How Does Your Mind Handle The Good Days?

[jen-cueva]

Hi @colleensteele, this is an excellent topic! I’m interested to read what others respond.

Like you, I* usually try to prepare myself for the next “adventure” because I know with the good days, bad ones typically follow. However, I’m working on trying to be more at the moment. I’m learning that my mind doesn’t have time to worry if I am busy.

I’ve been trying hard to make lunch plans with a good friend here at least once per month. We busy ourselves catching up while enjoying something we both want that day. I enjoy rides on my E-bike on a nice day, going to the beach, and being with friends and family.

There’s no time for my mind to wonder. There are days when I also say nothing medical-related will be discussed that day to Manny. However, when we go somewhere, and I am using my POC and wheelchair, it’s a constant reminder. I think that’s why I prefer activities that don’t require my wheelchair. We all need a break sometimes, mentally, physically, and emotionally.

[Colleen]

@jenc you bring up an excellent idea – having a “Do Not Discuss Anything Medical Day”! I have implemented that a number of times. Do you catch yourself sometimes from bringing up something medical out of habit? I’ve found those days off hard to manage sometimes.

You really have been doing so well at making time for yourself, friends and family!

[jen-cueva]

Hi @colleensteele, some days, it seems to come up because it is my/our life. It’s challenging, especially when true friends ask how I’ve been. “Here we go,” I think. But I’m grateful those few true friends ask and want to know.

I think this may be a column idea. I better notate it and start on it. Thanks for your encouragement and friendship. I’m trying hard to be there for my family and closest friends. It isn’t easy to balance some days with all going on.

How are you doing with making time for “Colleeen” and self-care? We are here for you, and I know that caregivers neglect themselves too much.

[Jill Upshaw]

Good question but I am afraid that I spend my good days preparing for what is next while I am strong enough. It also depends on the weather and whether or not I can go outside. I do make the best of my good days for sure but my priorities take over my brain most of the time.

[jen-cueva]

Hi @upshtcx, like you, I find that my mindset also depends on the weather. If I can be outdoors on a nice sunny day, I seem to keep my mind busier. But it’s not as easy to stay active when I’m stuck inside because of rain or cooler weather. That’s when the worry sets in.

Thanks for making that comment. I bet many others can relate, too.

How has your week been? Take care, and here’s hoping you can get outside over the weekend.

[jen-cueva]

Hey, y’all, I wrote a column on this topic; thanks for sparking the idea, @colleensteele. You can read the column below.

My self-care strategy includes “no medical talk” days

Please give it a read and let me know your takeaways. Do you designate “no medical talk” days?

[Joanne Singh]

When I drive myself to get my hair done, go to the Mall for an hour or more, I feel almost normal.
One day I went to the desert with my son for some Target practice. I had not handled guns in decades. The pistols felt really heavy as did the rifles. I felt like I was normal.
After both of these outings I was totally wiped out when I got home. After the target practice I felt like I had arthritis of the skeletal system.
I spent nearly two days mainly sleeping and lying down

I just had a birthday. I told my sons to please not have a party as I would probably be too tired. I spent most of the party in the recliner. Almost too tired to eat.
Then I went to have my hair done and was at the DMV. I was wiped out when I got home.
Almost afraid to plan an outing anymore as I don’t know how long I can last.
Im not on meds or oxygen. I have no direction from cardiologist or pulmonologist.

[jen-cueva]

Hi @joannes, I feel mostly normal when I can drive myself somewhere. I can walk shorter distances most days while using my oxygen. I don’t take myself to the Mall because I would need my wheelchair to get through the MalL, so I only bring myself to small stores where I only need to grab meds or something.

Happy belated birthday to you! I’m pretty impressed that you were doing target practice in the desert. I did that in Texas, and my arms and legs were so achy afterward. Were your arms sore and heavy? Often holding them up for periods will do this.

Despite your age, you are not alone in battling fatigue. I finally got some relief most days when I found the best treatment plan for working with my PH team. However, those days when you could only do a few things and then down for a day or two were so relatable when I was first diagnosed. I continue to have that issue but not as much, thankfully.

Did you ever contact the UCSD PH center? Did I give you the number to Elizabeth, the sweet young lady who schedules appointments? If not, I’m happy to provide you with that info. I also know Sandee, the longest RN working there, with years of experience with PH. If you want to email me, I can connect you with them. I know it’s a drive from Holtville, but worth it if you get started on treatment.

My email is [email protected].

[Debbie Moore]

I’m back! I found myself forgetting my disease as I took ukulele lessons.  I played with about 100 others on the cruise and then we performed for everyone on the ship.  I knew the walk to the bar for the lessons was sometimes taxing, but once there and breathing normal, I didn’t think about anything except learning the songs. I found I fit right in.  What a great feeling not to feel different.  I had the same experience in crocheting leis.  Lots of women to gab with and my POS sitting on the floor totally ignored because I felt normal.  I even started to walk away without it, but then normalcy literally pulled me back! Hehe.