August 13, 2020 at 9:34 am #26705
I was diagnosed with Idiopathic PAH in January of 2016 and was doing great! Going to the gym 5 days a week, eating right and really no bad episodes or symptoms. My pulmonologist would call me his star patient and I know it may sound silly, but sometimes I almost forgot I had PAH. Last December I was really sick with a flu-like illness and never quite got back to 100%. Yesterday I started titration on Selexipag. I fought getting on new medication/therapy. I felt like I was a failure. Like I didn’t work hard enough or want it enough to get back to my previous “normal” I know this disease will progressively get worse and that a lot is beyond my control, but I always feel like I should be doing more. Does anyone else ever experience feelings of failure?
August 13, 2020 at 1:23 pm #26711
@rgiustin I am so sorry! This must be a common feeling that PHer’s feel when symptoms worsen because my son’s doctor addressed it when telling him he needed a transplant. He opened the discussion with, “You did nothing wrong and everything right. You have fought hard and needing a transplant isn’t any sort of failure on your part, it’s the disease.”
I understand how disappointed you are about needing more aggressive treatment but hopefully it will help you and your quality of life will improve again. Please keep us up to date on how you are doing. We are here for you.
August 13, 2020 at 1:58 pm #26713
Thank you so much for the response. Sometimes it is hard to talk to family about these feelings. I think it is difficult for people to relate if they have not been in a similar situation. It’s great to have this outlet and to be a part of this community! It makes me feel more like my truly “abnormal” life is more “normal” (whatever that is!)
August 13, 2020 at 4:51 pm #26723
Hi @rgiustin, I am sorry to hear that you are feeling like a failure. That is far from the truth. But, I, too, have been there. Anytime I have needed a new medication or even a hospitalization, my mind starts thinking like this. It is nothing that you have done, and my PH team reminds me of this often. But, I think, as you mention, it feels like you have lost control over your life. When in reality, learning about the treatments and finding the right treatment and dosage often offers some relief.
I have been living with PH since 2005. I am also on Uptrav(selexipag). Please let me know if you have any questions while titrating. I am hopeful that this will help you get back to enjoying some of what you have been enjoying. Feel free to share your feelings anytime; that is what we are here for, supporting one another.
August 15, 2020 at 9:25 pm #26757
Hi @rgiustin. I’ve felt like this many times in my life! I think part of it is that we human beings have a hard time accepting there are things we can’t control or have no way to ‘fix’. I think feeling like a failure makes us think that if we just try hard enough/long enough we can have the control that we wish we could have. I had ‘something’ in January of this year, the doctors weren’t sure what it was, that severely affected my breathing and in all honesty scared me a lot. I missed work, tried to go back, lasted about an hour, was off a couple more days after that. I was absolutely exhausted, and felt like it was a pre-view of what could happen as my ph progresses. I try to stay in the present as much as I can, aside from making necessary arrangements for the ‘what ifs’ that may come in the future.
PH and the changes that come with it are not the fault or failure of anyone who has it. Same as with any other medical issue. When I have difficulty believing that for myself, I use the ‘trick’ of thinking how I would advise someone I loved that had ph or another serious disease. I would want them to do their best to fight, but couldn’t ask more of them than that. If I believe that for those I love, which I do, I can’t ask more than that of myself either.
Like you, I don’t fully disclose my feelings/worries with my family because it’s hard to explain how a disease like this effects you at times. And, I don’t want them to worry about me more than they already do. These forums have been such a god send for me, because I can put out exactly what I’m feeling and/or dealing with and not worry about judgement.
August 17, 2020 at 1:40 pm #26766
Hi @dawnt, you do a fantastic job of offering support to others. I hope that you also benefit from the forums as much as you help others.
You are correct; we want to fix and be in control of everything! I struggle with that all of the time. It often adds to my other stress and anxiety.
I love that you mention that you try to stay in the present, as much as you can. I, too, struggle with that and work hard to keep that mindset. Do you find it tougher for you on days when you are feeling your worst?
