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I’m gasping for air!

My name is George Ngigi from Nairobi, Kenya. I’m now retired as a teacher. First of all, it would be unfair for me not to acknowledge that I do appreciate this rare opportunity you have given me to walk you through my harrowing experience as a chronic illness sufferer. Similarly, and more importantly, it would be selfish of me not to share that experience, however unnerving it might be because there are people out there who may may be going through a similar ‘ritual’ and need somebody who can give them an assurance that they are not alone in it.

I don’t take it for granted. It might feel hard to open up, but volunteering to say something in good faith about oneself is in itself, a good bold step that comes in handy to accept one’s situation and that of others too.

Now to my story. In my layman’s thinking, I suspect my present-day illness can be traced to many years back when I could have stomach rumblings which had basically nothing to do with hunger. I also felt pain in the stomach after each time I swallowed food. I guess that the pain was emanating from the spot in the stomach where the food was landing. It was not an everyday thing or life experience though. The pain would come and go, meaning that it never lasted long enough to be a matter of clinical concern. During such periods however,  I would have to suffer heartburn accompanied by stomach upsets which I got treated with over-the-counter drugs.

It was a matter of one episode opening out into another. After the heartburn and stomach pains were over, then came the psychological problems. I went through a period of anxiety or if you like, depression. It was a  time I had lost the support I was receiving from the one sponsoring me for my education.

My poor  parents could hardly afford to raise fees for my high school and do the same for my younger siblings. I was left confused and helpless, not knowing what to do next. I was in a dilemma and as fate would have it, I dropped out of school. I was 16 years old, then.

As young as I was, I joined the labor market doing all sorts of odd jobs you can imagine of to survive.  My struggles put me in constant worries. I suffered sleepless nights, had headaches and unusual tiredness. Life was difficult and becoming meaningless by the day. I had to see a psychiatrist who diagnosed me with anxiety. For the next so many months, I spent I spent taking antidepressants, I had very little time and very little to do because the drugs (valium and others) would induce drowsiness that made it impossible for me to be active as before. I needed more time to rest and with the counselling support I got from the healthcare givers, I got better.             

Fast forward in 1997, what I went through had never happened before to me. For as long as I live, I will never forget the turns and twists that my health was subjected to, that changed my life forever. For worse, not for better. 

It all started as if it was just another issue to be worried about. One evening, I suddenly realized in the middle of my eating that I was having trouble with swallowing which brought about a dramatic stop to what I was doing. It was the very first time to experience such a thing.                       

GASPING FOR AIR

Unbeknownst to me, it marked the beginning of a new and long medical journey. I did not think much about it until the problem became a recurring illness. I reckon at one point, I almost choked to death. I was eating normally but this time round the problem struck with a different manifestation. I thought that was my day.  As I  swallowed, the food got stuck in the throat, left me gasping for air until quite luckily, I managed to mysteriously clear down the food out of the way of the windpipe. I just realized it was a problem so real to ignore.

I went to the hospital and was given some drugs which did not help much. It required more investigations to get to the root of the problem. Meanwhile, for fear of choking, I took the precaution of taking baby steps whenever I was swallowing. I resigned to consuming fluids and avoided all solid foods. But the resolve did not help matters either. While at it the problem of swallowing degenerated into one of a very serious nature. I could no longer swallow any more!     

For the next one week or so, I was literally living like someone who was fasting. One would have been forgiven for thinking that I was under compulsory isolation because I did not move out of my house to meet with people. Worst of all, I was unable to even drink water. I got dehydrated and lost weight as well.

From the other side of the world, beyond my immediate environment, came all manner of versions of stories about me. Behind my back, people would talk of anything they knew about myself and even what they were not sure of about the state of my health.

IS IT CANCER? IS IT HIV/AIDS?

Since the problem of swallowing with difficulty was a strange illness to many in this part of the world, speculations were rife that I had been bewitched. Some thought it was a curse, for being a non-smoker that I am, I should not have suffered ‘cancer’. Yet others were so sure that I was a victim of HIV/AIDS. Oh, my goodness the world is crazy! I myself had also my personal fears. Just like those who thought I had cancer, I  too shared a similar thought with them – but in silence.

The only difference between them and me was their cancer disease was on their lips because they could not hide it. Mine was hidden somewhere in my head.   I could not rule out that possibility the way I could with HIV/AIDS case. It was an infectious rumour that shook me to the core. Losing my life to cancer would have been the worst nightmare to my loved ones and the mere thought of it gave me goosebumps. Cancer was and is still a dreaded disease that kills in silence, perhaps just like Covid-19 is a world scare today.

Although I had an underlying condition, I went to the hospital complaining of difficulty in swallowing. I was admitted for about three weeks and underwent tests for throat and stomach infections (Barium swallow test and Endoscopy). I spent a day or two of a tense moment as I lay in my hospital bed waiting for the tests results. ‘Could it be cancer? Could it be any other terrifying disease?’ I kept asking myself.

Fortunately, claims by the rumor mongers were never to see the light of  day. Both tests did not show any symptoms of cancer nor HIV/AIDS. I received treatment for ulcers and heartburn and other gastro infections.

GASTROINTENSTINAL REFLUX DISEASE (GERD)

I later came to learn that what I had was known as Gastrointestinal Reflux Disease (GERD) . It is an extremely uncomfortable experience having to deal with acid from the stomach climbing up through the esophagus to choke you on its arrival in the throat, which happens mostly at night when someone is asleep. It feels like you are dying because you actually have to clear the throat to be  able to breathe. The condition is managed by use of antacids and antibiotics.

But still, the problem is far from over. I am told while I am asleep facing up, there is a funny sound I make like of someone in trouble with breathing. A stomach pain ensues if I apply physical effort like lifting heavy weights, or indeed working in the farm which is a health risk. This condition renders me unproductive and inactive in many ways.

