I had a lovely weekend.
Dave bought the boys up and they got here after lunch on Saturday.
What joy, to see the boy's delighted faces when they first saw me, to cuddle their little bodies and breathe in their baby smell.
Saturday evening, we went for dinner together. We found a cosy, dimly lit pub with a nook lined with sofas. Christmas trees were shining silver, gold and red and fairy lights painted rainbows on our skin.
We ate together and it felt like home. I savoured a glass of wine as though It were Cristal and we ordered the boys enormous cookie and ice cream desserts, gooey with cream and sprinkled sweeties.
Today, we took them to the cinema and while they watched the screen, I watched their engrossed faces and tried to store away enough of their giggles and kisses to see me through the week ahead.
It never fails to amaze me how wonderful tiny pleasures seem when you've been in hospital for more than a week or two. Colours seem brightly vivid after the drab, institutional wards. Wine tastes of freedom after weeks of denial and shines like gold in the glass. A kiss feels more precious, a laugh more of a privilege and the cinnamon, citrus and pine scent of Christmas chases away the last stench of antiseptic and sickness.
The days I've left hospital have been some of the best of my life. Nothing on earth feels as good as getting the chance to experience and appreciate afresh the simple wonders and comforts and pleasures of your life. They are moments of pure happiness and satisfaction.
Sunday, 28 November 2010
Saturday, 27 November 2010
You mean people do this for pleasure??
I absolutely DETEST taking pethidine.
It makes me feel what Dave and I have come to describe as "jangly."
I can't bear anyone touching me or even talking to me.
Every small tap or slurp is magnified a thousand times, so I jump out of my skin at nothing and feel like I want to strangle anyone who dares even to breathe in my presence.
It makes my muscles twitch, so that, out of the blue a cup of tea I'm holding might shoot across the room. I don't even carry my baby down the stairs as I'm frightened I'll drop him.
It makes me sweat. I wake up in the night literally drenched, lying in a wet bed that I have to either change or give up on, choosing instead to plod downstairs to the sofa.
It makes me itch. I watch this twitchy, itchy wreck, constantly scratching at herself like an addict and slurring through mangled sentences. I simply stay in my bedroom now, so that I don't have to share that pathetic version of me with those that love me the most. Sometimes it means I spend days on end upstairs vomiting and hiding away.
It keeps me awake, so it's fairly common to see me padding about at 3am. Often I don't actually manage to get to sleep until dawn.
It mashes my brain and makes me forget what I'm writing or whatever I was in the middle of saying. I hate that, it embarrasses me.
I have to take it by injection, giving me sore legs, ugly bruises and the constant risk of abscesses.
When I've taken it, an hour or so later I almost always desperately plead at my husband "What about this did I think was better than being in pain?"
But tomorrow or the next day, the pain will rage and all over again it will seem inconceivable that I just tolerate it. It is not a tolerable pain.
It makes me feel what Dave and I have come to describe as "jangly."
I can't bear anyone touching me or even talking to me.
Every small tap or slurp is magnified a thousand times, so I jump out of my skin at nothing and feel like I want to strangle anyone who dares even to breathe in my presence.
It makes my muscles twitch, so that, out of the blue a cup of tea I'm holding might shoot across the room. I don't even carry my baby down the stairs as I'm frightened I'll drop him.
It makes me sweat. I wake up in the night literally drenched, lying in a wet bed that I have to either change or give up on, choosing instead to plod downstairs to the sofa.
It makes me itch. I watch this twitchy, itchy wreck, constantly scratching at herself like an addict and slurring through mangled sentences. I simply stay in my bedroom now, so that I don't have to share that pathetic version of me with those that love me the most. Sometimes it means I spend days on end upstairs vomiting and hiding away.
It keeps me awake, so it's fairly common to see me padding about at 3am. Often I don't actually manage to get to sleep until dawn.
It mashes my brain and makes me forget what I'm writing or whatever I was in the middle of saying. I hate that, it embarrasses me.
I have to take it by injection, giving me sore legs, ugly bruises and the constant risk of abscesses.
