Just Let Me Breathe

butterflies are free....

I did so much today, yet I did nothing. I am so tired, and do not want to go to nap at 5:33 pm. I want to do bead work, and make dinner, and stay awake.

Yes I am fading fast. And I know any time now my teenager will come down to ask for a drive here or there…. draining any last hope I might have of siphoning out a little more productivity….. I miss him when he goes out, but ya know, they gotta grow….

I realized today WHY I created this blog.  A few days ago I came across a blog from a fellow PH-er. She was able to express so many similar feelings, and it did actually soothe me. For a few minutes I didn’t feel so alone, and somehow felt validated. My own brothers says I’m “not really sick”  because  from the outside I “look” fine.  [he is mean-spirited and obnoxious by nature though] PH makes you so sick inside….

I do not really have anyone to talk to.  My Mom I am closest to, but she is having health issues of her own, [I am trying to help her whenever I can in fact which is draining me] and  she cannot really emotionally handle the fact that I have this illness to begin with.

She is constantly freaking out over my condition, and when I have those REALLY bad SOB exhausted days, she gets so upset. So I try to hide it, don’t answer the phone, etc. But last week I didn’t answer cause I was sooo fatigued and not feeling well and she insisted my Aunt drive her to my house 2 towns away to make sure I wasn’t dead or something!

The rest of my already tiny family has their own stuff, also do not want to deal with my diagnosis.  I am a single /widowed Mom, My poor teenager, well his depression over my status is killing me faster than this illness.

My best friend died 2 years ago, and the loss was devastating. She suffered her own path of illness over many years, and lived very far.. too far to visit … but I always felt better just knowing she was on earth someplace thinking of me, sending me love and prayers as I was for her.

My only other true friend has her own difficult path, and so we try our best to be “Simon” for each other” but it is what it is….

Honestly, the only one I can kind of count on these days is someone I had least expected, and for that I am most grateful.

So, I am here pounding these keys letting these feelings out to an invisible internet world, where no one can judge me. No one can yell at me for “upsetting” Mom or anyone else with details of my illness or how my life is falling apart. No one may ever read this stuff at all. If so, that’s fine.

but, if by some chance, this eruption of words and feelings coursing through my achy breaky hands onto this keyboard helps one other person Ph-er or not, then so be it.

And if you do read this, and think I am some kind of whiner, I tell you no. I am a PH-iter and will not give up. I just needed a safe place.  BTW,  if Al Gore REALLY invented the internet, I just like to  say Thanks.  LOL!

Ok, Ill take the nap…. For a little while….



2 thoughts on “Just Let Me Breathe

  1. I don’t think you are a whiner. I think you are struggling to cope with a disease that can suck the life out of you if it’s not carefully managed. I too have PH among other health problems. I would love for you to check out my blog. If you need someone to talk with about your condition, I’m always open about talking with others about the many problems that arises from having a lung disease. I use oxygen 24/7 but I get out of the house even though it makes me really tired. I take naps because I know that my body truly needs the rest to gain back that minute amount of energy it had before doing something active. Let’s be friends and compare notes! =o) *hugs*


  2. Hi Christine! Thank you for taking the time to read, and reply to my blog. I too am on Oxygen 24/7 and it can be a drag for certain! I also have a bunch of things to deal with, as you implied in your post. My kid teases me that if I were to get one of those medical alert jewelry pieces, Id need double sided dog tag sizes to list everything : ) I have to take care of my son, and life in general so I’ve no choice but to go out often but I’m so tired. Yesterday I slipped and fell on the ice so I’m banged up and just exhausted. Ironic, because I was having a fairly good day yesterday compared to recently, and was actually moving along somewhat contently when I decided to try flight.. LOL…. alas, it was not meant to last.

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