Tagged: chronic illness, encouragement, IPF, PF, relationships, support
- This topic has 6 replies, 4 voices, and was last updated 5 years ago by Charlene Marshall.
June 1, 2018 at 9:23 pm #12855
Many of you who read the forums on a regular basis, might be aware that I’ve had a tough few weeks. I am struggling with my patience, am having anger issues and overall have an overwhelming feeling of “life isn’t fair”. I’m committed to doing the work it will take to change this mindset, but throughout the past few weeks I seem to be stuck dealing with these feelings, thoughts and behaviours.
I’ve been talking to a lot of people about this, and giving it a lot of thought on my own as well. I’ve repeatedly asked myself why I feel this way, and why I’m “picking” what seems like stupid, insignificant battles with others over things I don’t really care about. I’m a big believer in not investing energy into something that isn’t important to you, and I am doing just that but it is negative energy and a lot of emotions. I am also doing it with the friends I love most. Why?
Sometimes I find myself angry at people who might have done something I didn’t like, but the most important thing I acknowledge is that they didn’t do whatever caused me to get mad intentionally, or to hurt me. I know this, with certainty, because the people I’m finding myself angry at these days are ones who I don’t know how I would have survived my idiopathic pulmonary fibrosis (IPF) diagnosis up to this point without.
I am trying to be gentle with myself around why I feel this way, and I’m trying to constantly remind myself that at the end of the day: Relationships, and the way we treat or interact with each other is what is most important. As patients with a chronic illness, we need others’ and we need strong, positive friendships to get us through this. I know that, and I endorse it, which is why I’m struggling so much with being angry at some of my closest friends. Admittedly, I’m at a bit of a loss on how to feel better.
When you find yourself in a “funk” with prolonged sadness or anger; what makes you feel better?
I don’t believe it is any type of depression or anxiety, only because when I am doing certain things (alone, in the comfort of my home, or with my dog) I am fine and feel like myself. Right now, it is when I am at work mostly that I feel so unlike myself. However, perhaps I am wrong and it is one of these two things? I don’t know.
Thanks for reading.
June 4, 2018 at 12:42 pm #12909Sandra KoenigParticipant
There are days when you want to completely shut down. My family and friends see me smiling, laughing, doing everyday normal things, and I look very well on the outside. On the days that the coughing jags are too much, I get down. There is no handbook for living with IPF nor is there one for our families and caregivers. You don’t want to burden your kids or friends with how you are. It’s always a mixed bag of emotions. You keep telling yourself not to feel sorry for yourself, buck up as others are worse than you. I will admit when I am at my lowest I feel, because I still look normal and act normal, that those closest to me really aren’t concerned. I reach out to them but get nothing. I know for myself and my own thoughts, that I must keep being positive as no one wants to be around someone with a chronic illness. I think that is the only way for me to cope. What really bothers me is I have become an introvert. I have immersed myself in my one hobby where I feel in total control. No one is making demands to tell me that I can’t do something, or wear your oxygen, or in a social setting where I could start coughing and have people stare. So if you are asking what is the one thing that helps me, it’s not relationships as much anymore, it’s being alone doing what I can control.
June 5, 2018 at 7:24 pm #12915
Thanks so much for contributing to this thread, and sharing your experience with us. I am so thankful to those who take the time to read and write back to topics on this forum… we so appreciate you!
Unfortunately, I can relate to the days of looking good on the outside and as a result, everyone perceives you to be well but feeling hurt, broken, sad or unwell on the inside. I think this is one of the hardest things about this disease, that so much of it (with the exception of supplemental oxygen) is invisible to others. You are among friends here Sandra, people who truly “get it” so please don’t ever hesitate to reach out on the days you feel like shutting down. Sometimes I get that way too and then I realize how much support exists on this online platform and feel much better when I know there are others who understand. I truly hope your friends and family want to spend time with you, and can meet you where you’re at in terms of coping with your illness – everyone is entitled to have down days!
I can also relate to the change in becoming an introvert, when I was previously an extrovert and actually Sandra I think you’ve helped me understand something more about myself just now. I thought I liked spending time alone, working on quiet hobbies because I wasn’t around others and could work at my own pace but I think you’re onto something about the control piece. When I am alone, I am in full control of my thoughts, my feelings, my emotions and what I do with my time. While living with a chronic illness, so much of our lives feel out of control and I think you’re right, about being in control more when I’m alone and that is why I appreciate it so much. You’ve really just helped me understand Sandra, thank you!
