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!!
Thursday 29 November 2012
First Adrenal Crisis
My first adrenal Crisis was the most terrifying experience of my life, it's no exaggeration to say that I thought I was going to die, please don't think i'm being a major drama queen, I wouldn't wish it on my worst enemy. Here is a little of what I remember:
The spasms start again, this time from my neck. I can feel the muscle wrench tight as the agony strikes down every muscle and every bone rattles with the freezing cold that I can feel from my inside out. Sweat pours out of me but I need more blankets, the pain is endless and I can’t do it anymore, my legs tighten and my feet cramp. My hamstrings and thighs are burning with pain. I relax. Warmth spreads around me, 30 seconds later it happens again, this time I’m so sick and crying. Water is pouring out of my ears and nose, I am wet through and the only movements I make are out of my control yet I'm awake and aware I don’t have energy left but somehow I shout for help. Don’t let me die, just get me some help.
A nurse appears from around the corner and takes my blood pressure, it’s 180/90 and rising and my temperature, it’s slightly raised 37.8 and rising, I’m crying and reassured to relax and that a doctor will be with me. Dr Mohammed turns up, he’s lovely, he’s calm, he’s reassuring …. Until he turns to the nurse ‘Nurse I need this patient canulated now, she is seriously ill and I can’t get any medication into her’ I start to panic ‘please’ , I whisper, running out of energy, “ I really need you to help me cos I really feel quite ill” His manner is gentle and calm, “ you’re a brave girl, you will be fine I will look after you, can you tell me when you started to feel like this?” For the first time I feel completely out of control. There is something going horribly wrong with my body and I can't stop it. The Doctor speaks again, very gently and suddenly a calmness surrounds the room and I feel at peace, he’s going to make it better, it’s all ok. “ I gather my strength… “it started on Thursday….” I begin, feeling that all will be ok, until “THURSDAY???? He yelps? Why are you here NOW? Why not on Thursday??” oh dear, maybe not so calm. “you should have been in here on THURSDAY!”
I try desperately hard to explain to him that I’ve always been scared of hospitals and that Doctors blame me for being a hyperchondriac and I thought I only had a cold. He calms down and begins his work, giving orders to nurses who glare at him as he is frustrated that there is only ONE nurse available in resuss and she isn’t ‘qualified to canulate’. As the doctor reassuringly puts a needle in one arm and Alan holds it still Mum holds my hand. I’ll be ok, the doctor’s said I’ll be ok. It takes 40minutes. 40minutes of Cramps and full body spasms from my head to my feet and my body pouring with sweat. My trousers and the blankets are stuck to me. It’s the third change in blankets since arriving at the hospital. I start to feel warmth. In my hands first and my head and tummy. Gradually it spreads, the adrenaline and steroids are kicking in. Things start to become clear, visually and mentally. I see the doctors face clearly for the first time. He has dark skin and a kind look, mum’s eyes are red. Alan is talking to me, telling me i'll be ok.
They wait for my blood pressure to return to normal and take me to a ward. ACDU, the Adult Clinical Decision Unit. I lay on a casualty trolley in cold wet blankets attached to a drip giving me what my body can’t produce anymore due to the complete ignorance of Doctors who refused me ONE blood test. ONE blood test, two years ago and this would never have happened. Now, aged 28 I have a zimmer frame for when I cant take the weight on my legs. At the moment I hope to at some point have the strength to sit up unaided. I think of music. Desperately thinking I’ll never play again. The one thing that kept me going and I’ve lost that. People message me and call me and I reply to messages but not phone calls. I don’t want to talk to anyone. 3 days later and with the help of Mum or Alan I can make it from my bed to the ward bathroom. I want to go home, I want my own bed. 2 people have died on the bay since I’ve been here and it makes me feel I’m extremely ungrateful. I feel even more guilty as I think that even though they were elderly they were still someone’s relatives and I need to get out of there and pull myself together.
I go home with the permission of my consultant. Two days later I awake with a sore throat, I can’t walk, I can’t even use my frame, my hands won’t take my weight. I stagger to and from the bathroom until I can’t move anymore. The sweats have started again. I’m still on the anti biotics that I came home on, I can’t understand the relapse and the lack of strength. I need to get better. I must get better. I could cope with fits but I can’t cope with this, there is no let up. Alan and mum towel me dry and change my bedding and clothes, wet through with sweat but icey cold to the touch. Hushed discussion and it’s decided to call the Doctors on call. Alan has given my steroids and it’s not made any difference. The doctors wonderful, explains to mum to dial 999 and state ‘Adrenal Crisis’. After what seems like hours the paramedics arrive and after doing their checks get me into the ambulance. They need to administer Hydro Cortisone to kick start the adrenal glands. Again, they are calm and reassuring. Again I go through the same ritual. This time I’m questioned as to WHY did I drop the dose of my steroids back to normal!? I probably look as confused as I feel as the doctor calmly explains that while I am on antibiotics and run down I should be on at least double the dose of normal steroids and if I’m doing anything stressful I need to treble the dose. This comes from a team of doctors who for years have been telling me there is nothing wrong. Better late than never? Maybe, doesn’t feel like it at the moment though. So Epilepsy may be in the past and Addisons is my future but Epilepsy (if it ever was that) was a lot easier to deal with….. People had heard of that!
