This is a topic for all of us – we just don’t like to talk about it (and a few other topics) – problems with peeing.
The whole thing ends for us with a catheter which makes us all feel uncomfortable. Me at least, because not having simple bodily functions under control is terribly bad for me. For me it is an enormous loss of identity if you are not in control of your own bodily functions. I am not very far advanced yet and I think I profit from the fact that I never gave birth to children and I have a relatively strong bladder. I know from many of my friends with MSA that a weak bladder was the first MSA symptom for many of them. By the way, I have hardly heard of MSA patients who do not have this problem.
However, I can still say that I still have the whole thing relatively well under control. I also know of other MSA patients who are years after their diagnosis and still have the subject of peeing well under control. All I can say now that things are a bit “different”, although it may be that I am oversensitive to the topic, out of caution and horror.
At the moment the peeing situation in my case is such that I hardly have any complaints during the day, I am even better than some of my friends, who have given birth to children. An “urgency” only makes itself felt, but this can be the result of my psyche, because if I have to, I don’t want to delay it and take it to the next level, I’ll go right away.
At night it is different, I have to go out at night, which I would not have to do before. And in the morning immediately after waking up. And sometimes it happens that I have an impulse, then I stagger to the bathroom – and then nothing happens. And that can happen a few times. So I have “start-up difficulties”.
I have some friends who use a catheter and they think that it is not so terrible, and they finally have no more problems with drinking. Which is quite an issue for us, I also avoid drinking in the evening before going to sleep or when I am out. Drinking and being well hydrated is a big and important issue. Friends with a catheter even go diving, snorkeling or riding the waves. I would also like to – but without a catheter.
There are many different types of catheters, when there is time, I think it is important to find a good urologist who can advise you well and understand the disease. Because the point is that the brain does not communicate with the bladder (as with the other organs) or does not communicate sufficiently. There is any kind of exercise or medication is void in the long run. Botox can also – for a while – help. One wonders whether all this back and forth will pay off if it all comes down to catheters in the end.
However, catheters can also cause difficulties. I think you have to find what suits you. As I found out, leakage is possible and some people get urinary tract infections despite the use of a catheter, which can be life-threatening. A lot depends on how you have been in the gene lottery of life and which areas of the brain are affected.
In any case, despite being overprotective and paranoid, I am still happy to get along without everything. Which actually doesn’t make “the soup fat” anymore, because having these prospects is like a sword of Damocles, and the quality of life is down the drain. Carefree concert, cinema or theater visits are no longer possible.
A few more tips and tricks to finish off:
– Minimize coffee consumption. Coffee consumption stimulates urine production
– Sleeping with a raised head/upper body. This is not only beneficial for blood pressure fluctuations, it also promotes a quieter night. The kidneys produce more urine – they are more diligent due to active nerve conduction – in the horizontal
– Drink enough despite all odds! Ensure sufficient “flushing” to avoid residual urine, because residual urine can cause a dangerous urinary tract infection
– Have a urodynamic measurement performed by a urologist every year. This is definitely not painful. Use the time to establish a good relationship with the urologist. A neuro-urologist is naturally recommended.
– All those who have a severely disabled person’s card: Get the Euro-Key, a Europe-wide standardized locking system that enables physically impaired people to independently access handicapped accessible sanitary facilities and equipment free of charge with a standard key.
cbf-da.de
– Please take into account the possibility that you might not be affected to the maximum, do not give up easily, this fate is not inevitable. Some things are a matter of the head.