Tuckered out

[jen-cueva]

Hi @brendad53, I prefer a “long-termer” instead of an “old-timer.” Hehe.

Either way, keeping my spirits up all the time is often challenging. As you mention, the walls often feel like they are caving in when it’s one thing after another. But, I look to those who support me to keep my spirits boosted. Of course, my family, friends, and my friends are included in the forums.

Other times, I take a break from things like the forums and social media when things are so busy. Taking mental breaks from PH and medical stuff is important, so time away, like being outdoors and at the beach is my mood lifter and helps me to reset.

In the last few months, my kidneys have had my electrolytes imbalanced. After Manny got home from work Friday evening, we drove down to the beach, had a cold drink, and sat on our blanket as we watched the sunset. We both planned to get in the water and take our suits. But, when we put our feet in, we decided it was too cold. But feeling that cold water crash upon my feet and the sunset was a great reset for him and me, too.

I know you take care of yourself. But those of us with caregivers know they, too, are affected. I think he’s been more worried than me about my kidney issues. So this was a reset so we could both start to relax and enjoy the weekend.

I’m sure others will lift their spirits in other ways, but talking to those who can relate is always beneficial in more ways than many realize.

[brenda-denzler]

Love the thought of the beach. It’s so hot here right now that it would be a mixed blessing to try to go. But maybe in a couple of months, when the temps are better and most people are at work and in school instead of on vacation?

[jen-cueva]

Hi @brendad53, I understand why you want to wait a little longer before heading to the beach. Here in our area, school begins in a few weeks, so I will also be happy when my local grocery stores are less crowded during the week.

I would not go to the beach in the South as often, especially with the heat and humidity. Here in SD, it seems the beaches are always busy with tourists. But I enjoy the winter months, too, which appears to be the least popular time.

How hot has it been in your area? I know in Texas, the summers were horrible for me the last few years. And that sucked because I enjoy being outdoors and the sunshine.

Talking to friends who relate and taking breaks away from all technology helps. Do you find reading to help you recharge? If it’s a fun read, I feel refreshed, and that also takes me away to another place.

[brenda-denzler]

I like to read, but I prefer non-fiction. I do have a limited number of fiction titles on my shelf, however, and in line in my Kindle app, waiting to be read. Right now I’m reading “Phenomenology of Illness” by Have Care and volume 5 of Jacques Vallee’s Forbidden Science–his personal journals. Vallee is one of the grand old men of UFOlogy.

The last couple of days here have started out remarkably cool for August. Into the middle or lower 60s, would be my guess. Low humidity. Amazing! I actually tried to mow a few long strips of grass yesterday before I realized that it must have already been mowed by some Good Samaritan, because it didn’t look like I was having much of an impact on it at all!

[jen-cueva]

Bless whoever the Good Samaritan is for mowing your grass, @brendad53. It’s delightful to experience cooler temperatures and reduced humidity. These conditions provide significant relief, especially when—having difficulty breathing.

How did you feel after attempting to do a bit of mowing? Did you observe any differences? Or did your breathing remain unchanged?

OMG, I have so many books waiting on my Kindle app. I bet you read through books at a rapid pace, though. I am such a slow reader anymore.

I am much better with short stories and essays. I tend to read many studies and medical journals in my free time. I need to start some of my fun reading.

[V.R. Peterson]

@brendad53, I’m so grateful to the person who mowed your lawn for you. That they did so anonymously speaks volumes about them. 💞

[Colleen]

@brendad53 I love hearing good Samaritan stories! That’s awesome! Someone noticed you needed a little help and provided it without wanting recognition. Two wonderful things happened…you received the help you needed and you know that someone out there is watching and caring about you!

[V.R. Peterson]

Believe it or not, @jenc, I prefer the beaches along the Atlantic coast more than the Pacific. In my experience, the Pacific ocean is colder than the Atlantic, and I much prefer colder temperatures. When swimming in the Pacific ocean, I always got too cold.

[Colleen]

@mamabear007 well…NJ girl here who has lived the past 20+ years in WA. I still prefer the Atlantic, not just for the water but also for the beaches! I’m so looking forward to hitting the Jersey shore when I move back!

[jen-cueva]

Hehe @mamabear007, our beaches are much colder than along the Texas Gulf Coast, too. This weekend we went with KK, but only Manny and KK got in as I was not warm enough to get in. I took in the sights and smells as I read my book on my blanket in the sand. It was a much-needed family day for all three of us. I’m hoping to have more in the upcoming months.

