April 9, 2020 at 4:44 pm #24374
I have short hair, so that part is helpful. But, I find that “hair washing days” are draining for me. I do usually shower and wash my hair. Then take a break while my hair air drys some. Then, I will dry the rest, which is the worst part for me. The heat is just so hot and makes me feel like I am suffocating at times. This is all since my PH diagnosis.
Then, once I take a break from that, I will turn on my straightener and start straightening my hair a little at a time. This is a day, pretty much for me. Does anyone else feel this way with basic ADL’s?
I have where I just rather pay my hair girl to wash and style my hair so that I d not have to deal with it. Sadly, she is closed(with the rest of the world). So, I waited a week before I washed my hair. Don’t judge me. I did use dry shampoo. I love that stuff. Do y’all? Do y’all have a favorite one that you like?
Today, I did treat myself, well, my daughter did. A friend of hers was selling at-home facials. She dropped one to me that my daughter bought, and I did that in between waiting on my hair styling. That was a nice way to treat my skin and do a little self-care at home.
How are y’all when doing these simple daily living activities? I find some days are worse than others. of course.
For y’all men too, what are your toughest activities of daily living to perform?
April 10, 2020 at 12:33 pm #24391Brittany FosterKeymaster
Really good and important topic to discuss ! Even with not doing much activity during the day, I still find that the showers can be really exhausting. I think it is a combo of the heat and the humidity from the shower. Also, it does take a lot of upper body movement to wash the hair appropriately so sometimes that may impact my breathing. Even blow drying the hair can limit breathing. I remember my first shower after my surgeries and I always felt awful after that ! It really knocks the wind out of you sometimes. Doing cleaning and tidying around the house also drains me of energy. My mom has been really helpful to me with that and I need that help!
April 10, 2020 at 1:21 pm #24399
Oh, I cannot imagine how much of a struggle it is for you just after surgery @brittany-foster. I find it difficult after a hospitalization without surgery.
I agree the shower steam is like humidity. I always leave the door open to help. I also think that it is holding my arms above my head to wash, bending over, etc. The hairdryer, I was told it was holding it up and the heat, of course.
Cleaning will also exhaust me quickly. Of course, some days are worse than others. Usually, my hubby is a huge help. This week has been tough because he has been sick. So I did not want me in my bathroom at all, even to clean it. He does the mopping and heaving cleaning. Like your mom, he is a huge lifesaver!
I loved the TikTok of her cleaning. I was so bad at doing that to my daughter. I am much better now. She did not care for Mom to clean her house and spray Febreeze and Lysol like a crazy woman. LOL
June 10, 2020 at 3:46 am #25623TraceyParticipant
At the moment I am finding it impossible to carry out dialy activities. Getting up for a cup of coffee in the morning is about the extent of my daily activity
I’m not sure if it’s the PH or the heart failure that is causing this exhaustion but I’m probably sleeping about 18 hours a day.
I’ve managed to find a part time helper 🤗 so he comes in in the mornings, makes me breakfast, feeds the fur babies, throws the ball for the fur babies and generally keeps things ticking over. He comes back on in the evening for the same routine, lights the fire and makes sure I always have a good supply of wood.
I’m not sure how you fulltime mums managed to keep things going I take my hat off to you!
June 10, 2020 at 5:41 pm #25634
@traceyaustralianmigration-co-za the fatigue you are experiencing, especially with heart failure, is unfortunately common. I can remember days when it took a great deal of energy for my son to just get up and walk to the bathroom. You mentioned that you have started some new treatments, is that correct? If so, hopefully as your body adjusts you will feel some improvement and maybe gain some of your energy back.
June 10, 2020 at 9:23 pm #25649
Hi @traceyaustralianmigration-co-za, I am happy to hear that u=you did find some part-time help. I am sure that helps you some. I am sorry to hear about the fatigue. I am sure with heart failure, PH, and lupus; it is even more fatiguing. Any little thing drains you, I bet!
Are you seeing the doctors on the 30th of June? Is that what you mentioned the other day?
I hope that the fur babies like their play partner. That should help them, too.
June 11, 2020 at 4:20 am #25656TraceyParticipant
Yes I was booked in to see everyone on the 30th but having spoken to my doctor tomorrow we decided to bring that up to next week Wednesday. The doc is concerned about the fatigue and fluid retention.
Hold thumbs it’s just a say trip.
The fur babies love having someone new to run round the garden with them.
June 11, 2020 at 2:34 pm #25665
Colleen funny that you mentioned the issue with your son sometimes finding it difficult just getting up and walking to the bathroom. That is me everyday. Once I get there I sit on the edge of the Jacuzzi tub to regain my breath before starting my routine. Sometimes I just wash up, shave, brush my teeth, brush my hair and get dressed with a breather break in between each. This can take me 45 minutes at best. If it is going to be the shower and wash my hair with it it is a minimum of an hour and a half. I have to take a break half way through the shower to catch my breath. It doesn’t seem that long ago I would shower and wash my hair everyday in all of 30 minutes. And yes, just raising your arms to wash and rinse my hair takes a ton of energy. I will never say anything to my wife again how long it would take her to get ready to go anywhere.
