Having a bad day
Frustration.
At times it feels like I'm banging my head against a brick wall. I've had to fight for everything.
Over the past 7 years I've gone through utter hell. Starting when my bladder one day decided to just stop working. My GP was no use whatsoever. He said he'd contacted the district nurse team to come and catheterise me, but they were never notified so didn't show up. A&E drained me and referred me to a urology team at another hospital. They tested my blood and urine and decided it was probably just stress that had caused it, then taught me to self catheterise.
My bladder function returned for a few months, although a little haphazardly. My GP said it was just stress. I was scared though. A random ultrasound for bladder function discovered giant fibroids in my womb... full to over flowing, that had actually pushed my bladder to one side, but the urology department decided that this had nothing to do with what was happening and put it all down to me having spina bifida instead and told me to go home and learn to live with it.
I couldn't cope with the retention so ended up back in hospital, where they treated me like I was something on someone's shoe. They neglected to feed me for 7 days, refused to do any tests and kept insisting it was my spina bifida even though they could see the fibroids were causing problems. The apology letter I received from PALS was 3 pages long with lots of "we understand we did this wrong", but I doubt they did anything about the nursing staff's attitude towards less able bodied patients. Yes, there's more, but I'm not going in to it.
I fought with my GP for a referral to my neurosurgeon. She said that she didn't see a point, until I started talking about various other things that could go wrong with a tethered cord. Eventually I got my referral and an MRI of my spine.
I was sitting with the urologist when the letter came, which he'd already seen. He casually asked me if I thought it was my spina bifida causing the problems, I replied that I didn't think so and he didn't push the matter. Fact of the matter he'd already read that my neurosurgeon had found no change whatsoever between the MRI when I was 10 years old to the one at 31.
I kept asking people if the fibroids could be the problem. Every one of them said no. I pushed and pushed and eventually was referred to one of the top gyne's for a new procedure, a uterine artery embolisation, which I had in January 2009. For a little while after the operation I could still pee a little, knew when I needed to go but my bladder wouldn't empty on it's own properly. Then everything slowly stopped. Back to chronic retention although I still knew if I needed to go.
I had a myomectomy last February 2010, to remove the largest of the fibroids. It had impacted itself in to my sacral space, and was so tightly wedged that the gyne had to yank it out. That operation was the worst of my life. 5 hours spent in 'recovery' screaming because the hospital didn't have oxynorm available on PCA and none of the other drugs that I wasn't allergic to actually did a damn thing for the pain. Eventually my partner at the time threatened legal action after being allowed to see me. He asked why no one had thought to get tablets, to which they told him that they were kept on a ward upstairs, to which he asked why no one had gone to fetch any... 30 minutes later I wasn't screaming anymore. It was the following day after the catheter was taken out I realised with horror that I could no longer feel if I needed to pee... or poop anymore.
I'm now incontinent in the rear, with chronic urinary retention with overflow at the front. I've started to lose feeling between my legs, and my backside could have pins sticking in it and I wouldn't notice. The chronic pain I've had since I was 8 years old has become unbearable.
My gyne is upset that the operation made me worse and suggested I see my neurosurgeon again as he's run out of ideas and thinks it might be a nerve thing after all.
My GP gave me a 10 minute lecture on how with cuts and budgets that the surgery couldn't afford to send everyone for a referral, she told me to learn to live with it. I said that the gyne should have sent her a letter but she claimed not to have received one, and instead said she'd write herself to my neurosurgeon but she really didn't see a point in me going. I pointed out that no one knows why everything suddenly went to shit and that I need to know, I can't just let it be, I need to know if I can be fixed or if I really have to be like this for the rest of my life. She told me that there just wasn't the money now, that I'd have to change to a cheaper version of some of the painkillers I need to take just to not scream. She then asked if I knew how much I was costing the NHS, by this point I felt so depressed I just said, "I am so sorry for being born disabled."
I got the referral, and went to see my neurosurgeon last Wednesday. He's going to do an MRI to see if there's anything at all he can see that's changed, but he seems to think that the branch nerves from my spinal cord to my various affected things have been damaged beyond repair. He said he'd also refer me back to a different urologist that was interested in people like me. That something has changed is obvious from the sheer amount of pain and mess I'm in.
I feel so down. I want my old life back. Yes, it hurts like hell and left me in bed for days on end in agony after trying to do things, but at least I wasn't shitting myself and having to poke silicone tubes into places that really shoud be left alone as well. I used to at least try and get out, leave the house to go places with a friend to take photos of crumbling castles and other interesting places. Now I stay indoors. I daren't go anywhere for fear of soiling myself, for fear that I won't be able to find a wheelchair access loo with running water to wash my hands. Fear that I'll overflow and wet myself, and all the pain that happens when my bladder suddenly realises that it's full to bursting. I try and make myself feel better by calling my catheters 'pokey sticks' in a bid to make them sound more friendly but some days it just doesn't work.
At least I have people that care about me. My partner who loves me dearly and gets a pitance in Carers Allowance for having to put up with me. My friends who help me occasionally leave the house with their cars, and my family who don't really understand that I'm going through hell every day but try and help out the best they can.
I know there are people out there a lot worse than me, but this is my life and I really can't cope with it some days.
