On July 26th 2015 my wife used a word I never really thought would be applied to me “disabled”. A bit of a shock. Only two weeks ago I was swimming twice a week, surfing twice a week, doing weights and strength and conditioning regularly and regularly attending yoga class.
I had however also been burying my head in the sand for quite a while as well. Probably about 20 years if I am to be honest. What started as an increasing need to urinate in my late teens carried on throughout my busy twenties and thirties till at the age of Forty I was no longer able to pee standing up. I made an appointment. The months passed with my bladder proving itself to be virtually more and more useless till eventually I was only able to pee by sitting down on and squeezing my abdomen.
Eventually I was asked to attend an ultrasound appointment where I had my bladder and kidneys scanned. My bladder had, for sometime, been creating its own reserve tank. Something called a diverticulum that held about half a pint of piddle even when I thought I was empty. The diverticulum had expanded due to a blockage around my urethra. Urine that could not escape had been backing up into my kidneys causing hydronephrosis. Pretty serious you would think. Once again months passed, bladder complaints continued, the full diverticulum upset my bowels and occasional early morning vomiting added itself to the repetoire.
When the letter requesting i attend the day surgery unit at the local hospital arrived I was relieved and nervous. Ushered into a tiny cubical I changed into white smock and paper pants. I had previously seen a private consultant over an hours drive away who on July 7th 2015 had suggested I have ISC (Intermittent Self Catheterisation) he was willing to organise it but felt it might be easier to make arrangements locally. So that was what I was going to ask for. The specialist I saw clearly explained my situation and managed to convince me that an indwelling catheter would be better in the short term and perhaps ISC might be something considered in 6-8 weeks time. After an internal inspection with a magic eye (front and rear) I was fitted with an indwelling catheter. In a shocked state I sat like a good little boy whilst someone explained how to care for my catheter, how sexual intercourse was entirely possible, where I could get more bags from and where I had to sign.
Somewhere amongst pieces of paper I have a record of that date but prefer not to look incase it upsets me to think that on the 1st of October I still have this indwelling catheter in place.
The think I was in shock for the first few days, not quite sure what I could or could not do. The crunch came on Sunday, July 26th. I had previously arranged to hold a paipo demonstration day for the local surf club at a local beach on the date. The weather had got unpleasant and a strong wind and big swell were looking like they were going to deliver some choice waves. Still not facing up to reality I packed a quiver of boards and headed off to the beach where I waited patiently. Only one couple had said they were going to turn up but was expecting maybe a couple more to arrive with time. Sat in my car I watched optimistic holiday makers come and go as the rain continued to beat down. The weather forecast confidently stated that the clouds would clear and wind drop just before high tide, this would be ideal. Yet when my mobile rang with the couple asking if it was worth their while coming down I apologised and talked them out of it. Fearing the complications presented by changing into a wet suit with an indwelling catheter attached I fled with my tail between my legs. Back home I collapsed in tears on the kitchen table trying to explain the paralysis and fear I felt and faced up to the fact that I was infact, maybe only temporarily “disabled”.
The kids broke up from school the week after and I had plenty to distract myself from the constantly filling bag of urine attached to my right calf. There were more highs and lows but I had managed to make sense of my emotions by thinking of my immobilisation as a “loss” that I needed to grieve.
The five stages of grief.
Denial- I had spent years pretending that my symptoms were nothing serious. I had ignored the signs and blamed myself for that, I blamed the doctor who I had seen a year earlier for not doing anything or delving further. I avoided the school run and let confused that this was happening to ME. Initially even the kids squabbling could not shake me from numbness.
Anger– All of a sudden I could no longer do the things I wanted to. I became easily irritated by the things that I should be able to control, including the kids. I felt frustrated, anxious and irrational. Before I only had problems peeing now I had UTI’s and paraphimosis. I wore dark boring colours and did my best not to stand out, always conscious that beneath the tracksuit bottom with elasticated waist and zippered ankles was half a pint of piss.
Bargaining– As my confidence grew I was able to discuss what was happening to me with others. I felt that If I did exactly what I was told, take the pills (yesterday discounted as pointless), shower twice a day, and attend further tests then the situation would magically get better. It was a struggle to try and make sense of what was happening.
Depression– Sometimes without warning the perceived enormity of the situation would clobber me. Just the slightest thing would send my off into a little black haze that I wanted to wallow in. I did not care how upset people might be by my moods I wanted to make it perfectly clear that I was not happy.
Acceptance– A lifeline was hand to me by a urology nurse in the form of a Flip Flo valve. This little device enabled me to unplug the bag from my ankle should I wish to do some exercise. Once I had figured out that I had to get a supply of bags and valves from the doctors I was able to go cycling and surfing again. A more positive mood took over. One step at a time I was getting back to normal. My grief however is an ongoing process I feel unable to accept until I know what the next stage of “normality” will be.
Another appointment had been made for my for the 30th of September (Yesterday). For weeks before I had been looking forward to it, I had convinced myself that I would have the indwelling catheter removed and a period of “active observation” would begin. I attended the outpatients appointment with optimism. How foolish.
Yesterday I was told I had 3 options
- 1) Ccontinued use of the indwelling catheter to be changed every 10-12 weeks.
- ISC which I must remind you I was offered on the 7th of July! (still angry you see) and have requested several times since.
- To go on the waiting list for a TURP. http://www.nhs.uk/conditions/Resectionoftheprostate/Pages/Introduction.aspx
I have decided that I want to try ISC before putting my name down for a TURP. So the waiting continues and I continue my intimate relationship with an indwelling catheter. I should have an appointment with a nurse to show me how to do ISC in 1or 2 weeks time. I look forward to a return to meaningful life.