[Roger Bliss]

Brenda,

I think everyone gets “tuckered out”. My solution is to keep busy with things that take my mind off my illness. I try and stay as active as I can.

I kinda started a new plan this summer. Right now I am fleeing good and I am not going to let any doctor, any new med or procedure that might screw that up, unless it’s some type of emergency. They are going to have to wait till this winter to try new stuff.

I am doing a lot of doctor visits and non evasive tests (at least once a week and sometimes twice) to see whats causing things. It is really helping my peace of mind knowing I can keep feeling good this summer.

[brenda-denzler]

I like that, Roger. Having a relatively stable period and refusing to let non-emergency things threaten to disrupt it. Thanks. A good idea. Carving out an oasis of time when medical matters are not dominating it.

[jen-cueva]

Hi @wheeldog, well said! I echo that, and it feels so good to have a medical-free period, even if it is a brief period. This must feel so freeing after your long season of appointments and procedures.

It’s like taking a medical sabbatical, which I would think is a recharge period for your body and mind.

I’m happy to learn that you WILL seek medical attention if an emergency arises. This sounds like an excellent balance and something to strive for.

Say hi to Mary Ellen; I hope she is feeling good so you both can enjoy a brief sabbatical.

[Gayle Ward]

I’ve been in treatment for PH for 12 years. I have also been dealing with cancer and other illnesses. I know what you mean about one thing after another!
what I do to keep my spirits up by making sure I have something planned  that I can look forward to. Like getting my nails done.having lunch with a friend or going to a movie. Just something fun to look forward to. It gives me something to be excited about.👀

hang in there

[jen-cueva]

Hi @gayleward, you tend to enjoy the simple joys of pampering with nail time and lunches with friends. These are excellent ways to refresh and refuel our minds and body. Plus, we can feel like we are caring for our bodies that continue to carry us through the years.

I’ll celebrate 19 years of PH trearnents in February, so these little joys are much needed. As @wheeldog mentions, we ALL have times when we are “tuckered out.”

What movies have you seen recently? I haven’t been but once since COVID. How have you been feeling this summer? Thanks for sharing your tips.

[Bridget Reddy]

Hi! My name is Bridget I’m having a real tough time. I’ve been formally dx for about three years. I take my medicine and have a lot of breathing issues but my Mom died in March. I had to move. I moved on June8th. Since then I entered one hospital July 7th and had to have surgery due to an infection I have in my knee. I started out 3 years ago having a bad knee replacement I had a hospital acquired infection and since then had seven surgeries. Two total revisions. My only option if it gets worse is an amputation. I’ve been in one hospital from July 7th til July 31st then to a rehab center/nursing home. On August 5th I had to go back with sepsis and have been ICU for five days. The infectious disease doctor says it’s because of my heart/lung issues I’m susceptible to infections I currently have 5 more than I did before. This is the second time I’ve had c diff and it’s miserable. I also have pneumonia and urinary infection. I’m still not able to get around by myself so I will have to go back to rehab. I feel like giving up some days. It’s too much work.

[jen-cueva]

Oh dear @bridget58, I am so sorry about the recent loss of your mom. That alone would undoubtedly add to your mental and emotional health. Did you live with your mom?

Then it seems you can’t catch a break with these infections. Unfortunately, you are prone to more once you have a hospital-acquired infection. This happens more often than most think. Usually, the person doesn’t begin symptoms until they have been out of the hospital for a few days.

Germs from unclean surfaces can spread to healthcare workers, patients, or visitors. Common healthcare facility infections include UTIs, bloodstream infections, surgical site infections, and pneumonia. Hence, the infections you’ve encountered and are currently dealing with after being in the hospital and rehab facility.

I can understand your frustration with life and wanting to give up. But you must have some support there you can call or talk to. If not, the hospital social worker should find someone.

We are here for you to vent. But with all on your plate recently, I suggest you reach out for more help. I’ll share some links below.

Yes, your heart and lungs are not the best, but unfortunately, these hospital-acquired infections are easily transmissible.

Thank you for sharing. We encourage you to contact your medical team. I hope they are helpful:
• In the U.S.A.
– National Suicide Prevention Lifeline: 1-800-273-TALK (8255), to direct them to the Facebook suicide prevention page. Crisis support in Spanish is also available at 1-888-628-9454, and the deaf and hard of
hearing can call the Lifeline via TTY at 1-800-799-4889.
– Crisis Text Line: Text TALK to 741-741 for free 24/7
– The LGBTQ community can call the TrevorLifeline for suicide
prevention services at 1-866-488-7386.
– Veterans can call the Veterans Crisis Line at 1-800-273-8255 and
press 1. 24 hours a day, seven days a week.

