Old diary entry of epilepsy inpatient.... or was it??
17/11/2009
Wed Morning
No matter how many times I have been in hospital and how well I know the staff when I feel as ill as I did last night all I want is my own bed. I had to have 4 nebulisers and 3 lots of emergency anti epileptic drugs which they kept refusing to give at first as the nurses were saying very loudly that it is all psychological (the doctors had already informed them what medication to give). Am going to get mum to bring some epilepsy information in for them, I’m not coping. I have to rely on the nurses to carry out the doctors orders, I don’t know what to do and when they refuse I don't know what to do or who to turn to.
The man in next bed to me told me off for keeping him awake all night. I said I was REALLY sorry, I hadn’t been well. He said he hadn’t realised but I'd been making some really weird noises, so god knows what he thought I’d been doing all night thrashing around! Mums been told that I had a comfortable night which by our hospital standards seems to mean that the release of a Death Certificate is not imminent. The Doctor has been to see me and has put me in isolation. He thinks I have piggy flu. That afternoon I have big fit. Wake to find lots of people bent over my bed wearing masks. Try to work out what I’m doing in the operating theatre. Then I remember I am just an unwilling contagious hermit and am pleased to realise that nothing has been or is about to be cut off or out!
Mum and Alan turn up, they look weird, when mum talks her mask fills with air and she looks like Kermit, Alan’s mask goes more circular so I chose him as Miss Piggy (suits him!). Hmmmm there seems to be a pig theme running here.
Afternoon
Can’t breathe my ribs and lungs are doing something very painful. The doctor comes in to give me pethadine. In my already drugged state I tell him that there’s no need as if I don’t breathe it doesn’t hurt. That’s what concerns him he says. Apparently he would rather I carried on breathing. He gives me pethadine, I am now in pain but really don’t care. It’s the best stuff I have EVER had, not sure if it’s pain relief, anti sickness or anti biotics making me feel like this, am not complaining though.
Evening
Mum comes back and puts on mask to imitate Kermit and starts sucking extra strong mint, is over come by fumes and starts to look more like a troll. Mint goes in the bin. At half 9 mum goes home I always feel sad but this time I feel too ill to feel sad. I just want to feel better and I want my own bed.
Night time
Horrible horrible horrible, I am having a partial seizure and can hear everything, arms and left leg is shaking like mad, pressure in my head and sounds distorted, Nurse takes my blood pressure, tells me off for moving my arm telling me the machine won’t work, then she tells me it’s rude to ignore her. I feel tears in my eyes, I can’t breathe, she calls another nurse who tells me to breathe properly as I sound like a pig. The other nurse reminds her that’s why I’m in there, and they burst into hysterical laughter. I need to get away but I know that my legs won’t carry me. I shout for mum, they sedate me. Good nights sleep but manage to text Alan first. I needed to know I had a friend there. I would’ve texted mum but she gets upset with nurses sometimes, most are lovely but when they’re not they’re really horrible. Alan says if I run away he’ll be very cross. I’ve seen Alan very cross so I decide to stay put!
Thursday
Woken at 5.30 to have blood pressure taken and anti biotics, same nurse who was in last night, she tells me I look better, I feel awful, I don’t think it’s deliberate malice, just ignorance, I need to sort out doing some local training when feel better. Pain is back, feel awful. Nebulizer, cup of tea and drugs. What more could I ask for? Alan coming in later, Mum coming in tonight. Even had lovely message from my sister last night. Texts keep me going, reminding me of real life outside the four walls. Had a good catch up with one of the nurses who’s known me 10yrs, she tells me all about life in the ‘jungle’ and Katie Price, drugs are kicking in, or is it the subject of conversation? I start to feel sleepy.
Thursday Afternoon
Alan came in and bought with him half a libraries worth of books and a can of Gin and Tonic (I didn‘t drink it but top bloke for the thought!). I gently reminded him that I hope to be out tomorrow. He gently gave me a look and started saying the normal how I’m in the best place etc but I couldn’t cope then. I told him all about what had happened and what the nurse had said the previous night, he wanted to go and talk to who ever was in charge but I am intimidated by medical staff and I know that lady and know that if she was on duty again tonight, she could make things worse for me if she thought I was making trouble. Yes this is what I’m up against. Awful but true. I need to get help with raising awareness, I don’t just mean with epilepsy action I mean getting Joe Bloggs on side too, that will make things easier. After all of that Alan has decided that I am better off being looked after at home so am planning escape route as I write.
