Waiting Games and Therapies

Easter has passed in a blaze of coughs and colds.  We've had the best time we could but nearly all of us had something.  We spent time on the beach and the parks, getting some fresh air and gentle exercise,  napping in the afternoon.   Our family went home earlier than planned.   I honestly think our weather doesn't help, some sunshine is much needed. 

I've had a cough for weeks,  if not longer, and I knew it was time to ask for help.   My Adamts13 was checked in March and was 103, amazing,  but it needs to remain there.  Any attack on my immune system causes my TTP concerns to rear their ugly heads and I've waited long enough.  It's time to get this sorted.  Fingers crossed my April Adamts13 will have remained unchanged.   April will be a month of waiting and symptom checking.

Our local medical centre has a strange booking system for appointments.   If you want an appointment for the same day, you have to phone at 8.30am, and wait.  And wait!   It's not the receptionists fault, I've worked in reception and I know it can be stressful.  If you don't get through to make an appointment for the same day, then you can wait a week or more for something routine.  You do wonder if this is the best system for patients and staff.  Eventually I did speak to a very kind person who made me an appointment for the sit and wait session in the afternoon.   I remember when I was a child we didn't need appointments to sit and wait, we just turned up and sat and waited.   At this session,  the first name to be called hadn't turned up.  There's a wasted appointment to begin with.

The initial outcome is that I have antibiotics,  because I've had the cough for a while and because I've been immune suppressed.  My long suffering other half drove me on a 50 mile round trip for a chest xray because our local xray department has a two week waiting list.  Plus I've had the delight of providing samples for microbiology.  Reports can take approximately two weeks to come through.  I'm grateful to the PCP for their concern and diligence.   They really were very thorough, and agreed that something isn't right.

I'm fortunate enough to live in one of the most beautiful parts of England.  We really are surrounded by moor and shore.  Many people miss it because they drive right by on their way to Cornwall.  We're lucky it's relatively unspoilt and off the beaten track.   However,  there seems to be a problem attracting professional people to fill vacancies.   Doctors,  teachers, both would be welcomed with open arms.  There is a need, and although we don't have everything that city life offers,  it's a great place to raise a family and live an outdoor life.  So why so many vacancies?  We're really very nice people. ☺️ 

A while back I attended a talk on Hypnotherapy.   It was interesting and I hadn't heard about the intellectual versus the caveman parts of the brain before.  However, to be honest, I had heard about the glass half full,  and that its the length of time you hold the glass for that is so important.   I did like the calming voice, lulling me into a sense of peace, but I couldn't visualise the room at the end of the corridor.   I've no doubt that all therapies work for some people,  but there is no cure all therapy.  Maybe, when you have experienced any life changing situations,  you need to explore and find your own route.  My therapy remains mindfulness, and my journal.   I work hard to keep my glass half full, but it does get heavy when you find it hard to let go.  Unfortunately,  not everyone wakes up in the morning with an empty stress bucket.

I read a post the other day, written by someone who was doubting how much to share.   I believe,  when you have an extremely rare condition your voice needs to be heard.  How else will others find you or be able to relate,  or learn.

As a child I didn't have a voice.   As a teenager I was advised against blowing my own trumpet.   I don't think I ever had a trumpet,  just maybe a very small cornet.  Expectations were lower back then. 

I began to find my voice after my TTP diagnosis.  After a long period of recovery,  and PTSD, I realised that I had a need to tell my story.  I've often stood in the shadow of others,  back stage, but I realised I could help.  Early Diagnosis and Education Save Lives!  

So, if you want, then tell your story.  There maybe someone else with the same story, who can be helped.

♥️