Hang in there my friend, and know that we’re here for you. Sending much love and best wishes to you!
June 5, 2018 at 3:36 pm #12913Joyce DouglasParticipant
Hello Charlene and Sandra. I know of what you are speaking about. It seems so hard to just feel normal never mind having to explain it to others. I too feel good when alone, especially when I need to cough some or just veg out. I
do enjoy reading the posts from other IPF survivors (I call us ALL survivors, because we are surviving in spite of having a terminal illness). Some give us good hints on how we can overcome something, others give us a boost of self confidence because we are able to do more than we thought we could. Others give us a chance to help them with hints on how to take their medication, control coughing and deal with the mucous. Every time we can help others we feel good and feeling good is how the dopamine is made in our brain. Too bad we can’t just turn on a tap and get a good dose of it isn’t it! Oh well, just take a few deep breaths (yeah, like we could do that!!) and pat ourselves on the back and say – Get at it gal, you know you are doing great. You two are such a great inspiration for others and we do appreciate each and every post you put on this Forum Charlene. You also Sandra. Love you both. One day at a time is all we need to do.
Cheers, Joyce D.
June 5, 2018 at 7:17 pm #12914
Thank you so much for writing and as always, it is wonderful to hear from you! I hope you’re doing well, and enjoying some time to veg out as you say, if things brings you joy because it certainly does me. 🙂
I agree about feeling good alone, I think it is mostly because I can just be myself and not have to worry about the looks/stares from others, or the offering to help (although I am grateful for this, it sometimes makes me question my independence) and I can also move at my own pace when I am alone. I enjoy the quiet as it gives me time to think, or allows me time to work on my hobbies which bring me joy as well. What do you enjoy most about time you can be alone Joyce?
I agree with you re: the enjoyment that comes from reading others’ posts… I am so thankful for the kind and generous contributions and sharing on this forum. Although I wish none of us had to be part of this community, I am certainly glad that it exists! I gain so much strength from others’ stories, and knowledge from their experience and I also agree, that it does feel good to be able to help others in return, doesn’t it? It would be so neat to all meet in person. I know someone mentioned on here once wanting to live in a small community of IPF survivors just because we all “get it”, and I’ve really thought about that person’s comment from time to time and how helpful and supportive it would be. I am so glad you’re part of this community Joyce!
Thank you for such kind words, I will treasure them dearly and they have really helped lift my spirits tonight Joyce. Thank you for helping support me when I need it! Sending so much love back to you <3
June 7, 2018 at 9:33 am #12948Sheila BlanchardParticipant
Hi Charlene Sandra, and Joyce, Charlene I congratulate you,I can’t imagine what it must be like to be so young with this disease, at least I am on the tail end of my life. In regards to this topic , I find myself wanting to be alone more and more.I have taken up trying to do sketching (I have never before done this)anyway we will see how this turns out.Now for relationships, I find I keep most of my emotions to myself and smile on the outside,because when I mention something about what I am feeling I am told to try and feel better because so far I am not on oxygen and at first seemed my IPF was progressing slowly. Inside I feel stressed,as you know I had to give up my cat and can’t help feeling a bit of anger and bitterness,and yet my daughter has given me a place in her home so I should be grateful and I am but can’t help how I feel.Anyway I try to pass the time by knitting reading ,sometimes cooking and now sketching also a little exercise.
June 7, 2018 at 1:28 pm #12960
Thanks again for writing, and for your kind words. Personally, I believe that living with PF is difficult at any age! I hope you continue to have many good days ahead and find yourself part of our online community for a long time. 🙂
Sketching sounds like a nice hobby to pick up and try. Are you watching any technique videos on YouTube or just kind of drawing and sketching as you go? Either way would be great I am sure. I recently tried to learn the guitar (again!) and am fully reliant on online tutorials but it is assisting me with my learning. I really enjoy these quiet hobbies that I’ve picked up and welcome my thoughts in the quiet of my own home. What about the adult colouring books, have you ever tried those? I also like doing these as they require so much attention that my mind doesn’t have time to think about things.
I think so many of your internal feelings are valid, and this is so hard when others cant see those things in us. I’ve had a few tough weeks of trying to keep those feeling inside, but they ended up external through anger, tears and frustration on many occasions. Thankfully I am starting to feel more like myself now which I am so glad about! The most important thing I think is to be authentic with how we’re feeling, and whatever platform we do that on (whether it is a close friend, family member or through this online community) is our choice but good for us to not have to “hide” how we’re feeling all the time.
Sending you much love and strength!
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