“Surviving IPF” is More Than Just the Physical Impact of the Disease

[donald-otis]

Yeah, I am afraid that I have put an unclosable space between me and most people. I have a friend or two who are really close, but for most people, the anger and the pain and the fear have set me apart. I feel like I have been the grumpy old man who always talks about dying. Ah, well. I mean, I am a GOMWATAD.

I try to focus on good things. It doesn’t always work, but all you can do is try, right?

[Charlene Marshall]

Hi Donald,

Thank you so much for getting in touch and sharing your thoughts in this thread… it really means a lot, as this was a tough topic for me to write about but an important one I think. While I am sad you’re also struggling with this, in a way it feels so good to have my frustrations validated by knowing others are living through something similar. I also fear that I am unintentionally putting space between myself and those that I care about due to anxiety-related to this stupid disease. Actually, I don’t think I even realized it was anxiety until just recently! I am always angry, and I never thought anxiety could present as anger but I am certainly learning that it can. I have a few people I am close with as well, but that circle is definitely getting smaller these days …

I need to do better at focusing on the good things as well. You’re right – all we can do is try! I also need to try harder to get a better sleep, because everything feels worse at night and/or without a good night’s sleep which I’ve rarely been getting lately.

Thanks again for writing, I appreciate your sharing your experience with us!
Charlene.

[steve-daggett]

I, too, have had several friends and family members talk about their life situations and then end the conversation with, “but who am I to complain…YOU’RE the one with the terminal disease!”
I am not a complainer, nor do I infuse conversation with my disease (unless directly asked), but people create their own barriers…possibly as a way to diffuse a difficult subject – to assuage their discomfort talking about it.

 

[Charlene Marshall]

Hi Steve,

Thank you so much for getting in touch and sharing your experience on this topic – it is a hard one to navigate as a patient, that is for sure. I definitely have friends who compare their troubles to mine, which is really hard because life isn’t about comparisons – even though as humans, I think we naturally do this so kudos to you for keeping your troubles out of conversations unless asked. I try to do this as well, but can always try harder. Last week I had a really difficult experience that “cut” me really deep. A friend of mine basically took my biggest vulnerability (my life threatening illness) and kind of dangled it in my face as we were trying to resolve a conflict. I hadn’t addressed an issue with her because I was in the hospital due to my lungs causing problems again, and as a result our feelings around the conflict naturally escalated so I think her comment was reactionary but she said to me, “yah well you’ll always have the better excuse not to resolve things because you’re dying”. I don’t think she meant to hurt me, and she has since apologized but I don’t know how to be friends with her going forward… it hurt me so bad. It has also made me feel as though I don’t want to share anything about my illness with people now if it can be used against me. There is so much more to just dealing with the physical aspects of this disease, it is exhausting!

If you (or anyone reading this) has an idea on what to do / how to deal with that comment, I’d invite you to let me know cause I’m really having a hard time with it. Despite her apology (and this friend being really important to me), I still can’t unhear it ….

Thoughts?

Charlene.

[michael-morale]

It is definitely difficult to un-ring the bell. I don’t think I’ve ever been that rude to anyone, and I can only imagine how hurt you are after hearing his. I’m not a psychologist and I’m definitely not a professional who deals with relationship issues, but I hope that you can find a way to get past this and still be able to be friends with someone who has been in your life for a long time. There have definitely been times that I have opened my mouth and been successful in putting both of my feet and my mouth at the same time. (UGLY VISUAL) Hopefully, this will be a life lesson learned by your friend, and she will probably never do this again. My best wishes to you both.

[Charlene Marshall]

Hey Michael,

Thanks for getting back to me regarding this experience, it is something that has been really tough for me over the last few days so I appreciate any/all feedback and thoughts.

She really has been a special friend in my life over the past two years (not longer than that) but I am wondering if maybe our relationship doesn’t have to be as strong as it once was going forward, or maybe our friendship just needs time to be re-built? I truly don’t think I can go back to being friends with her at the same level as I was before this comment. Regardless of intention, the fact that she obviously felt this way at some point hurts me beyond measure. I don’t even want to see her right now, but I know everyone needs space sometimes. We’ll see how it transpires I guess… I know she is sorry, but I think I need my time to process this and figure it out going forward. I wouldn’t ever dream of saying this to someone (I don’t think, I’ve never been in a caregiver/friend of someone with a life-threatening illness so I guess I can’t technically say what I would/wouldn’t do…) and I didn’t think she ever would either. Who knows, time will tell!

