Hospital stay and sensory issues - advice, please?

Post Reply New Topic

I've got some surgery coming up in a few weeks that will involve a 24 stay in hospital. My sensory processing issues always get more intense when I'm stressed or in pain. And, of course, both before and after surgery I'm bound to to be stressed and in pain. I am worried that I'll have trouble in the fluorescent-lit, scratchy gowned, industrial cleanser scented ward full of beeping machines and people rushing frantically about.

I'm not sure if informing my surgical team and nurses about being on the spectrum and needing some sensory accommodations would do any good, or just make me more likely to end up in 4-point restraints. I really, really, really want to avoid a pre or post-surgical melt-down.

Any helpful advice?

I would inform and make sure that everyone who needs to know is "in the loop" and understands. I spent 9 days in hospital just over 3 years ago with an infected laceration on my leg. I am very touchy about needles -- especially involving blood. I literally require a form of sedation or there's no way to get blood from this turnip (me) or put an IV into me properly. My veins are so small and have a tendency to move around... the tech had to keep calling a pediatric nurse to work with me. I am so phobic, I begin to lose consciousness and my BP drops so low that even my small veins vanish from sight. Literally have attempted every form of strategy to get around this and found the one way of dealing with it? TRUTH. Please give sedative. Go away for at least 30 minutes and then I'll be manageable.

The other problem is similar to yours: noise. I really dislike the noises in hospitals. Request ear plugs or what are referred to as "dead phones" to cancel out these noises. I used ear plugs, but was also being given morphine which knocked me out very nicely. I did not expect to be hospitalized for more than 3 days and when it became 5, I was climbing walls until finally released on day 9. On day 5, I became very annoyed with the constant coming and going of staff and requested that a "Please Do Not Disturb" sign be put on my door. Only one person was offended by this and she took it personally --- actually refused to answer the call button when I rang, so I got up out of bed dragging the rack full of IV drip bags and tubes, opened the door and asked "is anybody out there or am I in an episode of the Twilight Zone?" I was very thankful when the shifts changed and this mean creature went home and friendly, familiar faces returned. I asked other staff if they were offended by the sign on the door and none were, but they were curious about the reason I would ask such a question and I told them. The next day, the head of HR for the hospital was in my room discussing the conduct of this one person with me -- all I could say is "I can't understand this person's reason for taking a sign like this personally...I just needed a lot more peace and quiet. I tried to explain to her and she actually seemed to become more hostile with me." I have no idea what became of this nurse, but I dealt with many people on staff and most seemed to like me -- weird hang-ups about needles and all.

You might request an sterile alternative to the scratchy gown. I dislike fluorescent lights. too... I can't imagine anyone liking staring up into those things.

I'm also put off by the way these places smell. I can find the combined scent of medicinal chemicals overwhelming at times. It's one thing if I'm in a hospital bed or sitting down and quite another if I'm standing and walking and get hit with a wave of that "scent" full on. I would think there would be money to be made in aromatherapy in hospital rooms...lowering stress levels lowers pain levels. Use of natural, organic ingredients that someone chooses beforehand...it's a thought. Hospitals should consider how much comfort factors into the healing process, nonstandard though some approaches may be. Please do advocate for yourself and bring a family member or good friend in who will assure that everything you requested that would be helpful to you is not overlooked by anyone. You are asking to be as comfortable as possible under trying circumstances, which is completely reasonable. You aren't asking for the moon with a golden fence around it, after all.

Lavender scented pillow and eye mask (lavender is a soothing scent)

and/or a normal eye mask (sleep mask)

Something comforting from home tactile wise like a nubby blanket

ipod with headphones and soothing music

Then at least you can put your mind into other sensory input if you need to.

Good luck.

Will you be put under general anesthesia? I was so zonked afterwards in the recovery I didn't even remember it. Then of course I had Vicodin if I needed it which tended to put me to sleep.

I also forgot: Movie goggles! These have been around for awhile so need not be the latest and most expensive technology -- and you can view and listen to gentle footage of waterfalls or forests. Just take yourself on a journey to a place that is pleasant and peaceful. You might be able to rent a pair of these and some pleasant films when you feel the greatest need to escape.

Here is something else I used to do that I cannot recommend to everyone. If you have a bit of the theater in you but want to hurry past without fanfare, this is a way of having fun in a hospital. Yes, I am female and mostly white. I also happen to have a voice with a three octave range and singing helps me to relieve stress. People in hospitals (staff included) seem miserable a lot of the time, so whenever I'd be wheeled to X-Ray for a CT Scan or MRI, I'd get into my repertoire of old Paul Robeson songs. I'd be wheeled to the elevator and I'd start singing (in a very mournful Tenor) something like "Lonesome Road" or "Ol' Man River" (Robeson had his own distinct lyrics without reference to getting drunk, like: "Tote that barge and lift dat bale!, You show a little grit, And you lands in jail.."). This would cause the man who wheeled me to X-Ray to laugh, people in their rooms to laugh...you just need to change the emotional scenery a little bit when you're able. I was ready to limp to the exits and was starting to feel like I'd never see feel the sun or the wind again, so I sang those old sorrowful songs just like every time I went to X-Ray I was traveling that last long mile without a ever having known a mother and my mule had even run away and left me. Let's face it, if we're going to be pointed out as "different", we might as well try to make AS enjoyable when the mood is upon us.

I'm wishing you well and strong, sending you rainbows without storms and am seeing you make full and quick recovery..