Night
It’s 11 o’clock and I need my tablets, I know that the nurses are really busy and the ward is full but I also know that if I don’t have my tablets soon I will have a fit as they’re already late. I now start to be a little worried as I know that if I DO have a fit it will actually take up more of their time than just giving me my tablets!! I know that there are some very poorly patients here tonight and I wish that they would allow me to do my own tablets as I do at home. I could be asleep by now, dreaming of apple sauce and truffles. Mum had come in at 7ish, it was great although the doctor said that I needed the nebuliser which increased my heart rate to the point where it triggered a big fit. Not great. When I came round from my fit I was paralysed and couldn’t talk yet was in agony, No one could help me. It wore off in half an hour but because of the nature of my fits I know that one day it won’t wear off and it frightens me. That’s why I’m desperate for my tablets now. I feel physically sick, emotionally drained and just want to sleep, lying in bed all day isn’t as easy as I make it look. By the time I read this out, if I ever do (it‘s only a diary), I’ll be feeling better but at the moment it’s over whelming and I can’t really imagine another 20yrs like this. Moan over, I’ll be fine.
Thurs Night/Fri early hours
2 a.m and at last I get pain relief, I know that if I am in pain tomorrow they won’t let me go so I need to keep on top of it. I reached a nervous breakdown point at midnight when I phoned mum, then phoned Alan and ranted, then mum, then Alan again to apologise. Mum asked if I wanted her to come back to the hospital but the weather’s awful, I know she would but there’s nothing she can do. I tell her I’m ok, which by now I am. I am reading a book called ‘second wives’ and it’s a really eye opener, it’s fiction but I can see how it could be quite real, potentially the
insecurities and the self comparisons to the ’glamorous ex wife’ and the fact that the husband left the first wife, so why will he want to stay with the current one. Then there’s the children and their issues, I am going to stick to looking after dogs, you can keep them sweet with a bonio, a walk and throwing a tennis ball!
Fri Morning
8.30 and it’s tablet time, not a problem but I want to sleep, 6 texts on mobile, as always people from the outside egging me on. Need to sleep. Had cup of tea, got quite grumpy and had a rant about how I’d been the pub loads while not well as was told to carry on as normal, it was ’only a virus’ then all of a sudden I am classed as someone who no one should have any contact with, talk to, look at etc without wearing a mask and apron. Rant finishes and doctor asks with raised eyebrows what I’ve been drinking while in pub as I shouldn’t be drinking alcohol!!!! He has obviously missed my point. I give up. I want to know why has it gone from my GP telling me to get on with a normal life to suddenly without any tests me being put in isolation? Ward has now got 7 people with swine flu, 4 are in side rooms. Why don’t they stick us all in the same bay? It would save masks aprons etc and we could all grunt at each other. The nurse gives me a look and says I should be on the management team as I talk more sense than those that are in charge. I do feel for them. Am going to read up more on ‘Second Wives’ just in case the dogs let me down.
10.30 YEY!!!! I’m going home, it took a fair bit of haggling and smiling. The doctor listened to my chest, I can breathe in. and out, give a loud cough I haven’t had a fit for a whole 2 hours and WOW suddenly I’m not contagious anymore, just a cynical bitch.
4.00 Tell a lie, I’m still here. Was in quite some pain so had some pain killers that made me sleep. Woken up by nurse with a screechy voice shouting at visitors for not fastening their aprons properly and not putting on masks. I hear a sudden noise from my left right next to my room and see helicopter take off, realising that I’d slept through the helicopter landing but was woken up by screechy having panic attacks about double knots in masks and aprons I hit a new level of grumpiness.
I have done more writing in 4 days while being treated for pneumonia, pleurisy and piggy flu than have done in a long time. Hmmm, don’t try this at home.
Sunday 2 December 2012
Saturday 1 December 2012
riding -the crest of life!
