Promises, promises

The doctor yesterday promised he would get me home in time for Christmas.

If today goes to plan then his promise could come good.

Fingers crossed.

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Caravan wankers

Over the last few years when I was stuck in hospital for long periods of time Hubby and I would talk about what we would do if I ever got ‘better’. During some of those times when I was so, so poorly the idea of just being at home for more than a few weeks at a time seemed like a far fetched dream. But I’m currently living that dream! And obviously I know I will never ‘get better’ but for these purposes ‘getting better’ meant being well enough to be at home, not in pain 24/7 and not in bed all day, every day. Not too much to ask now is it?? So in our talks, once I was at home and was well enough to do the real basic things like watch Big Fella play football, Big Girl play netball, go to Tesco, play with the dog, go to the cinema etc one thing kept cropping up. We would love to have a motor home and tour round the country. We talked about the places we would like to visit, how much Buddy the dog would love it and how it would give us a chance to reconnect with each other. But after a

The light at the end of the tunnel is a train

Last week was a busy and pretty crappy week for me health wise. I had to go and have blood tests done with the nutrition nurses and I had two hospital appointments; one with the gallbladder surgeon in Nottingham and the other with colorectal surgeon at St Marks. I was hoping to have at least one surgery date to write in the diary following these appointments but I came home empty handed on both occasions. Here’s what happened. I began noticing over the last few weeks that I’ve started feeling really crappy. I’m feel lucky to have been at home for the last 6 months and I have been the most well I have been for years but it felt like things had shifted slightly recently but I couldn’t quite put my finger on it. But years of being sick means I know my body and I can tell when something isn’t right. I have been feeling permanently exhausted and having way more bad days than good. I’ve gone back to spending 2, 3 or more consecutive days in bed, unable to do anything but watch tv and sleep.

One year anniversary

Today marks two important milestones: firstly my Hickman line is 1 year old and I have managed to stay out of hospital for a year too! I think this is the first Hickman line I’ve had that has made it to its first birthday, so this is quite a big deal. Most people have their lines in for years and years with no problems but in the past mine have blocked, split or become infected causing me to rack up a grand total of 17 lines in 10 years. But maybe my luck is changing… And the fact I’ve been at home without any inpatient hospital stays for a whole year is a milestone I didn’t think I would see. 2019-2023 was a particularly difficult four years where on average I spent more time in hospital than I did at home. And even when I was at home I was so ill I couldn’t get out of bed. There were some times during that period when I didn’t think I would live to see another Christmas because I was so, so unwell and I couldn’t see how I would ever recover. It was a long, hard slog and there were

More than just a bag lady

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