Thanks again for sharing your thoughts Michael!
Take care,
Charlene.

[steve-daggett]

Greetings again, Charlene!

If relationships didn’t have ‘hiccups’ once in a while, I would question the depth of the friendship! As friends -including spouses and significant others – get closer, the walls we’ve built to protect our innermost core can start to come down, and it’s often scary and painful. As a very wise man once said, “iron sharpens iron”. In other words, as relationships grow sparks are gonna fly…but the end result is a finely honed, beautiful instrument.  I think the silver lining here is that your relationship(s) can actually get stronger as the wounds heal.

I don’t mean to go all ‘therapist’ on you (because I’m not one!), but my experience is that if you can work through the hurt (both of you) with the goal of keeping a good friendship, your relationship will get stronger!
I’d rather have a friend who is honest with me than a ‘friend’ who is superficial!

[Charlene Marshall]

Hi Steve,

Thanks so much for writing back and offering your insights into this difficult experience I’ve been having. I certainly agree with you about the importance of friendships and relationships having ‘hiccups’ in order to figure out how to survive them, and thrive beyond them. Trouble is, our friendship has had multiple and I think part of what has been difficult for her (understandably) has been that different things have been bothering her, and she hasn’t felt comfortable bringing them to me due to everything I have going on health-wise. As an example, she brought something up from last August …. literally a year ago! While I understand how frustrating it must have been to feel like she needed to hold onto these things or keep them from me, I also don’t want to take responsibility for that. I pride myself on trying to be open, so the fact that she assumed she couldn’t come to me is a bit aggravating, despite her intentions of likely not wanting to add stress to my plate.

I hope you are right, and think you likely will be, that our relationship will grow stronger as a result of this and we/I (I can only speak for me) heal. That being said, right now it doesn’t feel like I’ll ever completely heal or be able to look at her without remembering what she said. Even if she felt there was truth to it. I do hope we can get past this, and maybe in time we will… sounds cliche, but I suppose “time will tell”. She definitely is an honest friend, and I do appreciate that about her.

Thanks again for sharing your thoughts, I really do appreciate it. I hope you get a chance to enjoy your weekend 🙂

Charlene.

[steve-daggett]

I’m sorry you’re having to navigate difficult situations with this. I’m not sure if you’re at a place in your relationship where you can ‘debrief’ the instance. In other words, are you able to sit down with her and say, “Can we talk about what happened the other day?” Sometimes removing the emotions and looking at it objectively can help. Saying things like, “I value our friendship, so I want to explore…..(insert your take on the incident)”
Just offering a suggestion that has helped me in the past!

Hope you have a great weekend!

Steve

[Charlene Marshall]

Hi Steve,

Thanks so much for your reply and thoughtful response regarding this situation — means a lot. It is tough, but it is already starting to feel a little clearer to me, now that I’ve given myself some time and space away from the situation to think it all through.

We definitely can debrief the incident, and thankfully have been able to do that a couple of times. Once it was a 3 hour conversation where we both ‘yelled’ at one another at first, then talked it through although she talked way more than I did. So, a few days later when I didn’t feel heard in that first conversation I called her in hopes of it going better the second time. It did, but it still isn’t fully resolved. It’s ok, I have a better sense of peace that it will get resolved now when it needs to, and I am enjoying how that feels because it is such a calmer place to be in than the angst and worry of trying to resolve it. We’ll figure it out I think, time will tell…

Thank you again for hearing me out though, I really appreciate an unbiased sounding board. I hope you had a great weekend?
Cheers,
Charlene.

