More than just a bag lady

I feel like I’m jinxed. Every time I start feeling a bit better and dare to make plans then the Universe decides it has other ideas and it all goes wrong. It really does feel like my body is trying it’s hardest to kill me, or at the very least kill the last shreds of my sanity that I’m desperately trying to cling to.  During this week it was Big Fella’s birthday. The team on the ward had worked really hard to make it possible for me to have day release from the hospital, juggling the times of my antibiotics to give me the maximum time possible at home and arranging for me to have doses of ketamine (a controlled drug) to take with me.  I had emailed Big Fella’s school to tell them he would be having the day off so that we could have some quality family time together, which has obviously been in short supply over the last 9 weeks of me being in hospital. I had the day all planned out: my IV meds and antibiotics would be finished by lunchtime, Hubby and Big Fella were coming to p...

Let’s talk about Candida. Although it sounds like the name of sex worker who might leave her calling card in a London phone booth it is in fact one of 4 bugs that have grown in my Hickman line and by far the most serious. Candida  is a fungal infection that is yeast based and it’s nasty little spores can migrate round your bloodstream and settle in various places in the body, potentially causing havoc. In my head I imagine them to be a bit like when you pick a dandelion and blow and the little fluffy bits catch the wind and off they go. The places they like to set up home are the heart, brain, eyes and bones so this week I’ve been having various tests to check whether this has happened or not.  On Tuesday I had an Echocardiogram to check that there was no infection in my heart. Except nobody told me it was happening so imagine my surprise when a random bloke wheels in this machine to my room and tells me to strip off from the waist up!  The only reason I happily complied ...

God, this weekend has been hard. Not so much physically but emotionally and mentally. It started with Hubby sending me this photo on Friday… Somehow over the last couple of years he’s managed to dodge it but the dreaded Covid had finally caught up with him for the first time. And although Covid isn’t really a ‘thing’ in the real world any more, in hospital it still very much is, so of course, this meant that he wasn’t able to come and visit on Sunday with the kids like he always does.  I found out on Thursday that my Hickman line was going to need to come out but I was hoping that it would all be done and I would have a shiny new one in time for Big Fella’s birthday at the end of the month. But I was talking with one of the nurses about it on Saturday and when I said that she told me that there would be no way I would be discharged within the next 2 weeks. Apparently waiting lists for line insertions and excisions are the longest they’ve ever been and she said that although she fel...

I’ve not managed to write my blog post about the Jubilee bank holiday weekend. The short story is that I was due to be discharged on the bank holiday Thursday but took really poorly. I thought I would miss going to London for the Platinum Party at the Palace on the Saturday night but the doctors and nurses were determined I should go and somehow got me well enough. I then spent days in bed recovering but my goodness was it worth it! There’s obviously a longer story and I’m working on it but if you read on you’ll find out why I’ve not managed to write it yet!  A week after the bank holiday Thursday I developed a very high temperature of nearly 40 degrees, had rigours, vomiting and pains all over my body. As usual this was lousy timing as I had been starting to feel better and was supposed to be discharged the next day.  The doctors assumed it was the second dose of Adalimumab that I had received the day before that had caused me to have these symptoms but to be on the safe side...

Today has been hard. I woke up this morning at about 10am after sleeping through the night for the first time in 4 weeks. I was in pain though and had such a bad headache I thought my head was going to explode. The one upside to being in hospital is that nothing is expected of you. There’s no chores to do and nothing stopping you from just staying in bed all day. So that’s what I did. Until around 1pm I got a phone call from Big Girl. I thought she was ringing to ask for money for her hairdressers appointment later in the day but instead I was greeted with her crying down the phone.  Between the sobs I managed to make out that she wasn’t feeling very well and that she felt sick. I could tell she was in the bathroom from the echoes and then I could hear her being horribly sick. She was very distressed as she was home alone. Hubby and Big Fella had gone with the rest of Hubby’s family into Nottingham city centre to see the Forest players in the market square celebrate their playoff w...

I’ve been in hospital for over 3 weeks. I came in with mega vomiting, (yes, that’s the medical term 😉) which then progressed to another obstructive episode. Although I’m not experiencing a full bowel obstruction it’s clear that my bowels are really misbehaving and to be honest it’s been pretty awful.  The doctors initially hoped that everything would spontaneously resolve, as it often does, with fairly minimal medical intervention but this time things have really dragged on. So they took the decision to do a CT scan which showed I have inflammation in my J-pouch and the bowel above it (the area I have drawn a red ring around on the picture I nicked from the tinterweb) To understand how bad the inflammation was last week I had a flexible sigmoidoscopy, aka camera up the bum 📸This time the procedure was very painful, despite having 3 times the ‘normal’ dose of sedative. They did see some ulceration of the lining of my bowel which correlates with the findings of the CT scan.  T...

This morning I got multiple texts from Big Girl in a panic that she had missed the deadline to register for the next Loughborough Lightning netball academy trials. She’s netball mad and having been in their U17 academy she wants to try out, and hopefully get a place, in the U19 academy when the training starts again in September. Being in hospital I’ve not been checking emails so it was possible that an email had been sent and I hadn’t seen it. I quickly check online on the Loughborough Lightening website and see that it says that registration is now closed.  Oh shit!  Feeling like the worst Mum in the world I fire off emails to all the contacts I have at Loughborough and ring Hubby in tears. He’s convinced that the trials aren’t until September so maybe registration is closed because it’s not open yet? I bloody hope so.  The guilt I feel at maybe having overlooked something so important to Big Girl is overwhelming. I actually feel physically sick. But there’s nothing I c...