It comes to something when you make an appointment with a GP and get a feeling of almost relief when blood tests come back abnormal, having been so convinced for so long that I was/am imagining things it was almost a weight off my shoulders to see in black and white that there was 'scientific' evidence that there was something wrong. Why should I need this? Why couldn't I be happy with looking at alternative therapies and diets and exercise and sleep patterns and anything else that people were prepared to offer and suggest. I'd tried them. It didn't work. The theory that a little exercise helps improve a state of mind and increases endorphines and helps you to be able to build up to doing more exercise wasn't working. I would shuffle 100yards down the road and back and then sleep. If I managed more than that I was in bed for the next day. It must have been as frustrating for my mother and friends as it was agony for me because to try and explain why you can or can't do something very basic (put the hoover round) without sounding like a majoy hyperchondriac as there was no apparant reason is very difficult.
For years I was ambitious and I wanted to be out there working, preferably with animals. I'd done an NVQ level 2 in Equine Studies at pembrokeshire college and loved every moment of it. I was lucky to have the chance to work in a volunteer basis at the yard on the days that I wasn't in college so it meant that although I got the good bits, riding, lunging, theory etc I also learnt the hard way that in the work place it's about speed as well as effiency and safety. Something which college alone doesn't teach you! With over 25 horses to muck out there wasn't much time to stand around discussing the weekends social life, but that didn't bother me. I was outside and it was heaven. In fact I didn't want to talk to people. I didn't go out much at weekends and people on the whole found it hard to find common ground with me. Unless it was music or animals. The idea of being in an office based environment filled me with dread. I've never been a people's person, at one point it being questionned as to whether I was on the 'aspergers scale' (if that's the correct term) I was able to write what I wanted to get across, I was able to communicate well with animals but all fell apart when it came to relationships with people. On occasions I would be able to take a guess at a social 'interaction' and get it right, other times would fail terribly, the problem was that although unnoticed by many (apart from doctors) it was noticable to me. I had a time table for each day of the week, everything was stuck to when it was meant to happen and everything was fine. When/if it changed my whole life (in my head) was thrown into disarray and I had no idea how to cope.
Today I had a realy eye opening experience when I realised how trapped I am in a world where I've become so reliant on 2 people to ensure that I have any form of social life at all that as soon as that is removed, I have nothing. It's something which I could be very grateful for, it's also something that can be terrifying that in this day and age it is allowed to happen. I'm 28 and have no means of getting from a to b without the help of someone. That's ok, there are plenty of people out there who can't drive, I was unable to take to take me tablets on waking because I'd slept in and it took all of Alan's weight to support mine while I took my medication very patiently administered by him. The feeling of complete reliance and helplessness on my part is so hard to deal with, the loss of dignity and not knowing when or how to get it back. Just making it down the stairs but not finding the strength to fill a kettle of water to make a cup of tea I stagger back to bed. So many plans in my mind, wanting to do so much, all these achievements in my head yet knowing that for another day they are out of reach. Knowing that if one person decides that they’re not doing music anymore or another decides they’re not taking the dogs for a walk means that I’m stuck unable to do either of them either. It’s the type of thing East Enders producers relish in and people think that it doesn’t happen. It does….. people with physical illnesses are driven mentally ill by the treatment of medics and the way people around them are trained to behave. To try and maintain any form of relationship with people takes effort, time and energy. I don’t have excess of energy to spend it on others and I’ve done my best to hold it all together for as long as I can but the time has come to do my best to look forward and see what changes can be made, widening my social circle, getting out more without people. Telling people where I’m going but no worrying about their reaction or what they think. To be told that I can’t go here there or where ever is NOT my problem, I have to learn it’s the problem of those who don’t want me to go there for their own reasons/fears. When I’m well, I’m free.