Take care, Bridget. We are sending you extra gentle hugs, love, and positive thoughts. You can do this!

[brenda-denzler]

I have no words that could offer you much, Bridget, but I have virtual arms to give you a small hug with. (A non-confining, non-threatening hug!). I’m so sorry you seem to be caught in such a cycle of grief. What Jen said. Good words. Please hang in there and keep talking to us.

[Bridget Reddy]

Thank you so much!

[Colleen]

@bridget58 you are going through so much! But you are here, reaching out to us, and I think that is a good sign. Don’t doubt the fight you still have within you! Even though you haven’t met members here in person, know that we truly care about you and want to support you as best we can! Please feel free to vent, ask questions and update us as often as you wish! We are here for you!

[jen-cueva]

Hi @bridget58, how are you feeling overall today? Is today a better day for you?

We are here for you and hope and pray that you can find some small joys each day. <3

[Bridget Reddy]

Thank you for your support. I have a counselor but in the hospital and rehab I haven’t been able to see her. I myself practiced as an LCSW but you can’t treat yourself. I know I need the therapy and prior to this long medical nightmare I was seeing her once a week. Yes I am grieving a few things. The loss of my Mom, I lived with her for 7 years so I had to move so I’m grieving the loss of my home, too. I’m missing leaving the town that’s always been home as I moved to my sisters home and know no one here. I have a nice apartment but I miss my two cats. My sister tries to help. Thank God! Plus my health has been failing me more than ever! I’m sad mad glad happy scared angry and plain overwhelmed I hope it gets better. Some days are better than others. I’m working on staying positive. I appreciate the support!

[Carol Volckmann]

Hello Bridget, I am so sorry you have had so many losses, additional health issues and a move away from your comfort zone and having to leave behind your 2 fur children. You have to be tuckered out and overwhelmed.  My heart goes out to you and hope that each day that goes by you will be a little less overwhelmed and find something that brings a bit of joy to you. Going to a happy place doesn’t have to mean physically, you can go into your iwn heart and create that place. Just close your eyes, breath in the freshness and go there.

I am sending you lots of light and positive vibes, just let in the light and let go….

[jen-cueva]

Hey, @bridget58, I’m so sorry you have been experiencing so many losses simultaneously. No wonder you are dealing with anxiety and
depression with all of this on your plate.

Does the hospital or Rehab center not have an LCSW on staff? Would you be willing to see them while inpatient and continue with your usual therapist once you are out of there?

I’m grateful that your sister is trying to help. But still, being away from what you know as home must be challenging and quite isolating at the same time.

@cdvol3gmail-com talks about going to your happy place. Can you call old friends back in your home? Can your sister bring your fur babies into the rteahb to visit? I worked in nursing and know many places did allow that at times.

I worked with several amazing LCSW when I worked in nursing. That were always an excellent resource for me and my patients and their families.

We are here for you , too and hope you’ll continue to keep us posted. My thoughts and prayers are with you my PHriend.

[Ann Goddeyne]

I do a gratitude list everyday. I have a hard time feeling like my life isn’t the way it “should” be. I am often in a bad mood. And tired and sick of the medicine and getting it ready and going to doctors appointments. But I’ve found that if I focus on what’s right about my life. All the gifts I have. Things seem better. I find I’m stronger than I thought

[Colleen]

@ann-goddeyne I love that you maintain a gratitude list! I’ve kept a journal for most of my life and have found that to be a type of gratitude list for me. Taking a moment to write about your day makes you take note of things that you should focus on but don’t. I find it helpful to sometimes take a look at old lists and see how far I’ve come. Also it encourages me that I will get through current problems just like I did former ones.

Thank you for sharing!

[jen-cueva]

Hi @ann-goddeyne, I, too, have a gratitude journal that I start most days with. It does seem clouded at times with the busyness of meds, testing and procedures, and doctor appointments. But as I have always told my young adult daughter, there is always something to be thankful for.

Many days I have a list of three things I’m grateful for, and I add more. Thanks for sharing. Many I feel could use this, especially on the most challenging days.

[brenda-denzler]

I don’t maintain a written list, but I have a small “altar” in my bedroom and I try to name whatever good has happened that day while standing at my altar before bedtime.