Porridge for Breakfast, The Ordinary Life of a TTP Survivor

Throughout Lockdown, my other half and myself took part in a walking challenge with End To End.  We walked from Lands End to John O'Groats,  virtually,  and it was a great way of getting us through a difficult time.  We rarely met other walkers and when we did all were respectful and passed at some distance.   We obeyed the rules and we raised money from very generous donars for TTP Network and hospitals that have treated me so well. At the beginning of this year I decided to take part in another challenge.   This time I chose a walk in an area I am never likely to visit in reality.   The North Pole!  My virtual walk started from Dawson City in the Yukon to Tuktoyaktuk.  Its 577 miles and so far I've covered 209 miles.  I thought the scenery would be different,  haha, it certainly is.  I'm so pleased I can walk locally and log my miles virtually 😁.  I'm behind with the challenge and to get my steps in!   These are just a few of the views from my local walks, and one fr

I do believe that waiting for a phone call is one of the biggest causes of anxiety that there can be.  I never complain about late calls, especially from busy people.  It simply means that the people ahead of me in the queue may have needed the extra time.  And on occasions that person is me taking longer than my allotted time. Despite my denials of anxiety now though, I admit that waiting for calls from doctors is tough.  Today is my 6 monthly telephone check with my the Specialist Centre.  I have a list of questions, written out on paper because I easily forget what I want to ask.  I’m not expecting tough news, I know my Adamts13 level is high.  I had my blood tested just a few weeks ago, it is sent to the Specialist Centre from a more local hospital. To keep myself busy I’m defrosting the freezer, just a small one, not a massive job.  I’m wearing my new dungarees and my best undies 😅!   It’s important to feel comfy but good about yourself too!   I know I’ll jump when the phone ring

July has been busy!  What with camping in the rain, so much walking, gardening and preparations for another branch of the family visiting,  I was fairly exhausted before they even arrived.   May have to rethink this and have better plans in place next time. I've read that others find they need a rest day occasionally and today is mine!  I make it a rule never to stay in bed unless I'm that ill I am confined to it.  Being confined to bed is something that can't be helped, but staying in bed all day is a waste of a day.  A rest day can be relaxing too.  Today we plan to potter, stretch our legs and wander down to the local park to listen to live music.  And eat leftovers for dinner 😎. In the meantime here is my mindfulness pic for today 😊   Our little wildlife pond, recreated by another branch of the family,  is really settling in 😊❤️  The duck weed arrived mysteriously, but probably on the feet of visiting wildlife. 

We're just home from a short, wet, break in Cornwall.   It does feel like it rains whenever we go that way 😁.  Not to be deterred though,  we camped for 4 nights, walked 1000s of steps each day and made the best of it.  We had thought we were safe in July, before schools break up but well into summer 😀 We visited Mevagissey,  Lanhydrock, St Austell, and Charlestown and Heligan.  One of the main reasons we chose this area of Cornwall was to visit The Lost Gardens of Heligan.   They are most definitely found and are beautiful!  I love the Jungle, it's amazing in its steep, sheltered valley.  There are paths to the side as not all of the steep routes are accessible to everyone.  Still, because of the nature of it, its unique and needs to be seen if possible from the depths.  It was my favourite part of the Garden.  Looking down into the Jungle at Heligan 😊 We packed a lot into our short break, I'm amazed myself.   So many photos I can't possibly post them all.  It's

I've said before that I won't go too deeply into my own TTP treatment experience.  Anyone reading this who has experienced TTP will already know what it's like, and I don't believe that anyone who hasn't experienced it for themselves can be expected to understand.   10 years ago I was transfered to a main TTP treatment hospital,  now called a Specialist Centre.  At the time I didn't know what TTP was or how it was treated.   I felt like a lab rat.  It seemed as if everything was being thrown at me.  And maybe it was.  There were days of Plasmapheresis and steroids before being given a new drug at the time, Retuximab.  I believe it was ground breaking and not available to everyone. I remember Plasmaphereis Nurses coming daily to my bedside and then as I improved being transferred daily to the Blood Donation Centre for plasmaphereis.  There was a heat wave and the air conditioning just didn't cope, patients' families were bringing in fans, when they could

It's been a real mindfulness week 😁.  We've had family staying with us and it was just like being on holiday ourselves.  So lucky to live where we do, we are surrounded by countryside and seaside.   Which ever direction you go there is something good to see.   The weather wasn't so wonderful, our time on the beach was windswept and ended with sand in an eye, bringing sand castles to an abrupt finish, Kayaking didn't happen at all because of strong wind.   However, once at home again we had tea in the Bongo on our driveway and all was well again. We walked to town, visited the harbour,  rode to Blue Anchor on a steam train and had lunch at the Driftwood Cafe.  We visited Tropiaquaria, expanded since we last went many years ago but had the same familiar feel.  We baked cakes and ate Fish and Chips in the garden. It's all been a little like reliving a little bit of the past. Yesterday evening, after our visitors had left, we walked and called in for a drink at our loc