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….