May 12, 2020 at 12:50 pm #25066
In a recent column I briefly mentioned how in the past I would take mental health breaks from PH. I would like to elaborate on this more and discuss it with you.
My family would take brief breaks from awareness and advocacy during times when my son was either very ill or doing very well. Compliance remained important of course, meds were taken and appointments kept, but we would take a rest from PH discussions and any PH “extra” that wasn’t required.
The breaks were more commonly taken when he was doing well, especially knowing how quickly the good days could pass. We would try to clear our minds from the realities and what if’s and try to enjoy a taste of normalcy. It was our way of making sure the disease wasn’t defining us and not miss out on fully enjoying good days because we were too focused on our worries.
Do you take PH breaks sometimes? What does a break look like to you? How does it help?
May 14, 2020 at 7:59 pm #25180
@colleensteele, this was another fantastic piece from you! I think that we all tend to take these mental breaks from PH. Some days this may be easier than others. Yes, when I am feeling good is the best time for me to do this.
I know that for me, I tend to go through stages. I will work on awareness for a while, but then I tend to step back a little.
I love that you and your family do this. Do y’all go somewhere or just disconnect and enjoy one another at home? Do y’all do anything like this on his transplant anniversary or date of diagnosis?
I also could see how mental health breaks could be beneficial during our worst days.
May 18, 2020 at 11:09 am #25213Robin TaylorParticipant
Yes. As a matter of fact, I have been for about a year, and that’s why I haven’t contributed here in a while. I was diagnosed with PAH three years ago. I was immediately put on 4L O2, 24/7 and titrated my way up to the full dose of three PH meds. PH consumed my daily thoughts, I read every study, joined here and another FB support site. While I was very informed, I was also depressed from the “wholeness” of all things PH. I’m sure my husband, family and friends got tired of listening to it. I gradually “let it go”. It doesn’t consume me the way it did in the beginning. I don’t feel like it’s a true death sentence anymore. My medicine and O2 therapies work (for now), and I feel more like the old me. No longer do a succumb to exhaustion (everyday), I have much better mental clarity and my stamina is acceptable. So now, I’m just living life and trying to make every day count. ❤️
May 18, 2020 at 3:33 pm #25272
@jenc when Brad read it he commented that patients tend to take breaks when they get really sick but neglect to when they are doing really well. They don’t think about the value of stepping back for a while and enjoying the moment of wellness.
During Cullen’s PH days there were times when I could feel myself becoming overwhelmed, not just with his health but worrying about all our PHamily. It is so easy to allow the disease to consume your life. Obviously, I wouldn’t be a PH forum moderator if I didn’t see value in support groups such as this. They are so helpful and supportive but sometimes you need a break, and that’s ok. It’s ok to say, “I’m going to take my meds and do what I need to do to stay well, but I’m going to a break from talking about PH for a little while.”
We go to a lake for a week every summer with a large group of friends. The first time we went Cullen made the rule…we do not bring up PH or Transplant in any discussion other than to tell people I am doing well. So, that’s an example of when we take a mental health break form it all. We don’t do any form of social media at that time either. Total break!
May 18, 2020 at 3:48 pm #25273
@rltaylor thank you so much for sharing your reasons for taking PH breaks. I think when you are diagnosed you have no choice but to delve into every resource you can find about PH and discuss it with whoever will listen. But once you have really grasped what you are dealing with and have found balance in your treatments, it’s beneficial to give yourself a rest. Check-in with PHriends, spend a little time in the forums or other support group, but then get on with your day. I think the best way I can put it is, PH does not have to become your full time job but when you feel like it is, that’s a good time to take a break.
I’m so happy to hear that you are experiencing a better quality of life, both physically and emotionally. I also than you for sharing that because it’s good for our members to hear positive updates.
May 19, 2020 at 7:39 am #25278
Hi @rltaylor, you are so not alone with taking breaks. I think that when we are first diagnosed, we do want to learn all that we can about PH. It is our new life. But, it can also feel quite overwhelming, and that is when breaks are needed, for me. I think that checking here and helping others who may need support is a positive way to stay involved. But, I also take mental health breaks from PH. AS I like to say, I have PH; PH does NOT have me!
I love the forums, and now I am a moderator here. I learn so much daily, but I do take still take breaks. If I sat here all day and did nothing but PH related stuff, my life would be dreary, and I am sure that my family and other friends would notice.
I am happy to hear that you are feeling better and more like your “old” self. It often takes time, and I am so excited that you shared this with us. Welcome back and certainly do not stop taking those mental breaks away from PH. Do something that you enjoy for yourself or with loved ones.
May 19, 2020 at 7:46 am #25279
@colleensteele well said! I do remember Brad saying that. I do find that right for myself, too. But then again, when I am feeling my best, I do more other things, too.
Like you, I do value the support from the forums and support groups. I think that we must, or we would not be moderators. But, as you said, we also need to take mental health breaks. It can all become overwhelming. I, too, worry about all of my PHriends besides my health.
I love the lake trip! Cullen made an awesome rule and the perfect way to get away and take a mental break. Are y’all planning to go this summer? It is so crazy how fast the warm months are coming upon us. Thanks for sharing that. I want to plan a small weekend getaway with my hubby soon to a local lake or somewhere. But, I have yet to look at Airbnb still.
Cullen sounds like such an “old soul” in a young man’s body-Hehe. I enjoy the stories and how he thinks.
May 19, 2020 at 10:40 am #25282
@jenc thanks. Yes, Cullen is an old soul. He was kind of leaning that way even prior to diagnosis but PH definitely increased his maturity. I don’t think we will be doing the lake this year not just because of Covid but our friends might be selling the cabin. Maybe we will come up with another plan.
May 19, 2020 at 4:55 pm #25290
Oh @colleensteele, I would love to meet you and your family one day. Cullen sounds awesome.
I’m sorry to hear that your friends are selling the cabin. I hope that y’all come up with another plan. I’m hoping to plan a short weekend trip soon. I love being by the water; it’s so peaceful.
May 20, 2020 at 4:38 pm #25307
May 22, 2020 at 11:47 am #25319
Yes,@colleensteele, that is a huge part of the PH community. It is even more exciting when you have known these people for years and then have the chance to meet them. I have met some amazing PHriends and hope to meet many others. I would love to meet y’all. Let’s not forget to add to our @brittany-foster.
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