[chuck-harrison]

There isn’t a day that goes by that I remember I could this or that ! Mentally I feel I’m in a good place . I am a 66 yr old male had to retire in 2010 because I just could not do my job anymore . Head grounds keeper at a big hospital in western my . Retired early 58 yrs old . 2012 February triple bypass , I’m diabetic take go care of that. So after the bypass I thought I was doing ok , up on the treadmill , gardening ( love it ) but kept running out of breath . So it just kept getting worse went back to my cardiologist she said I needed a stent so that was done no really big change in symptoms ! I played at this time on the church baseball, basketball volleyball you get the idea . Come 2016 April 8th my pc sent me to get a ct, one weak later I find I have ipf ! What the heck is that ? Research plus a wife who is an Rn we found out what it was . Very little explanation from my pc . So I went to a suggested pulmonary doctor and in reality all he wanted to do is sell me a mask .! Found my own pulmonologist and I found a great Doctor . I know come on Chuck get to the point ! At this time I am on 4 liters of 02 24/7 ipf has racked my physical strength I went from 210 lbs in now 172 lbs weak as a kitten have trouble just getting out of bed can not do many , many things I used to do , log splitting and such . Mentally I get depressed I have Ned’s for that ( oh boy ) so I fall back on my faith ( Christian ) and it helps , I take ofev 200 x 2 just love the side effects , I do get around , not on hot and humid days though , some of the conversations I have border on madness ( I know have asthma , or allergies I don’t argue because for them those are big deals right ? And there are plenty of times I don’t make it to social events . Charlene the list goes on , the pain increases and I deal with it and them . But when you come right down to it I’m Chuck I’m a happy man
God Bless

[Charlene Marshall]

Hi Chuck,

Thanks so much for your thoughtful reply to this thread – it is an important one to me, and I appreciate hearing from others around this issue.

I am glad to hear you’re in a good place mentally though, this is arguably as much the battle as the physical component of PF/IPF, and certainly something I am now struggling with from time to time. Thankfully, I have a lot of good people in my corner who can help me and I am happy about that.

So sorry to hear of your IPF diagnosis being secondary to a number of other health issues, that must have been frustrating when your CT confirmed this diagnosis. Glad you are happy with your doctors, and that your wife is an RN and can help you through navigating the challenges of this disease, to which there are so many! It sounds like physically it has taken a toll on you, I’m so sorry to hear this – it is such a cruel and unfair illness. Glad you’re still able to find good in each day, and that you have some things to rely on to help you through as well. Being (and remaining) happy throughout this  journey is so important. Thank you for such a kind, thoughtful and thorough response Chuck…. do take care!

Warm regards,
Charlene.

[chuck-harrison]

4:38am awake coughing madly m, this one of the things that anoy me , it bad enough during the day , but sleep interrupted I can’t afford , before I did this I would read and apologize to my wife for waking her . But now I can rant , I’ve tried many things to at least ease the cough Ricola will sometimes do that , but of late I have found anise hard candy does a much better job . I’m on so many meda now I am far from wanting anymore so over the counter I look . Any other I deals out there ? Oh one more thing before I shut down , please , please , have a good day , I know how hard it can be , but I wish you the best day that you can have .

[Charlene Marshall]

Hi Chuck,

I am so very sorry to hear of your struggles to sleep last night – I can imagine this was incredibly frustrating for you! Were you able to get back to sleep? I completely agree that none of us fighting this illness can afford interrupted sleep on top of all the other difficulties this disease causes us.

Do you sleep propped up on either a foam wedge or pillows? While this didn’t stop my nighttime cough it definitely helped with getting a more comfortable sleep. This might be something to try for you, or do you use any inhalers before bed to try and open up your airways more? This of course would have to be encouraged by a doctor but I have heard of others doing this to help suppress the cough a bit. Or cannabis oil? There are some things out there to try, although you may have tried them already too.

If it helps, here are a few forums you could read up on to see if others’ have any good suggestions for you: https://pulmonaryfibrosisnews.com/forums/forums/topic/laying-flat-bed-pulmonary-fibrosis/

https://pulmonaryfibrosisnews.com/forums/forums/topic/managing-exhaustion-tips-improve-sleep-pulmonary-fibrosis/

https://pulmonaryfibrosisnews.com/forums/forums/topic/reporting-back-strategies-improving-sleep-ipf/

Goodluck, I hope you find some relief as well Chuck and have the best day possible. Thinking of you!
Charlene.

