May 11, 2018 at 9:54 am #11695
With pulmonary hypertension, I find that I need to give my body a lot of rest during the day and have lots of down time. Lately, I have been struggling more with my lung function. Part of my condition stems from restrictive lung disease and my lungs aren’t getting the air in and out of my lungs as they should on their own.
After visiting with my doctors yesterday, I am getting my BIPAP machine next week and am told to use it as much as possible during the day and all the time at night for central apnea. They hope that this will help my lungs and make me feel better during the day when I have it off.
When I have a lot of down time, I do a lot of thinking. Usually this causes some extra anxiety for me. I question about the state of my health, become more aware of exactly what my body needs and the symptoms I am experiencing. These feelings can get very overwhelming, so I love a good distraction.
When you have down time, does your anxiety/mental health take a toll on you? Are you aware of your symptoms more when you’re resting? Do you look for distractions during this time? How do you distract yourself? Do you have a hobby that you enjoy?
May 11, 2018 at 5:10 pm #11699Beverly RepouilleParticipant
Oh, this is a two-edged sword for me. I do OK with this during the day. I stay busy on the computer usually with games, puzzles, coloring, surfing the web, and helping people with their family history. At night is where I have problems if I’m not careful. I used to try to be in bed by 10 pm so that I could get about 7 hours of sleep. I wasn’t usually tired at that time, so I would lay in bed for an hour or two and my mind would go round in circles about my health. And then I would wake up every hour or so all night. It was awful! I’ve finally figured out that I fall asleep almost immediately if I wait to go to bed until I’m really tired (usually about 11:30 or 12). I also sleep pretty much straight through the night. The only down-side is I only get about 4 or 5 hours of sleep which makes me sleepy during the day.
May 11, 2018 at 5:18 pm #11700
Thank you for the response Beverly ! I agree that distractions do help a lot during the day. They even have an app online for coloring and drawing that I want to try out ! Puzzles are a great distraction too and I feel like I haven’t done them in forever.
Night time can be tough and I’ve experienced racing thoughts at night before too that keeps me up. And it almost makes things worse for me when I don’t get a good night sleep. I find myself napping a lot during the day when I don’t get as much as I should. Sometimes I’m just not in a deep enough sleep to get the rest i need.
June 5, 2018 at 2:29 am #12055Raven BaksterParticipant
You know marijuana can cure some of the illness including my depressive disorder and anxiety, I am suffering it for almost 2 yrs now since my 1st born child past away. By the way, it happened when I am 16 yrs old. Yes, I am very young at that time. That’s why i don’t know what will happen to me that time. I can’t really imagine why she left me that fast. I know its kinda weird but I try to use MJ as my relief for what happens to me and I think it helps me a lot just what I read on this article https://www.worldwide-marijuana-seeds.com/blogs/marijuana-news/cannabis-as-medicine
June 5, 2018 at 5:04 am #12063
Thanks for the link to the article. I know others who use marijuana for medicinal purposes. Unfortunately, marijuana and feeling lack of control from it leaves me feeling even more anxious. It’s like I get the opposite effect from it. CBD oil works wonders for me and my pain management though! Have you ever tried that too? Glad that you found something that helps.
June 7, 2018 at 12:53 pm #12108KRISTINEParticipant
CBD is great for my pain, however, like Britt (Hope I can call you that) the actual marijuana does the opposite for me too. It makes me nervous and paranoid with no relaxation at all. What’s weird is 35 yrs ago I did not have that reaction on “pot.”
Yeah I totally flip out at night with my thoughts racing, how unfortunate that our thoughts can’t do something productive. I am relatively new in dealing with this, and still doing a lot of research and trying to gather information, too bad my memory (Short term is AWOL) because I can’t remember so much of what I learn. During the day I stay as busy as possible with distractions. Gardening, coloring, jewelry-making, and other various crafts. I am still trying to adjust and recognize PAH for what it is those “bad days” everyone mentions. For instance I went through a period where my O2 sats was 73 and had kind of a few bad days, I was convinced I was dying much sooner than expected. So I started the process of trying to figure out what will happen with my dogs, my house, etc. etc.
Let me give a quick background best term I can think of to describe my situation. Currently I am employed as an office manager. I have no health insurance, I do have a sliding fee card through a community health center where I live, but it doesn’t help much with this condition. Don’t misconstrue my meaning. I feel very blessed and appreciative to have that discount card. Lastly I live in high elevation. (Colorado) I have 4 dogs, 1 cat and I live alone. No kids been single for longer than I care to count the passing years. So with that being said it is very easy for me to get caught up in the negative thoughts about this condition. I battle depression also which recently came once again to the surface with the realization that it ain’t gonna get any better. This time some prednisone, antibiotics and a couple breathing treatments ain’t gonna be the magical cure-all. Nope, not this time.
