So here it is. 2005 December 11 3:01
Posted by diamond in : Random , 18 commentsI have a condition called Interstitial Cystitis. This means that my bladder wall is inflamed and hyper-sensitive. I’ve had it for 4 years, though didn’t realise there was a problem till 2 years ago, and was diagnosed about a year ago. Some of ye know this, most probably are just aware of something much vaguer. I’ve always been rather reluctant to give details, but at this stage i just don’t care any more, so i thought i’d just get it over with and write it here.
This has affected my life in a number of ways. At it’s most basic, it means i have to go to the bathroom much more frequently than normal. An average person will go about 5-6 times in a day, i’ll usually be double that, sometimes up to 5 times that amount. During the day, this is annoying, but dealable with, with some planning. At night, however, it’s frequently a nightmare.
The current sleeping situation is this: i go to the bathroom, and then to bed. If i’m not asleep within 15 minutes, i have to give up and start again. On a good night, i might get to sleep after about half an hour. Usually, it’s closer to an hour. On a (frequent) bad night, it can be 3, 4 hours, sometimes even as much as 6. On those nights, it basically continues until i’m so exhausted i just pass out. If i’m stressed, it’s much worse. If i’m tired, it’s much worse. Can you say ‘vicious circle’?
So, you might be asking yourself what can modern medicine do to cure me? The answer is: nothing. The cause of IC: unknown. Cure for IC: unknown. You might see a pattern here. In fact, until the last decade or so, it was one of those lucky ailments that was discredited by doctors with “it’s all in your head”. Thankfully i had the good sense to wait until that changed. Treatment is limited to combating the symptoms, with varying success with different people.
I was in hospital for 5 days just over 4 years ago. It started out as a kidney infection, then a prostate infection, and then the whole thing went south very rapidly. At the time, they had me on insane amounts of painkillers and antibiotics (i have 2 points of datum for that: a) when i arrived in casualty they gave me 2 injections of morphine-strength analgesics, my head was floating away, and i was still in complete agony. b) after discharge, i went home to mullingar for a month to recover, and my gp told me that i had been prescribed more painkillers than she had ever seen).
The large amounts of medication at the time had a severe effect on me. My brain was completely fried from the zydol (*shakes angry fist at said horrible stuff*). I could stay awake for about 15mins at a time, could barely form sentences, memory was one big cotton ball of fluff. The antibiotics had many lovely effects too, including nausea (yay for dict and spelling ,-). I also noticed at the time that i had to go to the bathroom frequently, but put it down to being one of the many side effects i was having at the time. After a while, some of the side effects faded away, and i forgot about them as they merged into daily life. As such, it was another 2 years before i realised that this whole non-sleeping thing was becoming a real problem (see, there was a point to all this. honest.).
So, went to my gp, got referred to the urologist who had seen me in hospital. He had a chat, gave me a chart to fill out, told me to come back in 6 months. Came back, we had a chat, he gave me a chart, and came back in another 6 months. At this stage he had enough data to be able to a) diagnose me with IC, and b) tell me it was getting worse (which i had figured out at this stage). Yay for progress. By this stage, i was getting desperate. The month before i saw him, i had gotten 2 good nights sleep in a 3 week period. I’d tried herbal sleeping tablets, i’d even gotten my gp to prescribe regular sleeping tablets, but neither were effective.
Then he gave me the good news. He told me that he could put me on medication to help me sleep, and reduce the frequency at night (yay. i get to sleep, don’t spend all my days sleep deprived and zombie-like), but that the side-effects might be drowsiness during the day (yay… or not). So, we decided it was worth trying, so i started on 25mg of amitriptyline (link updated 20091025 to a better page) 1 hour before bed. Amitriptyline (apparently) is a tri-cyclic antidepressant. As i understand it, i’m on it for it’s sedative and nerve-blocking side-effects. Speaking of, have a look at the listed side-effects on that link. It’s enough to really really scare you.
At first, it knocked me straight out at night, with minimal drowsiness the next day (after the first hellish day when i thought that life on this was going to be completely disabling). After a couple of weeks, my body adjusted, and it’s effectiveness lessened, so i upped the dose to 50mg as advised. At this stage i also took a month off work as i needed time to adjust, and i was getting majorly stressed about being unproductive at work. For a while, things were good. I’d say the next 3-4 months i was sleeping pretty regularly. Not perfect, but at least frequently enough that i could cope.
It didn’t last. At the start i’d be waking maybe 1-2 times during the night to go to the bathroom, down from 5-6 (normally – many many more on bad nights) before going on medication. By the time i saw the consultant again in november, it was back up to 4-5 times a night. Not good. You might think that waking 5-6 times during the night isn’t that big a deal, and on it’s own, it probably wouldn’t be too bad. Unfortunately, before i actually wake up, i probably spend an hour or two in very light sleep or half sleep. I’d get 10 hours in bed, but wake up feeling like i’d only slept for maybe 4-5. And that piles up very quickly if you don’t get a chance to recooperate.
So. The consultant decided we’d try upping the dose to 75mg, an hour before bed. That’s where the last month disappeared. I’ll list the side-effects i’ve noticed: blurry vision, dry mouth, heart palpitations, drowsiness, insomnia, dizziness, confusion, mania. Happy stuff. I consulted with my gp, she said to give it a month to see how my body adjusts to it. That month ends on the 15th, another 5 days to go. As it stands, i really don’t see it happening. As such, i’ll almost certainly be going back to 50mg, which isn’t enough.
The condition is getting worse. And rapidly. I was off the medication for 3 days between prescriptions and it was hell. At this stage i’m completely dependant on it. And it’s not enough. And i’m not coping very well with all this. When i was at the consultant, he asked how i’d been. I told him about the nervous breakdown, he asked had i seen anyone about that. I replied no, and had the stunningly obvious idea that it might be a good idea if i did. I asked his opinion, he highly recommended it.
I had my first session with a psychotherapist last week. I gave her all the background, and explained why i was there. I need help dealing with having this condition, and i need help dealing with the stress i put myself under because i’m not productive enough in work. She has suggested that we do 8 sessions, one per week, and then review. I’m a bit nervous about this, but i have some hope it’ll help.
In general, when i look into the future, i see this getting worse, and no way out. If i say this causes me to be depressed sometimes, i don’t think any of ye are going to be surprised. When things get really bad sleep-wise, and i spend every day extremely sleep-deprived, unable to concentrate enough to work, or even do the things i enjoy in my spare time, i begin to question the point of life.
My gp, and the therapist, asked me had i ever considered suicide, to which i replied yes. I haven’t been hung up on the idea, and haven’t considered it seriously, but there have been at least 2 points when it’s seemed like it would just be better to end it all (yes, i know now, at this moment, that that’s stupid. but the whole issue is that when i’m in these situations i can’t think clearly). In response, my therapist made me write the following on a piece of paper and sign it for her:
“I promise that if i feel suicidal i will talk to/ring one of the following people: Diane, Maeve, Dan, Niall, my Dad.”
The above is not a definitive list btw, as far as i’m concerned.
You may wonder why i’m writing any/all of this. To be honest, i probably couldn’t tell you for sure. As i said earlier to niall, i’m sick of just alluding to crap. I just want to say it, say it all, and be done with it. Mostly, i just need to write this for me, for my sanity. This is it. This is what most/all of my life revolves around. This is me. Do with it as you will.
Steve