It’s a full time job having a chronic health condition

Yesterday was a super busy day and today I’m knackered. I had 4 hospital appointments at 3 different hospitals and spent all day either sat in a waiting room or driving between hospitals!!

First off I had an appointment at 9am at the Treatment centre. This was to get my 3 monthly injection that puts me into menopause to control my endometriosis symptoms. Because it was so early I had to be organised the night before and make sure I was connected to my feed early. It runs for 12 hours and I have to factor in the time it takes to disconnect in the morning so I had to be hooked up by 7.30pm at the latest on Wednesday night.

After I had been jabbed in my bottom I went over to QMC hospital to see the specialist nurse on F22, the gastro ward. In January I had a new Hickman line inserted on the right side of my chest and where they removed the old line from the left side I had a wound that took ages to heal. For 6-8 weeks there was green gunk coming out what was basically a hole in my chest- not nice. Over the last week the scar has started to itch and has become red and sore and yesterday the redness started spreading across my chest. So I emailed the nurse a photo and she told me to come in to get it swabbed and checked out.

After that appointment I headed over to City hospital to have some blood tests done. These are ones I have done regularly to check that the immunosuppressant meds I’m on aren’t fucking up my kidneys or liver. Parking at city hospital is a bloody nightmare and it took me over 30 minutes to find a parking place. I actually couldn’t find a proper space so I ended up dumping the car on some double yellows but I have my blue badge so it’s all good.

Sometimes I’ve been for blood tests and I’ve been in and out in 10 minutes but last time I was there 2 weeks ago I waited almost 90 minutes! Yesterday the wait time was about 15 minutes so I couldn’t complain. My veins are terrible so it can often take a few goes before we get blood but yesterday they got it first time so it was a good day!

I then headed home for a little bit and me and Big Girl went to vote in the local elections. I think it’s so important to vote as women died for us to have this privilege and it’s something I drill into both of the kids. And then before I knew it it was time to head back to the treatment centre again. This time it was for an ultrasound on some lumps I’ve got on my legs. I’ve had them for years but they’re getting really quite big now so the doctors want to get them checked out. During the ultrasound the radiologist said there’s a couple that they’re not happy with due to the size and vascularity and so they said they want me to have an MRI scan to get another look at them.

On the way home from the hospital I had a phone call from the IBD nurse asking how I was feeling after my cold/chest infection. I told her I was only just over it and was planning on restarting my immunosuppressant medication. However when I told her about the problem with my chest she told me to wait until we knew what it was. If it’s infected and I need antibiotics then I will need to stay off the immunosuppressants for the time I’m on antibiotics.

After all these appointments I was shattered but I had to drop Big Fella off at the City Ground for the Forest match. Hubby was at a work meeting in Windermere and was going to be racing home to try to make kick off. He said Windermere was beautiful in the sunshine and suggested that we take the caravan up to the Lake District once we start going out and about in it. The Lake District was actually where we spent our first holiday together so he was probably feeling nostalgic!

I was too tired to cook so I took Big Fella to Wetherspoons far a cheeky burger and a pint (it was shandy for me).

Can you believe that Big Fella didn’t know what a shandy was?? I had to explain to him what it was I drinking!!

After I had dropped him off I went home, put my PJs on, hooked up to my feed and got into bed. And today my whole body hurts and I feel like I’ve run a marathon! At least I got all the appointments done and dusted in one day instead of them being over 4 different days. But who would have thought that I would need a day to recover from hospital appointments!

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...

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More than just a bag lady

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