I try to stay positive and happy as much as possible. I try to make everything as good as it can be. But come on… this effing sucks. I am tired, I am lonely and I am sad. ALS sucks…completely and totally sucks. There is nothing else to say but it sucks. There is no cure, there is no treatment and there is no happy ending.
If this post ends up sounding selfish and bratty I’m sorry. I am in a feeling sorry for my self mood. (I know I shouldn’t, I’m not the now with the disease, so you can either read this and move on or just ignore it, I am basically just journaling here.)
All I want is a hug – not a hug that say hello, not a hug that says nice to meet you, not a hug that says you my brothers’, sons’, friends’, patients’ …. wife, so I’m hugging you hug, but a real hug. Not a pat on the back not a one armed touch but a real big actual hug. You don’t realize if you don’t get them how much they actually mean.
There is so much I want to say here but so don’t want to offend anyone. Too many times I have tried to say something with it being taken wrong – blame placed and feelings hurt.
I am here 24 hours a day.
I attired of being treated as though I am hired help. I am tired of being treated like people are doing me a favor. I am tired of being treated like no one can tell me my loss is not and will not be great. I am tired of being told how to feel. I am tired of being told that I don’t understand. I am tired of being made to feel as an outsider and not family.
That was just blaghgdliuhjsdbiuh. I will post a happy, smiling post tomorrow!
– xoxo Victoria
Thank you for sharing your experience with us. I would so hug you, if I was anywhere near you. It would be a thank you for being who you are hug.
Thank you. Love you!
Your amazing …a angle…sending a hug from Reno
I know the tired that you feel. Not with ALS, but with SMA. I wish I could hug you. I read each and everyone of your blogs. It’s okay to be tired. It’s okay to feel sorry for yourself. You ARE alone, and the journey is HARD HARD HARD HARD HARD. Fall apart, it’s okay. Because you need to sometimes. We ALL fall apart at times. And it is OK!!!!! You will get through the hard days….and there will be tons of them. Breathe. Cry. Scream. Get mad. Throw something. Tomorrow will be a new day…..and this bad day will be over.