This topic contains 6 replies, has 4 voices, and was last updated by  Charlene Marshall 3 months, 3 weeks ago.

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  • #17865
     Charlene Marshall 
    Keymaster

    One of the most meaningful pieces of feedback I receive as a columnist with Pulmonary Fibrosis News is when people tell me they can relate to a topic I’ve written about. Not only does it feel good for me to hear this, but it also brings me great comfort (and I hope for the readers of my column as well) to know that we’re not alone in dealing with idiopathic pulmonary fibrosis (IPF).

    When I read content from others, I always appreciate articles, columns or posts that come from the perspective of: from the PF patient, for the PF patient. This is because I know I’ll be able to relate to the content, since it is written from a patient living with the same disease as I have. I also appreciate this approach when it comes to sharing tips about coping with something PF-related. A question I often ask others in my columns is: how do you cope with X (insert topic of choice) since your IPF/PF diagnosis? 

    I had a really tough day on Monday. Sadly, I worked myself up so much emotionally that I threw up and couldn’t sleep that night. In hindsight, it probably didn’t need to be that bad but things always seem worse in the moment. I tried all my typical stress-relief efforts and none of them seemed to work for me; the issue just felt all-consuming and nothing seemed to get better. After exhausting my typical stress relief options, I thought to myself: I wonder what other patients do for effective stress relief?

    I plan to write a future column about this from the perspective of: from the PF patient, for the PF patient since I usually find this most helpful. Wouldn’t it be neat to have a collective document of various ways we all relieve stress for patients who need it in future? 

    As a result, I’d like to ask you all: how do you effectively cope with stress since your IPF/PF diagnosis? 

    What has been most helpful for you when it comes to getting through really difficult days with your disease?

    I’d love to hear from you!

  • #17894
     Andrew Hall DC 
    Participant

    Dear Charlene,

    First of all, I think you are pretty hard on yourself……  I’ve never met someone SO dedicated and hard working. I honestly don’t know how you keep up with everything you have going on……  You are truly amazing!!!

    I wish I could give you a good long hug!  There isn’t a single person that visits PF News that doesn’t just adore you including me!  You give EVERYTHING of yourself, and are encouraging to everyone on this site. You seem to have an uplifting response to everyone in every thread.  You are unbiased and open minded.  And you are appreciated more than you will ever know……

    I know what it’s like to get overwhelmed.  With all the emails from PF patients and treating doctors, doing laser doctor searches, the phone calls, still running a practice and getting home late on work days, trying to keep up with the IPF study, doing research, the frustration of working with other doctors on laser protocol that don’t have the ‘urgency’ that I seem to have…….  There comes a point where I need to just back off.

    The best stress relief for me is to take the dogs out for a hike.  I finally got to do that today when I got all caught up with everything.  (never really ever caught up) There was still some snow on the ground in our hiking area, but I got a good long hike in and it felt great!  I can’t wait to get my Harley out, it needs to warm up some more before that happens, but for me it’s good for my soul and clears my head.  A day fishing works too.  Can’t wait for Spring to really get here…. I’ve got lots of stress relievers.

    Anyway, when you get feeling like you did Monday night, take a deep breath, and just know how much everyone loves you…….

    Blessings,

    Andy

  • #17911
     Charlene Marshall 
    Keymaster

    Hi Andy ( @drandyhall ),

    Thank you SO much for your kind words – wow, what a beautiful note to wake up to this morning! I will hold them close as I start a new week, hoping for one better than the last. Thank you again, I really appreciate this note 🙂

    I am very hard on myself, have always been a classic overachiever and in my head, I’ll be damned if I let IPF change that. However, I may need to start accepting this is a possibility. I’ve always worn my ‘heart on my sleeve’ too, and sometimes I let people get under my skin far too easily. This happened on Monday and it was such a terrible day, then it dawned on me and I thought: “why am I giving this person so much power over me to make me feel so awful”? Changing that perspective really helped, and now I need to remember that I can choose to be happy despite what others do/say to me. Its an ongoing learning for me, and not everyone is as wonderful as those on our PF forums site…

    Since I was pretty overwhelmed, I took some time “offline” this weekend and I realized I really needed it. I stayed up way too late with a friend on Friday night, and then we sporadically went for breakfast and saw a movie I’d been wanting to see for a long time. It was a really good day, and some of the unpleasant symptoms I was experiencing (neck pain, headaches, etc) went away so I think I’d been spending too much time in front of a screen. I’ll need to remember to take breaks like this more often, as it really helped. My time that I need to ‘back off’ as you said was this weekend, and it was good. I really hope you find time to do this on the regular too, emails sure can pile up and be overwhelming occasionally.