June 11, 2020 at 3:08 pm #25670
Hi @traceyaustralianmigration-co-za, I am so grateful to hear that they moved your appointment up. I am crossing my fingers and sending you positive vibes for a day visit only.
I hope that your caregiver is helpful to you too. It sounds like your fur babies are enjoying it.
Take care and take it easy until next week.
June 11, 2020 at 3:17 pm #25671
@bill-jones, I remember just before my diagnosis and after for some time. I struggled to walk from my couch to the bathroom, which was about 8-10 steps away. Thank God, I have much improvement once I was rid of some extra fluid, and PH treatments started kicking in.
Now, I am grateful that I can do more on most days. I continue to struggle with holding my hands up to wash my hair. My hair is short. But, dry shampoo is my friend. Hairwashing is a day’s event.
I am much more appreciative of the smallest things when I can do it. PH offers such perspectives.
Are you on any new treatments? Does your team have the next step for you as far as to offer any relief?
June 11, 2020 at 4:58 pm #25676Nancy McSweeneyParticipant
Yes, I know what you mean. Most days after taking my shower, getting dressed and fixing breakfast I am all tired out and need a nap. So depressing. I thought it was just me.
June 11, 2020 at 6:18 pm #25682
@bill-jones unless you or a loved one has PH I don’t think people fully understand how difficult it can make just normal day to day activity. A year before my son’s transplant he slept downstairs on the sofa. Climbing the stairs to his bedroom had become practically impossible. But prior to his decline he also had days that were exceptionally hard on him. I can remember him often complaining that he barely had the energy to move, and he was just a child at the time.
I’m sorry you and @nancy-mcsweeney have experienced this too. I know how depressing it can be but it is important that you listen to your body and rest when you need to. Whenever my son pushed himself he would feel even worse the next day.
June 12, 2020 at 12:58 pm #25696
I am sorry to hear this, @nancy-mcsweeney, it certainly can be frustrating—especially when you want to do things, and your body tells you otherwise. As @colleensteele mentions, it is important to listen to your body. Rest periods help me.
Also, if this is worsening, you may want to mention it to your PH team. But, this is, unfortunately, quite the norm with PH. Other coexisting illnesses does not help, naps do but not always. Some days no amount of rest helps, do you find this too?
June 12, 2020 at 1:33 pm #25699Nancy McSweeneyParticipant
Yes, Jen, coexisting illnesses do not help and there are days when naps don’t help much either. It has reached the point where I have come to the decision that I need in home help to do the laundry and take the trash out. I live in a condo complex and the laundry room is at the other end of the complex and you have to go down 13 steps and then up another 9 step to reach the laundry room. I have given up carrying laundry baskets down the stairs, but use laundry bag instead – now even that is becoming more difficult. And taking the trash out is just as bad as the dumpster is at the other end of the complex. My husband can’t help much as he has had open heart surgery and has balance problems – he is 86. Thanks for listening. This chat room is really helpful.
June 12, 2020 at 2:19 pm #25700
My team has concluded that my last option is to have a double lung transplant. We had gone to Mayo and they confirmed it as well. The pulmonary fibrosis has just left too much scaring which is the leading problem.
June 12, 2020 at 2:47 pm #25701
@bill-jones I know how difficult the transplant decision is. My son will be 6 years post heart and lung in August. If you have any questions or just need to vent at any time, I will be happy to help.
June 12, 2020 at 5:34 pm #25706
Thank you Colleen. That may be of some help down the road. Right now just trying to grasp where we are and where we are going I guess. But it isn’t totally a done deal. I still to get excepted into the program. more of the hurry up and wait. Thanks again, your offer is very much appreciated.
June 13, 2020 at 3:40 pm #25729
@nancy-mcsweeney, I’m so sorry to hear about your laundry situation. That sounds exhausting, so I would agree that it seems like you would benefit from some assistance.
My hubby and I have discussed selling our home and buying a condo when he retires. The 2 things that keep popping up are laundry and getting groceries to the condo. I know some condos have washers and dryers, that would help. Groceries would be an issue unless I had him do it or delivery. Do you use delivery for groceries?
I hope that you can start looking into findings little help, we are always here to listen. I hope that your hubby recovers from his bypass surgery without any issues. Was that recent? Wow, 86, how old are you if you don’t mind me asking?
June 13, 2020 at 3:53 pm #25730
@bill-jones, I’m sorry to hear that you’re at the transplant stage. I’m sure that it is taking some time to grasp this idea. With PH and PF, I would imagine that it’s like PH times 2 and then some.
I know from others that this process can be long and overwhelming. I’m confident that @colleensteele can answer most questions to help you with this. Of course, we see all here to support you through your next journey.
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