Skip to main content

One year on

Today is a really significant day in my recovery. It was exactly a year ago when a friend sent me a picture of the kids on their scooters for scoot/cycle to school day and it broke my heart because I was in hospital and wasn't with them. Things in hospital had been really tough and it was kinda like the straw that broke the camels back. I remember being so down that day and feeling as though I had hit rock bottom (although sometimes I wonder how many rock bottoms there are for one person to have to hit in a lifetime!). I had no signal on the intestinal failure ward at St Marks so wasn't able to go online or message friends. I desperately wanted to get well enough and go home and be with Hubby and the kids; to take them to school and tuck them in at night and read bedtime stories but there didn't seen to be a light at the end of the tunnel. 

I remember what happened as if it were yesterday. I left the ward as I needed to get some air and I just couldn't be there any more, I felt like I had to get out. I ended up in the Costa they have at the hospital and I used their wifi to log into Facebook and see what was happening in the real world. 

And this is what I saw: 


And as I scrolled through my newsfeed I saw that all my friends had changed their profile picture to this:


So as I scrolled down all I saw was Don't give up time after time after time. And I realised that I wasn't in this alone. I had friends and family cheering me on, willing me to get better. And although I was in a dark place I knew that they were right. I couldn't give up. I had to keep fighting. 

And here I am, a year on and I'm still fighting. I'm home, yes. But I'm not better and never will be according to my doctors. So I have to adjust to a slower, simpler life without the rush and bustle and huge jobs list to get through everyday. But do you know what? It's not that bad. No, I can't work. I can't do a lot of things a used to be able to do. But I'm at home with Hubby and my kids which is where I so desperately wanted and needed to be. And today on scoot/cycle to school day my kids rode their bikes with me walking by their side. I never thought that I would be able to do that a year ago or even a few weeks ago. I've spent the day in bed recovering but it was worth it. 

It's amazing the difference a year can make. 

NB x


Comments

Popular posts from this blog

Light at the end of tunnel

I’m sat writing this blog post in St Marks, the specialist bowel hospital in London. So much has happened in the last few weeks; it’s all been a bit of a whirlwind. But I finally feel like there is some hope at the end of the tunnel. Let me tell you why.  At the beginning of June I was admitted yet again to QMC in Nottingham with huge amounts of pain, my bowels not working properly and just feeling generally unwell. I had only been home a couple of weeks since the admission in May but I had been feeling so rubbish most of my time had been spent in bed. I had tried everything I could to stay at home but the pain had become so bad I was barely able to stand or take a few steps on my own.  I had expected to maybe be in for a week or two to get stronger pain meds and get back on my feet but I ended up being in for almost a month. They put me on morphine injections and ketamine but then stopped them when my heart rate dropped to 30 beats per minute and my breathing to 7 breaths a minute. Th

The light at the end of the tunnel is a train

Last week was a busy and pretty crappy week for me health wise. I had to go and have blood tests done with the nutrition nurses and I had two hospital appointments; one with the gallbladder surgeon in Nottingham and the other with colorectal surgeon at St Marks. I was hoping to have at least one surgery date to write in the diary following these appointments but I came home empty handed on both occasions. Here’s what happened.  I began noticing over the last few weeks that I’ve started feeling really crappy. I’m feel lucky to have been at home for the last 6 months and I have been the most well I have been for years but it felt like things had shifted slightly recently but I couldn’t quite put my finger on it. But years of being sick means I know my body and I can tell when something isn’t right. I have been feeling permanently exhausted and having way more bad days than good. I’ve gone back to spending 2, 3 or more consecutive days in bed, unable to do anything but watch tv and sleep.

The wrong size line

I’m on the M1 heading back to Nottingham after a road trip to St Marks to get my line repaired. But this is me, and as usual it wasn’t a smooth ride. More like a bloody shit show. So what happened? Let me tell you… After being admitted to QMC in Nottingham on Sunday with a broken Hickman line I was taken down to Interventional Radiology on Monday afternoon to get my line repaired. Firstly, I couldn’t believe it was happening so quickly and secondly I didn’t want to get too excited because, well it’s me, and usually things don’t go according to plan. And sadly I right to rein in the excitement.  When the doctor came to consent me for the procedure it was for a replacement, not a repair. I assumed he had made a mistake so I told him I was there to get my line repaired and was definitely not there for a new one. He looked at me and said “I hate to be the bearer of bad news…” and that’s a sentence that never bodes well. He then went on to say that they didn’t have any repair kits and that