As I sit here watching the minutes slowly pass on the clock above the TV, I try to remind myself that I am lucky to be alive and well and have the opportunity to get bored.
You might think I am being dramatic.
However, during my recent 3-month hospital stay, I was in fact, pretty close to death a couple of times. In July I ended up in there for 2 days as I was so anemic my hemoglobin levels went down to 43 (they are meant to be 115). After some blood transfusions, my gastro consultant came around and told me he thought I was coeliac, and that was causing the issue.
I was discharged armed with the new knowledge that gluten made me very poorly and I would now get better if I avoided it.
Well, I didn’t.
Fast-forward to October. For around 8 weeks I’d been getting stomach pain, which started when I ate but then progressed to being all of the time. I lost 2.5 stone in a matter of weeks. The pain was agony. People must read this and think “it can’t have been that bad if you left it that long”. Believe me, it was. Physically screaming bad. Clinging to the radiator next to my bed bad. 999, in their infinite wisdom, decided, on a Sunday I finally relented about getting medical assistance, decided I wasn’t unwell enough for an ambulance. When I got to A&E, I was in such a state, they took me around to the resuscitation suite.
All in all, my bowel was blocked, I was so malnourished I was deficient in pretty much everything, my protein was leaking back out of my cells, and my body had used the fat in-between my duodenum and two big arteries (my Aorta and SMA artery), meaning they were essentially strangling it, adding to the pain of eating, a very rare condition called SMA Syndrome. Initially, to give me bowel rest, I had to have a PICC line and they fed me straight to my artery. I was diagnosed (correctly this time, myself and those close to me believe from my symptoms), with an IBD.
At one point, they put me on nil by mouth for so long that I fainted, and my potassium levels had become so low, I nearly died (anything below 2.5mmols is critical, mine was 1.7mmols). For that particular week, I got rushed into the acute medical unit for more specialist care. The ward before that overdosed me on morphine, and I lost 3 days of my life. Christmas, Boxing Day, and New Year were spent in the hospital, with me being on a liquid diet and my one wish being able to keep down some soup. It was a lot to go through, but the only way to survive is not thinking about it.
During a long hospital stay, one thought keeps you going; I’ll be home soon.
“Home” has a magical connection to the word “better”. We all do it. “When you get home you’ll be much better” etc etc. I was saying it myself to some of the ladies I made friends with on my ward. When I was ready to be discharged, eating solids and everything, I carried this thought with me.
“When you get home, you’ll feel better”.
Although medically fit, the Doctor wanted me to stay an extra couple of days to see my consultant, who wasn’t in. My weight had started to worry me, so I asked to be discharged so that I could be at home and eat more often. My actual words to him were “you lot don’t feed me enough here, to be honest”.
Walking through my door, seeing my sofa, seeing my cats, sleeping in my bed, and being able to have scrambled eggs was like a dream. I fully expected to start eating normally, put some weight on, and have more energy. But the SMA Syndrome was still causing pain (an absolute cosmic joke about my life is, the only way to cure it is to put on weight and build the fat back up). Some days, it was bearable. On other days it was agony. Because I’d been on such a restrictive diet, sometimes my body just point blank hates some food, and wouldn’t process it.
Every single time I was cracking on well, I had a setback.
I was prescribed daily blood thinning injections, for the SMA syndrome. On a Monday night I went to bed at 10 pm with a slight nosebleed, and 6 hours later we had the paramedics out. It didn’t stop. Despite them being a treatment for the thing currently stopping me from eating, I had to have a few days off from taking the blood thinners. Thus returned the pain for a few days.
At the time of writing, I have maintained my weight, but haven’t gained any in the entire month since the hospital. I have been chasing and chasing, I’m yet to hear about the immunosuppressants I am supposed to be starting for Crohn’s. It’s frustrating, but this whole situation has given me a life lesson; stop being impatient.
When recovering physically and mentally from something like this, it is unlikely for it to ever be straightforward, or linear, just a clear run from hospital to well. Being a naturally optimistic person makes it hard for me to take on that this process is so up and down. I would imagine this feels the same for anyone who has gone through something similar and had to recover from something like this. Changing your mindset is the best way to cope.
No, I am not going to be going on nights out any time soon. It’s very unlikely I’ll be able to go into my office at work, rather than working from home for the next few weeks. Things I enjoy doing like cooking are going to be more challenging for a long time.
But one day, I WILL be better.
And so will any of you guys reading this struggling with a recovery of your own.
Love to know your thoughts guys?