On that particular day I was absolutely exhausted and barely able to walk more than a few steps but I knew that if I cancelled the appointment it would be weeks or months before I got another one so I dragged my sorry ass down there. The nurse was very apologetic that I had had to attend the appointment but she had to treat me like a new patient because I’d been discharged from the service. Despite my bladder being absolutely fine most of the questions were based around urinary incontinence. I think my bladder is the only thing that works properly below my waist! I had to explain that I didn’t really eat or drink because I’m on TPN and had to go through the history of my IBD (inflammatory bowel disease) and subsequent intestinal failure. Sometimes it’s really exhausting having to tell the ‘story’ over and over to different health professionals but I tend to have a standard ‘script’ that I now rattle off without any emotion.
She asked me how many pads I used a day. It can vary depending on how bad my bowels are from 3-10 but the maximum they are allowed to prescribe is 4 a day. I remember when I went to my last continence appointment when I first moved to Nottingham I was told that you got 5 a day if you lived in Nottingham City (which I don’t) but only 4 a day if you lived in Nottingham County (which I do). I knew there was a postcode lottery for NHS treatment but surely there should be a standard agreement on how many pads people get, or, and this is really crazy, out of the box thinking, maybe they should give people what they actually need? Told you it was a crazy idea!
At the end of the appointment out of nowhere the nurse turns to me and asks “would you like me to test your urine?” Err, no thanks was my reply. “Would you like me to scan your bladder?” she asked next. Err, no thanks was my reply again. No problem she told me, they’re just services we offer. I had to stop myself from laughing. Despite me telling her that my bladder worked perfectly well she still offered to check it. I told her that I had just been discharged from hospital and that my team test my urine weekly as an inpatient and that I had been tested within an inch of my life over the last few weeks.
Finally I was handed a black bin liner containing two packs of Tena pads which would last me until my delivery the week later.
I was so happy to get back to Mum and Dads and just collapse into bed. But a couple of hours later my alarm went off reminding me that I needed to connect to my TPN feed. When I’ve been in hospital for a while I get so used to the nurses doing it for me that it takes a while for me to get back into the swings of things at home, hence the alarm on my phone to remind me. I was still feeling really unwell and it took all my energy to do it. I had booked up in the bathroom and could barely manage the 4 steps back to bed.
Luckily the next day I was feeling a bit better and managed to get out of bed. On Friday my sister text to ask if she could come to see me the following afternoon. This was the text exchange between us:
She did get me a good present- she got me a copy of The Comfort Book by Matt Haig. According to the listing on Amazon ‘The Comfort Book is a collection of consolations learned in hard times and suggestions for making the bad days better. Drawing on maxims, memoir and the inspirational lives of others, these meditations celebrate the ever-changing wonder of living. This is for when we need the wisdom of a friend or a reminder we can always nurture inner strength and hope, even in our busy world.’
I follow Matt Haig on Facebook so had seen quotes from the book and I had it on my Amazon wish list. I’m looking forward to reading it and will probably keep it by my bed to dip into as and when I feel the need. I’ve even sent a copy to a friend who is having a tough time at the moment. Here is the link to it on Amazon.
Yesterday Mum and Dad took me to East Bridgeford Garden Centre. It was great to get out of the house but after only 15 minutes of walking round I was exhausted. Luckily we had brought the wheelchair with us so Dad pushed me round the rest of the way. It was the wheelchairs first outing as on holiday I was either having a good day and didn’t need it or didn’t feel up to going out so stayed in the house (and of course I ended up in hospital so the plastic had stayed on the wheels!). Being in the wheelchair I felt much more vulnerable, I don’t know why and it gives you an idea of what permanent wheelchair users experience. Luckily the garden centre was very wheelchair friendly, Dad not so much. We did bang into a few displays but luckily not into other people!
Yesterday’s trip out has left me completely exhausted and I’ve spent most of the day in bed. I did manage to ring Sky and sort out my tv, phone and broadband package. Our contract ended a few months ago but with everything that’s been going on it’s not been at the top of mine or Hubby’s to do list. I’ve managed to save us nearly £40 and upgrade our broadband to super ultra fast (so Big Fella will be happy as his Xbox should no longer buffer when he’s playing online). I have a huge to do list including things like changing our energy supplier, sorting out our mortgage, taking the dog to the groomers to make him smell better, booking dental and eye test appointments for everyone and sorting out a new motability car as mine is up for renewal. I’m going to try and tackle one job every day so I don’t get physically or mentally overwhelmed. Wish me luck!
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