I can always get a shot when necessary. He asked me to pre-treat with albuterol but that doesn’t work for me. That’s the next thing I gotta discuss with him.