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.
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