It is crazy the amount of stuff you have to organise for a routine hospital admission. I am starting to think there would be a lot less work involved if it was an emergency but know my husband couldn’t take the stress involved.
I like lists I can’t help it. There is nothing like the satisfaction of crossing off the jobs as they are completed. It’s a remnant from a previous life, you know the one where I contributed to society, felt like I was actually doing something instead of treading water whilst waiting for new symptoms to arrive. It seems a long time ago now but my organising skills do come in handy. Hubby has a list also, written by me to keep him occupied and out of trouble whilst I am away.
I have printed off my prescription list, ( a double side of A4 paper), printed out my symptoms a list for both EDS and PoTs, as last time I was admitted the Doctor processing me simply had no clue. I have bought new pyjamas, a dressing gown and socks as my feet are always cold. Now I am trying to work out a way of shoehorning it all in to my overnight bag. If it was just simply overnight I could manage but this is in all likely hood be a stay from Tuesday to Friday. By the time you read this on Thursday morning I could a) be one day away from escaping or b) the staff have pissed me off so much I have discharged myself. It will be fun either way.
At least this time I know how to play the game. I am back on the locked dementia ward and in a side room. No side room and I am going home pure and simple. That may sound ungrateful but just a few hours exposed to the noise of the ward will send me into a downward spiral of complete bed rest for a few weeks. I can’t deal with loud continuous noise any more. When in hospital my condition should be stable and not allowed to deteriorate.
This time I know I am well within my rights to refuse tests / treatment and will not be intimidated by an aggressive night nurse who demands to check me for bedsores. Do you remember the one who last time removed the bed-clothes and tried to undress me before explaining what she was doing? I am looking forward to seeing her again because this time I will take her name and make a formal complaint if she tries anything remotely similar.
People keep telling me to enjoy the rest whilst I am in hospital but there will be no rest. The constant ambient noise, lighting and series of tests that I will be put through will give me no rest. I will get home exhausted and that will be followed by a collapse a few days later. By collapse I mean unable to get out of bed for days on end. Since I have got sick I can not deal with the outside world. There is too much stimuli for my senses, I become overloaded. I can cope at home because the stimuli do not change and I can take myself off to bed any time I like.
In hospital my mobility issues will hit me hard. I can walk short distances albeit unsteadily at times, however in hospital I will have to walk further than I normally would to the bathroom. When you drink 6-7 litres a day that’s 20+ bathroom trips. Even if the difference between getting to the bathroom at home and getting to the bathroom in hospital is only a metre by the end of the day it would be difference of an additional 40 metres walked. This will trigger bursitis in my hips and pain in my knees and back. When you aren’t sick you don’t think about things like these. Even if I manage to wheel myself in my chair, it’s still extra pressure on my shoulders which will mean at some point one or both will sublux or dislocate. There is no such thing as rest for me in hospital, I know they meant well but it just wont happen.
I will also be dealing with constant anxiety firstly about being in hospital surrounded by people I wouldn’t trust as far as I could throw them due to previous experiences but I will also be worrying about hubby and the dogs. I know how hard my absence hits hubby and the mutts. At least this time we are better prepared and have made sure he has friends coming around to see him. Otherwise he is liable to retreat into his man cave, sitting in his underwear eating junk food to comfort himself. As he suffers with anxiety and depression he does need the support of his friends and I am so grateful he has such a good bunch of people to look out for him. I will be ok I will just miss them all.
Part of my fear of hospital stays is like anyone else’s a fear of the unknown. I have no idea what the doctors have planned for me and I find the lack of control disturbing. I have so very little control over my life, I depend on others for everything, when what little autonomy I do have is removed I react badly. I really don’t want tests that I have previously vetoed being sprung on me such as tilt table tests. I have a sneaking suspicion that they want to do one but the answer will still be a flat no as the last one in February 2014 made my health decline so rapidly I was stuck in bed for a month afterwards. As I was left to deal with this alone (as in no medical care) I am loath to ever put myself in that position again.
I know I need to go to hospital, I know I am lucky that I live in a country where (for the time being) its free at the point of use. I am lucky that I have doctors who are willing to try to get answers when I have been fobbed off and forgotten by so many others previously. I just don’t feel that lucky today the day before I go in!
So hopefully after my stay, if there is a bed available and I am well enough I should be able to regale you with my stories of what tests I had and how I was treated by the medical staff. Fingers crossed it is better than last time!
After all the stress on Tuesday morning when I rang at 8am I was told they were struggling to find me a bed. By 2pm my hospital stay was cancelled. Now I have to go back on the waiting list for another available slot.