Everyone loves a good vlog, especially those which allow you a glimpse into how others live. But how many of us dare pick up the camera and film our private lives for all the world to see?
The past few weeks have all been about my wonky health as Mrs Wifey and I have driven three hours a day, twice a week to hospital for IV fluids. At the end of June my entire digestive system shutdown, and while life with a feeding tube was pretty normal for us, having discussions with doctors about the possibility of things getting much worse scared us quite a bit.
I have gastroparesis, a condition which causes the stomach to become paralysed. I’m fed via a tube into my small intestine and I’m connected to two feeding pumps 24/7. I also have intestinal dysmotility which means even with my feeding tube I cannot get enough nutrition into my body so I’ve always needed both enteral feeding (fed via a tube) and oral intake (eating food by mouth). When my stomach finally failed a few weeks ago we realised just how important that oral intake had been and we now faced our biggest medical crisis.
Doctors confirmed that my entire digestive system had stopped and we could be facing the possibility of TPN (feeding nutrients directly into the bloodstream via a tube into the heart) if my small intestine also failed. Needless to say, a few weeks later our fears were realised when I woke to discover I could barely tolerate eating via my feeding tube. I began twice-weekly IV fluid infusions at hospital as I became severely dehydrated and when my calorie intake via my tube fell to just 200kcals over 24 hours, we started to accept that things were not getting better.
Thankfully a new feed which is completely broken down into it’s basic components was tried and so far I’m tolerating it. I’ve managed to get my calorie intake to a huge 500kcals (ok, not huge but right now it’s a victory) and I will be getting a port-a-cath/central line placed to deliver fluids directly into my bloodstream long term.
During all of this we have tried hard to remain positive and enjoy life the best we can, but even the most optimistic person has their limits. When we found ourselves crying most days, feeling utterly fed up and defeated, we sat down and discussed how we could find some good in all of this. It was during this time I introduced Mrs Wifey to The Frey Life, the daily vlog of a young couple living with cystic fibrosis. We watched Mary and Peter battle through difficult hospital admissions and every-day life while I sat administering my many medications and stabbing myself with needles. We laughed with the Freys as they found ways to entertain themselves during long hospital days in the same way we do, and we cried with Mary when she confessed to finding it too hard some days – a feeling I know all to well. Mrs Wifey had tears in her eyes as she told me it was incredibly comforting to know that we aren’t the only young married couple in the world living with the complexities and strain of serious medical issues. We both found it encouraging to know that we are not the only ones who sit and talk about difficult medical decisions and the ‘What ifs?‘ while snuggling up in bed.
It was then we realised how we could turn our own medical journey into something positive. We recorded our first weekly vlog to coincide with Gastroparesis Awareness Week, a campaign ran by GIFT (Gastroparesis and Intestinal Failure Trust), a charity I work with supporting patients with the condition. We had so much fun we continued recording the following week and our Rural Teacake Youtube channel was born.
Recording and sharing our day-to-day life has turned the very difficult days into something more positive. It has relived the boredom of lying in a hospital bed for six hours while I receive my IVs and it has encouraged us to think about more than the current crisis we are wading through. It also means we have our own memories to look back on and watch in the future. When things get really tough we can rewatch our earlier vlogs and remind ourselves we survived this crisis, therefore we can survive the next. Mrs Wifey will also have many recordings of our time together if I am no longer here.
We aim to offer weekly vlogs of our day-to-day life with complex medical conditions in the hope that we can encourage others out there living with similar battles. We also hope that our vlogs will raise awareness, not only of the conditions I live with, but of how life is (slightly) different for married couples when chronic and serious health issues are a big part of the relationship.
I hope you will join us by subscribing to our Youtube Channel and sharing our vlogs with anyone you think may enjoy our story. You can also watch our vlogs directly on this site by visiting the Vlog page, which will be updated every week.
If you have a vlog and would like to share it with us, please comment below.