Rare Disease Blogs are Rarer Than Hen’s Teeth and Driving Without Anxiety

It seems that TTP is not the only rare phenomenon.  TTP blogs, written by ordinary people with TTP are even rarer.

I have searched for TTP blogs written by patients, and not medical professionals or researchers.  I have found blogs with posts by patients, sharing their stories.  I have not found blogs where patients share their ordinary lives.  Maybe another one exists somewhere, but I haven’t found it.

I want this blog to promote positivity.  I’m not in constant physical pain, though I know some chronic conditions do cause real every day problems.  My feeling is that TTP causes anxiety and that can be quite severe.  Working in a stressful situation can be impossible.  I found I couldn’t cope with any stress, whether it was being asked to tackle something I found challenging or facing another human being that showed me even the slightest lack of understanding or respect.  I simply couldn’t deal with it.  Even reading a set of instructions was difficult, the words would fly around the page and make a different, often opposite, meaning.    I failed all but the simplest tasks and it caused others more stress in turn.  I left all my positions voluntarily, perhaps a mistake financially.

I had applied for PIP but had been turned down because I didn’t fit into the categories.  It’s frustrating and I’m lucky that my husband is so understanding.

For anyone who finds life challenging, I would say take things a day at a time.  Try to do just a little bit more, week by week.   Eventually you will get there.  You might fight against a new life, I know I did, but I have had to make changes.  

Driving was a huge challenge for me.  After each full blown episode I didn’t drive for months.  Although, eventually, I was medically fit to drive, emotionally I was still a mess.   A counsellor told me to just sit behind the steering wheel at first and only turn the engine on when I felt comfortable being there. It doesn’t have to be the same day.  Take a cup of tea with you.  When you are ready, start that engine, but you don’t have to go anywhere, just sit there and listen to the sound and feel of the vehicle.  When you’re ready put the vehicle in gear, again it might not be the same day.  Only when you’re totally comfortable, take a short drive around the block.  There is no hurry, tomorrow is another day, don’t be pressured by other people.  

And until you’re ready, don’t drive.  

Bake cakes 😊❤️

Mary Berry’s Bundt Tin Lemon Drizzle Cake.