I have tried hard this week to get my head out of bowel transplant mode and in to the space reserved for “rest of my life.” I just figured that with my head still spinning with so many things it was time for a mental clear out, a kind of spring clean of the mind. As I write this I have visions of a mini me with duster and polish sitting inside my head polishing lots of bits until they are all shiny. Just hope mini me doesn’t drop anything, that is if there is anything to actually drop.
Growing up with Crohn’s Disease there was always a degree of tinkering with my ongoing treatment however when it came to my bowel transplant my biggest concerns have been the major issues that need continual monitoring. Now though I am back in that tinkering phase which looking at the big picture is great but it is the daily issues that make the difference between really getting on with life and constantly remembering you have issues that need to be addressed. Right now aside from the nausea my bacterial overgrowth issues have come back so it is a case of back on the antibiotics and then an increased dosage of my probiotics that I bolus in through the mic key button in my stomach.
My biggest frustration though has been a reoccurrence of joint pains. To be honest I initially put it down to old age, hey I am 43 and going grey so it was a logical conclusion I mean even people with very similar physiques to me such as Tom Cruise, George Clooney et al must have grey flecks in their hair and the odd aching limb. My problem has been that the pain has spread to my lower back, finger joints and bizarrely the sole of my right foot. Prior to transplant I had a bone density scan which showed that I was more susceptible to joint problems so I have had bloods re done and a vitamin D injection before deciding what to do next. Boy did the injection hurt though, so thick and gloopy my arm is still sore – stop moaning I hear you shout! I think the answer is very simple, go live in a warmer climate. I wish I did but I don’t so again I hear one part of the brain shouting “stop moaning.” Actually from the age of 14 my surgeons have said you would benefit from being in a warm climate but did I listen – not, do I wish I did? Of course…
Exploring the reserved area marked rest of my life has seen this week being huge fun. I have actually got lots to tell you. You know that my biggest passion is ensuring that the patient voice is truly heard and that we are not simply a tick box on a marketing slide called “patient centeredness.” Well this week saw our Campaign For Better Hospital Food really take off. A report came out stating that over £55 million had been spent in voluntary initiatives all of which have failed to improve the standard of hospital food served to patients. In fact it is at an all time low. As the news hit the media so I received a call from the BBC to do an interview for the breakfast news slot and I had the pleasure of the film crew at my home on Wednesday. I assumed that was the end of it until on Thursday early evening I received a call from Sky news to go to their studios and be live on air on Friday morning. If I am honest I was as nervous as anything but it was good fun and I think it went well. After doing a couple more live radio interviews I sat back on Friday night really proud that I had been able to make a positive contribution to change. How can omelettes made from powdered egg that are cooked, frozen and then reheated be acceptable to serve patients? Or soup fortified with powdered milk and no fresh vegetables. Oh I could rant for ever but you get my drift. I will be putting up links to this media soon for you all to laugh at
That was a great ending to the week but on Wednesday night I did encounter my first “in your face” case of ignorance from a healthcare professional to a patient. I am incredibly privileged to be the patient lead on #nhssm which hosts a weekly tweetchat on various topical issues within NHS. On talking about how social media can be a great learning tool I made reference to the fact that patient blogs are a great way for health professionals to learn things. I was then told that I should go back to using social media to “to follow celebrities.” Oh such ignorance. Once I calmed down and then realised that none of my tweets were then being responded to by pretty much all the health care professionals on that specific chat it just made me realise how far patients still have to go to truly be treated on an equal footing. By hey it has just made me even more determined to have our voice heard.
I mentioned this to one of the most highly qualified e-patients in the world Regina Holliday. If you ever get to hear her speak you are in for a real treat. Her response to my frustration was to say “suffering is a great teacher and many others are unschooled….”
The day after this chat I was back at Oxford going through with my surgeon all the things I mentioned at the start of this post. In his room he has a poster on the wall that I have seen many times but never taken any real notice of until this time. This is that poster
To me this sums everything about my journey so far and everything about the rest of my journey.
Till next time