Symptoms of Laying Flat with Pulmonary Fibrosis.

[sandra-vanzyl]

Hi Chuck, I know that waking up in the night routine, coughing my head off, I’ve been doing that for years ….there is a prescription medication that I use when I’m going out to dinner or the movies …it’s called Tussinex…it’s a cough suppressant and it works 95% of the time .   Coughing is brutal and pains our bodies and our minds…..I don’t know how I’ve managed this cough for over 15 years (badly diagnosed by many doctors ) ugh…when I’m coughing now I can’t wait for the gag reflex to come so that I know it’s almost over !  Sad but true.   We’ve been invited to a wedding on the 29th (my GF Son) I said we won’t come to the Church so that if I start to cough up a lung I won’t be looked at with ‘WHAT are you doing Lady ‘ I mean what if it’s being videotaped and all you can hear is coughing ….till I gag. !  We will go to the after party tho ….there are people from Scotland that I want to see again!  I’ll just double up on the Tussinex and have a good old time ! …hope you slept well last night !  All the best Chuck

[Charlene Marshall]

Hi Sandra,

Thanks again for getting in touch, and sharing a bit about your experience with the Tussinex. This is really helpful information to know, it is a prescription you say? I wonder if other respiratory doctors would be open and willing to prescribe it to those of us who struggle with the chronic cough. Agreed, it is so painful on our bodies and physical health (ie. compromising sleep) to have that consistent, exhausting cough.

Hope you have a great time at the wedding!
Charlene.

[sandra-vanzyl]

This is no doubt a horrible disease Charlene,  and I doubt very much that you would use this as an excuse of any kind to avoid doing certain things with friends.  Whomever said that you’d always have the better excuse because you are ‘dying’ is way off the mark.  That was beyond cruel and in my mind I would never trust that person again nor would I ask her for any help.   I’m sorry that she put you in that situation…she must be very self absorbed to say those words.  Whoa….beyond upsetting.   I guess the fact that I’m going to be 65 soon puts a different light on things.  Being older I have even less energy that younger people just because of age…we need to have positive people around us…sure we can’t really go to the beach with all this ‘equipment’, can’t imagine dragging that oxygen tank on wheels through the sand …OMG…that would be very annoying ….I would be so bold as to ask some guy if he could help me out..I’m not afraid of asking strangers ….LOL …I’m definitely going to meet you when we’re in Toronto for the week of assessment.  It’s a winding road we’re on and I think they are making headway with this disease and they are now using lungs from some of the opioid deaths in Toronto even tho they are Hep C ….we can always chat over the phone as well Charlene ….xo

[Charlene Marshall]

Hi again Sandra,

I hope you’re having a nice week so far. Not sure if it is as hot near Ottawa as it is here today, but if so, I sure hope that you’re finding ways to keep cool!

Thanks for commenting and sharing your thoughts on the tough experience I had with a friend. While I think I am “over it” now, I can’t ever completely forget it. Her and I now have a good working relationship (we’re colleagues too) but I don’t think our friendship will ever be the same. Right now, it is basically non-existent outside of work, and I’m okay with that because I am still healing over her comment. I try so very hard not to use my illness as an excuse in ANY situation and as we all know, we can’t know or predict when our lungs will cause us problems. I still feel a bit broken from this comment every time I see her, and it is something that I can forgive but I just can’t forget. Not sure which direction our friendship will go in from here, but I’m actually okay with that. It will be what it will be: sometimes you can’t take words back.

The hardest part is, this person is someone I respect and love more than most and our friendship was so close before this happened. However, I never thought she was capable of saying something like that to me.

I agree with you, it is so important to have positivity surrounding us, not any negative energy and I’ve really embraced this lately. I do what I want for me, not others and maybe I’m being selfish but so be it (stay tuned: I’m going to write a column about this soon). Things change when you are given a shortened life expectancy.

YES, please let me know when you’re in Toronto for the assessment week. I’d love to meet in person and catch up 🙂

Have a great day!
Charlene.