The spasms start again, this time from my neck. I can feel the muscle wrench tight as the agony strikes down every muscle and every bone rattles with the freezing cold that I can feel from my inside out. Sweat pours out of me but I need more blankets, the pain is endless and I can’t do it anymore, my legs tighten and my feet cramp. My hamstrings and thighs are burning with pain. I relax. Warmth spreads around me, 30 seconds later it happens again, this time I’m so sick and crying. Water is pouring out of my ears and nose, I am wet through and the only movements I make are out of my control yet I'm awake and aware I don’t have energy left but somehow I shout for help. Don’t let me die, just get me some help.
A nurse appears from around the corner and takes my blood pressure, it’s 180/90 and rising and my temperature, it’s slightly raised 37.8 and rising, I’m crying and reassured to relax and that a doctor will be with me. Dr Mohammed turns up, he’s lovely, he’s calm, he’s reassuring …. Until he turns to the nurse ‘Nurse I need this patient canulated now, she is seriously ill and I can’t get any medication into her’ I start to panic ‘please’ , I whisper, running out of energy, “ I really need you to help me cos I really feel quite ill” His manner is gentle and calm, “ you’re a brave girl, you will be fine I will look after you, can you tell me when you started to feel like this?” For the first time I feel completely out of control. There is something going horribly wrong with my body and I can't stop it. The Doctor speaks again, very gently and suddenly a calmness surrounds the room and I feel at peace, he’s going to make it better, it’s all ok. “ I gather my strength… “it started on Thursday….” I begin, feeling that all will be ok, until “THURSDAY???? He yelps? Why are you here NOW? Why not on Thursday??” oh dear, maybe not so calm. “you should have been in here on THURSDAY!”
I try desperately hard to explain to him that I’ve always been scared of hospitals and that Doctors blame me for being a hyperchondriac and I thought I only had a cold. He calms down and begins his work, giving orders to nurses who glare at him as he is frustrated that there is only ONE nurse available in resuss and she isn’t ‘qualified to canulate’. As the doctor reassuringly puts a needle in one arm and Alan holds it still Mum holds my hand. I’ll be ok, the doctor’s said I’ll be ok. It takes 40minutes. 40minutes of Cramps and full body spasms from my head to my feet and my body pouring with sweat. My trousers and the blankets are stuck to me. It’s the third change in blankets since arriving at the hospital. I start to feel warmth. In my hands first and my head and tummy. Gradually it spreads, the adrenaline and steroids are kicking in. Things start to become clear, visually and mentally. I see the doctors face clearly for the first time. He has dark skin and a kind look, mum’s eyes are red. Alan is talking to me, telling me i'll be ok.
They wait for my blood pressure to return to normal and take me to a ward. ACDU, the Adult Clinical Decision Unit. I lay on a casualty trolley in cold wet blankets attached to a drip giving me what my body can’t produce anymore due to the complete ignorance of Doctors who refused me ONE blood test. ONE blood test, two years ago and this would never have happened. Now, aged 28 I have a zimmer frame for when I cant take the weight on my legs. At the moment I hope to at some point have the strength to sit up unaided. I think of music. Desperately thinking I’ll never play again. The one thing that kept me going and I’ve lost that. People message me and call me and I reply to messages but not phone calls. I don’t want to talk to anyone. 3 days later and with the help of Mum or Alan I can make it from my bed to the ward bathroom. I want to go home, I want my own bed. 2 people have died on the bay since I’ve been here and it makes me feel I’m extremely ungrateful. I feel even more guilty as I think that even though they were elderly they were still someone’s relatives and I need to get out of there and pull myself together.
I go home with the permission of my consultant. Two days later I awake with a sore throat, I can’t walk, I can’t even use my frame, my hands won’t take my weight. I stagger to and from the bathroom until I can’t move anymore. The sweats have started again. I’m still on the anti biotics that I came home on, I can’t understand the relapse and the lack of strength. I need to get better. I must get better. I could cope with fits but I can’t cope with this, there is no let up. Alan and mum towel me dry and change my bedding and clothes, wet through with sweat but icey cold to the touch. Hushed discussion and it’s decided to call the Doctors on call. Alan has given my steroids and it’s not made any difference. The doctors wonderful, explains to mum to dial 999 and state ‘Adrenal Crisis’. After what seems like hours the paramedics arrive and after doing their checks get me into the ambulance. They need to administer Hydro Cortisone to kick start the adrenal glands. Again, they are calm and reassuring. Again I go through the same ritual. This time I’m questioned as to WHY did I drop the dose of my steroids back to normal!? I probably look as confused as I feel as the doctor calmly explains that while I am on antibiotics and run down I should be on at least double the dose of normal steroids and if I’m doing anything stressful I need to treble the dose. This comes from a team of doctors who for years have been telling me there is nothing wrong. Better late than never? Maybe, doesn’t feel like it at the moment though. So Epilepsy may be in the past and Addisons is my future but Epilepsy (if it ever was that) was a lot easier to deal with….. People had heard of that!
Tuesday 27 November 2012
things change too fast
Ok so it was only the day before yesterday that I updated you but so much happens so fast in this life of music, drugs and rescue dog world!
