Post-Traumatic Stress Disorder (PTSD) Support Group

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First Walk Felt Great, Then A Question

Community Leadermujicaptsd
mujicaptsd

As follow up to my major surgery on Dec. 3rd, I'm in the midst of a 6 week recovery by doctor's orders.  It involves being on a liquid-only diet a for several weeks, then pureed foods, and finally soft foods.  It also involves taking it easy and not lifting anything or straining in any way that would pull at sutures.


So it was a big deal yesterday when I finally got out of the house and went for a walk.  My neighbors saw me out and took me out to our neighborhood bar last night, the first time I'd been out socially since before Thanksgiving.  It was a little much, I was a little wobbly walking to and from the car and on the barstool  and I slept forever after I got home.  But it was good for the spirit, though I drank water and no spirits. 


While out we were chatting about my hospital stay and I shared the somewhat private info that for me the worst of it all wasn't the surgery itself but the catheter afterward.  It bothered me constantly.  My neighbor was surprised, because he said he once had to have one for 3 months.  I told him I couldn't imagine putting up with that.


Then remembered:  PTSD.  The catheter triggered the heck out of me concerning the sexual assault I survived as a kid, that's why I was climbing the walls.  I told the nurses I had PTSD at the time, but they just shot me dirty looks.  When I got the hospital's customer satisfaction survey to fill out after my stay, let's just say they didn't get high marks.


Does anybody else have any experience in telling hospital staff about their PTSD diagnosis so the staff can have the option of accommodating treatment to our underlying diagnosis?  I invoked my ADA rights at work for an accommodation not to work overloads like I used to and I've been frozen out by my bosses ever since, tolerated until retirement.  Is there a way to communicate our PTSD diagnosis to catch a break?  What's your experience?


patti22
patti22
I think the first thing is to figure out what you want, and the next is to ask your doctor about it.




Me...I can not STAND being woken up. I will not go back to sleep, and I'll end up awake for days.

If I go in the hospital (not planning on it), I'll come with my own signs to put on the outside of my door, over the head of my bed and on my tray table ...to NOT wake me up for anything. (My children are WELL versed in this.)

I get that nurses are busy and may be taking care of the person who is having a heart attack next door...so I will try and make it as easy for them to remember as I can.
Community Leadermujicaptsd
mujicaptsd
Good for you, because I got no rest in the hospital. A phlebotomist would wake me up at 3am to take blood and that would be it for me for the rest of the night. Argh!
patti22
patti22
Perhaps you could have gotten your doctor to order the bloodwork drawn later in the day?

I don't know...just an idea.
patti22
patti22
Sorry, I guess I didn't make myself clear.

For me, they could take the bloodwork at 3am, as long as they do it while not "trying to wake me up".

I have vicious, vicious insomnia. But once asleep...I sleep. Maybe that's why the nightmares can be so bad...because they won't wake me up. Everyone said that with a newborn crying...that I would wake up...I didn't. I sleep through fire alarms. I wake up to my alarm clock, but to no one else's.

One day without sleep...I function. Two is rough. Three gets ugly.

I walk, talk, have conversations.

Once asleep, my daughter is pretty much like me, minus the insomnia.
Community Leadermujicaptsd
mujicaptsd
I struggle with insomnia, too. Like just last night. I found the interruptions of sleep in the hospital to "care" for me with the blood taking and the blood pressure taking and the taking this and taking that also took away all of my post-surgical rest in all of the manic "care" being followed to the letter of the '"care" plan on paper. I pushed my doctor to discharge me just so I could get some. It worked.
SimpsonsOK
SimpsonsOK
So many of us deal with insomnia, and no sleep once waken. Muji, sounds like you did a bit too much that first outing. Ah, the relief of finally getting outside. I step out on the porch each day, just for some fresh air. Need to go out twice a week for appts. and one quick errand. Then I'm done for the rest of the day. PTSD does take it's toll. The minute anyone opened the partially closed door, I was up saying good morning. The door didn't make any noise, just woke me to have someone entering. The aftereffects just are what they are. Hugs.
crybaby
crybaby
Muji I am so sorry your health has been so bad.....I am very pleased to hear you are now on the mend and you managed to get out with a friend.......sleep is an issue for me as well....but getting back to your original point muji......It is of course prudent to inform medics and others of pre-existing conditions......but in my experience most just don't care or listen......for example, I remember going to a&e with terribly injected bartholins cysts.......it was a reoccurring problem and I knew it had turned to a really bad abscess......they paid no attention and left for me 12 hours before operating by which time I was in a really bad state.....i had no fluid for 2 days as it was far too painful to urinate, or indeed by this stage even move, and I was going delirious, thank god I didn't get sepsis.....as they later told me......they were then shocked at what they found during surgery!!
Community Leadermujicaptsd
mujicaptsd
cry, that was terrible treatment. I'm so sorry you went through that. Yikes!
SimpsonsOK, I'm still struggling with the insomnia. I decided to take dramatic action and reset my day/night sleep schedule. Since I don't have to work, I've stayed up through the night to try to stay up through the day today. Then I plan to get to sleep at about 9pm or so today in the evening on Christmas Eve.

I know it sounds nuts, but I was getting to sleep at 3, 4, 5am, and then sleeping during the day. Hopefully, I'll break this thing that started back at the beginning of the month when I had surgery Dec. 3rd and nurses kept me up all night. The loud talking at the nurses' station outside my door kept me awake, and then there was the taking blood pressure, drawing blood, and all kinds of other stuff every hour or so all night long. It's thrown my day/night sleep schedule off for 20 days now. I hope this dramatic move helps. Fingers crossed.
powerpurplewarrior
powerpurplewarrior
My experience sucks too. I'm on a heavy load of medicine. At the hospital after surgery the nurses were apprehensive around me treating me like I might break. They weren't happy having to help me with my medicine at all. That's why I'm having such a hard time now. The more I shared with them the more they left me alone. It was hard doing all of this alone.
I'm in a good routine now. But it took me 5weeks to get here. My depression is crazy bad. I see my Dr soon.
In other situations I've found the less I share the better it goes. I answer questions but am vague about it because I'm too afraid of being judged and treated differently.
I try my best to do my best and that's all I can do.
Hoping you're healing up well and that you enjoy eating real food soon.
Community Leadermujicaptsd
mujicaptsd
PP, you wrote, "The more I shared with them the more they left me alone." I know! Me, too! Except for waking me up every hour on the hour all night to take my blood pressure and draw blood and kick off the insomnia I'm still struggling with 3 weeks later. What the heck?

Glad to hear a good routine can be established 5 weeks later. It give me hope I'll be able to say the same 2 weeks from now. You know, I'm really grateful to be going through this with you at the same time, with you just a step ahead of me every step of the way. Thank you for that!

Sorry your depression's so bad. I've been there, too, in the paralyzing clinical type. I'm not there at the moment, thankfully, so I can only imagine what it would be like to have both clinical issues to struggle through at the same time, post-op stuff and depression stuff all at once. Prayers going out to you for that to tide you over until you see your doc. Keep doing your best, and yeah, I keep thinking about the third week of January and what my first taste of real food will be like then. Mmmm.....