[john-l]

Just coming to terms with this IPF diagnosis & I am already seeing how my family & friends are responding to my daily struggles.  I really don’t think they fully comprehend the effect this is having on me physically, mentally, & spiritually.  I get the impression that because I somewhat might look good on the outside, that everything is ok with me?  Well, “news flash”, everything is not ok!  Not looking for any sympathy, but when in conversation, I try to explain how I’m feeling, I find they almost automatically start talking about how they sometimes feel like that too, or just seem to minimize my feelings.  I appreciate this forum to at least have a place to vent with people that can relate & identify with what I am going through.  I don’t want to push people away in my life that I love (family & friends) but sometimes I feel like closing down to them & keeping my feelings to myself.   Any thoughts?

[Charlene Marshall]

Hi John,

Thanks so much for writing, although I am so sorry you’re having a difficult time with your family and friends understanding this terrible disease. The hardest part of this disease for me is how invisible it is for others. They assume because we look good, we’re feeling good, which is rarely the case! Have you read any of my columns about this? Sadly, I write about it a lot as it never really goes away which is so hard. Another thing that truly irritates me is when people “know how I am feeling” because they’ve had bronchitis or something. Absolutely not the same! However, I try not to invest emotional energy in my response because it isn’t worth it. People try to understand, but you’re right, they just don’t. That is why I’ve found so much comfort in these forums. Feel free to write any time, we truly “get it” here and sometimes that is what I need. Not sure if this helps at all?

Hang in there…
Charlene.

[jan-riche]

Hi Charlene, I know how it feels to be deeply hurt by someone close. In my 77 years it has happened. Sometimes my relationship has survived and at other times not so much. For me,it would be important to know if the person was just frustrated or meant to hurt me. I don’t know exactly how I would know and I don’t know if I have assessed it right in the past, but I do know that once I forgave them and calmed down I kind of knew if the relationship was going to be the same or not. My best friend of 44 years and I once had a conversation in which we decided that the strength of our relationship would depend on our ability to accept and forgive each other as every one who gets close enough will hurt you some way. Our friendship is strange as he is male and of course I am a woman. Even my husband treats him as if he’s my brother. We have stood by each other through almost every thing. His wife was my matron of honor when I got married. I do believe he would never hurt me intentionally but there have been times when it happened. I think all my close people have hurt my feelings at sometime or another as I have surely hurt theirs but mutual forgiveness has mended them. I sincerely hope that you do gets over this and I appreciate how much it hurts when it’s fresh. I would very much like to hear about how it gets resolved and the outcome. Friends are the spice in my life.
Jan R.

[Charlene Marshall]

Hi Jan,

Thank you so much for writing and sharing your thoughts on this topic. While this event happened awhile ago now, it really still cuts deep and I appreciate hearing from others who have shared this experience. Like you, it was important for me to find out if the person was just frustrated or their intention was to hurt. In this particular experience, I’d never assume this person would want to hurt me. She doesn’t have a mean bone in her body, and she has since explained that what she said was terrible and it was. Sadly, it doesn’t mean I can just forget it and I think I’ll forever be impacted by it. I have forgiven her, but it’ll always be there when we interact. Sadly, we work together so I have to see her on a regular basis and I am still very uncomfortable around her although she is trying hard to re-build my trust in her. For now, I just can’t…

I’m so sorry to hear you’ve experienced something so similar, among the folks closest to you. That makes me sad, but we sure learn lessons in these experiences, don’t we? I have not let someone get so close since this happened, almost a year ago, and am not sure I ever will be so vulnerable to someone again. I am lucky to report that I have many close friends who fill this gap for me, although the friendship with this friend is indeed missed. That said, I wouldn’t replace it again IF it means this situation could be repeated. It’s sure tough to navigate and I am very thankful for your kind words and sharing your experience.

Warmest regards,
Charlene.

[jan-riche]

Charlene,
I am truly sorry to hear that it’s still stressful for you. It must be difficult to see her on a regular basis. My heart goes out to you and I hope additional time will soften the blow.
Jan R

[Charlene Marshall]

Thank you for your kind words Jan. I too hope that what they say is true about time healing wounds. I don’t think about it as often, but certainly haven’t forgotten. Thanks again for sharing your thoughts and corresponding with me about this topic. It truly helps!

Regards,
Charlene.