I haven’t blogged for a long time with so much going on health wise and having to endure multiple extensive hospital admissions resulting in me struggling both mentally and physically. I’m currently in hospital again and decided to try to get back to blogging as I miss it and miss the interaction with friends, family and those who support me or are in similar situations to myself that I have via my blog. I decided that this first post back would be a summary of last year, but if the truth be told I don’t really know where to start with thinking about 2020!
January didn’t get off to the best start with me vomiting up my NJ tube which then needed to be replaced. However, things improved and memories were made with Ollie and I having a lovely spa trip.
Our breaks away continued and between hospital appointments, to celebrate our first anniversary in February, we managed to get away to Budapest. Travelling for the first time with my NJ tube was daunting, but Ollie was as supportive as ever and all went smoothly with remembering sufficient supplies and having the correct documentation to get extra fluids etc through airport security. I love going away but I find the added stress that being chronically ill and the implications that brings overwhelming.
Coming back from Budapest I had various surgeries and procedures ahead of me in addition to the usual clinic appointments. The first of these was the insertion of a new port-a-Cath. This was something I needed but was extremely nervous about after having numerous incidences of sepsis from these central lines in the past. The surgery was a success and the following week I was admitted to St. George’s Hospital for an MPFL reconstruction operation. My port was accessed ready to be used for the surgery and I was taken in the night before due to my complexities. The operation was cancelled, and this happened a total of three times due to there being no ICU bed for post op care (even before the pandemic hit). I still haven’t had this operation done and am now waiting for another pre-op assessment.
In March we managed to celebrate my Nan’s birthday and I was spoilt by Jeffrey for Mother’s Day before the pandemic hit and everyone’s worlds, including mine, were turned upside down. Lockdown was imposed and I was told to shield due to being clinically extremely vulnerable. My Mum, Dad and I stayed indoors and had to find ways to keep ourselves occupied. We did agility in the garden with Jeffrey and finished many puzzles to name just a few.
During lockdown my health began to deteriorate and I ended up being admitted to hospital with sepsis, which was when I last blogged. The admission was the toughest four months of my life; I had multiple surgeries done including the insertion of my PEGJ surgical feeding tube, I went into total intestinal failure requiring TPN and I was referred to the Intestinal Failure Unit at St. Mark’s hospital for an inpatient transfer as my case was totally out of the current hospitals remit. The care I received at the local hospital was appalling and I was so lucky that, due to being critical and to meet my care needs, despite there being no visiting, my Mum and my Mum only was allowed to stay as I was initially critical and then she was asked to stay by the ward to manage my care as they were understaffed and unable to meet my care needs. My Mum is my complete rock throughout everything and I’d never have survived this admission without her.
We waited months for the transfer to occur, and when it didn’t and a new consultant came on rotation, it was decided that I would go home on what minimal enteral feed I could tolerate as I just couldn’t cope any longer. However, time at home was short lived as, after 16 weeks in hospital and spending only 3 nights at home, I was bluelighted back in to hospital where I was confirmed to be septic once again. Fortunately this admission was shorter, and whilst it was a difficult 10 days I’m glad that it wasn’t any longer than that! I was absolutely gutted as it meant I missed my Mum’s 60th birthday and I was desperate to make it special for her. Once I was discharged home for a second time, I had 11 days at home before another 5 day admission for a Gastroparesis flare. To say I was pleased to be back home in my own bed again after the whole ordeal would be an understatement!
Back home I was extremely weak and still am not back to my baseline yet, but I was so grateful to be home with my family and Jeffrey, and to see Ollie again after so long. What I was able to do was minimal, but I was just so grateful for every little thing. We managed a day out at Paws in the Park in September which was lovely and I spent time with Ollie whenever we were able as it’d been so hard spending the admissions apart.
In October Ollie and I managed a weekend in Hythe which was wonderful. We took everything at our own pace, and to get some much craved sea air after spending so much time in hospital was amazing.
Ollie and I also had plans for my birthday at the beginning of November, but going into lockdown the day before they had to be cancelled. Instead, I was absolutely spoilt with gorgeous cards and presents, and rather than going to the spa as we were meant to, we brought lots of pampering bits and had the spa indoors!
On the 23rd November I received the call I’d been waiting for; my bed at St. Mark’s was ready and I had to go straight away to be admitted. I spent four weeks in there before being allowed home leave for Christmas for a week, and I’m back in there again now. With no visiting or carers it’s tough, but I’m in the right place to get the care I need.
I’m not sure how much longer I’ll be in here for; I’m waiting for surgery to separate my tubes but due to COVID that has been cancelled multiple times so I’m not sure if it’ll be done this admission. We are making changes to my pain relief and anti sickness medication to try to improve my quality of life and control my symptoms more effectively. For now, for various reasons, we’re holding off of TPN.
This year hasn’t been easy for anyone, and it’s one I’m definitely pleased to see the back of. Let’s see what 2021 will bring – Wishing everyone a happy, healthy new year.