When I've taken it, an hour or so later I almost always desperately plead at my husband "What about this did I think was better than being in pain?"
But tomorrow or the next day, the pain will rage and all over again it will seem inconceivable that I just tolerate it. It is not a tolerable pain.
Friday, 26 November 2010
Freddie Flintoff???
Well fancy that!
I'm sure I just passed Freddie Flintoff in the empty foyer as I came back in from my last illicit ciggie.
He nodded and said hello too, in a way only famous people do when they see someone giving them the "Don't I know you?" look.
Your mission, should you choose to accept, is to find out if it really was him or not. It must be possible to find out where he is treated for his knees? Whether he's in the UK or abroad?
How cool if it was him? I love Freddie.
Night.
I'm sure I just passed Freddie Flintoff in the empty foyer as I came back in from my last illicit ciggie.
He nodded and said hello too, in a way only famous people do when they see someone giving them the "Don't I know you?" look.
Your mission, should you choose to accept, is to find out if it really was him or not. It must be possible to find out where he is treated for his knees? Whether he's in the UK or abroad?
How cool if it was him? I love Freddie.
Night.
Friday's Toast
My gastro team are in the news!
Look, there's Dr Parkes, one of my consultants :
http://www.cuh.org.uk/addenbrookes/news/2010/november/crohns_genetic_breakthrough.html
The team here have been at the very forefront of global genetic research into inflammatory bowel disease. They are looking at medicine in an entirely new way and were one of the first teams to foresee how vital genetic medicine would become.
Tonight, if you will, raise a glass to Miles Parkes, Stephen Middleton, John Hunter, Francesca Bredin and Alison Nightingale. (Yes, really and no, her name isn't Florence)
Look, there's Dr Parkes, one of my consultants :
http://www.cuh.org.uk/addenbrookes/news/2010/november/crohns_genetic_breakthrough.html
The team here have been at the very forefront of global genetic research into inflammatory bowel disease. They are looking at medicine in an entirely new way and were one of the first teams to foresee how vital genetic medicine would become.
Tonight, if you will, raise a glass to Miles Parkes, Stephen Middleton, John Hunter, Francesca Bredin and Alison Nightingale. (Yes, really and no, her name isn't Florence)
Trumpet Blowing
You've probably all seen the Guardian CiF article by now, but in case some of you missed the brouhaha (how good is that word? Possibly my favourite.) it's quite a good story.
A few days ago, I logged onto Twitter to find a page full of tweets and retweets from Comment is Free - they had posted the link to my blog with the tantalising question "Does anyone know this blogger? Do you have contact details?" I replied that it was me and they asked me to write a piece on pain management in long term illness.
Of all the subjects they could have picked, this is the one closest to my heart.
It is published today on the Guardian website http://www.guardian.co.uk/commentisfree/2010/nov/26/pain-long-term-drug-addiction?showallcomments=true#end-of-comments
Without the support you've all shown, it wouldn't be there, so thank you.
A few days ago, I logged onto Twitter to find a page full of tweets and retweets from Comment is Free - they had posted the link to my blog with the tantalising question "Does anyone know this blogger? Do you have contact details?" I replied that it was me and they asked me to write a piece on pain management in long term illness.
Of all the subjects they could have picked, this is the one closest to my heart.
It is published today on the Guardian website http://www.guardian.co.uk/commentisfree/2010/nov/26/pain-long-term-drug-addiction?showallcomments=true#end-of-comments
Without the support you've all shown, it wouldn't be there, so thank you.
1997
Susan! Susan! Wake up, it's ll over."
[So tired. Not yet.]
"Susan!, Susan!
[Who is that?]
"Susan"
[Slow motion, pushing through treacle-thick confusion, but the voice is still too far away]
"Susan"
"AGGGHHHHHHHHHHHH"
A cold hand takes mine and the last wisps of that other place shoot suddenly away. I find the scream is coming from me.
"Susan, Can you score your pain out of 10?"
ELEVEN!
