August 7, 2020 at 4:14 pm #26629
It’s no secret that living with PH can be exhausting. But, lately, with all going on in the world, working a few hours per day(which I am grateful for), and life, I have found that I have some debilitating fatigue.
One would think that this would be as the day goes by. But, some days, I wake up feeling this fatigue. I have concluded ( yep, Dr.Jen, hehe) that it is a combination of stress, anxiety, and chronic diseases all bundled up in one.
What about you? Have you noticed an increase or more debilitating fatigue lately? If so, what helps you? Rest is, of course, an option, but some days, that is never enough.
August 7, 2020 at 6:06 pm #26634DawnParticipant
It’s really odd that you posted this today @jenc. I woke up this morning (after hitting the snooze button on the alarm 3 times) feeling like I could use another 6 hrs of sleep. I was asking myself why I would feel so exhausted because I didn’t feel like I over did yesterday and I wasn’t too late getting to bed. I had a pft test yesterday, and the technician asked if I use oxygen when I’m just sitting. I explained that I usually don’t, unless it’s a ‘bad’ or ‘off’ day with my breathing. I can’t say why those off days happen, any more than I can say why I sometimes wake up like I did this morning. As long as it’s only a day or two, I just let myself take it easy and get through it. I’ve also had this huge fatigue hit me in the afternoon and early evening.
August 10, 2020 at 4:42 pm #26660
Hi @dawnt, I am sorry to hear that you work up feeling this way this morning. But, I love your positivity and plan. I, agree, usually, if it is a day or 2, I can deal with it. It is when it lasts longer than 3 days that it becomes too much for me.
PFTs have always been exhausting to me. Does anyone else agree? This may be another important topic, thanks @dawnt.
August 11, 2020 at 10:24 pm #26683sherman jaffeParticipant
I feel more exhausted because I am trying to be more active because it’s summer, outside is the best place to be to avoid the virus and my family is kayaking, biking and barbecueing. However, hot weather,humidity, and PAH do not mix. Add in my age (74) and Fatigue sets in after 15 minutes. Not so much with barbecueing.
August 12, 2020 at 2:00 pm #26687
@jaffesj hot weather and humidity tends to have a real impact on PH. Many of the medications PHer’s take are not sun friendly so that plays a part too. I love how active you are with your family! I’m sure you want to participate in their excursions 100% but you do have to be careful and moderation is key. I’m sure I don’t have to tell you the importance of resting when you need to and stay well hydrated. Shade is your friend if you can find it and if not, wear a hat and sunscreen.
I sympathize with your frustration. I know from experience from watching my son on hot days that even moderate activity would wear him out, but over-doing it could put him down and out for days.
Where is a favorite spot that you and your family like to visit on summer days?
August 12, 2020 at 3:17 pm #26701
Wow, @jaffesj, I can understand the frustration of wanting to be outside and active with the family. Sadly, the heat and humidity are not a good mix with PH.
It sounds like you have an active family, and I love that! I know that being there, even if you are cheering them on, is helpful, and they too know that you want to do it all.
My hubby and I have been planning to BBQ the last few weekends, but it has been so hot and humid here in Texas that we decided we rather stay in the AC.
I hope that you are taking AC breaks, rest periods, and drinking water as you are allowed. Dehydration is common in the summer months, too.
I am impressed with how active you are at your age with PH. Are the BBQ master in the family? What do you like to BBQ?
August 12, 2020 at 4:18 pm #26702sherman jaffeParticipant
Actually I have been biking and kayaking with them. Electric powered bike piece of cake and the kayaking early before it’s hot. I also make sure the ozone levels are low. Fortunately at my age I have conceded that I am the master of nothing. Makes it easier to give up the tools. PAH makes you quite humble -know your limitations and you can more easily deal with it.
August 13, 2020 at 1:22 pm #26710
Hi, @jaffesj, I think that you sound quite like the master of many things. You are doing an amazing job of staying active with your family. I have rented an E-bike a few years back. It was fun and such a freeing experience. But, I underestimated how much it takes to hold up and stay on a bike. I think it was my lack of activity. I was down for a few days afterward.
I am hoping to eventually purchase an E-bike and start off slow and build up my stamina. You are inspiring me. Thanks for sharing this. You are doing awesome!!
August 13, 2020 at 3:10 pm #26715Carol VolckmannParticipant
Each and every day it seems utter fatigue sets in about 4pm. Like you Sherman I have always been an active person. Though a couple years older than you I still try and keep up doing activities I love. It has been particularly difficult for several months due to bowel incontinence. This coming week I will have surgery to implant a stimulator that is suppose to help. I sure hope it will so I can get back out there. Fortunately I live in the Pacific Northwest so am not bother with really hot and humid weather, but do have to stay out of the sun! No matter what i do or don’t do fatigue sets in every afternoon. I try to let it be, read a book to take my mind off it.