I think for me, writing my column offers a ton of information to my friends and family that I would not otherwise mention. I have always kept my problems in as I was so bust helping others. I am still working on this in my therapy. Do you talk to anyone besides your therapist, Dawn? Fur babies count, too, hehe.
August 18, 2020 at 11:31 am #26790
@jenc, I absolutely find it tougher to stay in a good mind set both on days when I’m not feeling my best and when things start to ‘slip’ with my depression. My therapist and I actually came up with a ‘rating’ scale, based on how my depression tends to flare up, and if I hit too high a rating number I know I need to ‘fess up and be totally honest about how I’m feeling before it gets too much a hold on me. It’s been working really, really well. Therapists have all kinds of rating scales, etc., but this seems different. The rating scale is in my words, based on how my depression usually affects me physically/mentally, and it seems easier to use my own scale to say ‘I’m still ok, I can get through this’, or ‘I know where this is leading, I better reach out and say something to my therapist’. I do talk with other people besides my therapist. Talk to my boys (my dogs) all the time, they and the horses are great listeners! I also talk to certain friends/co-workers, and family, but it depends who I’m talking with just how much I share. And, of course, I talk here on the forums.
August 18, 2020 at 1:19 pm #26793
@dawnt and @jenc Thank you both so much for your insight and input. @dawnt that is a great way to look at it. To step outside yourself and think/act as if you are advising a loved one. After all we definitely should include ourselves in that category! I guess we are our own worst critics a lot of the time! I need to rethink that and try to be my own cheering section instead! Celebrate the little accomplishments and don’t stress over things I can’t change!
August 18, 2020 at 3:04 pm #26796
@dawnt, yes, I tend to struggle more when I am feeling my worst. I like that you shared your rating scale. My therapist, just last week, told me to start doing a similar scale with my anxiety. I know when I need to step back and do something that will help me relax and decrease my anxiety before it gets worse. It is a bit like pain control, we must nip it in the bud, so they say before it gets too bad.
Has your rating scale been helpful?
I am grateful that you are talking to friends and family, like you, I do not share all with them either. I probably share much more here in the forums. I know that y’all can relate, and this is a judgment-free zone. I love that you mention your “sons” and the horses. They probably are all great listeners. My Sasha tends to talk back at times, though, hehe.
August 18, 2020 at 3:09 pm #26797
Hi @rgiustin, you are welcome. Just know, it took us time to do these things, too. Still, I tend to be better at offering advice than listening to it myself. Aren’t we all?
This is why I find the PH forums helpful because we can help each other through these days when they need this gentle reminder to be patient with yourself, too.
I love you, “celebrate the little accomplishments.” We have a Weekly-Win subforum that is intended to remind us all to celebrate those little weekly wins. I will attach the link to that here. Feel free to share your accomplishments, big or small, each week.
September 28, 2020 at 10:16 am #27428
Hi @rgiustin, how are you coping now? Are you feeling any better as far as accepting the changes and being patient with yourself?
@dawnt, how about you? How are things going mentally for you right now? What has helped you the most during the pandemic? You always are such a huge support here in the forums.
September 28, 2020 at 11:00 am #27429
@jenc Thank you so much for checking up on me! I AM doing better on that front. I realize that even though I might feel that I’m not at my optimum potential right now, there a lot of people struggling more than I am. I’ve been trying to take it easier on myself from an expectation standpoint and realize that everyday is a victory! The titration on the Uptravi it’s going great so far. This Wednesday I should go up to the highest dose. Already feeling an improvement with shortness of breath when climbing stairs. So that’s definitely a win for me!
September 28, 2020 at 2:47 pm #27434
I am so happy to hear that @rgiustin. I am on the max dose of Uptravi, and it has worked well for me. Climbing stairs is something that I no longer need to do, but that sounds like improvements. Each new day is a victory and maybe little victories even in one day. Celebrate them all; this is excellent news.
I look forward to hearing more after your titration on Wednesday. Being patient and kind to ourselves is a work in progress. We are here to support you.
