I lost control of my bladder while I was having my stroke in ED many weeks ago. That’s when I started realising something was very wrong. Since then (for my 8 weeks in ICU), I’d had a catheter. The risk of having a UTI when a catheter is left in continuously, is really high. So after a string of infections, it was decided to remove it (alas the nappy I mentioned a couple of posts ago). I had no idea what to expect – that was never discussed with me. I knew that it could take a few days/weeks to regain proper bladder control after having a catheter removed, but I had no idea whether or not my stroke had left me incontinent. 

After just a day, I was getting sensation in my bladder and was able to hold for a short time. That could only be good news, surely. I was very excited. Regaining bladder control would make life much easier.

Ali came up to spend the evening with me. She asked about the dexterity in my right hand – something I hadn’t even thought about. I’d been so focused on movement of any kind, that I hadn’t really stopped to think about whether or not it translated to functional movement. She asked if i could put my thumb to each finger. I could. 

Excitedly, she said it wouldn’t be long until I could write. This is something that had never even crossed my mind. We looked at each other, grinned,  and she knew I wanted to try. She got me a notebook and a green texter. The first thing I wrote was ‘hello’ followed by the kids’ names. Then I wrote a note to them saying ‘goodnight’ and ‘I love you’. Unfortunately I don’t have a copy of those – I guess Ali would have taken them home for the kids when she left for the night. 

We were so excited. One more little part of me had been unlocked. My Dad, who had been with me for the past few months, had returned to Brisbane for work commitments. He’d hated having to leave and I missed him greatly. I wrote him a note. Ali took a photo of it and sent it to his phone. He was at a friend’s house having dinner when he received it. He called straight away – he was both emotional and excited (and surprised). Ali also sent the photo to Mum, who was still with us in Canberra and at home looking after the kids.

My communication to this point was still almost completely achieved by the laborious process of blinking one letter at a time. I could speak the occasional word but it was very quiet and often difficult to understand. So discovering my ability to write was a game changer.

Steve was so excited. He jumped in the car and came up to see me. He got me to write a note to my gorgeous Neurologist Kate. Kate had given Steve her mobile number. Although it was after hours (a weekend from memory and relatively late in the evening) he took a photo and sent it to her. She responded almost immediately. She too was amazed and excited.

The kids came to the courtyard for a visit the following day. They brought their guinea pig and rabbit. These were new additions to the family since I’d been in hospital, so the kids were excited to show me. I loved it.

Steve and the kids left to go to a friends’ place for lunch. Ali stayed with me. I had a big cry and said I was so sick of it all, sick of being sick. I wasn’t used to being separated from Steve or the kids and it was breaking my heart.

Katie and Matthew started at their new school on the Tuesday. I knew how nervous they were, particularly my baby who was only in year 1. Steve called to say they had gone off and seemed fine. I had a cry. I was sad to be missing it but glad they were ok. 

Ali came in to give me a shower. The nurse looking after me was particularly hopeless and had no idea how to get me into the shower chair. In her defence, it was no easy task and the ward wasn’t staffed like the ICU was. I’d been spoiled up there – they had lots of staff, incredible wardies, and they were slick! I was crooked in the chair, my bum was hanging out, and Ali and I giggled like little kids. Ali started showering me and there was water going everywhere! She realised she was going to have to strip off because she was getting so wet. Here we were, 2 sisters, one disabled, one in her knickers, navigating this new world we found ourselves in. As water flew, we laughed hysterically. She washed my hair and shaved my legs – 2 common tasks that had suddenly become a privilege. And then, just to add to the chaos, I got my period. Oh joy! That was going to be just one more thing to learn to deal with as a disabled woman.