The 24th & 25th; I am really scared.

April 26, 2016 — Leave a comment

The 24th of April. 

Last night at Tiff Stevenson was great fun. I haven’t been to The Old Rep since I was at Hallfield and we went to see George’s Marvellous Medicine. It feels a lot smaller than it did then; row C was really quite close to the stage. I just wish the lady in front of me hadn’t been there as she was drenched in perfume and it kept making me cough. The show was really good – I was surprised to hear her talk so much about Black Lives Matter but she was really well-informed and we all did lots of clapping. After the show, she was in the bar so we had a chat and a selfie in which I looked awful. I need to just smile instead of pulling a face. She’s in the cool gang. 

Today, I’ve been trying not to succumb to the heavy cloud. For some reason, I decided to Google bronchiolitis obliterans (the technical term for what I have) and I found some information saying that once it develops, most patients die of respiratory failure in five years. I already seven years post-diagnosis. What does that mean for me? How long do I have left like this before I get even worse? How I’ve been was okay, I could cope with that. I am really scared that I’m going to lose the tiny amount of independence I have left. What if I become so breathless that I need the wheelchair even more? To the extent that I can’t wash and dress without gasping for breath? I really don’t know if I can deal with that, and suddenly it feels ever so real. 

The 25th of April. 

My shoulders ache this evening. More jabs today. I can understand why babies find it so distressing – it doesn’t just hurt at the time, every time I raise my right arm, I am sore. I am having lots of paracetamol. 

My mood has slightly improved; I do not feel quite so morose. I don’t know how proactive I can be about my breathing, I’ll just have to go to the gym as much as possible, really build up my muscles. I got my appointment for my next set of tests in October. Maybe I can improve things by then. 

For most of the day, I have been crocheting. I am making a Moomin to take to Robyn and Stu’s in May, and so far I have done the nose and the body up to the armpits, so it currently looks like a rather large nappy. We had to go out just after two to go to the GP, and today there was no palaver about what I was to be vaccinated against. Two in the right arm, one in the left again. Two more lots to go; one in a month, and the last one in seven months. 

Before going home, we went into Sutton because I had had a text from Waterstones to inform me of the arrival of my copy of Sara Pascoe’s book, and while there, I also ordered the new Harry Potter book because y’know. We went to Tesco too for some naan bread because we’re having curry tonight and the naans at M&S were unacceptable. 

Ouch. 

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