At times it feels like I'm banging my head against a brick wall. I've had to fight for everything.
Over the past 7 years I've gone through utter hell. Starting when my bladder one day decided to just stop working. My GP was no use whatsoever. He said he'd contacted the district nurse team to come and catheterise me, but they were never notified so didn't show up. A&E drained me and referred me to a urology team at another hospital. They tested my blood and urine and decided it was probably just stress that had caused it, then taught me to self catheterise.
My bladder function returned for a few months, although a little haphazardly. My GP said it was just stress. I was scared though. A random ultrasound for bladder function discovered giant fibroids in my womb... full to over flowing, that had actually pushed my bladder to one side, but the urology department decided that this had nothing to do with what was happening and put it all down to me having spina bifida instead and told me to go home and learn to live with it.
I couldn't cope with the retention so ended up back in hospital, where they treated me like I was something on someone's shoe. They neglected to feed me for 7 days, refused to do any tests and kept insisting it was my spina bifida even though they could see the fibroids were causing problems. The apology letter I received from PALS was 3 pages long with lots of "we understand we did this wrong", but I doubt they did anything about the nursing staff's attitude towards less able bodied patients. Yes, there's more, but I'm not going in to it.
I fought with my GP for a referral to my neurosurgeon. She said that she didn't see a point, until I started talking about various other things that could go wrong with a tethered cord. Eventually I got my referral and an MRI of my spine.
I was sitting with the urologist when the letter came, which he'd already seen. He casually asked me if I thought it was my spina bifida causing the problems, I replied that I didn't think so and he didn't push the matter. Fact of the matter he'd already read that my neurosurgeon had found no change whatsoever between the MRI when I was 10 years old to the one at 31.
I kept asking people if the fibroids could be the problem. Every one of them said no. I pushed and pushed and eventually was referred to one of the top gyne's for a new procedure, a uterine artery embolisation, which I had in January 2009. For a little while after the operation I could still pee a little, knew when I needed to go but my bladder wouldn't empty on it's own properly. Then everything slowly stopped. Back to chronic retention although I still knew if I needed to go.
I had a myomectomy last February 2010, to remove the largest of the fibroids. It had impacted itself in to my sacral space, and was so tightly wedged that the gyne had to yank it out. That operation was the worst of my life. 5 hours spent in 'recovery' screaming because the hospital didn't have oxynorm available on PCA and none of the other drugs that I wasn't allergic to actually did a damn thing for the pain. Eventually my partner at the time threatened legal action after being allowed to see me. He asked why no one had thought to get tablets, to which they told him that they were kept on a ward upstairs, to which he asked why no one had gone to fetch any... 30 minutes later I wasn't screaming anymore. It was the following day after the catheter was taken out I realised with horror that I could no longer feel if I needed to pee... or poop anymore.
I'm now incontinent in the rear, with chronic urinary retention with overflow at the front. I've started to lose feeling between my legs, and my backside could have pins sticking in it and I wouldn't notice. The chronic pain I've had since I was 8 years old has become unbearable.
My gyne is upset that the operation made me worse and suggested I see my neurosurgeon again as he's run out of ideas and thinks it might be a nerve thing after all.
My GP gave me a 10 minute lecture on how with cuts and budgets that the surgery couldn't afford to send everyone for a referral, she told me to learn to live with it. I said that the gyne should have sent her a letter but she claimed not to have received one, and instead said she'd write herself to my neurosurgeon but she really didn't see a point in me going. I pointed out that no one knows why everything suddenly went to shit and that I need to know, I can't just let it be, I need to know if I can be fixed or if I really have to be like this for the rest of my life. She told me that there just wasn't the money now, that I'd have to change to a cheaper version of some of the painkillers I need to take just to not scream. She then asked if I knew how much I was costing the NHS, by this point I felt so depressed I just said, "I am so sorry for being born disabled."
I got the referral, and went to see my neurosurgeon last Wednesday. He's going to do an MRI to see if there's anything at all he can see that's changed, but he seems to think that the branch nerves from my spinal cord to my various affected things have been damaged beyond repair. He said he'd also refer me back to a different urologist that was interested in people like me. That something has changed is obvious from the sheer amount of pain and mess I'm in.
I feel so down. I want my old life back. Yes, it hurts like hell and left me in bed for days on end in agony after trying to do things, but at least I wasn't shitting myself and having to poke silicone tubes into places that really shoud be left alone as well. I used to at least try and get out, leave the house to go places with a friend to take photos of crumbling castles and other interesting places. Now I stay indoors. I daren't go anywhere for fear of soiling myself, for fear that I won't be able to find a wheelchair access loo with running water to wash my hands. Fear that I'll overflow and wet myself, and all the pain that happens when my bladder suddenly realises that it's full to bursting. I try and make myself feel better by calling my catheters 'pokey sticks' in a bid to make them sound more friendly but some days it just doesn't work.
At least I have people that care about me. My partner who loves me dearly and gets a pitance in Carers Allowance for having to put up with me. My friends who help me occasionally leave the house with their cars, and my family who don't really understand that I'm going through hell every day but try and help out the best they can.
I know there are people out there a lot worse than me, but this is my life and I really can't cope with it some days.