First of all I'm pleased to say that physically I feel a lot better, having gone from feeling like I was going to die (nothing like a bit of drama ey?) on Sunday to being certain of it yesterday, I'm feeling on the mend today. All because I missed one dose of medication on Saturday. Madness. Or at least it is to me so heck know's what it must appear to others. I didn't realise that missing one dose of steroids meant I would play catch up for a few days especially having used so much cortisol and adrenaline during the gig I played on Saturday. I'm hoping that with another good night's sleep and doing nothing tomorrow I will be even better come Thurday. The problem is as soon as I feel better I do more, then I set myself back again. The symptoms being exhaustions and cramps with sweats being the last and dangerous bit people can't always see what is happening so although I can say I don't feel well, I need to go home etc, it's normally only when the sweats start that the 'panic' sets in and it's suggested that we 'pack up and go'. I can understand this but by then it's really difficult as it's nearly impossible for me to put one foot in front of the other.
Today was mostly spent sleeping inbetween waking up we through with sweat but at least I was able to sleep and not feel bad about it. It gets to the point where I feel guilty for sleeping when I know I should be doing other things, this in turn keeps me awake, then I get ill and need more medication and more sleep..... vicious circle!! Today was one of those 'live for the moment' days when I managed it. Laying on my back I realised how comfy I was and that there was absolutely nothing that needed doing that couldn't wait and that although I felt quite poorly I was warm and the horrible feelings would pass. It's been a very long time since I've been able to get into that mind set and it's not easy but it does help. Addisons is a condition which I am still trying really hard to get my head round. Having been diagnosed with epilepsy for so many years I thought that was hard but inbetween seizures I was fine, now as it turns out it could easily have been my adrenal glands failing that were causing those fits and there ISN'T any time when I feel fine, although i'm hoping to be able to reach the calm state of mind I acheived today more often.
Changing the subject, quite dramatically when I started helping in the 'world of rescue' dogs I went into it with an incredibly short sighted vision of the type of people we would be likely to meet. The type who are kind, understanding, want to help animals, want the world to be a better place.... a bit like the Miss World competitions I guess but without the bikini's. What a wake up call it was and continues to be. We are fairly fortunate (although there are moments) with the rescue we help with but like in all walks of life there are people that you get on with and those you don't. But, don't judge people through facebook or forums. Get to know them properly or if you have nothing pleasant to say then don't. If someone posted something I didn't agree with and I didn't like it but it wasn't harming anyone, I'd just ignore it but over the last few months I've had messages from people who should have their mouths gaffer taped and they should have to ask permission before they are allowed near a computer.
Everyone has their problems in one way or another, some are open about them, others aren't. I try not to 'go on' about mine but being such a rare condition (one in 4,500ish) and a potentially very suddenly fatal one I feel that if I can help just one person feel that they're not alone then it's worth it. As I sit here wondering whether or not to attend a local music session I have to take into consideration that it's a 40minute journey there, 3 hours playing (on and off) 40 minute drive back, the carrying of my cello into the building and that's AFTER I've found the energy to get out of bed, showered, dressed and eat food. All things which I took for granted for so long now have to be planned to military timings with my tablets and how long each dose will last because if it runs out while I'm trying to do something I'm completley stuck. Water (sweat) pouring out of my ears, nose, eyes, forehead, calf muscles and anywhere else you can think of but the icey coldness and being completely incapable of getting warm is the worst feeling.
People continue to reassure me that it's wonderful now that they know what they're dealing with, well maybe when i'm on the correct dose of drugs and can start to lead the type of life I had before I'll be able to see where they're coming from. There are still some days when I struggle but today has been good. I've not acheived anything, but i've had moments of struggling during the day, rather than a really bad day with the odd good bit. Things are on the up.
We have 2 pups with applications for their forever homes in. It's Tuesday, they don't go out on the 'run' to spread about the country until Sunday so who knows who else could be applied for. It would mean the world to me to see these pups through to their forever homes. I hope who ever is fortunate enough to foster them realises how much we love them and the reason why we are prepared to pass them to other fosterers is to free up space to help more dogs....... not to pass them on. It's really difficult. They've been here since before their eyes opened. Now at the cheeky 7 1/2 week old stage they are adorable. Every dog we've had through here we've treated as our own, loved and nutured it until the right home has come along. As much as I know these people love dogs, how do I know they'll pick the right home? I know deep down that it will all be fine and will all work out for the best, it just may take longer.
Signing off now as starting to flag but even so.......
A slightly happier
Steph
First of all I'm pleased to say that physically I feel a lot better, having gone from feeling like I was going to die (nothing like a bit of drama ey?) on Sunday to being certain of it yesterday, I'm feeling on the mend today. All because I missed one dose of medication on Saturday. Madness. Or at least it is to me so heck know's what it must appear to others. I didn't realise that missing one dose of steroids meant I would play catch up for a few days especially having used so much cortisol and adrenaline during the gig I played on Saturday. I'm hoping that with another good night's sleep and doing nothing tomorrow I will be even better come Thurday. The problem is as soon as I feel better I do more, then I set myself back again. The symptoms being exhaustions and cramps with sweats being the last and dangerous bit people can't always see what is happening so although I can say I don't feel well, I need to go home etc, it's normally only when the sweats start that the 'panic' sets in and it's suggested that we 'pack up and go'. I can understand this but by then it's really difficult as it's nearly impossible for me to put one foot in front of the other.
