My impending hospital stay

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.

Vintage? Moi?

I had a terrible epiphany last week, a truly awful one, I am getting old and I really don’t like it. From now on I will be describing myself as vintage rather than the O word. It sounds kinder, more shabby chic and less like the fact I am hurtling towards pensionable age.

What brought about this epiphany? I was chatting with a friend and her daughter who is 17. I was a bit of an arrogant twat at the age of 17, I think I am permitted to admit that at the grand old, excuse me the vintage period of 41. It wasn’t her that made me feel old, it was having to explain when telling tales from my youth that we didn’t have mobile phones (I joked we used paper cups and a length of string), the shops didn’t open on Sundays and the world well it was a different place. She has never known the joy of taping the charts on a Sunday night, or reeling back in the tape from a cassette tape with a pencil, the video recorder or having a dial on a telephone. I enjoyed chatting with her it was only a few days later when I recalled the conversation when she said I was her second mum (she calls hubby her work dad) that I thought “shit, I am old”.

Years ago I could have legitimately replied to her “I’m not old enough to be your mum”. I would have used that line well into my 30’s only now I am 41 I have to admit I can’t. I think I find it particularly hard because not having had children myself, I never see myself as anyone’s mum. I therefore never consider myself old enough to be a mother. Although acquaintances of mine have already welcomed Grand Children into the world, which makes me shriek in horror! There is nothing like a friend announcing on social media that they are a grand parent to make you feel past your prime. 

Like everyone I guess I just don’t see myself as getting older. Old people to me are people in their eighties not anyone under that age but to a 17-year-old (well a 17-year-old me) I must appear ancient. At the age of 17 I would have seen people in their twenties as being out of touch with the youth of today. I would laugh at old people who would tell me on a tea break at work that they felt 18, when the wrinkles on their face clearly told me they weren’t. When you are 17 you feel invincible and those old people have no clue what life is really like. I am now one of those clueless oldies, Vintage if you please.

 A close friend who is ten years older than me has also had this epiphany and it is disturbing him greatly. He told me he had never considered his own mortality before and the length of time he might had left. Unfortunately due to my health it is something I have considered at great length. It doesn’t bother me, death is still a long, long way in the future it’s becoming vintage (in the eyes of others) that is causing me distress. I am lucky  Ehlers Danlos Syndrome tends to leave its sufferers looking a lot younger than their contemporaries, it is the only bonus of this condition as far as I can tell. I have been told a few times of late I look in my early thirties, although I would have been a great deal happier if they had told me 29.

I took turning 20 badly. I assumed that overnight I would develop grey hairs, black hair sprouting from my chin and wrinkles. I was relieved on my birthday when this didn’t happen but I really couldn’t stand no longer being a teenager. It is the only birthday (so far) that I have struggled to deal with. I think turning 50 will be hard to accept but at least I have over 8 1/2 years to come to terms with it. Just why do the years have to whiz by so fast? It seems so bloody unfair. Turning 20 made me miserable, I was excited about turning 40, it felt quite grown up. I realise however that no one ever truly feels grown up. No one knows what the hell they are doing and we are all just making it up as we go along. It’s a nice feeling to know that pretty much everyone feels the same.

I laugh at what those young people consider fashionable. When I was at school we laughed at old people who painted on their eyebrows in some 1940’s style arch, the trend now is to shave them off and draw two fat slugs on your face. It appears that the only shade of foundation to wear is orange with a great tide mark appearing where your face meets your neck. In my day (I sound positively ancient) such a tide mark would be greeted with horror. We were told in every magazine to blend, blend, blend so that our foundation couldn’t be seen and we didn’t end up with a face that was a different colour to our neck. We didn’t wear denim shorts (pornographically short) with thick opaque tights and converse trainers. I admit I wore converse trainers as a teenager obviously I was well ahead of the fashion curve. We also didn’t have eyelashes that were so caked in mascara they looked like broken spiders legs hanging off our eyelids. So many things have changed and I am left thing when the f**k did it happen? I feel like sleeping beauty awaking 100 years later in a different world.  

I remember very clearly when I had the first inkling I was getting old I mean becoming vintage. I was at work processing application forms for Saturday jobs and the kids that were applying were stating dates of birth as 1990. For one horrible moment I realised I was old enough for one of these to be my child. I don’t think I ever got over it. It upset me for days, 1990 just seemed like a blink of an eye away but clearly it wasn’t. As I am writing this I have realised that my husband and I have been together longer than our friends daughter has been alive. Those Saturday kids that were taken on are now getting married or having kids of their own. I am happy for them but it seals my fate I am now vintage. I am one of those “old” people who still feels like they are young, just massively out of touch as far as they are concerned. How and when did it happen?

The clues were there when I started liking the music that my parents played when I was a kid. Stuff I would tell them at the time was a kind of torture to be made to listen to. Asking to borrow your dad’s Leonard Cohen CD is a sure sign your becoming vintage. Enjoying BBC Radio 2 is another, I happened to have it on for a few days whilst we looked after a friends budgie, he loves having noise to compete against. BBC Radio 2 when I was growing up was for old people who weren’t cool enough to listen to BBC Radio 1 which played the music in the current charts. You have to admit time is marching on when there is a radio station  called Absolute ’80’s and a sister station called Absolute ’90’s. Whenever I think of the 1990’s I think it was just a decade ago, I want to cry when I realise it wasn’t. Next year will mark twenty years since I graduated from University. Scary!

Is it wrong that I am so vain that it saddens me more at this precise moment in time that I am more upset about becoming vintage than I am about being sick? What is wrong with me? 

It seems I can cope with having the body of a 90-year-old but not with the natural progression of time. How nuts is that?