    I’m so glad you have your dogs to take out on a hike! It is amazing how being outside can really help us clear our heads, isn’t it? I plan on taking my dog out for a nice long walk this afternoon. It isn’t sunny but it is supposed to be +10 here finally, so I’ll take it. Spring is coming! I sure wish I lived closer to water, I’d definitely go fishing as well as a stress relief, that would be so neat. Water is so soothing for me, and I’ve never felt ‘more at home’ then when I am by the ocean. Someday I really need to consider a move to the sea…

    Thank you again for your kind words, I really appreciate them Andy. Have a great Sunday and here’s to a beter week ahead.

    Hugs,
    Charlene.

  • #17920
     Lorraine 
    Participant

    Hi Charlene:

    I also found Dr. Hall’s response uplifting and on point.

    It is very hard to get IPF out of our heads and hearts. Which is why Mark, or I think it was him who said he calls his IPF his girlfriend, because she is always with him. I admire him for  embracing it that way. Sometimes I dwell on it to much but then I realize I am not enjoying valuable time. So instead I try to escape and take vacations (a/k/a distraction) from it. Of course it is still in the back of mind or perhaps the front of my mind — but  distractions help.

    Recently, I saw a Social invite from Meet-up that appealed to me. You will understand why, when you read the following:

    “What we’re about

    This women’s only group is a social daytime meetup group for those of us suffering from a chronic pain ailment (such as fibromyalgia) or those who have had a long professional work life (like I did) and had to (or forced to) retire earlier than expected. It gets you out of the house (I isolated over 3 years) to meet other women for lunches, movies, day trips, comedy shows, charity events, spas or whatever else can make us happy. It is budget friendly and I tend to find events through Groupon or Eventbrite which allows members to purchase their own tickets but I organize the event so we all go together. All I ask is a reply of Yes or No if you are planning to come to an event.

    If you are a positive person and want to socialize this group is for you. Come in with your ideas for fun adventures (be mindful that some of our members can’t walk very far) and perhaps your ideas will be the next meetup group event.

    No pity party ladies allowed! We understand and accept our health and/or other uncontrollable troubles in life, we are just looking to “tune out” for a little while. This is our safe and comfortable haven.”

    They do a lot of fun things, and I joined. Wednesday will be my second event.

    Let’s try going IPF unplugged or just tune out!!!

    Best wishes,

    Lorraine

    • #17948
       Charlene Marshall 
      Keymaster

      Hi Lorraine,

      Thank you so much for writing to us about this topic – really important for me to hear how others cope with stress. I also appreciated hearing from the person who called IPF his girlfriend, I actually think it might be have Jean-Michel but I can’t remember either. Good way to phrase it though, isn’t it? You’re absolutely right about the importance of distractions, glad you’re able to do this and hopefully put IPF in the back of your mind for even a short while.

      WOW what an awesome idea for a meet-up group! Meet-up is relatively new here but it sounds like it can be tailored to really meet the needs of so many, how wonderful. I also think the write up on this is amazing, very warm and welcoming. If I was local, I think I’d actually attend this myself! How was the first event you attended? Curious to hear and glad you’re going back tomorrow (Wednesday)…. amazing Lorraine! Thank you so much for sharing this.

      Charlene.

  • #17940
     Carol Gerstein 
    Participant

    i allow myself a 24 hour pity party,,,,,,,,cry, feel sorry for myself, try to do things i cant, which gets me more depressed.  To get out of it i either work a puzzle, which i forget everything else except the puzzle or draw or paint a picture.  the other day i couldnt do anything, i had just gotten out of the hospital with a mild case of pneumonia so was having a pity party, i went a got some drawing supplies out and the next thing i knew it was hours later and i had painted a picture and felt good because i accomplished something

  • #17947
     Charlene Marshall 
    Keymaster

    Hi Carol,

    Thank you so much for sharing how you cope with stress; I appreciate all the variations of coping tools that are coming in via the comments or DMs to me. Everyone seems to cope so differently, but all in seemingly helpful ways for them which is most important. So glad you felt that sense of accomplishment when you painted your picture, what a therapeutic project! I think allowing ourselves the permission to feel whatever we want – crying, pity, frustration, etc. is really important and certainly valid. The fine line (in my head anyways) is ensuring we don’t get “stuck” there…. thanks again for sharing, so glad you’ve found something that works for you when you can paint or do puzzles.

    Take care,
    Charlene.

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