September 28, 2020 at 8:52 pm #27438
@jenc, I’m doing well. I appreciate you asking. Mentally I’m staying very steady in a good place & have been for awhile. I’ve realized that working from home has been a huge break that I’m not sure I even realized I needed. I’ve always had ‘social anxiety’, because I’m pretty shy until I get to know people. I feel comfortable with people at work, but at times tend to worry that I’m not ‘good enough’ at what I do. Or ‘good enough’ in how I deal with co-workers. I get wonderful reviews from my supervisor, positive comments from co-workers, it’s just that doubt in myself that I grew up with. Therapy has helped immensely, but there is still that doubt that comes up at times. So, the thing that’s helped me most during the pandemic is that I’m ok being alone alot with my boys. I’ve always been a home-body, so working from home has turned out to be very peaceful and comforting for me.
@rgiustin, great news! So glad your medication is working and that the titration is going well. You’re absolutely right – every day is a victory! We continue our fight to live our lives as much like we want to despite ph or any other issue. And, perhaps because of ph & any other issues (physical or mental), we get to appreciate more than we took notice of before our diagnosis!
September 29, 2020 at 9:20 am #27443
Hi @dawnt, I am happy to hear that you are staying in a steady and good place mentally. I do think that you are not alone when you mention noticing things a bit better working from home. You say this notion about not being “good enough,” I do the same. I thought that it was after my diagnosis, but from old colleges, supervisors, family, and friends, I have learned that I have always been that way. I am unsure why but I am doing much better with this now. It continues to be something that I work on.
Self-doubt takes a lot away from us. I know it is not intentional. My therapist actually had me do an exercise last year. It was to wrote a note to myself and place it somewhere that I would see it daily. I used a post-it note, and wrote; I AM Enough! I read that each morning and every day for a few weeks. This type of positive affirmation helped me.
Please remember that you are enough, too. Now, I find that with PH and working a little, I try to overcompensate and work myself ragged some days because I do not want to be known as a “slacker.” Setting boundaries and working only when I should be not 24/7 while awake has been a big help. Do you find that you are working more from home because there is nothing else to do? It sounds like you have made some positive progress since working from home. Kudos!
Taking each day as it is and listening to my body has always been a challenge for me. But, I am doing better and putting myself first, most days, hehe.
September 29, 2020 at 8:00 pm #27466
Hi @jenc, I totally get what you’re saying about that self doubt. Mine isn’t limited to work, but I think we all have self doubt at times. I’m so much better at not letting myself beat myself up too bad before I stop myself and remind myself that I’m human and humans make mistakes, have doubts, but can also learn from those things and do better in the future. I used to be absolutely brutal & plain mean to myself, and finally realized that self acceptance, self support, self love, being my own best protector works so much better.
I’ve actually not had an issue with sticking to my regular work hours. Tomorrow is another day, and anything I didn’t get done today can be done then. I have had an issue, at times, with taking the advice of my doctor at Johns Hopkins in working from home. Like you mention, I don’t want to be seen as a slacker or someone that abandoned their work team, or someone who isn’t doing my part. I’ve done pretty well with reminding myself that ph is nothing I want to fool around with, let alone my other health issues. That has carried over to trying to do all that I used to do before ph, at home, work and the farm. I’m learning that I can only push myself so far, then I really pay for it. It’s hard for me to say I can’t do something that I used to do easily, and hard for me to accept. I try to just keep focusing on how much I still can do – however slowly I may do it!
September 30, 2020 at 11:52 am #27475
Hi @dawnt, again, your words are powerful! Yesterday on my therapy call, I talked about self-doubt. She reminded me pretty much what you said, that we were often more brutal on ourselves than anyone else.
I am doing better with reminding myself that I am enough and whatever I can do today is that. I am not saying that I do not still have days when I do “relapse”. But, moving forward and learning to accept these things make a huge impact. Life is much more relaxing and less stressful when we can do this.
Before PH, I was always working and still find it difficult at times to say No to people, but have made great progress in the last year with this.
Are you still going to see the horses some?
