Recovering from an Acute Health Setback Is Challenging

Recovering from an Acute Health Setback Is Challenging
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Many Pulmonary Fibrosis News readers know that during the last few months, I have had several acute illnesses. As a patient living with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease, I ended up quite sick as a result.

Since mid-November, I have been recovering from pneumonia, influenza A, strep throat, and now COVID-19. While I am thankful to be out of the acute phase of each illness, in which my life was threatened repeatedly, the recovery phase is proving difficult.

I did not expect this while lying in my hospital bed longing to be on the other side of these illnesses. I also feared that my lungs would be further and irreparably damaged. Yet amid the COVID-19 closures, I’ve not had the opportunity to have pulmonary function tests (PFTs) to assess the physiological damage of these illnesses.

In addition to these physical setbacks, my mental and emotional health have suffered as a result of being sick.

Like many others, I am working from home while my workplace practices physical distancing. Some of my struggles might be due to the difficulties we’re all facing, particularly social isolation. I’m used to separating work and home life due to these two physically different spaces. Now that they’ve merged, finding a work-life balance has been difficult.

Recovering from an acute illness entails far more than dealing with the physical effects. Following are additional difficulties I face, and the hard work required to recover from them during the last several months.

Physical effects

While I was recovering from the health setbacks, other IPF patients shared encouraging words for me on our forums. One question I’ve been asked frequently is if COVID-19 caused any further damage to my lungs.

While I can’t have PFTs done to confirm, I do notice a difference in how I feel post-COVID-19. I recently told my pulmonologist that I feel dependent on Ventolin (albuterol), an inhaler,  whereas I hadn’t before.

As I understand it, ventolin’s effectiveness on fibrosed lungs isn’t clear, but my doctor prescribes it anyway. I rarely took it before I ended up sick, but now I need it every four to six hours. I am more breathless and have a tight chest and wheezing if I don’t use it regularly.

Additionally, I am increasingly tired and lethargic. It is hard to know if this is due to my health setback or the progression of my disease, but I am more exhausted than normally. This includes physical and mental exhaustion, and I seem a lot less tolerant for tasks that require more physical or mental energy.

Mental impact

While I have resumed some full-time responsibilities at work, which is a step in the right direction, I’ve been encouraged to give myself some grace in terms of my own expectations. Mentally, I don’t feel as competent as I did before, as I am forgetful and easily overwhelmed. This may be caused by working at home and being in a different work environment, but I notice myself forgetting processes or needing multistep instructions repeated several times before I get them right.

I also feel a lot less tolerant of tasks that require a lot of mental energy and have noticed I avoid them or leave them for last on my to-do list. Reflecting on this, I believe it is due to subconsciously knowing how drained I’ll feel afterward. I prefer to get the other tasks done before I attempt ones that will leave me mentally exhausted.

While I believe I can do everything I used to do, the length of time tasks take me has increased, and I require more mental breaks to clear my mind.

Emotional effects

The physical and mental struggles I’ve mentioned have had a significant emotional impact. I am angry that these setbacks have left me feeling less like myself. I frequently catch myself saying, “If I just hadn’t gotten sick.” I need to remind myself that falling ill was not my fault.

It’s important to take our own advice, because I am quick to encourage others to have compassion and love for themselves and their abilities, but I rarely apply that to my own life. I need to start.

Recovering from an acute setback is hard work. Do you have tips to share to make it easier? Please share in the comments below. 

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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12 comments

  1. David Swain says:

    Hello Charlene. I’m sorry to hear you have had so many setbacks including the dreaded cover 19. I struggle with IPF on it’s own, so no wonder you have been dragged down. I hope and pray you will soon get back to normal and be able to function as before. What you do for this forum is amazing. We all owe you a big “thank you”

    • Charlene Marshall says:

      Hi David,

      Thank you so much for your kind words, and as always, for reaching my columns and reaching out! IPF on its own is no small feet, and I count my blessings that I’ve survived so many setbacks on top of this cruel lung disease. Slowly I am returning to normal in terms of energy levels and capabilities, but that return has been a steep, uphill climb. However, this community inspires me every day and is the reason I keep working so hard at it. No need to thank me, it’s a privilege to connect with so many of you on the forums. Stay safe and thanks again for your kind words.
      Charlene.