Involuntarily, my mouth forms a new scream, but it chokes off in my throat. There is a burning, searing, terrible, pain ripping through me. I realise that every act of wakefulness sends a wave of white-hot agony in sickening spasms through my body. I try not to even blink.
Dave is here now, and I drag my eyes to meet his, hoping that the look alone could speak for me. What had happened? Why does it hurt? Where am I? Please, please, please make it stop.
We are rushing through corridors, every rattle and knock of the bed bringing fresh horror, Dave grasping my hand and almost running alongside to keep up.
The bed stops and a nurse is there. She's holding an ice cube and whips my covers back quickly. She presses it to my stomach and the severed nerves shoot and shock in protest. "Tell me when you can feel the ice cube Susan."
Quietly, I hear myself gulp "Now." She presses the other side "Now" and each thigh, "Now. Now." and on down my legs to my feet.
She looks at me strangely. "Try to calm down now Susan, getting yourself worked up won't help."
I stare back at her in wonder, not quite sure what she's meant.
My Mum is there now, too. She looks shocked and terrified, tears brimming in her eyes. Dave is grey and shaking.
The nurse has gone and I force myself to think through the nightmare.
I've had surgery. They'd taken me down some time after 2pm and it was 9ish now. I've had surgery before and it didn't feel like this. I'd been given morphine for my first op, but it hadn't agreed with me - causing me to lose consciousness. What's more, it hadn't even worked for the pain. This time, they'd persuaded me to have a fentanyl epidural, assuring me that it wouldn't have the same effect. I should be numb from the waist down, but clearly that wasn't the case.
Cautiously I try to lift my hand to see if anything is numb at all. Tensing the muscles in my arm tenses the muscles in my abdomen and I convulse, gagging against the pain and sending all the other nerves into a symphony of protest. I take a deep breath and force myself to feel my abdomen, down, to my legs as far as I can reach.
Nothing.
I manage to whisper to Dave that it isn't working and he run's back to find the nurse.
He's back, apoplectic with helpless rage.
"She won't come!!" She says you need to calm down, that you're giving yourself more pain because you keep shouting and gagging."
We are dumbstruck. No-one says anything for a moment. My Mum is crying, Dave seems unsure whether to stay with me or run back to the nurse. My head starts to hurt and I start shivering, every shiver rippling my muscles and giving me fresh convulsions of pain.
For the next hour or two, we exist. A bizarre routine of telling the nurse I am in pain every time she comes to take my 15 minute obs and her replying that I just need to calm down. She says she's called a doctor, but he could take hours to come and I ought to try to get some rest if I wanted to get better.
At about 11pm, she comes into my curtained cubicle and tells my Mum and my Dave that they have to leave. They are disturbing the other patients. In chorus, they both answer in furious whispers that there is no way in the world they are leaving until I'd seen a doctor and my pain had been treated.
To our astonishment she threatens to call security and in the end they have no choice but to go.
Now I'm on my own. It's dark and I'm frightened. The only sounds are the beep-beep-beep of machines and my intermittent screams.
I press my call buzzer but nobody comes. When I can spare any energy to notice, I realise my head is now splitting and I remember where I've had this kind of feeling before. I'd got a headache like this the last time I had morphine, and when it had reached the level of unbearable, I'd lost consciousness.
Finally the nurse appears to do my obs, which must have changed to hourly. I dredge up every last drop of courage and control and speak to her, quietly but urgently.
I tell her that morphine doesn't help with pain for me. I tell her that the epidural isn't working anyway for some reason, but that if she didn't get a doctor very soon, I was going to lose consciousness and need a crash trolley. I beg her to take me seriously, but she doesn't even answer and walks away.
Silently, I sit alone, crying, but so terrible is the pain that I don't even sob. Tears just brim and then fall down my cheeks, slowly dripping onto the sheet. I try to stay perfectly still. I wonder if I will die, here, tonight, alone and in agony. My buzzer is lit, but the nurse never comes.
It's 1am. I've been living hell for 4 hours and I can feel I am drifting away. My eyes keep falling shut until I find myself starting awake, waves of searing, burning pain resenting the jolt.
