The only thing about lockdown I’m really struggling with is not being able to spend time with the people I love. I hate that I’m missing out on seeing both my nieces when I’ve already spent months apart from them in hospital since October 💔
I’m doing my best to remind myself that every day we’re all staying safe at home is one day closer to us getting to spend the rest of our lives seeing each other anytime we want. It just feels strange to not be having the girls stay over and the house to be so quiet... even my dog is wondering what’s going on and when we get to chat to them, she gets so excited thinking that they’re actually coming over. Being at home feels like a total luxury in every other way because I’m able to really put the time and effort into getting stronger and it’s doing wonders for my immune system because I haven’t caught any of the usual sniffles or coughs I pick up all the time but it’s a struggle to fill up the days when a lot of the stuff I have to do requires me to not be moving about.
I’ve spent the last month trialling a new ostomy care routine and that is going amazingly as I’ve finally got the short bowel syndrome/ high output factored in and I’ve got these huge overnight bags that connect to my original stoma bag and mean I’m not up every hour to go to the bathroom! I’ve actually spent 24 hours hooked up with one to measure just how much fluid I’m losing a day which should be around 1200ml or less but I reached that by 4pm and made it all the way to almost 2 litres by midnight. It was such a boring experiment but it’ll be good to measure it again once I go back on treatment to see if that decreases over time because I’ve never been on immunosuppressants since I got my Ileostomy 5 years ago. I’ve got hopes that it will slow things down as the inflammation goes down and the damaged parts have time to heal. If there’s ever a time to spend a day in bed and on the couch it’s better to do it now than when we can go outside!
I’m really lucky to have had my surgeries and inpatient time when I did so I can stay safe at home right now so I’m thinking about that being a positive because it’s so important we do our bit to contain the virus.