Porridge for Breakfast, The Ordinary Life of a TTP Survivor

Today is Rare Disease Day, highlighting the need for research and aiding speedy, accurate, diagnosis to save lives. I had thought to share my journey through diagnosis and treatment but I don’t think that’s needed, others have told their stories on blogs and websites.  It’s enough to say it was harrowing, treatment was long and at times I felt like a lab rat with comments made by blood donation managers about how much plasma was being given.  I was scared they would stop treatment. I was scared I would die.  But I survived, thanks to an amazing TTP Team of haematologists and plasma exchange nurses.   So far my blood has slipped 4 times, two interventions with Retuximab and one full relapse with 3 weeks on intensive care.   Many TTP patients come close to death and it is considered a medical emergency.    So it’s important to fight.  Not just for myself and fellow TTP patients but for those who will follow us.  Long live the TTP patients! 9 ht...

I think it’s fair to say that a lot of things you read online are either inaccurate or irrelevant.  When I was diagnosed with TTP in 2013 I was advised not to randomly search for information. Much of the information can be out of date.  Much of it is from a professional point of view and includes phrases about mortality rates and shortened life spans.  Well patients don’t need that when they are under the effects of high dose steroids and suffering from PTDS.   We need positive stories, and I hope mine is just that. That first treatment period, following diagnosis is so scary.  You need someone to hold your hand and tell you how well you’re doing.   Of course, it’s hard for your family and friends too.  My husband says that being called into a side room and told the worst things was traumatic too.  And these things are not easy for others to just put aside. So remember to look forward as well as up.  The TTP Network is the only place I have f...

10 years ago I would have had a panic attack about TTP if I had felt even slightly unwell.  Going to a new place, an awkward situation,  meeting someone I wasn't sure would understand.   Anything new really and out of my comfort zone would cause great anxiety.  After my first episode,  when my health was fragile but settling down I was passed back from the main treatment hospital to one a little nearer to home for monitoring.  On my first appointment at the Beacon Centre, my husband mentioned that we had trouble parking.  We had parked in a space marked for radiotherapy patients and were told to move.  Left alone in a strange place I had a panic attack.  I couldn't breathe,  think, every muscle shook, my head swam.  I must have been a real mess.  I remember that I had been given a CD to play, and with earphones in I listened to the sounds of the ocean.  It helped, but what really calmed me was the presence...

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 ...

Last night, or rather early this morning, I've had a series of those short, unconnected, dreamlets.  I saw a meteor splash into the sea and then bounce out again into a garden. Not our garden,  I'm rarely at home in my dreams.  Next, I was staying in a hotel, the night before a business meeting.   I was late, it wasn't my room although I was alone. I couldn't turn the TV off and I couldn't waste electricity by leaving it on.  Other dreams have faded away, but oh am I tired.  It's a day to find something to do to keep myself busy.  I know I'll feel better when I'm up and about.   Mindfulness!  It's what keeps me going. 

Early this morning I experienced some kind of sleep disturbance.  It's disconcerting when you're partly awake, partly asleep, and you can't move or speak, it can be frightening.  Apparently harmless, I read about it and am reassured.  I've had it before but can't remember when, so this time I'm documenting it.   Waking, feeling unsettled, can put me out of sync but today I've been busy, busy and haven't had time to think. Sleep Paralysis

Often, when out walking on the moor, we spend most of our time looking at our feet.  Roots, stones, leaves,  all can be trip hazards, waiting to catch us unawares.  Sometimes it's important to stop, to look up, to breathe.  Even at a service station on the M3, the view up can make you smile.  Just ignore the road noise and Burger King extractor fan 😉.  Enjoy the moment!

For me, mindfulness is all important.   It's easy to slip into depression with TTP, and on top of the anxiety, even PTSD, you have to swim or wade through the worst times.  Treatment for a full blown episode includes unimaginable amounts of plasma exchange, which in turn means hours connected to a machine - Plasmapheresis.  Then there are the dreaded steroids!  Starting at a high dosage, gradually weaned off of them.  Other medicines are involved, I'm not going into everything, it's simply mind-blowing and hopefully will change as research progresses.  But it can leave TTP patients with great anxiety and fears of a repeat episode.   At diagnosis I was convinced I was a lab rat.  Over the years, my knowledge has grown and I have learnt how to fight the anxiety, easier when your blood levels are stable, not so easy when they begin to slide.  My TTP consultant, always so calm and reassuring, has helped me beyond words.  That's why...

 Last night I dreamt of Christmas.   Or rather Christmas preparations that weren't going to plan. Christmas lights that wouldn't work, that couldn't be found.  What does that mean?  For me, I think, it's the realisation that I have no control, and I've always been a control freak.  It irritates my family, and now my lack of control irritates me. I have a chronic blood disorder.   It shouldn't be debilitating,  but it creeps or rather slips from under the feet, sending me sliding over a cliff if I walk to close to the edge.  So once you have a diagnosis,  regular blood tests are given to track how stable it is, and it's projectory when it starts to wander. Thanks goodness for our NHS, I don't know where I'd be without it.  It's scary for people who are so dependent on it, reading about how it is failing.  For many it's a life saver, for many it's a way of life, and I'll never forget how grateful I am to be alive because of ...