August 13, 2020 at 4:43 pm #26722
Hi @cdvol3gmail-com, I apologize as I did not realize that you were having such an issue with bowel incontinence. I can only imagine how difficult this must be for you. I am grateful that you will have a stimulator place next week. I am keeping you in your thoughts and prayers. Please keep us updated once you have this surgery.
Stay safe, and take care of yourself-hugs from Texas.
August 13, 2020 at 4:52 pm #26724Carol VolckmannParticipant
Hi Jen, no apologizes necessary! You have enough issues but many thanks for your kind thoughts and prayers. You are in mine too. I am sure Monday cannot come fast enough for you. I hope that you and that sweet husband do something special this weekend and tip your glass and share a gin and tonic if that is your pleasure! HUGS!!
August 15, 2020 at 9:29 am #26753SandyParticipant
I’m so glad that you brought this up also, Jen. I wake up feeling exhausted most mornings . . . not that hop out of bed, charge into the day kind of person I used to be. I think at 75 years of age, the current condition of our country, the pandemic, and PH have just worn me down. I’m an avid gardener and I look at all of the weeds in my flower beds, want to go pull them, and just don’t have the energy or the will. Like you, I really think it’s the bundled effect of physical, emotional, and environmental stresses. I miss being with people and gathering so much nourishing energy from helping, laughing, working together. It’s just a tough time if you’re a social person and that definitely adds to my fatigue.
I’m glad to know that sun is not a friend of PH folks and some PH meds . . . didn’t know that . . . thought it was just me being whimpy.
August 17, 2020 at 1:52 pm #26768
It certainly is not your age, I m in my 40s, and can relate. I hope that makes you feel better, hehe.
I do agree, it can be a bit of everything together. It certainly has been challenging times for us all.
I hope that maybe you can get out and do a bit in your garden in the early mornings or evenings. I know I sometimes will sit on an outdoor pillow and pull weeds in my back around the pool. Of course, not when no one is home. I may never get up, hehe. But my hubby knows that me helping a tad is making me feel better, so he lets me do it.
I can bet that you are far from wimpy! Maybe when Fall rolls around, you can enjoy your garden a bit more. Yes, please be careful and water sunscreen, when you are outdoors. I bet you have a cute sun hat that you could wear.
August 17, 2020 at 4:58 pm #26772SandyParticipant
Thank you everyone for sharing about this topic. It is very, very helpful to hear that you experience similar fatigue to mine. I think I’m still being too hard on myself, thinking I’m being lazy or whiney when I can’t perform the same way I used to. I’m hearing from all of you that there is a learning curve to managing PH… and I’m just in the beginning of that curve. I’m going to work at being kinder to myself and at enjoying the things I can do rather than constantly lamenting the things I cannot do any longer.
Thanks everyone. Be well.
August 17, 2020 at 5:06 pm #26773
@sandydenn oh no Sandy, you are far from being alone with your fatigue. My son was in grade school when he was diagnosed and there were days when he had to come home because fatigue was getting the best of him. I’m sure you still feel aggravated by this symptom but hopefully it helps to know you are not alone with the struggle.
August 18, 2020 at 9:52 am #26782
@sandydenn, you are so not alone. I am grateful that you found us and can see how PH affects others. This makes things a bit less confusing, especially when being newly diagnosed. As we say in the PH world, learning our “new normal” is one of the biggest struggles.
I am hopeful that with the right treatment and dosage, you will find that you will have better days. Those are the days that you can take advantage and enjoy a bit more. In the meantime, as you said, be kind to yourself and offer that bit of compassion that you provide others.
Would you say the fatigue is the most bothersome symptom for you? I know that I deal with fatigue daily, some days are worse than others, but it becomes frustrating when it comes nonstop with no relief.
Take care of yourself and take it one day at a time.
October 1, 2020 at 2:27 pm #27518MartinaParticipant
I am on full disability. I feel extreme fatigue every day. Today I practically slept almost all day in my chair with TV on.
October 1, 2020 at 3:02 pm #27522
Hi @robert, it has been a while. How are you doing besides fatigued? Are you still on Uptravi? I am fatigued and on SSD, too. But I am grateful for the good days. What does your PH team say?
I often “veg” with the tv, although I do not always fall asleep. I have started trying to keep busy when I can and rest at other times when I know my body needs it. Is this every day or just today for you to sleep most of the day?
October 1, 2020 at 7:34 pm #27532
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