According to my treatment time, I'm not allowed to have any passes.
I can understand not having any snack passes (I'm still not completeing meals, still struggling a lot), but they aren't giving me ANY at all. I don't understand. I'm not on bed rest, I'm somewhat stable medically (there are other more unstable people than me who get to go on passes. not FAIR!!!) and I have been pretty compliant with everything. I just feel like I'm being punished for something I didn't do. It's so frustrating to give up your power and have people - docs, nurses, 'the team' - decide all the tiny details of your life. They are responsible for granting my wish which is a simple desire to go out for 15 minutes for some fresh air.
I'm getting so sick of meal support people being inconsistent and the rules changing constantly. The trays come up late for meals then WE have to take the hit by mealtimes being cut short and having to drink the Boost replacements in 2 mins flat. Chug chug chug. I feel like this ball of anxiety is welling up inside me. I feel like I can't breathe.
I can SO relate to the trays being late. It always shoot my anxiety up and made everything so rushed. And there were inconsistencies among staff- have you tried talking to them about it?
ReplyDeleteAnd I also hear you on the getting out of there for even 15 minutes. But I guess there is a reason they aren't allowing it. Have you been there a week yet?
I don't know- hang in there and keep trying. I'm thinking of you.
aw hun...that sucks big time. i know they've got their stupid reasons that might be for the best but i know how frustrating it is. keep doing your best. i'm assuming one week down? two to go?
ReplyDelete((Hugs))
ReplyDeleteI haven't ever had to eat in a hospital situation like that, BUT, I can say for sure: I could NOT drink very much Boost in two minutes flat!!! You are so amazing for putting up with the changing times, rules and fighting as hard as you are fighting! I'm so proud to know someone like you!
When I was IP (for a short while) I never got passes either. Does your hospital have any big windows?? I used to go sit in front of one and watch the traffic below for what seemed like forever. I think that helped since I couldn't go outside.
Also, I will write you a letter real soon! I just got back from vacation. I thought of you because I was almost to Canada we went so far north :)
~take care xoxo
hi love,
ReplyDeletedon't get mad at yourself or the treatment team-- get mad at ED-- ED is holding you back from going on pass.
Challenge ED. beat him. he deserves it. and so do you.
and remember, each day is a new beginning :)
Hey, have they said what they expect to see or for you to do to earn a pass? I hope you're asking for some answers and at least know the goals they want you to achieve.
ReplyDeleteI'ma going to be there next Wednesday on the hub. Come and introduce yourself if you feel comfortable, and if not - absolutely no worries. I'm not hurt or offended.
EC is hard. Keep working at it.
Hang in there, you may be at their mercy, but they do have to explain themselves. You are allowed to ask questions.....find out what needs to happen to get a pass. It is hard and feels quite intimidating sometimes, but you are the MOST important part of your treatment team. Just keep thinking of your life and your sons, how much more you can feel and accomplish without ED sitting on your shoulders. Keep working, you are getting there.....
ReplyDeletedon't beat yourself up for this. don't judge. We all struggle. Hold on strong. You can do this. The fact that you are where you are says something amazing.
ReplyDeletexoxo
-Lisa