  2. You are very courageous to share with us the numerous challenges confronting you. I am sure that all of your readers appreciate your words, Charlene.
    Hang in there, my friend! Things will turn around, and you will prevail.

    • Charlene Marshall says:

      Thank you so much for your kind words Holly, as always! I can’t wait to celebrate with you post transplant and in the warm, California sun. We’ll make sure Christie joins us too! I hope to return to California in September, should international travel be allowed. I’ll keep you posted 🙂
      Charlene.

  3. Richard Guilford says:

    You’re a joy to listen to Charlene Marshall. I grieve for your youth that is being compromised by IPF. I am at the other end of the scale, at 82, diagnosed a year ago. I can’t die young, I feel my troubles are as nothing compared with the short stick you have drawn. Although, Ofev tests suggest a longer lifespan than I would have had without IPF — (sigh, (:-), so much for scientific studies).

    I’m originally from Portland MI, about two hours away from SW Ontario through which I have travelled many times to go to Stratford, Ontario for the Shakespeare Festival. Now in Florida.

    Keep up the good work. I will follow along.

    • Charlene Marshall says:

      Hi Richard,

      Thank you so much for reading my columns and reaching out via the comments. I really appreciate your kind words, and so sorry (regardless of age) that you’re having to deal with this cruel disease too. I hate that it exists, and long for the day we can celebrate a cure! Hopefully Ofev helps slow down the progression of the disease and that you’re tolerating it ok. I am also on Ofev, and boy was it hard to get used to and tolerate, successfully!

      I know Portland area well, and especially Stratford. I grew up near the Canadian shores of Lake Huron – which you likely passed en route to Stratford. Such a beautiful town, isn’t it? I bet Florida is a beautiful place to reside, enjoy!

      Thanks again for writing and take care,
      Charlene.

  4. Ed.Brownstein says:

    Dear Charlene.
    Due to my limited education and very poor writing skills, I am always reluctant to post.
    After reading your recent post I just had to reply and state how I am so impressed with you. you are truly an inspiration to me. With your grit and determination I am sure I can look forward to many more of your inspiring articles.

    • Charlene Marshall says:

      Hi Ed,

      Thank you so much for reading my columns and reaching out via the comments. I’m so happy you set aside your reluctancy to post, I love hearing from members! Please reach out any time. Thank you for your kind words, they mean a lot to me and I hope I can help others on their IPF journey through my column publications. I will keep writing as long as I can and look forward to connecting with you again Ed. Take good care, and reach out anytime.
      Charlene.

  5. Sandra Hackett says:

    Hello Charlene I follow you as much as possible thanks for sharing your stories with us hope you are feeling much better. I have lungs fibrosis and I used the concentrator oxygen 4 liters in the house and the cylinder when I am going out. I am trying to stay safe was having all my doctors appointments on the phone. Some days are not the same but I am taking them one days at a time…please take care of yourself.
    Sandra.

    • Charlene Marshall says:

      Hi Sandra,

      Thank you so much for reading my columns, and as always for reaching out via the comments – it is so nice to hear from you! I so appreciate your kind words, and yes, I am happy to report that I am almost 100% better. Of course not pre-IPF but definitely more like my “pre-COVID” self at least – thank you for asking 🙂 Glad you’re keeping safe, everything feels a bit different in these times don’t they? Continue to be well and thanks so much for your kind words!
      Charlene.

  6. Gerry says:

    Hi Charlene,
    Sorry that you have had to go through so much sickness. I encourage you to eat well and often. I also had health challenges that deprived me of my strength. My caregiver checks my daily menu to make sure I’m eating well. I’m 82 and on oxygen 24 hrs. I feel I am slowly gaining my strength. I’m sure you will be better in the near future. Hang in, you’re doing great!

    • Charlene Marshall says:

      Hi Gerry,

      Thanks so much for reading my columns and reaching out via the comments. I really appreciate your kind words! Funny you mention the eating well, I actually just signed up for a new meal kit Gerry through an organic fruits + veggies company. They also support local farmers which I appreciate, so I’m really looking forward to getting a good mixture of healthy, organic fruits and vegetables to incorporate into my diet. This will also help with the stress of groceries too. I’m so glad to hear your caregiver checks on you regularly, and that your strength is slowly returning. That’s great! Take care and thanks for writing.
      Charlene.

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