The last week has been very up and down so this will just be a quick update.
I want to thank everyone who sent me messages of support after last week’s blog post it meant a great deal to me. Many of you I only know through blogging and we have never met in real life, thank you for showing your support.
On Friday last week I had a phone call from the bladder and bowel care team (I get a yearly phone call). On this occasion I was telephoned by the lead nurse, this was the first time I have had any dealings with her. To put it quite bluntly she was horrified that I had been shown how to catheterise and then left, with no investigations taking place. Especially as my symptoms are indicating Fowler’s Syndrome. Whether it is or isn’t she couldn't comprehend why I had never seen a urologist. The plan is now that as soon as my CSF leak has been treated (and hopefully fixed) I will see a urologist and have the relevant tests. The head nurse is also going to ring me once a month to keep in contact. It was so nice having contact with someone in the medical profession who listened and wanted to do something.
I had a good two days over the weekend, this would have possibly lasted longer had I not decided to push my luck and help out a friend by putting together a CV (resume). It took much longer than I had anticipated and by Monday evening I could have cried my head was hurting so much. Every time I raised my head from the pillow the pain throbbed with every beat of my heart. It hasn’t settled since and yet again I am writing a blog post laid flat with my chromebook balanced on my knees so that I can see the screen.
I am hoping the coming week is kinder and the pain starts to settle. I am chasing my gp today to find out what is happening with my epidural blood patch as I have heard nothing from the hospital as yet.
To cheer myself up I have bought some plants for the garden, if it is dry on Sunday I will be issuing planting instructions to my husband. I am hoping the weather settles soon so I can lie down outside rather than being stuck inside all the time,
So that has been my week, very rock and roll!