St Marks update and Covid strikes again

Lots of people have been asking me if I’ve heard anything from St Marks after the tests I had done in July. Up until recently the answer was no. But last week I got an email from them to say I had a new appointment letter. When I opened it this is what I saw…

I think Hubby is disappointed that it’s so far in the future but at least now we have something in the diary. I think I’m more relaxed because the last few months I’ve been pretty well. If I were in hospital here in Nottingham or at home in agony then I don’t think I would be too pleased at having to wait until February. But as things stand I’m happy to keep hospital appointments to a minimum and enjoy the run of good luck I’m having at the moment.

It does almost seem too good to be true that I’ve been out of hospital for over 2 months and at the back of my mind is that little voice telling me ‘You must be due an admission soon. You never stay out of hospital for too long’. I’m trying to ignore that voice and focus on having time at home with Hubby and the kids.

So what have I done since I got out of hospital? We desperately wanted to go abroad as a family but I struggled to get travel insurance and after having repeated admissions I was a bit scared to travel and leave the country. So me, Hubby, Big Fella and the dog went up to Whitby for a week. Big Girl didn’t come as she had already booked a holiday to Magaluf and we couldn’t find a time that Hubby could have off work and Big Girl was free before Big Fella started at college.

We have celebrated birthdays and both the kids got exam results which we were very proud of. Bestie came up from Hertfordshire with her husband and 3 of the 4 kids over the Bank Holiday weekend so we got to have some lovely quality time with them. But mostly I’ve just been taking pleasure in the mundane: giving Big Fella lifts, having family meals, playing with the dog, just being at home.

I did have a bit of a scare a few weeks back that I could have an exit site infection- this is an infection around the Hickman line, not inside it, so it’s easier to treat with oral antibiotics and doesn’t usually result in sepsis like an infection in the line does. I went to the hospital and got it swabbed and the specialist nurse said she’d ring if the swab grew bugs. So when she rang 2 days later I shit myself. But she was ringing to say it was all ok! I’ve got so used to getting bad news over the years it felt strange to have this bit of good luck.

I’ve had a couple of nights out too. I went to the theatre to see Miriam Margolyes- she was doing one of those evenings where she talked about her life and answered questions from the audience. It was the most expensive theatre ticket I’ve ever bought (apart from when Hubby and I saw Phantom of the Opera in Broadway) and it was a good night but it wasn’t amazing. I also went to charity bingo evening with some friends which was good fun and I won 2 prizes after getting a line and a full house!

But for the last 8 days I’ve been tucked up in bed after getting struck down with Covid again. I started to feel unwell quite suddenly one evening and by the following morning I couldn’t get out of bed. I had headaches, muscle aches and pains and quite bad breathlessness when walking about. This is my third bout of Covid and this time it’s hit me pretty hard and knocked me for six. I’ve tried over the last couple of days to get up and do a few bits but usually only last an hour and then go back to bed and sleep for 4 or 5!! I’m exhausted and my whole body hurts. I went for my flu jab today and I wasn’t sure if I was going to be allowed to have it because I’ve had covid. But the nurse checked me out and because I didn’t have a temperature she jabbed me and sent me on my way. So I’m using the enforced bed rest as an opportunity to catch up on some box sets. I’ve just discovered Modern Family and think it’s hilarious so am working my way through the 10 seasons of that for now.

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...

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 sl...

Trying to get vaccinated

When I was an inpatient recently I asked about getting the Covid vaccine because I’m classed as Clinically Extremely Vulnerable (ECV). Apparently other patients on the ward had gotten theirs but I was told that it wouldn’t be possible and that I would have to get in touch with my GP. Apparently staff within the hospital had been using the system to book vaccinations for friends and family by saying that they were an inpatient and as a result they were now only vaccinating staff who could show their ID badge. I can understand that people are worried about the people that they love but to think that people abused the system in that way makes my blood boil. So when I was discharged I rang the GP surgery and was told that they had absolutely nothing to do with the vaccination programme and that I would need to get in touch with NHS England. So I called NHS England and spoke to an adviser who told me that according to the system I wasn’t eligible for a vaccination. I explain...

More than just a bag lady

Search This Blog