I look back at the days I spent at the riding stables and walking the dogs and going to the gym, playing music 4 times a week, going to London and I can’t even imagine it was the same person. I was happy, laughter surrounded me and I loved life, everything had an almost odd glow to it, I had seizures but they were ok, they were going to be cured soon. I just try and keep focussed that perhaps, just perhaps that person will be back and that if they’re not, at least I got to experience it. More than some people will but for my own sanity I have to hang onto the hope that that person will be back and that once things are better, I’ll be free from the torture that is stuck in my head. From Alan’s, I try to put a brave face on to get back to my house and see my mum but in reality I want to curl up until it's all over. I've never been able to understand alcoholics or drug addicts but for the first time I want to be able to escape. I don't want to die, that's too final, at the moment I can still see some positives but there are times when I want to take what-ever I can to just sleep through it all until I wake up and it's better. It doesn't work that way though. I'm stuck in a body that is unable to do what I want it to with a brain that doesn't function the way it used to. I cannot begin to imagine what could potentially be another six decades of this (if I were to live to my 80’s!)
What some people appear to either blank out or forget, or perhaps it doesn’t occur to them is that when they can’t cope with my frustrations they can walk away, they can go to the beach with the dogs, go to the shops or, walk out and go home. Driving along today we passed 2 beaches. One of them my bolt hole, I loved it there, used to spend days there as a child and love walking the dogs along there. It hasn’t been an option recently, one, I can’t walk the distance of the beach but the other, no one else has wanted to go.
I take some kind of hopeful prayer that one day I too will pick up my car keys, turn round and tell everyone where I’m going. Not be the one sat on my bed overhearing everyone else’s plans. Or listening to them planning what I too will have for dinner that night before what ever it is that’s happening. I am physically and mentally exhausted today, I can’t see anyway out but if there is, I know I will forge a career and a life of my own away from here. I would like to think that in the next couple of months my cortisol levels will be stabilised enough to go and help at an animal rescue for a few days where I can put some space between myself and the situation I’m in and get things into perspective. Perhaps things won’t seem so bad and prison like, or perhaps it will confirm my ‘fears’ but at least one way or another I will know that action needs to be taken. At times like this I do wish for a crystal ball!!
I don’t know why I feel so alone, sad – rock bottom. People use the term 'depressed' 'down' 'miserable' so much these that often people don't even notice the difference in the words. It's about time people realised that Depression can be as terminal as Cancer or any other life threatening condition unless the underlying cause (WHAT EVER) it is, is treated. To some extent it IS in people's control (unlike other illnesses) but it needs treating. When you've spent 15 years banging on doors of Doctors asking them for help, being referred to mental health teams who say it's something physical who then send you back to the medics (and each appointment takes minimum of 6months wait) who then decide you need extra tests and refer you to somewhere else but in the meant time, because they've taken blood tests and told you that an appointment will be posted out that's the statistic dealt with. I'm ticked off their registar as far as the NHS is concerned, I've been seen and it's great. Blood pressure taken, Weight Taken, Blood tests done, follow up appointment made with another department (just to get another opinion) and that's it.... targets reached. I am sent on my way shuffling out of the hospital to try and resume some sense of normality while the Consultant sees his next patient. I cannot cope. It's like living in a real life nightmare just treading water to keep breathing because there is no where to turn to. Depressed is not an attention seeking word to use, it's not a way of getting sympathy, it is the most horrific mind and soul emcompossing feeling of no hope, no help and no future. My back is excruciating (another kidney infection) and I’m aching. Last night I believed today was going to be so wonderful, I’m sure it could have been. Sadly it wasn’t but tomorrow is a new day and a new beginning….. or is it different day same s**t? I guess it depends on the state of mind. I hope for your sake as well as mine that mine has improved by then!!
For years I was ambitious and I wanted to be out there working, preferably with animals. I'd done an NVQ level 2 in Equine Studies at pembrokeshire college and loved every moment of it. I was lucky to have the chance to work in a volunteer basis at the yard on the days that I wasn't in college so it meant that although I got the good bits, riding, lunging, theory etc I also learnt the hard way that in the work place it's about speed as well as effiency and safety. Something which college alone doesn't teach you! With over 25 horses to muck out there wasn't much time to stand around discussing the weekends social life, but that didn't bother me. I was outside and it was heaven. In fact I didn't want to talk to people. I didn't go out much at weekends and people on the whole found it hard to find common ground with me. Unless it was music or animals. The idea of being in an office based environment filled me with dread. I've never been a people's person, at one point it being questionned as to whether I was on the 'aspergers scale' (if that's the correct term) I was able to write what I wanted to get across, I was able to communicate well with animals but all fell apart when it came to relationships with people. On occasions I would be able to take a guess at a social 'interaction' and get it right, other times would fail terribly, the problem was that although unnoticed by many (apart from doctors) it was noticable to me. I had a time table for each day of the week, everything was stuck to when it was meant to happen and everything was fine. When/if it changed my whole life (in my head) was thrown into disarray and I had no idea how to cope.