At some point I realise the nurse is back, but she seems a long, long way away. I know I should beg her again, try to make her understand, but I can't remember why it was so important. Suddenly she yanks my head up off the pillow and seems to be tying something round my head. This unexpected twist is enough to stir me a little and I realise she is blindfolding me with an ordinary, winter scarf.
"I'm going to try the ice-cube again Susan, tell me when you can feel it." She plays a morse code of No. No. Yes. Yes. Yes. No. On my skin. Sometimes I feel it, sometimes I don't. Perhaps she is playing tricks with me - a kind of blind-man's-buff for power freaks.
She's taking off the improvised blindfold and as I blink to clear my eyes, I see her face has changed. She looks pale and panicky. She asks me to score my pain out of 10 and somehow, through numb, cracked lips, I manage to whisper "11".
*******************************************
"["Susan! Susan! Wake up, it's all over."
[So tired. Not yet.]
"Susan!, Susan!
[Who is that?]
"Susan"
[Slow motion, pushing through treacle-thick confusion, but the voice is still too far away]
"Susan"
"AGGGHHHHHHHHHHHH"
A cold hand takes mine and the last wisps of that other place shoot suddenly away. I find the scream is coming from me.
"Susan, Can you score your pain out of 10?"
ELEVEN!
Involuntarily, my mouth forms a new scream, but it chokes off in my throat. There is a burning, searing, terrible, pain ripping through me. I realise that every act of wakefulness sends a wave of white-hot agony in sickening spasms through my body. I try not to even blink.
Dave is here now, and I drag my eyes to meet his, hoping that the look alone could speak for me. What had happened? Why does it hurt? Where am I? Please, please, please make it stop.
We are rushing through corridors, every rattle and knock of the bed bringing fresh horror, Dave grasping my hand and almost running alongside to keep up.
The bed stops and a nurse is there. She's holding an ice cube and whips my covers back quickly. She presses it to my stomach and the severed nerves shoot and shock in protest. "Tell me when you can feel the ice cube Susan."
Quietly, I hear myself gulp "Now." She presses the other side "Now" and each thigh, "Now. Now." and on down my legs to my feet.
She looks at me strangely. "Try to calm down now Susan, getting yourself worked up won't help."
I stare back at her in wonder, not quite sure what she's meant.
My Mum is there now, too. She looks shocked and terrified, tears brimming in her eyes. Dave is grey and shaking.
The nurse has gone and I force myself to think through the nightmare.
I've had surgery. They'd taken me down some time after 2pm and it was 9ish now. I've had surgery before and it didn't feel like this. I'd been given morphine for my first op, but it hadn't agreed with me - causing me to lose consciousness. What's more, it hadn't even worked for the pain. This time, they'd persuaded me to have a fentanyl epidural, assuring me that it wouldn't have the same effect. I should be numb from the waist down, but clearly that wasn't the case.
Cautiously I try to lift my hand to see if anything is numb at all. Tensing the muscles in my arm tenses the muscles in my abdomen and I convulse, gagging against the pain and sending all the other nerves into a symphony of protest. I take a deep breath and force myself to feel my abdomen, down, to my legs as far as I can reach.
Nothing.
I manage to whisper to Dave that it isn't working and he run's back to find the nurse.
He's back, apoplectic with helpless rage.
"She won't come!!" She says you need to calm down, that you're giving yourself more pain because you keep shouting and gagging."
We are dumbstruck. No-one says anything for a moment. My Mum is crying, Dave seems unsure whether to stay with me or run back to the nurse. My head starts to hurt and I start shivering, every shiver rippling my muscles and giving me fresh convulsions of pain.
For the next hour or two, we exist. A bizarre routine of telling the nurse I am in pain every time she comes to take my 15 minute obs and her replying that I just need to calm down. She says she's called a doctor, but he could take hours to come and I ought to try to get some rest if I wanted to get better.
At about 11pm, she comes into my curtained cubicle and tells my Mum and my Dave that they have to leave. They are disturbing the other patients. In chorus, they both answer in furious whispers that there is no way in the world they are leaving until I'd seen a doctor and my pain had been treated.