Today was mostly spent sleeping inbetween waking up we through with sweat but at least I was able to sleep and not feel bad about it. It gets to the point where I feel guilty for sleeping when I know I should be doing other things, this in turn keeps me awake, then I get ill and need more medication and more sleep..... vicious circle!! Today was one of those 'live for the moment' days when I managed it. Laying on my back I realised how comfy I was and that there was absolutely nothing that needed doing that couldn't wait and that although I felt quite poorly I was warm and the horrible feelings would pass. It's been a very long time since I've been able to get into that mind set and it's not easy but it does help. Addisons is a condition which I am still trying really hard to get my head round. Having been diagnosed with epilepsy for so many years I thought that was hard but inbetween seizures I was fine, now as it turns out it could easily have been my adrenal glands failing that were causing those fits and there ISN'T any time when I feel fine, although i'm hoping to be able to reach the calm state of mind I acheived today more often.
Changing the subject, quite dramatically when I started helping in the 'world of rescue' dogs I went into it with an incredibly short sighted vision of the type of people we would be likely to meet. The type who are kind, understanding, want to help animals, want the world to be a better place.... a bit like the Miss World competitions I guess but without the bikini's. What a wake up call it was and continues to be. We are fairly fortunate (although there are moments) with the rescue we help with but like in all walks of life there are people that you get on with and those you don't. But, don't judge people through facebook or forums. Get to know them properly or if you have nothing pleasant to say then don't. If someone posted something I didn't agree with and I didn't like it but it wasn't harming anyone, I'd just ignore it but over the last few months I've had messages from people who should have their mouths gaffer taped and they should have to ask permission before they are allowed near a computer.
Everyone has their problems in one way or another, some are open about them, others aren't. I try not to 'go on' about mine but being such a rare condition (one in 4,500ish) and a potentially very suddenly fatal one I feel that if I can help just one person feel that they're not alone then it's worth it. As I sit here wondering whether or not to attend a local music session I have to take into consideration that it's a 40minute journey there, 3 hours playing (on and off) 40 minute drive back, the carrying of my cello into the building and that's AFTER I've found the energy to get out of bed, showered, dressed and eat food. All things which I took for granted for so long now have to be planned to military timings with my tablets and how long each dose will last because if it runs out while I'm trying to do something I'm completley stuck. Water (sweat) pouring out of my ears, nose, eyes, forehead, calf muscles and anywhere else you can think of but the icey coldness and being completely incapable of getting warm is the worst feeling.
People continue to reassure me that it's wonderful now that they know what they're dealing with, well maybe when i'm on the correct dose of drugs and can start to lead the type of life I had before I'll be able to see where they're coming from. There are still some days when I struggle but today has been good. I've not acheived anything, but i've had moments of struggling during the day, rather than a really bad day with the odd good bit. Things are on the up.
We have 2 pups with applications for their forever homes in. It's Tuesday, they don't go out on the 'run' to spread about the country until Sunday so who knows who else could be applied for. It would mean the world to me to see these pups through to their forever homes. I hope who ever is fortunate enough to foster them realises how much we love them and the reason why we are prepared to pass them to other fosterers is to free up space to help more dogs....... not to pass them on. It's really difficult. They've been here since before their eyes opened. Now at the cheeky 7 1/2 week old stage they are adorable. Every dog we've had through here we've treated as our own, loved and nutured it until the right home has come along. As much as I know these people love dogs, how do I know they'll pick the right home? I know deep down that it will all be fine and will all work out for the best, it just may take longer.
Signing off now as starting to flag but even so.......
A slightly happier
Steph
Sunday 25 November 2012
Nearly a week on.........
The weather has been terrible, the days are as dark as what the nights should be, I am constantly battling to avert an adrenal crisis by ramming more steroids down my throat and trying to focus on how lucky I am....... Sometimes it's pretty hard!
Last March the trio I sing with (as mentioned in previous blog) bought out an Album for Many Tears Animal Rescue. Now the nights are cold and depressing we thought we'd get back in the studio again. Sounds posh and fun. It can be. But it's hard work. For someone like myself who can busk along to practically anything I don't know why but I suffer from 'red light fever'. The minute I'm counted in to record you can guarantee that a wrong note is produced, or if I get as far as the last few bars I mess up the ending. This isn't helped because even though it's only the three of us it still uses adrenaline and I can't replace it as quickly as I'm using it so tire a lot quicker than the other two! On the whole they are incredibly patient with me (more so than I am!!) but I know that it must be really frustrating on occasions and I'm grateful that they put up with me and the obstacles that get in the way. They are 2 special people.
For the last 5 weeks we've had a litter of eight pups in our house. Their mum was rescued by Many Tears and they all came here. When the babes were 4 weeks old their mum went on strike and decided under no circumstances what so ever was she going to feed them anymore. She'd done her bit and I can't blame her. She didn't have much milk and had been struggling. We weaned the pups (probably quicker than normal but it had to be done) and they are all thriving but the sad thing is, 2 have pretty limited vision. They are now 7 1/2 weeks old and looking for forever homes to go to when they are old enough (in a week or so) but to see the 2 with visual problems find their way around our living room as they remember where every bit of furniture is and where the toy box is, is rather emotional. These pups will never know any different but what will life be like for them? I can only hope and pray that the family that applies for them and get the go ahead will look after them and treasure all the special little moments throughout the dogs life like you would a child. If I could keep them I would. If I kept them it would mean not fostering dogs anymore. Can I justify not helping anymore dogs to help one dog whose perfect home could be out there somewhere? It's an argument I have with myself all the time. The problems incurred with a large litter (8 isn't that big for a large breed but big enough!) are often avoidable if breeding is responsible. Sadly with strays and pets who escape etc this isn't the case. We have no idea who the dad was or what conditions they were born in, the mum was incredibly thin and malnurished. The important thing now is these pups are happy. They have warmth and full tummy's, lots of toys and regular cuddles, they will have happy lives full of love.
