Mindfulness and TTP

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 blood tests are all important.   When caught in time, TTP can be stopped in its tracks with infusions of medications, given as an outpatient.  A small price to pay for a life.

So, the thing is to fight those feelings that can take over and destroy our peace of mind.  Mindfulness is my shield.   My consultant arranged for me to have councilling, after both full episodes, and it really did help.  It was suggested I keep a journal.  I rushed out and bought a fabulous paper version,  a new pen, and sat down.  No.  That wasn't me at all.  But Facebook helped, just quick photos and a mention of something pleasant each day.  That's me.  And amazing family and friends who would give me a like or even a love, along with words of encouragement.  And still do.  It's difficult though to explain what really happens to you when faced with a sudden chronic illness.   Something changes.  I doubt any us are exactly the same as our Pre TTP identities.  But we can try.

I had been told on many occasions that I would need to find a new me. Well, no.  I didn't want a new me, I wanted the old one back.  And maybe I'm part of the way there,  years on.  Many of us find tiredness a huge obstacle.   Oh and Brain Fog, it's hard to get away from that one.  But, for me, I think the fog is down to anxiety and not a physical condition.   Others may disagree,  this is my story.

So back to mindfulness. There are terrible things happening in the world, and I so wish I could solve them.  I can't.  But I can look around me and find something good in most directions.  A flower, a smile, a kind word or even a break in the cloud. There are things to celebrate too.  Celebrate life!  I am alive, I am a survivor!  

I propose that this journal will be a positive take on what can be a devastating illness.  My blood levels, and that all important Adamts 13, are flying high.  Mindfulness rules.

There is a wonderful support network in the UK.  But TTP is so rare and we are spread over a wide area.  We meet online but rarely in person.  Real, up to date, info on TTP can be found at the TTP Support Network