To our astonishment she threatens to call security and in the end they have no choice but to go.
Now I'm on my own. It's dark and I'm frightened. The only sounds are the beep-beep-beep of machines and my intermittent screams.
I press my call buzzer but nobody comes. When I can spare any energy to notice, I realise my head is now splitting and I remember where I've had this kind of feeling before. I'd got a headache like this the last time I had morphine, and when it had reached the level of unbearable, I'd lost consciousness.
Finally the nurse appears to do my obs, which must have changed to hourly. I dredge up every last drop of courage and control and speak to her, quietly but urgently.
I tell her that morphine doesn't help with pain for me. I tell her that the epidural isn't working anyway for some reason, but that if she didn't get a doctor very soon, I was going to lose consciousness and need a crash trolley. I beg her to take me seriously, but she doesn't even answer and walks away.
Silently, I sit alone, crying, but so terrible is the pain that I don't even sob. Tears just brim and then fall down my cheeks, slowly dripping onto the sheet. I try to stay perfectly still. I wonder if I will die, here, tonight, alone and in agony. My buzzer is lit, but the nurse never comes.
It's 1am. I've been living hell for 4 hours and I can feel I am drifting away. My eyes keep falling shut until I find myself starting awake, waves of searing, burning pain resenting the jolt.
At some point I realise the nurse is back, but she seems a long, long way away. I know I should beg her again, try to make her understand, but I can't remember why it was so important. Suddenly she yanks my head up off the pillow and seems to be tying something round my head. This unexpected twist is enough to stir me a little and I realise she is blindfolding me with an ordinary, winter scarf.
"I'm going to try the ice-cube again Susan, tell me when you can feel it." She plays a morse code of No. No. Yes. Yes. Yes. No. On my skin. Sometimes I feel it, sometimes I don't. Perhaps she is playing tricks with me - a kind of blind-man's-buff for power freaks.
She's taking off the improvised blindfold and as I blink to clear my eyes, I see her face has changed. She looks pale and panicky. She asks me to score my pain out of 10 and somehow, through numb, cracked lips, I manage to whisper "11".
*******************************************
"["Susan! Susan! Wake up, it's all over."
[So tired. Not yet]
"Susan!, Susan!
[Who is that?]
"Susan"
[Slow motion, pushing through treacle-thick confusion, but the voice is still too far away]
"Susan"
I try to see where the voice is coming from and carefully moving my head to the right, my eyes focus on a friendly house-officer I'd bonded with previously over a shared love of travel. I was so grateful to see a friendly face, I sobbed and smiled all at once.
"You gave us quite a fright there Susan, what happened?
I haven't got a clue what happened and I'm not sure why I'm waking up again. I tell him about the morphine and the epidural and the blindfold and the knowledge I was going to lose consciousness but not being able to convince the nurse. He doesn't know what to say.
In the end he composes his face and settles for a cheery:
"You popped off for a bit there Sue, glad to see you back."
I supposed that I would be glad in the long run, but given the pain, at that particular moment I'd have preferred to stay wherever it was I'd "popped off" to. I tell him the fentanyl in the epidural is not only not giving me any relief from the pain, but that it is what caused me to crash. I tell him he needs to stop it from steadily dripping into my system and find me a pethidine pump in stead.
Stepping back for a moment into the horror film farce, he tells me that only a consultant can authorise the change and I will have to wait until morning.
I Grab his arm and make him look me in the eyes.
"Listen, either you pull this fentanyl drip out of my back or I will.
If we don't, I will die.
If you leave me in this kind of pain, I may die anyway."
He looks unsure, then strides away - long determined steps thudding reassuringly down the ward. I say a prayer that he will save me.
In moments he is back. He has a syringe in a little cardboard tray. Alongside, there is another syringe - the biggest I have ever seen. A nurse follows him. (though not Bitch Blindfold this time.) She is dragging a pump attached to a drip stand.