We did a gig last night. It was a cracker. Great audience, lovely atmosphere and wonderful food. We didn't play too badly either!! So everything in my life appears to be coming together yet I can't get my head into the 'feel good' bit. Once upon a time in the days before depression set in (there were days!!) I could seperate the bad bits from the good and focus on the positive.
Today was a really hard day. I think part of the diffficulty I have is accepting that it's hard because I did a gig last night and I'm paying for it now. So many people read my Facebook page or see me out and think that it's better, not realising that yes I attended a session or did a gig but that was the only thing I did for 3 days apart from sleep and take pills. Having spent most of today fighing off having to be admitted to hospital with Adrenal Crisis and putting Mum and Alan through hell I at last succumbed and took extra medication. Tablets scare me. I don't have a problem swallowing them, I do have a problem with the long term effects that they have on people physically. The short term ones have been hard enough to get my head round. I've never been the prettiest girl in the class and to go from the weight I was to it increasing by 3 stone in as many months is really difficult to deal with. People say you can be fat and happy..... I'd like to hear from you please and tell me how!!?? I will accept that I would rather be the size I am at the moment and be able to move than be a size ten and be on a zimmer frame, how ever there should be a happy medium somewhere.
Having spent most of last week sorting out my bedroom so that I could relocate upstairs allowing us room to foster MORE pups and dogs (helping my dream of running a dog rescue come true) I realised that I can't manage the stairs like I thought. Within three trips up and down I was needing to lay down with my feet higher than my head and swallow Hydrocortisone tablets like they were smarties. No it's not because I was unfit, it was just the physical action of packing each box and carrying it up the stairs. Something which I would have taken for granted only not so long ago. Now I have the problem of sleeping downstairs but having my clothes upstairs! Luckily I have a very understanding mother who is in the process of helping me try to decide..... do I continue to move things upstairs to help more dogs but do it slower or, or I bring everything back down? In the meantime she helps me by getting my clothes (already moved up) and bringing them down. I couldn't function without her or Alan, something which many people may think I take for granted but not one single day goes by when that is something that I do realise. How lucky I am to have them. As things get darker in my mind I try to focus on the good bits, I can hear a flock of seagull type noises from the living room, it's the pups tea time. Their body clock is more reliable than big ben. I know then that it will be puppy cuddle time and there is nothing more therapeutic (apart from playing music) than having an innocent, disabled (yet not because they know no different) pup fall asleep on your lap making little snuffle noises. If there is anyone out there able to offer a rescue dog a home, please do. It's hard work, it's frustrating, it's heart breaking but the rewards out weight it all. Go on, give a rescue dog a home.
My LATEST panic is at the age of 28, I used to be full of energy, although never terribly accademic very career driven, I knew where I wanted to be but, where am I and where am I heading? I have a younger sister who always appeared so laid back not caring where life was taking her who now owns her own house and is climbing the career ladder. I'm treading water to get from morning to night and mulling over where the heck things went wrong. I think I've just hit the nail on the head, perhaps if I looked to the future and if I do find myself looking bac focus on what I HAVE achieved things would look start to seem more positive and tomorrow is a new day. I blame the time year..... Tis the season to be jolly my a**e :-D
p.s This is being 'published' as a stream of consiousness...... all errors gramatical and typo's will be corrected shortly
Last March the trio I sing with (as mentioned in previous blog) bought out an Album for Many Tears Animal Rescue. Now the nights are cold and depressing we thought we'd get back in the studio again. Sounds posh and fun. It can be. But it's hard work. For someone like myself who can busk along to practically anything I don't know why but I suffer from 'red light fever'. The minute I'm counted in to record you can guarantee that a wrong note is produced, or if I get as far as the last few bars I mess up the ending. This isn't helped because even though it's only the three of us it still uses adrenaline and I can't replace it as quickly as I'm using it so tire a lot quicker than the other two! On the whole they are incredibly patient with me (more so than I am!!) but I know that it must be really frustrating on occasions and I'm grateful that they put up with me and the obstacles that get in the way. They are 2 special people.
For the last 5 weeks we've had a litter of eight pups in our house. Their mum was rescued by Many Tears and they all came here. When the babes were 4 weeks old their mum went on strike and decided under no circumstances what so ever was she going to feed them anymore. She'd done her bit and I can't blame her. She didn't have much milk and had been struggling. We weaned the pups (probably quicker than normal but it had to be done) and they are all thriving but the sad thing is, 2 have pretty limited vision. They are now 7 1/2 weeks old and looking for forever homes to go to when they are old enough (in a week or so) but to see the 2 with visual problems find their way around our living room as they remember where every bit of furniture is and where the toy box is, is rather emotional. These pups will never know any different but what will life be like for them? I can only hope and pray that the family that applies for them and get the go ahead will look after them and treasure all the special little moments throughout the dogs life like you would a child. If I could keep them I would. If I kept them it would mean not fostering dogs anymore. Can I justify not helping anymore dogs to help one dog whose perfect home could be out there somewhere? It's an argument I have with myself all the time. The problems incurred with a large litter (8 isn't that big for a large breed but big enough!) are often avoidable if breeding is responsible. Sadly with strays and pets who escape etc this isn't the case. We have no idea who the dad was or what conditions they were born in, the mum was incredibly thin and malnurished. The important thing now is these pups are happy. They have warmth and full tummy's, lots of toys and regular cuddles, they will have happy lives full of love.