Your support to myself and everyone here has made an impact, and I want you to know. It is not easy for some to share such details about their lives.
September 30, 2020 at 7:45 pm #27498
@jenc, thank you for the kind words. I do still go to the farm, pretty much every Saturday. I feel like I do very little on Saturdays, compared to what I used to do. I also started going out to help with evening feeding one evening a week, a few months ago. I used to help with evening feeding 2x a week, but for now I’m staying with just the one evening a week plus Saturday. I find just the one evening per week more tiring than I expected, but I’ve always loved the quiet of everyone munching hay and moving from pile to pile of hay. Even though the slices of hay come from the same bale of hay, the horses always seem convinced that the other slices are better than the one they’re at. I will keep going to the farm as long as I’m at all physically able, I can’t imagine not having the horses in my life.
October 1, 2020 at 11:32 am #27508
Hi @dawnt, I am grateful that you will still go to the farm and get that time in. Just by reading, I know that this helps you and something that also is therapeutic. Too funny about the horses thinking one slice is better than the other. I guess horses, too think “the grass, aka hay is greener, Hehe.
As I read this, I could remember as a child being around horses and the hay’s sound. It brings back many memories; I loved horses growing up and have not been around much in years; still, it came back.
Just remember that you are not the same as before and try to enjoy the days and times you are there. That is hard work, although therapeutic, it is work, too. Be kind to yourself. Thank you for sharing your experiences with us all.
October 27, 2020 at 11:58 am #27961
October 28, 2020 at 8:47 am #27990mike bennettParticipant
Hi @rgiustin. Just catching up with this thread, but you should know that you’re the furthest thing imaginable from failure. This disease can kill you, and failures don’t survive it. Since there is no cure, every day is a new challenge with PH. I’ve had the disease for 20 years. some days I don’t feel like getting out of bed. But I do. And when I do, it’s a win. Other days, I feel like i can conquer the world: I’ve got on my wetsuit and I’m water-skiing, or I’m travelling around the world for work. On or off meds, You’re going to have good days and bad. But as long as you’re winning; as long as you’re overcoming the symptoms of PH — which the meds will help you to do! — you’ll never be a failure. Hang in there. Better days ahead!
be well, mike
October 28, 2020 at 3:38 pm #27994
October 28, 2020 at 3:56 pm #27995
Thank you so much @mikebennett Hearing from all of you has helped me so much and given me insight into my own struggles and feelings through understanding the struggles and feelings of others. You sometimes feel like an island in “real life” because this disease is so rare. But when I’m on here, I don’t feel so alone. I am part of an archipelago! This community definitely makes the struggles more bearable and the victories seem greater! @jenc thank you so much for checking up on me! Doing well I’ve been on the highest dose of Uptravi for several weeks now and I’m feeling pretty good. Following up with pulmonology and heart failure clinic next week and having a pulmonary function test, so we’ll see what happens with that. Fingers crossed. As far as COVID, cases are going up here in North Carolina which makes it kind of scary to go to the hospital for appointments and tests but they seem pretty vigilant in protecting the patients. We just can’t let our guard down and hope that other people realize they’re not just protecting themselves but their loved ones!
October 30, 2020 at 11:05 pm #28012
@rgiustin you expressed life with PH and the support received from our members so eloquently. I enjoy hearing that others feel the same about the PH community. So many compassionate and helpful people!
When you have a chance update us on how the upcoming appointments and tests went. I’ll say some prayers for you.
November 2, 2020 at 12:56 pm #28027
Wow, @mikebennett! Your words are powerful and well written. I am certain that @rgiustin appreciates that also. I love this so much, Mike. You are correct, Noone here is a failure by any means, the tool opposite, in my opinion, too. Thanks for sharing such a heartfelt and optimistic post.
I am happy to hear that you are doing well on the max dose of Uptravi, @rgiustin. I am sending you positive thoughts and vibes this week to follow up with the heart failure team. The hospitals, especially the larger ones, are doing an excellent job of keeping their patients safe. Hugs and prayers coming from Texas. Let us know how things go.
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