Doc-Buddy unscrews the little cap on my venflon and pushes the liquid in the first, smaller syringe slowly into my vein. Immediately, I feel a warmth and a comfort and a ray of hope, spreading through my blood, easing and soothing like magic.
He takes the enormous syringe and installs it in the pump. In a series of beeps it starts to whirr and he gently closes my fingers over a remote control with a glowing orange button.
"Press it when it hurts - you can't have too much, it's timed out to 5 minutes. Try to build it up for an hour or so, but I've given you a massive bolus, so you should feel better soon."
Tears spill over my cheeks again, grateful tears, tears of sheer relief. I'm drifting now, but thankfully this time, wearily and wrapped in a warm opiate cloud.
I manage to smile at him and whisper,
"Thank You."
Thursday, 25 November 2010
Is it just me?
Oh God, the times I've asked my husband or my Mum that question.
Sitting on a hospital bed, eyes pleading, brow creased in baffled confusion.
I told you about nurse nasty the other night. She of "'Ave you got a problem??"
You might remember that the first thing my brain asked as it dragged itself back to consciousness was "Am I imagining this? Is she really picking a fight with me or is it just me?"
I've made a little friend - let's call her Diabetic Daisy. We're both young, both fed up, both relatively mobile and two days ago, a bed became free in her bay. We asked our respective nurses if I could move into it, so that we could be together, but they said no. They explained that another patient was coming in and they needed it for her as she was "really poorly. Hmmm, so poorly, apparently, that she's already gone home, while Diabetic Daisy has been here for a week and I've been here for 2 weeks.
Still, no harm, the bed is free now, so we asked again. We thought it through this time. We didn't ask the day shift - they seemed stressed - we thought we'd wait til it was nice and quiet and they were at our respective beds doing something anyway.
I asked very pleasantly if I could move, but the nurse shook her head (without looking up from the drug trolley) and started to say how a really poorly patient needed the bed.....
I was disappointed and started to say how nice it is if you can find a friend in hospital, and she started to tell me off! She tutted and said I "had to understand" that a patient needing care is much more important than whether I could be near my friend or not.
Again, as so often before, that burning sense of injustice rose to my mouth and wouldn't let me stay quiet. Quietly, but firmly I told her that being in hospital for a long time is hard and that "hard" isn't just a word. Being in hospital is enormously difficult, utterly lonely, endlessly frightening and boring beyond words - having a friend to say goodnight to or someone to talk to when you wake up at 3am frightened and alone is surely worth quite a lot too?
She was sucking her teeth by now, her face set to total disdain and still not looking at me.
I left it for a minute as she counted out my night time drugs and my frustration eased a little. She still looked cross and I tried again, quietly, with as much conciliation in my voice as I could manage. I suggested they might at least consider moving diabetic Daisy into my bay, if the other was needed for really sick patients. I asked her not to be cross, I was only asking a reasonable question, not being rude or selfish.
She said if we really wanted to see each other we could go for a walk! Then she told me for the 3rd time that I "had to understand" there were patients much sicker than me who needed the bed. I gave up, told her I understood that part very well, and went back to my book.
I've got two things to say about it. Firstly, I can't tell you how insulting I find it to be told that I'm not really sick, or that other patients are "much sicker than me." Are they? They might be acutely sick, but Crohn's has ravaged my life and I'll still be here next week and the week after, when the serious cases have long gone home to get ready for Christmas. It's also insulting to even imply that I would rather put my selfish requests before acutely ill patients.
Secondly, I can't really say the care has been very impressive. I've told you some of the more juicy moments, and it will soon have a post all of its own, but there's no escaping the fact that every day is a catalogue of cock-ups. They don't get my supplement drinks when I need them, liquid feeds go up late, they forgot my iron transfusion and my new anti-sickness medication, they haven't put my venflon back in and they've sent me for the wrong investigation. My injections are always late or they've run out, patients wait hours for a commode, blah blah blah blah blah until you want to scream and never stop.
If they won't or can't care for me with any efficiency, and we've already talked about an all too frequent lack of compassion, then surely they could at least let me have a friend? Surely any human being could see the value of a friend at a traumatic time?