We did a gig last night. It was a cracker. Great audience, lovely atmosphere and wonderful food. We didn't play too badly either!! So everything in my life appears to be coming together yet I can't get my head into the 'feel good' bit. Once upon a time in the days before depression set in (there were days!!) I could seperate the bad bits from the good and focus on the positive.
Today was a really hard day. I think part of the diffficulty I have is accepting that it's hard because I did a gig last night and I'm paying for it now. So many people read my Facebook page or see me out and think that it's better, not realising that yes I attended a session or did a gig but that was the only thing I did for 3 days apart from sleep and take pills. Having spent most of today fighing off having to be admitted to hospital with Adrenal Crisis and putting Mum and Alan through hell I at last succumbed and took extra medication. Tablets scare me. I don't have a problem swallowing them, I do have a problem with the long term effects that they have on people physically. The short term ones have been hard enough to get my head round. I've never been the prettiest girl in the class and to go from the weight I was to it increasing by 3 stone in as many months is really difficult to deal with. People say you can be fat and happy..... I'd like to hear from you please and tell me how!!?? I will accept that I would rather be the size I am at the moment and be able to move than be a size ten and be on a zimmer frame, how ever there should be a happy medium somewhere.
Having spent most of last week sorting out my bedroom so that I could relocate upstairs allowing us room to foster MORE pups and dogs (helping my dream of running a dog rescue come true) I realised that I can't manage the stairs like I thought. Within three trips up and down I was needing to lay down with my feet higher than my head and swallow Hydrocortisone tablets like they were smarties. No it's not because I was unfit, it was just the physical action of packing each box and carrying it up the stairs. Something which I would have taken for granted only not so long ago. Now I have the problem of sleeping downstairs but having my clothes upstairs! Luckily I have a very understanding mother who is in the process of helping me try to decide..... do I continue to move things upstairs to help more dogs but do it slower or, or I bring everything back down? In the meantime she helps me by getting my clothes (already moved up) and bringing them down. I couldn't function without her or Alan, something which many people may think I take for granted but not one single day goes by when that is something that I do realise. How lucky I am to have them. As things get darker in my mind I try to focus on the good bits, I can hear a flock of seagull type noises from the living room, it's the pups tea time. Their body clock is more reliable than big ben. I know then that it will be puppy cuddle time and there is nothing more therapeutic (apart from playing music) than having an innocent, disabled (yet not because they know no different) pup fall asleep on your lap making little snuffle noises. If there is anyone out there able to offer a rescue dog a home, please do. It's hard work, it's frustrating, it's heart breaking but the rewards out weight it all. Go on, give a rescue dog a home.
My LATEST panic is at the age of 28, I used to be full of energy, although never terribly accademic very career driven, I knew where I wanted to be but, where am I and where am I heading? I have a younger sister who always appeared so laid back not caring where life was taking her who now owns her own house and is climbing the career ladder. I'm treading water to get from morning to night and mulling over where the heck things went wrong. I think I've just hit the nail on the head, perhaps if I looked to the future and if I do find myself looking bac focus on what I HAVE achieved things would look start to seem more positive and tomorrow is a new day. I blame the time year..... Tis the season to be jolly my a**e :-D
p.s This is being 'published' as a stream of consiousness...... all errors gramatical and typo's will be corrected shortly
Tuesday 20 November 2012
the beginning............
For many years I've been keeping diaries of my experiences through life, wondering what the impact would have on my future, mulling over whether or not choices I was being 'forced' into making at that time would have an effect on my life and if so what. Most of the time I have found the experience of putting my thoughts down on paper to be therapeutic and make more sense of what was happening. Other times it just gave me more time to think about it and get stressed! I'd not been to uni, would I ever be successful, I'm not married with kids, is it all too late etc?
This Blog is not about wanting sympathy; I don't want people to think that I'm brave and I certainly don't want congratulating on anything. The ONLY aim of this blog is to try and get other people to understand the up-hill battle of getting out of bed in the morning, looking out of the window, seeing that the sun is shining (it does happen sometimes you know!) , knowing that you live in a beautiful part of the world and are surrounded by so many people that care yet for some reason (best known to medics, and they're keeping it to themselves!) unable to feel the happiness and joy that you know should be there.
If you are unwell and have a diagnosis it doesn't mean that it's great news because they know what they're dealing with. It doesn't mean that life has changed dramatically for the better since I'm on a new regime of meds etc. It DOES mean that I can relate to people who I couldn't before. It wasn't that I didn't want to, and I did believe them when they told me they felt really ill, I just didn't 'get it'.
