TTP and Self Doubt

I wonder if other TTP survivors are bothered by self doubt.  It comes and goes with me.  At present, I’m bothered.

When we’re young and fit, we fully expect to be that way for the considerable future.  When lightning strikes, in my case TTP, it can take away that confidence.  In other ways, it gives something too.  For me, and others I think, it gives a desire to shout from the rooftops, ‘I have TTP!’

Thankfully I have amazing Haematologists.  They saved my life and I trust them completely.  However, I no longer trust myself.  My body simply won't always do what I want it to do.  I’ve been told there is nothing I can do alone, or not do, to prevent my Adamts13 level falling, I am totally dependent on monitoring and treatment.  As I grow older, I find that becomes more scary.

It’s one of the reasons that I try so hard to control other elements of my life.  I can control my diet, to a certain extent I can control my exercise and my sleep.  However, as my body ages, I may not have that under my control either.  Already exercise is becoming more difficult because of the AF.  AF causes fatique, on top of the TTP, plus breathlessness, palpations, dizziness and more.   I know the anemia is most probably also contributing to this.  When I was younger, I was told that growing old was not easy.  Now I know exactly what they meant!  Onwards and upwards!

When we have family staying, friends visiting, I seem to get through the days far more easily than when we’re alone.  I don’t have so much time to sit and think.  So how much of my self doubt is due to over thinking.  If I could climb mountains I wouldn’t have so much time to think.  At the moment I can’t climb mountains, I have to rest more, and that means I have time to think.  I have to find other ways to occupy my mind.  That’s my excuse for playing Candy Crush and a multitude of word games.  I want to be able to do the things I  loved doing.  I want to be treated before I’m too old!  It's very frustrating. 

I bumped into someone this morning that I hadn’t seen for a while.  She told me how unwell she had been and indeed still is.  I suppressed the urge to tell her how well she looked.  She asked if I was over my cancer.  Oh dear!   I explained that TTP is not cancer but autoimmune.  I’m back to trying to explain what TTP is.  I’ve gone full circle.  I’m repeating myself.  Early diagnosis saves lives.

The TTP Network is an amazing organisation promoting TTP education.  If you’ve come across my blog wondering what TTP is, then please visit the site.   If you’re looking for support because you or someone close has TTP then visit the support page, it really does help to know you’re not alone.  If you’ve come across this way because you need to know that life goes on, I hope I can prove it does. If you find you have self doubt then you’re not alone.  We should believe in ourselves more.

TTP is thankfully extremely rare.  A full blown episode of TTP requires emergency treatment.  A falling Adamts 13 needs very careful monitoring to prevent a full blown episode.  There is some control over that.  AF is common.  There is treatment and medication to help.  There are awaiting lists, there are conditions, I believe there are admin errors.  I have no control.  It’s driving me just a little bit crazy.  

My good news is that my Murray passed her MOT without too much worry.  A couple of advisories to get sorted.  I need to use her more.

The world is still turning.  And if you're worried, watch some episodes of Have I Got News For You.  They're guaranteed to put life into perspective and make you laugh again.   It worked for me 😃. 

❤️