It's not even the bed I'm cross about, it's being spoken to (again) like a naughty little girl!! So astounding do I find it, that once again, I find myself asking : Is it me? Did I over-react? Am I over-sensitive? A selfish-malingering-attention-seeking-junkie-bitch? I really don't think that I am, but in the end you begin to wonder. They can't all be wrong - can they?
Sitting on a hospital bed, eyes pleading, brow creased in baffled confusion.
I told you about nurse nasty the other night. She of "'Ave you got a problem??"
You might remember that the first thing my brain asked as it dragged itself back to consciousness was "Am I imagining this? Is she really picking a fight with me or is it just me?"
I've made a little friend - let's call her Diabetic Daisy. We're both young, both fed up, both relatively mobile and two days ago, a bed became free in her bay. We asked our respective nurses if I could move into it, so that we could be together, but they said no. They explained that another patient was coming in and they needed it for her as she was "really poorly. Hmmm, so poorly, apparently, that she's already gone home, while Diabetic Daisy has been here for a week and I've been here for 2 weeks.
Still, no harm, the bed is free now, so we asked again. We thought it through this time. We didn't ask the day shift - they seemed stressed - we thought we'd wait til it was nice and quiet and they were at our respective beds doing something anyway.
I asked very pleasantly if I could move, but the nurse shook her head (without looking up from the drug trolley) and started to say how a really poorly patient needed the bed.....
I was disappointed and started to say how nice it is if you can find a friend in hospital, and she started to tell me off! She tutted and said I "had to understand" that a patient needing care is much more important than whether I could be near my friend or not.
Again, as so often before, that burning sense of injustice rose to my mouth and wouldn't let me stay quiet. Quietly, but firmly I told her that being in hospital for a long time is hard and that "hard" isn't just a word. Being in hospital is enormously difficult, utterly lonely, endlessly frightening and boring beyond words - having a friend to say goodnight to or someone to talk to when you wake up at 3am frightened and alone is surely worth quite a lot too?
She was sucking her teeth by now, her face set to total disdain and still not looking at me.
I left it for a minute as she counted out my night time drugs and my frustration eased a little. She still looked cross and I tried again, quietly, with as much conciliation in my voice as I could manage. I suggested they might at least consider moving diabetic Daisy into my bay, if the other was needed for really sick patients. I asked her not to be cross, I was only asking a reasonable question, not being rude or selfish.
She said if we really wanted to see each other we could go for a walk! Then she told me for the 3rd time that I "had to understand" there were patients much sicker than me who needed the bed. I gave up, told her I understood that part very well, and went back to my book.
I've got two things to say about it. Firstly, I can't tell you how insulting I find it to be told that I'm not really sick, or that other patients are "much sicker than me." Are they? They might be acutely sick, but Crohn's has ravaged my life and I'll still be here next week and the week after, when the serious cases have long gone home to get ready for Christmas. It's also insulting to even imply that I would rather put my selfish requests before acutely ill patients.
Secondly, I can't really say the care has been very impressive. I've told you some of the more juicy moments, and it will soon have a post all of its own, but there's no escaping the fact that every day is a catalogue of cock-ups. They don't get my supplement drinks when I need them, liquid feeds go up late, they forgot my iron transfusion and my new anti-sickness medication, they haven't put my venflon back in and they've sent me for the wrong investigation. My injections are always late or they've run out, patients wait hours for a commode, blah blah blah blah blah until you want to scream and never stop.
If they won't or can't care for me with any efficiency, and we've already talked about an all too frequent lack of compassion, then surely they could at least let me have a friend? Surely any human being could see the value of a friend at a traumatic time?
It's not even the bed I'm cross about, it's being spoken to (again) like a naughty little girl!! So astounding do I find it, that once again, I find myself asking : Is it me? Did I over-react? Am I over-sensitive? A selfish-malingering-attention-seeking-junkie-bitch? I really don't think that I am, but in the end you begin to wonder. They can't all be wrong - can they?
Subscribe to:
Posts (Atom)