The surprising thing though is that I don’t feel any pain at all in the throat or while swallowing, other than the feeling  of stiffness around it. Yet for any food to pass down through it to the stomach, it has to be in a way forced.

Pain in the stomach suggest all is not well with me and swallowing with difficulty comes with its own bag of other challenges. You can imagine that I can only  take drugs by having to chew it or like in the case of a capsule emptying its contents to be able to swallow it as prescribed by the caregiver.

FINANCIAL BURDEN

I have had to live with these problems for more than two decades. I could not in my wildest imagination think that my life would end up like this. I was forced to take an early retirement due to health issues in 2017. That was well before my time to hang up my gloves as a teacher was due. And one of the reasons why I had to quit, had to do with my feeding problem. I could not work on an empty stomach.

Even though I am not supposed to be doing manual tasks, I sometimes go against the grain to make ends meet because I simply can’t afford to hire a farmhand, which takes a toll on my health. To survive on a pensioner’s budget is not easy, and trying to earn some extra coins is not easy, either. I have to wear many hats to look for and get alternative sources of income, however little. The fact that I have three kids to raise and school fees to pay is an additional burden on my small monthly income.   The medications that I can not do without are often highly priced and may not  always be available through government-run hospital pharmacies which compels me to dig deep into my finances leaving me with empty pockets.               

ALTERNATIVE FOODS

To make do with my health requirements, I am constantly on the lookout for alternative foods which I must say are not easy to come by, in terms of buying. I just can not eat whatever comes my way. I am selective in the food I  consume.

Due to my stomach ulcers and GERD condition, I am particularly required to keep off all acid producing and stomach irritating foods. There is a whole list of foods to avoid. Talk of sour milk, kales, fruits with a bitter taste, beans, and spices generally, to mention but a feel.          

SOCIAL AVOIDANCE

Oftentimes, I find myself avoiding people lest I be invited to a meal with them. You see, it is such a time you become exposed. How many people would understand my plight of illness if I refuse an act of generosity like an offer for food? Yet I am not sure if it is safe for me to swallow anything.

Nobody worth their salt would like their health condition to be a topic of discussion or to be broadcast to all and sundry. That is what I try to prevent by scaling down my interactions with people and thus affecting my social life, negatively.          

I wish to say that the beauty of life is that as much as there are people without any concern for others, there are many more people in this world who relate well with the suffering of others as to be willing to help where possible to make their lives better.     

George Ngigi

Thank you!

Clinical Trial Hero would like to thank George for taking the time to share his story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

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How I manage my chronic pain.

In 2016, a teenaged woman in a rush to get to a party, accelerated into the back of my car. Because I take good care of myself – I seemed fine. However, to be on the safe side (after reporting the collision to the police and my insurance company), I went for a check up at a medical clinic, where the physician recommended massage and physical therapy treatment.

The massage therapist was excellent, but the physiotherapist had no experience in treating injuries sustained in motor vehicle collisions nor was he trauma informed. From assessments by other health practitioners, my neck, hip and jaw suffered significant amounts of damage, that he failed to find. As a result treatment for these conditions was delayed.

Nearly, nine months post collision, I found a physiotherapist who understood my condition, providing a proper diagnosis and care for traumatic brain injury. Managing the effects of concussion was difficult, because while I looked healthy, I had mood issues, ranging from high anxiety to depression. I was often short tempered and aggressive with people who were trying to help me. 

Through my family doctor, the behavioral health consultant recommended his colleague who specialized in chronic pain management using the work of Jon Kabat-Zinn, who designed Mindfulness Based Stress Reduction (MBSR) interventions. Then, still under their care when I was hit again in 2018 by a young man following too closely. 

Alberta Healthy Living Program

Right before I was hit in 2018, I took training for Better Choices Better Health – Chronic Pain, a six week self-management program offered by Alberta Healthy Living program that helps people understand their pain holistically.

The skills I learned facilitating the course helped me cope with my own situation, especially as we had to be in the company of other people. Due to sensitivity to noise, I did not go out a lot with friends, though I could spend time one on one with them. I kept active, going on walks, but couldn’t go back to my active lifestyle of hiking in the mountains. I started ballroom dancing to regain my balance rarely with music. We worked through the syllabus to build enough strength so that I could avoid falling. 

Fear of the future was constant as I needed to find a new career, but the second collision affected my ability to read comfortably for long periods of time. Eventually, I was accepted into a social work program at the University of Manitoba with accommodations for reading. Given my interest in research at school, I enjoyed participating in studies that the university and students needed to complete. They all had reflective components that helped me understand my new social location as a differently abled person.

COVID19, chronic pain and studies

During the height of the COVID19 restrictions, researchers at different universities wanted to investigate how people were affected. One study was conducted through my physiatrist’s office. It was a relief to talk to someone who wanted to know how I felt about the restrictions denying me access to care.

The other study involved checking to see how people felt about COVID19. This one was about two weeks long and was well designed to remind people to do the daily survey. Participants had the option to continue after two weeks to answer the same questions about how they psychologically felt about COVID19. I appreciated taking time away from the news to reflect on how I actually felt about what was happening.

Overall, my chronic pain condition is well managed with eating well and exercise. I still practice mindfulness and talk to a psychologist regularly during stressful periods. 

Be deliriously happy and madly in love with the moments that make up your life.
Sima Chowdry
Sima Chowdhury is a social work student at the University of Manitoba, living in Calgary. When she’s not advocating for a better world, she’s probably lost in the woods.

Thank you!

Clinical Trial Hero would like to thank Sima for taking the time to share her story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

Sign up for updates on more stories and upcoming clinical trials near you.