Sorry for delayed update. Thanks for all your lovely messages. I have been through the mill this time.
As you know I was admitted to hospital a week ago with flu and an aggressive infection in my Hickman Line. Yesterday I was also told that I have a chest infection and possible lung GvHD. The microbiologist recommended toxic levels of antibiotics. 3000mgs of Septrin is a whacking big dose.
After a couple of doses I started to feel really ropey. I ended up in a real state. I felt like I was on the verge of passing out all the time. I also felt like I was just about to throw up. My limbs became shaky. If I went to the loo I felt like my legs wouldn’t go in the direction I wanted to. They also felt really weak, like they were going to give way. My breathing was bad and I’d get really out of breath on very little exertion. I felt like I wasn’t properly in my body and my thoughts were very muddled. I wanted to ask my sister how my mum was but there was a bit of me that knew this was wrong. For those who don’t know, it was wrong because my mums been dead for 18mths. The final straw came when my hearing started to deteriorate again. When I came in I needed the volume at 20. That day it needed to be 45 and I still didn’t catch every word. I’ve already lost a substantial amount of hearing. The thought of losing more was too much to bear.
That night I had a bit of a melt down and had a cry. I decided to stop the antibiotics. The doctors tried initially to change my mind but when they realised how bad the side effects were they agreed to swap antibiotics.
It’s taken 2 days but I’m beginning to feel human again. I’m still very breathless on exertion. I also still feel very nauseous but not as bad as on the verge of being sick. My thoughts are better. I’m still losing my train of thought but definitely not as muddled. The tremor has lessened. So all in all lots of improvement. Still a way to go though.
One of the worst things to have happened is that I have lost one of my wonderful hearing aids. I’m absolutely gutted. I had it in yesterday. I have to keep removing it to have my temperature taken. As far as I’m aware I had them both in when I was taken down for a CT scan. At 6pm when they next checked my ob’s, I put my hand up and realised the right one wasn’t there. I hadn’t realised because that ear hasn’t recovered from what the antibiotics did and so was already muffled. I searched my whole room. I even went down the bin. I’ve had nurses hunting and CT has also been searched. I feel awful. I’ve worn hearing aids for around 8 years and never even needed a repair or replacement. I treat them very carefully. I’ve not even accidentally got in the shower or bath with them as I hate not hearing. I got these ones last year and they are part of a clinical trial. They have given me a new lease of life because I can hear well enough again to participate in life. Not only can I hear, I can also sing again. My long suffering partner noticed that I’d stopped singing in the car. She always comments now on how lovely it is to hear me sing again. I really hope they will understand my predicament and be able to issue me with a new one. I don’t know whether to ask for prayers to St Anthony (patron saint of lost things) or St Jude (patron saint of lost causes). If you’re in Kings, please check the corridors on case it fell out while I was being wheeled to CT.
In order to make sure a thorough search was done I decided to strip and remake my own bed. It took me an hour as every time I walked from one side of the bed to the other I got out of breath and had to sit down. Sadly it’s nowhere to be seen.
The nurse came to check my ob’s just as I finished doing the bed. My sats were only 89. No wonder I was breathless. After sitting still and doing some deep breathing they went up to 95! 100 is normal.
So the latest news is mixed in nature but I’m just pleased to be able to interact with my surroundings again.
The last 2 quotes I’ve written on my board have been “I am stronger than my challenges, my challenges will make me stronger” and “the body achieves what the mind believes” I shall attempt to practice what I preach.
Lots of love to you and yours and gentle light in the darkness.
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