I’m Not Just Being Stubborn: Rest Is Hard for Me

I’m Not Just Being Stubborn: Rest Is Hard for Me

younger than 30
Please note this disclaimer before reading this column: I am writing in a bit of disarray, frustration and sadness. I have chosen to write a column while feeling this way, because I think it has the potential to create a column you can relate to: one that is honest and raw. It also shows that patients with idiopathic pulmonary fibrosis (IPF) have moments of weakness and sadness, amid the strength we attempt to show on a regular basis.

Last week I shared recent setbacks that led to a hospitalization, unexpected procedures, and muscle and body weakness as well as an increase in my oxygen needs. As a result of being hospitalized, I developed a cold, which is now wrecking havoc on my lungs. I have been unable to lessen my oxygen needs since. This, among other reasons, has contributed to my inability to return to work right now, which has been really difficult for me. I am not upset at anyone, just at the fact that this happened at all. The only way to recoup from this, some may argue, is to rest. However, I am not just being stubborn when I say that resting and being still is hard for me.

Being still and resting are actually not “just what I need” from a physical standpoint. Let me explain. As a result of my recent setback and the medications I received, my muscles are weak, which makes me a little unsteady on my feet. While I do need to rest and let the muscles recoup,  I also need to have reason to be mobile. I need to move in order to strengthen and use my muscles again. I can tell when I have rested them too much, because trying to stand or move afterwards causes pain and swelling. It’s all about finding balance!

Resting and minimizing movement is not “just what I need” from an emotional standpoint. Have you ever felt incompetent at something? If you have, you can relate to the frustration I feel when trying to do anything right now. Walking to the bathroom takes a lot of energy. Going up and down the stairs feels nearly impossible, and completing daily tasks like cooking, feeding my dog, and doing my hair is exhausting. If I can’t complete these tasks, surely it must mean that I need to rest, right? Wrong. What I actually need is to feel like I have a purpose and something productive to do, with modifications to help me feel like I can actually achieve a task. Otherwise my emotions get away from me, and I feel overwhelmed by incompetence.

Lastly, being inactive is not “just what I need” from a mental standpoint. If you have ever been worried about something, you know how difficult it can be to focus — even when you have something to distract you. At the moment, I don’t have many distractions. There are only so many television shows you can watch, books you can read or social media updates to check while you are supposed to be resting. Being still and focusing on things that are not productive, like TV shows, feed my worry, stress and fears about what lies ahead on this IPF journey. Thus, being still is actually counterproductive to for me in many ways. While I know physically that my body needs some time to rest and recoup, my mind does not benefit from continually resting. Once again, it all comes down to balance.

I read an article recently on The Mighty about dangerous things to say to someone who is chronically ill, or struggling with depression. One started off a sentence by saying “you need.” What I often get is, “You need to rest.” People who are chronically ill know what they need, and are receptive to help, but please remember that rest is not always as beneficial for us as you may think.

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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!

6 comments

  1. JUDY KRASOVEC says:

    Boy glad to hear, my joints have been so swollen cant even close my hands or get off the pot. Never had it this long or so severe. Usually a day or two and its gone. It’s been 2weeks now. Taking water pills and protest but not much better.(I’m not usually a pill taker)’ .

  2. Patricia Gilham says:

    Totally understand..I take 5,000:units of Vitamin D3..drink peppermint and ginger tea daily also astragulus root for tea..use honey..and above all I do my best to keep my mindset healthy..while we fight a physical battle with this sickness we also have to fight the mental battle as well..I try to keeping doing everything I did before..walking to my car is so hard, but I still drive..I go on trips..need a whole van just for me and my oxygen needs.a lot of times I have no help and have to hire people to help me, but I choose to give thanks in everything concerning me especially waking up with the breath of life after experiencing losing my breath so many times thinking I was going to die on the spot..all is not high quality living, but all is well…praying all will be well for you too..hang in there..

  3. Russel J Fabre says:

    Good for you, say what you want and when you want to. For us with IPF we are always in different stages of frustration. But what do we do? Wake up shake it off and move on. That’s just what we do. Right?

    • Betty j Owens says:

      There’s nothing really that one can do so am thankful I put my feet on the floor every morning. Shake it off and stay on the go. I’m 78 and my husband is 90 and we jump and go every day doing only what we want.

  4. Ghulam Soofi says:

    Having had the label of IPF for almost eleven years,makes me qualified to say how frustrating it is to live with this disease 24/7…It is full of challenges and failures when it comes treating this disease…I have finally resigned to say “ke sera sera whatever will be will be”.so I am living accordingly and leaving the worries behind…the more you worry ,the less it is…so what is the use worrying …although my lungs have almost run the race but I am still breathing and living….let faith be the healer….p.s I am 81 yr.old

  5. Ellen Hays says:

    At 83 years and 8 years post IPF diagnosis, I consider myself darned lucky to have had a good life before IPF reared its ugly head. I do not know the frustration of younger folks who struggle daily to get to work in the morning and get thru the day. (Our family did go thru too many years of the struggle of our daughter, a brittle diabetic who knew life would be short). My only advice is try to keep a smile on your face, cuss a bit when you’re tangled up in your “nose hose”, and make every attempt possible to keep moving. A really good pulmonary specialist is a big plus. I pray you have one available for your care.

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