Skip to main content

Porridge For Breakfast

Someone asked me why I have changed the name of my blog and to me the answer is clear.  It’s my blog, and I want it to reflect how I live my life.  So it might be boring, repetitive, but it’s an attempt to remain as healthy as I can.  It’s innocuous.  

TTP is a condition that can dominate your life.  Blood tests should be regular, and thankfully in England they do seem to be that way.  My blood levels have slipped four times in ten years.  That’s potentially four emergencies, although following diagnosis, with regular blood tests the condition is usually caught in the safety zone.

Just after diagnosis, I was told that the slips would be like walking down a hill and someone would catch me before I got the bottom.  In autumn 2019 I dived instead of slipping and fell close to the edge.  It took away my control, I was ICU for three weeks.  (I still wonder if Covid was around earlier than claimed but there’s no proof of that).  I needed to get the control back.  In 2022 I began to slip again, but thankfully someone was there to catch me.   Back in control.  I aim to stay there.

Today I have a Cardiology appointment with a view to trying Cardioversion for a second time.   I don’t think TTP has caused the Atrial Fibrillation, there’s possibly a family connection there but it’s annoying and is another splinter in my armour.  But still, there are so many people with so much more to worry about.  We’re all ants really.   Thankfully I’m an ant born in a country where I at least have a chance.

So anyway, I changed the name of my blog to Porridge for Breakfast because it represents my life.   A steady, healthy routine, to maintain my control over my life for as long as I can.




Comments

Popular posts from this blog

10th Dec 2024, Trees

There's something about trees that is ultra calming.  Just looking them, but walking through them is just amazing.   They are timeless.   When family come to stay we always walk in the woods.  It's something everyone should do, I recommend it for exercise and wellbeing. At this time of year, many people are thinking about trees.  Our Christmas Tree has been decorated since 2nd Dec, and it certainly helps brighten our home during this darkest month when the daylight is at its shortage.  Our tree is artificial, we've had it for years.  It's carefully packed away each January and reassembled at the beginning of December.  It's decorated with ornaments collected over the years, gifts from friends and family, near and afar, and souvenirs from our holidays  We love our tree 😊. Trees come in all sizes 😊 Another favourite tree in our garden is our Acer.  It's beautiful all through the year, especially autumn, ...

29th December 2024, New Year Approaches

  I've been thinking about my blog.  I began to journal as a way forward through the fog of PTDS and I think I've found my way.  I can find the daily mindfulness more easily than when I started.  I'm not really sure if anyone reads my words.  They probably don't mean anything to anyone else and I don't know if they are read or not.  Statistics tells me I've had page views from around the world,  but it could just be automated bots scanning the words.  More recently,  I've come to suspect it is.  That's OK, the blog is mine and it's done it job. I live my life calmly.  I try to be a good person.  I'm ordinary.  I'm also proud of coming this far.  From a quivering wreck of post treatment and TTP diagnosis,  I'm happy.  I've lost many people along the way, family, friends, colleagues,  neighbours, many younger than me, for reasons other than TTP.  I do wonder sometimes why I survived and they didn't....

31st Jan 2025, An Adamts13, Rare Disease, Blip

As a way to make me eat the words in my last post, my Adamts13 took a bounce.  Either over Christmas,  or New Year,  I picked up a nasty virus that left me with feeling shattered and with a cough.   I was due a routine blood test and it showed my Adamts13 had fallen from above 100 to 23.  I was called in for an emergency retest, and an appointment for Retuximab on standby.  Thankfully it had risen to 84, without intervention.  I'm proud of myself for staying as calm as I did,  even though I did shed a tear when I put the phone down.  A week later, my Adamts13 is back to above 100. I had read that many people have an occasional bounce, and as I had had the virus, that seems exactly what this was.  I'm grateful to the team for their prompt action, and their reassurance.   I did feel safe in the hands.  Goodness,  I'm getting an old hand at this.  Several years ago I would have been panicking.  Today we've...