I look back at the days I spent at the riding stables and walking the dogs and going to the gym, playing music 4 times a week, going to London and I can’t even imagine it was the same person. I was happy, laughter surrounded me and I loved life, everything had an almost odd glow to it, I had seizures but they were ok, they were going to be cured soon. I just try and keep focussed that perhaps, just perhaps that person will be back and that if they’re not, at least I got to experience it. More than some people will but for my own sanity I have to hang onto the hope that that person will be back and that once things are better, I’ll be free from the torture that is stuck in my head. From Alan’s, I try to put a brave face on to get back to my house and see my mum but in reality I want to curl up until it's all over. I've never been able to understand alcoholics or drug addicts but for the first time I want to be able to escape. I don't want to die, that's too final, at the moment I can still see some positives but there are times when I want to take what-ever I can to just sleep through it all until I wake up and it's better. It doesn't work that way though. I'm stuck in a body that is unable to do what I want it to with a brain that doesn't function the way it used to. I cannot begin to imagine what could potentially be another six decades of this (if I were to live to my 80’s!)
What some people appear to either blank out or forget, or perhaps it doesn’t occur to them is that when they can’t cope with my frustrations they can walk away, they can go to the beach with the dogs, go to the shops or, walk out and go home. Driving along today we passed 2 beaches. One of them my bolt hole, I loved it there, used to spend days there as a child and love walking the dogs along there. It hasn’t been an option recently, one, I can’t walk the distance of the beach but the other, no one else has wanted to go.
I take some kind of hopeful prayer that one day I too will pick up my car keys, turn round and tell everyone where I’m going. Not be the one sat on my bed overhearing everyone else’s plans. Or listening to them planning what I too will have for dinner that night before what ever it is that’s happening. I am physically and mentally exhausted today, I can’t see anyway out but if there is, I know I will forge a career and a life of my own away from here. I would like to think that in the next couple of months my cortisol levels will be stabilised enough to go and help at an animal rescue for a few days where I can put some space between myself and the situation I’m in and get things into perspective. Perhaps things won’t seem so bad and prison like, or perhaps it will confirm my ‘fears’ but at least one way or another I will know that action needs to be taken. At times like this I do wish for a crystal ball!!
I don’t know why I feel so alone, sad – rock bottom. People use the term 'depressed' 'down' 'miserable' so much these that often people don't even notice the difference in the words. It's about time people realised that Depression can be as terminal as Cancer or any other life threatening condition unless the underlying cause (WHAT EVER) it is, is treated. To some extent it IS in people's control (unlike other illnesses) but it needs treating. When you've spent 15 years banging on doors of Doctors asking them for help, being referred to mental health teams who say it's something physical who then send you back to the medics (and each appointment takes minimum of 6months wait) who then decide you need extra tests and refer you to somewhere else but in the meant time, because they've taken blood tests and told you that an appointment will be posted out that's the statistic dealt with. I'm ticked off their registar as far as the NHS is concerned, I've been seen and it's great. Blood pressure taken, Weight Taken, Blood tests done, follow up appointment made with another department (just to get another opinion) and that's it.... targets reached. I am sent on my way shuffling out of the hospital to try and resume some sense of normality while the Consultant sees his next patient. I cannot cope. It's like living in a real life nightmare just treading water to keep breathing because there is no where to turn to. Depressed is not an attention seeking word to use, it's not a way of getting sympathy, it is the most horrific mind and soul emcompossing feeling of no hope, no help and no future. My back is excruciating (another kidney infection) and I’m aching. Last night I believed today was going to be so wonderful, I’m sure it could have been. Sadly it wasn’t but tomorrow is a new day and a new beginning….. or is it different day same s**t? I guess it depends on the state of mind. I hope for your sake as well as mine that mine has improved by then!!
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