Until it has happened to you it is hard to understand how quickly your body changes laying in a bed doing nothing.  I don’t think I have a pic of the stander that I had to use to walk but will see if I can find one.

So….let’s get up and go for a walk.  OK, I would love to get out of this bed, this room and be anywhere else!  Wait, I cannot even get to a sitting position without help, this might suck.  It did suck, a lot.  When you are in this condition you cannot just get up.  You have to have assistance for every tiny thing and it is exhausting.  By the time I got to sitting it felt like I had run a marathon and needed to lay back down.   No such luck.  Going for a walk was like being in a parade.  My stander in the center with me gripping it for dear life, a nurse to push oxygen, a nurse to push alarms, a nurse to push iv poles, a nurse or two to support me.   That in itself is exhausting and we haven’t even stood up yet.

I could not believe that I could barely walk.  At first I thought it was from all the narcotics, which was part of it but the biggest part is I had lost all stamina and strength I had ever possessed.  Those walks were brutal and I bargained and pleaded to get out them.  It never worked but it was worth a shot.  The first few times I made it to my door…..all those people, all that work and I was only at the door.  These were real moments of clarity of just how bad my situation had become.

Did I also mention that I was losing my mind.  Half the time I had no idea where I was.  I began having panic attacks which I had never had before.  All of a sudden I now had a psychiatrist on my team.   I did learn how to proficiently count backwards by multiples of 7 from 100, spend one minute stating all the words that I could think of that started with the letter “f”, spell world backwards, describe how I would get of the woods if lost with no compass….you get the idea.

Fun things at St. Mary’s hospital….you can order a pet visit!!!!  How cool is that….I only got one because I was infectious and pets cannot come in your room if infectious.  An older man brought a full size poodle to my room.  I was able to let him get on my bed and just love on him.  It was awesome.  You can order massages and they will come to your room and in my case massage my feet and legs.  You can order acupuncture.  I had this to help with headaches and nausea.

If you are freaking out like I was and having panic attacks, they will make sure that there is someone in your room with you so that you are not alone.  They will sit and just be there if you wish or have a conversation with you.

Degradation….With all of my prior surgeries and hospitalizations and birthing 3 children, I don’t have a lot of modesty or dignity left, or so I thought.   Not being able to brush my own teeth…not too bad but really I can’t even manage this simple task.  I had my urinary catheter removed and since it had been in for so long they said there may be issues starting to urinate again.  No problems there, until my trach was capped and I couldn’t talk and peed my bed before the nurse got my speaking valve on.  My nurse was so nice as I sat and bawled.  Pooping…ever used a bedside commode.  Horrible, even worse when it takes every drop of energy just to transfer from bed to commode and finally sit down and have to hang on to the handles for dear life as you shake from being so weak.  Wiping…can’t do that because I am too weak to let go of the stupid commode so my nurse has to wipe me.  If all of that wasn’t bad enough, there are several times this had to happen in front of my family.  I cannot tell you what a relief it was the day I could use a walker and get from bed to my bathroom and go to the bathroom ALL BY MYSELF!!!

I have to take a minute here and give a HUGE shout out to nurses.  The ones that hold you when you cry, encourage you to take just one more step, deal with your crazy hallucinations, keep track of multiple lines and monitors and still tend to your every need.  That wipe your butt and act like its no big deal and change your sheets when you wet the bed.  That stand and hold a bowl while you heave and spit all the time rubbing your back.  Thank you…