So what have I been doing? I’ve done what most people would consider the boring, everyday stuff that I so desperately wanted to do when I was an inpatient. I’ve been to the shops, sorted out some life admin at home, planted some flowers in the garden and planned a summer holiday. I’ve watched Big Fella play football, went to a gig with Big Girl and to the cinema with Hubby. I’ve sat down to family meals, had breakfast in Wetherspoons, done some sewing, visited family in Liverpool, celebrated my in-laws 50th wedding anniversary and watched the dog swim in the sea. I have surrounded myself with friends and family on my good days and watched hours of Netflix in bed on my bad days (Baby Reindeer- OMG what a programme!)
Just recently I’ve been down to London to see Take That. When I booked the tickets way back when, my health was still not great, so why get tickets for London when the TT boys are coming to Nottingham? Well, I was going with one of my coffee group friends from Down South and she initially suggested that we got tickets for Nottingham and she would come up. But I was worried that if I was too unwell to go not only would she have to find someone else to go with her but someone who was willing to trek all the way up here as well. If I’m honest, in the back of my mind when I got the tickets I thought that chances are I would either be in hospital or too poorly to go. There’s been so many things that I’ve missed out on because of my illness and I thought that this Take That concert would just get added to that very long list. So tickets for the O2 were bought so it would be easy for her to find a replacement for me.
Except, she didn’t have to.
So I went down to stay with my friend and we had a great time at the gig.
My friend was happy to drive to the O2 so I didn’t have to worry about the hassle of trains and tubes, especially late at night after the concert when it would be a mad dash for the last train home and I knew I would be exhausted. It also meant that I could take all the stuff I needed to connect my TPN and do that before we drove home. I knew that after being at the gig I would want to just crawl into bed as soon as we got back and there have been times in the past when I’ve been out late I’m just too tired to hook up to my feed so don’t bother. But if I skip a feed it makes me feel really awful the next day and being away from home I didn’t want to take any chances. So I threw in a bag of supplies into the boot.
I didn’t take my feed as it would need refrigerating during the day so instead took a bag of saline and my travel kit for connecting away from home. I’ve found using a travel changing mat is handy for this. I can clean it, it’s light weight and it’s the perfect size to lay out all the other items like gloves, giving set and flushes.
So after the concert had finished and we got back to the car I laid everything out in the boot of the car and hooked up. We did get some funny looks from the people parked either side of us or people driving by but I have learnt not to care any more.
Being on TPN 7 nights a week does take away life’s spontaneity as everything has to be planned in advance with military precision. But being on TPN doesn’t mean you have to stop doing the things that you love. I’ve often been to the cinema, the theatre or gigs while connected and never ever had an issue. Although I was watching a play a few weeks ago and during a really quiet part my feed pump started to alarm! I think everyone thought it was my phone so I got some dirty looks and ‘shushed’ but I just ignored them. Luckily it was an easy fix; the giving set (the plastic tube that the feeds travels through) had gotten kinked and I just needed to straighten it out a bit like you would a hosepipe in the garden.
And I guess that’s the purpose of this blog post really. To show other people on TPN that it’s possible to live and do fun stuff and not have your feeds rule your life and to show people that are well how lucky they are that they don’t have to worry about stuff like this.
It’s not just my feed I have to think about when I’m planning a trip or even just leaving the house to go to Tesco. In my bag not only do I have to make sure I have my medication with me but all my toilet supplies. I have a bag inside my bag that contains everything I might need: my radar key for the disabled toilet, a couple of tena pads, wet wipes, cream for my bottom, nappy sacks, body spray to disguise the smells, a change of underwear, and antibac gel. I always keep a change of clothes in the car in case of serious accidents as well as my spare walking stick and my blue badge. I have to plan for all eventualities and sometimes leaving the house can feel like a Herculaneum task. Which is why I tend to just stay in bed when I’m having a rough day cause I just don’t have the energy to deal with all this.
But if I’m having a good day, or even just a good couple of hours, I’m trying my hardest to live life to the fullest. I’m making up for all lost time over the last few years where I was either in bed at home or in the hospital and just getting dressed was a huge achievement.
So what adventures do I have planned for the future?
Later this month Hubby and me will be celebrating our 25th anniversary together (15 of which we have been married) so we are hoping to get away for a few days without the kids or the dog! We have just about planned our summer holiday which this year is going to be a family road trip to Germany to see Adele in Munich and our friends in Stuttgart. We are car hunting for Big Fella as he will be learning to drive soon and my Nan has a very special birthday coming up. I’ve got tickets to see musicals, comedians and plays. And next week I’m getting my hair cut and coloured. Something so simple but for years I never knew if I would be well enough to make my appointments so it’s something I never take for granted any more.
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