I was 15 when I was diagnosed with epilepsy, I was informed that it would take approximately 18months to get the seizures controlled. In that time (13 years) , my step father died, I lost contact with members of my extended family who vowed they would be there 'what ever happened', and I got 'stuck' in the NHS Drug dealing service (there's no other way of putting it) where they would prescribe something to cure one thing which then triggered something else. This in turn needed further medication etc. At one point I was on 9 different prescribed drugs a day 5 of which were to combat the side effects of the other 4. I am certainly aware that there are people out there a lot worse off than myself, but what many don't realise is the number of people who are out there who don't KNOW any of this. Our country is so obsessed with the banking crises and various other things to pull the wool over people's eyes that they don't realise the huge control the drug companies have, the money that they pile into hospitals and training etc and I'm pretty certain the sponsorship of various illness trials and research. It got to the point where I was asking, do they want to find a cure for this? (but that's another blog!)
I digress, nearly a year ago I decided to put a CD together with the trio I sing and play with www.Pastal.co.uk and to try and raise awareness of epilepsy but also to raise some money for the animal rescue 'Many Tears' who my Mother and I foster dogs for. As time went on I became more and more lethargic and although I loved doing it I was physically struggling. I couldn't get out of bed in the morning, I was being violently sick, drinking pint after pint after pint of water and just bloating up until I would get freezing cold, my temperature would go up through the roof and I would pour with water from every pore imaginable. No one who hasn't seen it would believe it, my hair would be dripping with water while I was shaking with cold and not knowing what to do with myself. After a 4 day whirlwind tour to promote and launch the Album (Brecon, Leadbury, High Wycomb, London then gig in Broadhaven) , everything hit me at once. That time of year = 'Nuro Virus' so it was easy to treat I just felt really sorry for everyone else who had been around me. Yet it didn't go away, and no one else came down with it.
Four weeks later I was taken for the high light holiday of my year to Padstow for Mayday, anyone who hasn't been should go! I had loved it for the last four years, the sea air, walking distance from town, the carnival spirit, the peace and tranquility of the place was heaven. Or it always had been. This year I could hardly put one foot in front of the other. I was shuffling along doing my best to make it from one seating area to the next, outwardly reassuring everyone I was fine whilest inside panicking and feeling that my legs were slowly but surely packing up on me. To a certain extent that was bearable, the pain that shot down my nose and caused me to feel my head was exploding when I played my clarinet wasn't. It was a nightmare. As the days of lemsip and anti sickness tablets failed to make a difference we came home. Those days turned to weeks and then months and I didn't give up on the selling and marketing and interviews for the CD and though I put my 'going out face' on I got more and more scared, something was happening to me and I had no control over it. My body was seizing up on me.
The one thing that was more noticeable to me than anything was the support that I had, I was overwhelmed by it, I was also rather suprised at certain people who either couldn't cope or didn't want to who having previously appeared to be friends, disappeared into thin air. Then there were those who I hadn't noticed. Those who would look across the room and even in THEIR time of illness would get up and come over and sit and talk to me. It was times like that when I realised that I was a very lucky girl. For every person who once wanted to tell me how ill they were and were now blanking me, I had several people texting, calling, understanding if I couldn't talk to them because I was too weak and just patiently waiting until I felt better or at least sociable again. It's taken me a long time to realise it but I guess when someone goes from being the 'that's only Steph, she can cope with anything. She'll be fine'. To being in a wheelchair or Zimmer frame it could be a wake up call that sometimes, people can't cope. That regardless of the laugh and grin there is only so much trauma physically/ mentally that someone can cope with. Only so many legal drugs being pumped into you by the NHS that the liver can manage to excrete, the rest building up like poison and every morning and evening when taking the tablets KNOWING that you're poisoning yourself yet can't stop taking them as you're told by the doctors what will happen if you do........ ' Reading this I'm realising that there are people put in prison for behaviour like that but it's called drug dealing on the streets and 'pushing'. It's a vicous circle worse than only a few other traps I can think of, who do you go to when you're ill?
After a few weeks of getting weaker and weaker I was finally diagnosed with Adrenal Fatigue (Probably Addisons Disease). It's taken a long round about way of me getting to this point but I needed to fill you in before I could go from here as there was so much prior to this diagnosis which will be discussed but would never have made sense. Addisons disease is unpleasant, debilitating and not very often heard of.
If you can bear with me, this is going to be my diary of balancing taking enough cortisone steroids and adrenalin to get out of bed, fostering dogs for Many Tears Animal Rescue , playing music and getting from day to day until hopefully my dreams come true when I am well enough to get a job working full time with rescue animals, spending time with them and one incredible man in my life who has stuck by me through the most horrific (for him) times when he would have had every reason to turn and walk but he hasn't. He's still here, looking after me, caring for me, taking me places I've never been, taking me back to places that I fell in love with and most of all, being the best friend I could ever have asked for. If it wasn't for him, I wouldn't be here as he came along when everything was dark and I just wanted to bail out. Dragging me back from the brink by using music, love, friendship, targets, focusses and the frequent kick up the preverbial, he really has given me every reason to be here.
Everybody needs (in this order) a rescue dog, an Alan, and Music in their life.
This Blog is not about wanting sympathy; I don't want people to think that I'm brave and I certainly don't want congratulating on anything. The ONLY aim of this blog is to try and get other people to understand the up-hill battle of getting out of bed in the morning, looking out of the window, seeing that the sun is shining (it does happen sometimes you know!) , knowing that you live in a beautiful part of the world and are surrounded by so many people that care yet for some reason (best known to medics, and they're keeping it to themselves!) unable to feel the happiness and joy that you know should be there.
