The not so glamorous side of chronic illness

On TV and in films being chronically sick is always presented in such a glamorous way. The protagonist always has perfect hair and makeup, tonnes of visitors and there is never any mention of bodily functions. My blog intends to be a real insight into my life with chronic illness. So that is your graphic content warning. This is nothing like the Hollywood blockbuster portrayal of chronic illness.

This week I shall be checking my dignity at the door when I visit the Bladder and Bowel clinic. My appointment has been set up because I need to be taught how to self catheterise due to ongoing issues of being unable to urinate for hours at a time, only to then end up in acute urinary retention. Apparently one can not simply be taught to self catheterise - even after being referred by two district nurses and a general practitioner, you have to attend a clinic where before you even set foot in the door you have to answer a highly personal questionnaire and measure input and output of fluids.

I understand the need to ascertain why I am having problems in this department however I would have preferred to be taught how to self catheterise first so that I could avoid the painful bouts of being unable to empty my bladder first. Maybe I expect too much but I would have thought reducing someones pain would be the priority not prolonging it.

I received the letter inviting me to my appointment between Christmas and the new year along with a humongous questionnaire and a sheet for me to write down (for three days) how much I drank and how much I subsequently urinated. For the uninitiated you can't simply guess how much you have urinated but actually have to measure it.....in a jug. I was not impressed with how the information was presented to me the covering letter made no mention of filling in the questionnaire or the pink sheet that I needed to fill in prior to the appointment. I did wonder how many patients turn up to the clinic having not filled out either and it's a simple fix just to include a few lines stating the paperwork enclosed needs to be completed before attending.

I ended up having to buy two plastic jugs for operation "measure my piss", one for our bathroom upstairs and one for my chemical toilet downstairs. I also had to get a notebook to put beside the toilet upstairs so that when I measured my urine during the night I could write the time and the amount. It also involved me wearing a watch for the whole three days so that I knew in what hourly gap I could place my latest offering. I guess if you are a "normal" person who visits the toilet to urinate up to seven times a day (link) then it is not too arduous but yes you guessed it I am not normal!! 

When I first saw the chart I laughed like a drain - I would have said pissed myself but it didn't seem appropriate. The boxes in which I was supposed to record the relevant information seemed a little small. I found over the course of three days if I wrote in very tiny writing I could get in my multiple visits in the minuscule space. Nothing like highlighting the fact that your toilet habits aren't normal than receiving a form to fill in that barely gives you the space to record that fact.  

I found out very early on there were certain things that needed to be avoided during this measuring phase for instance wearing anything with toggles or that could dangle down and accidentally find themselves floating in a full jug. Not to give you too much graphic detail (but I am sure this exercise is a darn sight easier if you possess a penis) for us ladies it involves contortions of which it has been one of the few times I have ever been grateful to have Ehlers Danlos Syndrome. Holding a jug under ones lady parts is difficult enough whilst attempting to go, then bringing the jug back out again without spilling a drop is something I would have paid to see on The Generation Game - now I am revealing my age! There were so many occasions where I nearly spilled the contents of the jug over myself the theme tune from Mission Impossible kept playing in my head.

Thankfully it never happened but I did have an incident where a dog came barging into the bathroom and displayed far too much interest in the contents of the jug. As I batted it away its nose bashed the side of the jug nearly sending its contents flying. It was a nerve-wracking three days. I am relieved (no pun intended) that this is now over. 

It did produce some interesting results on average I pee 25 times a day, Drink 6.8 litres and pass around 5.9 litres. Considering I am on salt tablets and fludrocortisone to hold onto fluids and boost my blood pressure I was surprised to find how little fluid I was holding onto. I don't really know how much I was expecting but to be drinking so much and holding onto so little was a real surprise. I do wonder how much of that fluid is retained as I have been having such horrific night sweats of late that I am having to change my pj's half way through the night as they are drenched, as are the bed-clothes.

I have always drunk a lot, even as a baby I liked nothing more than guzzling on my bottle which lead to me tripling my birth weight in record time. No one at the time realised it was my constant thirst I was satisfying not hunger. It is only since I received my diagnosis of dysautonomia that we have been able to piece together why I have a constant thirst. It is also one of the symptoms of dysautonomia which I now believe I was having symptoms of throughout my life and it didn't just suddenly appear in 2007.

My bladder problems surfaced in 1998 after major surgery for the removal of bowel adhesion's. Twelve hours after the operation I was still unable to pee, I had gone into acute urinary retention and needed a catheter fitted. Not at all uncommon after receiving a general anaesthetic. The nurses at the time told me it was because the surgeons had bruised my bladder during the operation. How true that was I will never know. What I did notice after this hospital stay was that I was unable to hold on when needing to go without leaking. Only a small amount but enough for me to feel self-conscious. In the job I was doing frequent toilet trips were frowned upon so I just had to manage the best I could. Things like Tena pads weren't as freely available back then when I was 25, so I would rely on pant liners that I changed frequently.

Because of my age I was far too embarrassed to seek help and for the next 15 years I suffered in silence and as you all know if you are a regular reader of this blog the bladder issues have become much worse. I now have problems initiating urination, I have to strain to get my bladder to empty completely and I still leak. In the last twelve months I have been catheterised twice due to going into acute urinary retention. So now it has been decided by the medical professionals that treat me that I need to be taught how to self catheterise.

I didn't realise how much my frequent toilet trips were impacting my life until I was chatting with my husband about wanting to see the new Star Wars film. He said to me "I would love to take you but you couldn't sit in the cinema for two hours without needing the loo" and he was right. I can't watch an hour-long TV programme without getting up for the toilet at least once. At the cinema you can't pause the film like you can on Sky. This was a bigger problem than I was admitting to myself. It is funny how you adapt behaviours to accommodate your problems without realising, a few years ago I stopped drinking for an hour before leaving the house so I could avoid constant trips to the toilet. When I need to go I can't hang on because it gets quite painful quite quickly. So a trip to the cinema is definitely out.

I was planning in this post to let you all know how my appointment went however I have been hit by a wall of fatigue and it really deserves a post all of its own!