Porridge for Breakfast, The Ordinary Life of a TTP Survivor

Mistletoe growing in an apple tree. Goodness,  what a day!  I woke at 4am and just couldn't get back to sleep,  I had to get up, have a hot drink, and then try to sleep again.  Eventually I did dose off, only to be disturbed by odd dreams.    Today I was collecting my little Mazda Bongo from the Bongo specialist where it had the major timing belt change.  Not a small job, but completed in time to prevent more serious damage to the engine.   The only problem for me was the distance from home and not being used to driving alone anymore.   My husband had driven me there but having two vehicles meant two drivers to bring them home.  And the anxiety had kept me awake in the night.   The garage, where the great Royston Heath is based, is close to Glastonbury and with 1000s of people turning up for the festival our own timing was a bit out.  So glad to be home again and have a cup of tea in front of me ☕️. T...

So I know I drone on about TTP but some of us patients are trying to highlight and help to educate about the disorder.  It is not ITP.  That may be blood related,  but it's not the same disorder.  ITP and TTP are different.   TTP is even rarer. I had my six weekly phone call today and am relieved to report my TTP remains in remission 😊.  Always good news 😊  I may be very slightly anaemic and have been prescribed some iron, but otherwise all remains at my normal. So we press on until the next round of tests.  It's continuing,  probably for the rest of my life, unless by some miracle a cure is found.  But at least there is treatment!  Never forget the treatment.   TTP was first recognised 99 years ago, and back then the outcomes weren't good.  Research has come a long way, apparently in the last 30 years things have really moved on.  This link will take you to  TTP Treatments ❤️ And so back ...

June is usually a green month in the garden.  Our spring blossom is over and we’re waiting for the summertime flowers to take off.  I’m never really happy with the garden in June, but know how lucky I am to have it! So, here are some of the highlights, taken before any real damage is done with the weather.  We try not to water, I believe the plant roots can grow down if watering is held back.  Constant watering is a no for us.  We have water butts for containers and hanging baskets, tomatoes in tubs, but we don’t use tap water, especially on the grass and beds.  We aim to fill the garden with drought resistant plants eventually. We had family to stay this month and they were amazing with the help given to our wildlife pond project.  The previous liner, approx 25 years old, had sprung a leak and needed to be replaced.  They re lined it with enthusiasm and I’m so pleased with it.  At one point it was a paddling pool 😃.  Thank you!  I...

Yesterday we decided to have a day out.  The weather is beautiful here at the moment, they say we’re having a heat wave but living near the coast means there usually a breeze, it’s pleasant.  Dry, but that’s another issue of course. We took the Exmoor Coaster from Minehead towards Lynmouth alighting at the Blue Ball Inn, Countisbury.  We knew the South West Coast Path was just behind the church and crossed over and up through the church yard to find it.  It wasn’t far, an easy search. Once on the coast path, the sign posts are clear. There was a refreshing breeze despite the heatwave and I made sure I was covered, protected and carrying water. The views along this stretch of coast are stunning. Always important to look back occasionally and see how far you’ve come. Fox Gloves, they refuse to grow in my garden but happily multiply in the wild. I just love old benches, my family find it funny 😁  At o...