I’m now four days into my stay in hospital, still some uncertainties and ‘mixed messages’ so still not sure what the outcome is going to be, but all this has given me a chance to do some thinking and soul-searching about my life and I hope….a future. I actually had no intention of spending my time doing so much thinking, in fact I had intended to try and do as much as I could to divert my thinking and worrying, but faced with the situation that I am in my concentration levels to actually do anything specific and divert my attention from worrying have somewhat dwindled, and has given me little chance to do much else apart from, eat, drink lots of water, have tests and physio and occasionally found a little time in between do some art/craft work, and when I’m really lucky grab a short nap. Although I have had some bewildering looks from some of the nursing staff……especially with a craft knife in my hand (I’m sure one or two the doctors think it’s a scalpel off their theatre trolley!)
The outcomes of the hospital stay this week will determine what they can or can’t do for me. There basically is no quick fix solution, but hopefully there is a chance I can get my life back near to how it was before, so I have to try to keep an open mind which even at the best of times is difficult, let alone when so much else is going through your mind, and making it virtually impossible to focus on the task in hand and loads of other problems are tumbling through your mind morning, noon and night, problems that require answers, solutions and understanding.
Luckily, I am on a two bed only ward with another lady who has the very similar bladder disability as me, and so we can both understand each others problems. As a result of this we have been able to encourage each other in trying to ‘ reach our targets’. I don’t want to go into too much detail, but by targets I mean the ability to pee when we are told to by the doctors and nurses rather than when we feel the urge to. This is all a sort of intense bladder retraining programme. However being woken up four times a night on the first night, again the second night, three times the third night and the plan is three times tonight……all between the hours of 11.30pm to 5.00 am, as well as having set times to adhere to throughout the day and only being allowed certain volumes of fluid intake is very exhausting, but if it does work it will be well worth it. The view from our room window is quite staggering, we can see an extremely large part of the Birmingham area, and being four floors up its almost like a bird’s eye view, so not being able to sleep and look out through the windows with the city lit up, does give me the chance to stare out the windows for the right reasons and take in the scenic view. However as much as I love to hear blackbirds singing their little hearts out….some one needs to explain to them that 2.30am in the morning is not the time to do it!
In the meantime part of the suggested long-term treatment plan is to have a series of Botox injections into the bladder…..yes I did say the bladder and not the wrinkles in the forehead!! And although this has proved to be a very successful treatment, it does also have its drawbacks. The positive effects of this treatment can last for anything between 6 to 18 months, and then further ‘top ups’ can be given. However as this sort of treatment has not been available very long, no one still really knows the long-term effects. The negative effects of the treatment can lead to having to self catheterise oneself several times a day every day for the period of time the injection lasts. This daily procedure in itself carries a risk of repeated infections, and if it doesn’t work fully can lead to problems with the kidneys. Whilst this sort of a subject is still taboo to talk about, there is sometimes a need for people to understand why it can and does lead to depression. For some it’s an inconvenience for others like myself it has been life changing.
So the bottom line is, do I take the risk to bring a certain quality of life back into my life or do I continue to suffer the ongoing problems I have had to encounter for these last few years? Tomorrow is another day, and in the meantime I will have to sleep on it…..or should I say think on it, after all I don’t think I will get much sleep tonight again.