If you are unwell and have a diagnosis it doesn't mean that it's great news because they know what they're dealing with. It doesn't mean that life has changed dramatically for the better since I'm on a new regime of meds etc. It DOES mean that I can relate to people who I couldn't before. It wasn't that I didn't want to, and I did believe them when they told me they felt really ill, I just didn't 'get it'.
I was 15 when I was diagnosed with epilepsy, I was informed that it would take approximately 18months to get the seizures controlled. In that time (13 years) , my step father died, I lost contact with members of my extended family who vowed they would be there 'what ever happened', and I got 'stuck' in the NHS Drug dealing service (there's no other way of putting it) where they would prescribe something to cure one thing which then triggered something else. This in turn needed further medication etc. At one point I was on 9 different prescribed drugs a day 5 of which were to combat the side effects of the other 4. I am certainly aware that there are people out there a lot worse off than myself, but what many don't realise is the number of people who are out there who don't KNOW any of this. Our country is so obsessed with the banking crises and various other things to pull the wool over people's eyes that they don't realise the huge control the drug companies have, the money that they pile into hospitals and training etc and I'm pretty certain the sponsorship of various illness trials and research. It got to the point where I was asking, do they want to find a cure for this? (but that's another blog!)
I digress, nearly a year ago I decided to put a CD together with the trio I sing and play with www.Pastal.co.uk and to try and raise awareness of epilepsy but also to raise some money for the animal rescue 'Many Tears' who my Mother and I foster dogs for. As time went on I became more and more lethargic and although I loved doing it I was physically struggling. I couldn't get out of bed in the morning, I was being violently sick, drinking pint after pint after pint of water and just bloating up until I would get freezing cold, my temperature would go up through the roof and I would pour with water from every pore imaginable. No one who hasn't seen it would believe it, my hair would be dripping with water while I was shaking with cold and not knowing what to do with myself. After a 4 day whirlwind tour to promote and launch the Album (Brecon, Leadbury, High Wycomb, London then gig in Broadhaven) , everything hit me at once. That time of year = 'Nuro Virus' so it was easy to treat I just felt really sorry for everyone else who had been around me. Yet it didn't go away, and no one else came down with it.
Four weeks later I was taken for the high light holiday of my year to Padstow for Mayday, anyone who hasn't been should go! I had loved it for the last four years, the sea air, walking distance from town, the carnival spirit, the peace and tranquility of the place was heaven. Or it always had been. This year I could hardly put one foot in front of the other. I was shuffling along doing my best to make it from one seating area to the next, outwardly reassuring everyone I was fine whilest inside panicking and feeling that my legs were slowly but surely packing up on me. To a certain extent that was bearable, the pain that shot down my nose and caused me to feel my head was exploding when I played my clarinet wasn't. It was a nightmare. As the days of lemsip and anti sickness tablets failed to make a difference we came home. Those days turned to weeks and then months and I didn't give up on the selling and marketing and interviews for the CD and though I put my 'going out face' on I got more and more scared, something was happening to me and I had no control over it. My body was seizing up on me.
The one thing that was more noticeable to me than anything was the support that I had, I was overwhelmed by it, I was also rather suprised at certain people who either couldn't cope or didn't want to who having previously appeared to be friends, disappeared into thin air. Then there were those who I hadn't noticed. Those who would look across the room and even in THEIR time of illness would get up and come over and sit and talk to me. It was times like that when I realised that I was a very lucky girl. For every person who once wanted to tell me how ill they were and were now blanking me, I had several people texting, calling, understanding if I couldn't talk to them because I was too weak and just patiently waiting until I felt better or at least sociable again. It's taken me a long time to realise it but I guess when someone goes from being the 'that's only Steph, she can cope with anything. She'll be fine'. To being in a wheelchair or Zimmer frame it could be a wake up call that sometimes, people can't cope. That regardless of the laugh and grin there is only so much trauma physically/ mentally that someone can cope with. Only so many legal drugs being pumped into you by the NHS that the liver can manage to excrete, the rest building up like poison and every morning and evening when taking the tablets KNOWING that you're poisoning yourself yet can't stop taking them as you're told by the doctors what will happen if you do........ ' Reading this I'm realising that there are people put in prison for behaviour like that but it's called drug dealing on the streets and 'pushing'. It's a vicous circle worse than only a few other traps I can think of, who do you go to when you're ill?
After a few weeks of getting weaker and weaker I was finally diagnosed with Adrenal Fatigue (Probably Addisons Disease). It's taken a long round about way of me getting to this point but I needed to fill you in before I could go from here as there was so much prior to this diagnosis which will be discussed but would never have made sense. Addisons disease is unpleasant, debilitating and not very often heard of.
If you can bear with me, this is going to be my diary of balancing taking enough cortisone steroids and adrenalin to get out of bed, fostering dogs for Many Tears Animal Rescue , playing music and getting from day to day until hopefully my dreams come true when I am well enough to get a job working full time with rescue animals, spending time with them and one incredible man in my life who has stuck by me through the most horrific (for him) times when he would have had every reason to turn and walk but he hasn't. He's still here, looking after me, caring for me, taking me places I've never been, taking me back to places that I fell in love with and most of all, being the best friend I could ever have asked for. If it wasn't for him, I wouldn't be here as he came along when everything was dark and I just wanted to bail out. Dragging me back from the brink by using music, love, friendship, targets, focusses and the frequent kick up the preverbial, he really has given me every reason to be here.
Everybody needs (in this order) a rescue dog, an Alan, and Music in their life.
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