Words by Julie - Living Life With Paralysis

Like goosebumps from the inside 1

Tuesday by noon I had peed 12 times. If you are squirmy about the mystery and magic of the human body, best you not read on.


Monday was a botox day. It’s the day that I long for, and dread, every five months. Because my paralysis affects everything from the chest down, that includes my ability to control my bladder. What happens is it fills up, I get a little signal (more on that later) and I use a catheter to empty it. Without botox my bladder would give me a “signal” every 45 minutes to an hour, depending on how much fluid I have consumed. What the botox does is it relaxes (funny enough – actually through paralysis)  the muscles of the bladder (just like it relaxes your frown lines) and allows it to fill a bit more before sending the “I have to pee” signal. The botox also relaxes the bladder wall so that when it fills and ‘spasms’ I don’t pee my pants.

The next little bit of science is the process known as Autonomic Dysreflexia (we call it AD).  AD is what happens when someone with paralysis has something wrong – but can’t sense it. It could be a full bladder or bowel, or it could be something like sitting on a sharp object. Some people even experience AD during sex. It is the nervous system “knowing” that something is not right, but not able to get the message to the brain so the brain can do something about it. For most people it starts with an increase in blood pressure. From there it can progress to headache, sweating, red face, nasal congestion and nausea. For people with higher levels of injury it can lead to death if it goes undiagnosed or untreated.

My normal blood pressure is about 85/65 which is on the low side of healthy – but because of my SCI that is considered normal. So when I went into surgery Monday I had my normal BP. Of course, they use the monitors and record my vitals during the surgery (even though I use no anaesthetic). I asked for a print out when it was over and was fascinated by the results. You can see them below.

BP off the charts – well, for me that is

During this procedure I had more sensation then I have ever had in the past (I think this was my 5th time?) and I could feel the AD set it, more severely than ever before. Until now I have not found the right words to describe it – but yesterday while trying to explain it to Theo I found them. It’s like getting goosebumps, but on the inside. It starts right in the zone in the middle of my pelvis and it runs up my spine and down my legs – and on Monday it stayed like that until the Dr finished the injections and removed the scope and catheter.

The peak of the vitals was when the injections started – and boy it was intense. It was a close-my-eyes-until-it-is-over time. Not fun. It made me realize that down the road I may have to use anaesthetic so I don’t have to experience the AD.

All seemed normal until a short while later when I was on my way home, and then at home, because I was getting that “feeling” every 15 minutes. Between getting home at dinnertime and going to bed I had peed 10 times. I knew it was going to be a long night – and it was.

The following day, while at physio, I must have missed that sensation because I was busy working out. I had chills up my body and a massive headache – like a dagger and a boulder smashing into my temples at the same time. I realized that it might be because I had to pee (even though I had just gone) and then, like magic, it all went away as soon as I used the bathroom. That, my friends, is autonomic dysreflexia. I hope that in my case my bladder would let go before the AD killed me, but I don’t really want to find out.

I happened to have an appointment with my GP that same day and when the nurse dip-tested my urine she said it “light up like a Christmas tree”* – not something I wanted to hear, but at least that explained the frequency. By the end of the day on Tuesday I had lost count, but I know I had cathed 25 times or more.

I have honestly been doing everything possible to keep infections at bay…

Now it’s Friday and I am still peeing like I was on Tuesday. It’s absolutely exhausting and it means I don’t get far. I am doing everything to try and get rid of this infection. Even the antibiotics the Dr gave me do not seem to have helped. Test results are not back yet, so I’ll have to wait until Monday to see if it is even the right one.

It’s going to be a long weekend.


*This is not the first, nor the last UTI I will have. I am so tired of just hitting my stride and getting knocked down again.

One comment

  • Ene Underwood says:

    Thank you for sharing these hard parts of your SCI, Julie, in all their clinical detail. You exude such a picture of health and vitality, it is easy as a blog reader to forget that you have built all this health and vitality in concert with the ever-present reality of living with a complex SCI. You are making a big difference in building awareness and understanding …. both for blog readers living with SCI and for those of us for whom SCI is a theoretical concept.

    Wishing you a rapid recovery from the UTI.

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