Hope this wasn’t too long.
June 7, 2018 at 1:00 pm #12109
Hi Kristine ,
No response is ever too long ! Feel free to get out what is on your mind and what you are thinking about. I know firsthand how scary this illness is with all the unpredictability of the symptoms. For me, that’s the hardest part and the hardest on my anxiety because I feel a lack of control with my body. This also is triggering for my depression and hopeless feelings that many of us experience. I find that receiving therapy once or twice a week if needed is so helpful! We work on ways in which I can have control through all of this. I am also on prednisone, frequent antibiotic use for recurring chest infections and do breathing treatments daily. We seem like we have a lot in common.
Know that you will always have support from this community and feel free to talk about any topic that is of interest to you and to continue to be a part of the forums. Having a space like this filled with people who understand is so helpful and comforting.
June 7, 2018 at 5:59 pm #12121KRISTINEParticipant
YOU CAN CALL ME KRIS. I WAS A LONG TERM SMOKER, I ALSO HAVE A COPD DIAGNOSIS WITH THE PAH, AND MY PAH IS IDIOPATHIC. WHAT REALLY FREAKED ME IN THE BEGINNING WAS REALIZING ALL THE YOUNG PEOPLE AND BABIES AND PEOPLE IN THEIR 20’S AND 30’S WHO HAVE THIS CONDITION. I WAS SHOCKED. I REALIZE I SMOKED AND EVERYONE IS AWARE OF WHAT SMOKING CAN DO. FOR YEARS THEY COULDN’T TELL ME IF IT WAS COPD OR ASTHMA. I EVEN WENT FOR A BUNCH RESPITORY EVALUATIONS AND TESTING LIKE 10 YRS. AGO AND THAT DR. DIAGNOSED ME WITH ASTHMA, COMPARED TO THE DOC I HAVE NOW THAT DOC FROM 10 YRS AGO, WHO AT THE TIME WAS ELDERLY AND NOT REALLY UP TO DATE WITH STUFF EVEN 10 YRS AGO. (SEVERELY ELDERLY)
SO IT’S CLEAR THAT BRITT SEEMS LIKE A VERY STRONG GLUE THAT HOLDS THESE MESSAGE BOARDS TOGETHER, A COUPLE OF OTHER FOLKS ALSO SEEM REAL ACTIVE HOLDING THESE BOARDS TOGETHER. I HAVE A QUESTION THAT DOES NOT PERTAIN TO THIS TOPIC, BUT, YESTERDAY I WANTED TO POST ON THE BOARD ABOUT SEROTONIN AND THE POSSIBILITIES OF HOW IT CAN RELATE TO PAH IN THE FUTURE. IT WOULD NOT ALLOW ME TO POST, AND I WAS SIGNED IN. WHY AM I UNABLE TO POST THERE? THERE WAS ANOTHER ONE ALSO BUT I DON’T REMEMBER WHAT THE OTHER BOARD WAS ABOUT.
ANY OTHER ADVICE FOR THIS GROUP THAT WOULD ASSIST ME IN PROPER PROCEDURES ETC. WOULD BE WELCOMED.
WHEN I FIRST STARTED RESEARCHING THIS DIAGNOSIS I REMEMBER A PRELIMINARY STUDY RESULT THAT SAID GOING ON SSRI ANTI DEPRESSANTS CAN ACTUALLY EXACERBATE PAH SYMPTOMS. THEY SAID IF YOU ARE ON SSRI’S THEN GET DIAGNOSED IT IS OK. THE DID SAY THAT THIS IS PRELIMINARY AND THAT MORE STUDIES WOULD BE CONDUCTED. NEEDLESS TO SAY THAT WAS ENOUGH TO LEAN MY DECISION TOWARD DEALING WITH THE DEPRESSION SIDE OF THIS WITHOUT SSRI’S. I HAVEN’T NEEDED THEM FOR YEARS LUCKILY, BUT IF EVER WAS A TIME I NEEDED EM NOW WOULD BE THE TIME.
June 7, 2018 at 8:22 pm #12127
There is definitely a lot of diagnosis that you are managing on top of the PH! It must be frustrating to not get a clear answer. I know how it feels to feel like you just hop around from different diagnoses. As long as they are treating me and my symptoms I could care less about putting a label on a condition! I just want to feel better.
If you go to the forums list you see different forums covered. The one you are talking about might go best under the treatment of PH that talks about different medications and people experience with it. Theres an area where it gives you the option to add a topic so you would put a title and then write something to start that conversation about the topic. Similar how this forum topic was started.
- You must be logged in to reply to this topic.