Making a difference....

I would like to say something individually to you all, who took the time to comment so thoughtfully and honestly on my last post. 

I have in draft the comments to each of you which I may publish eventually but for the present time its not here because I just read it and felt stupidly insecure about publishing such intimate thoughts & indeed facts about myself on the wibbly wobbly web. So I shall wait a while and look at it in the cold light of day.

In the meantime I thought I should post to say the 'bowel' episode has abated somewhat and my thoughts are becoming a little clearer.  An appointment is made with my GP.

As is normal with EDS when the body is or has been under additional stress I am having multiple dislocations and pain. Reminding me that looking for the good in small things helps with being able to look at life with continued optimism. 

Blogging friends support really does make a difference.  EDS when its like this is an isolating experience, the physical limitations means I am spending a great deal of time alone, friends care but most don't have the time to listen as you all do.  Thank you.

I have no doubt that the recent political situation will have impact on referrals etc. and I want to be sure with regard to all things bowel that I am going in the right direction having previously been underminded by some medical professionals. A common occurrence amongst those who have EDS is disbelief from Medical Professionals that the symptoms they describe are so painful and real.  Many have been accused of hysteria and worse.

I remember clearly following the birth of my daughter (prior to diagnosis with EDS) screaming at the midwife doing the episiotomy that she had to stop as the procedure was causing me such searing pain.  She laughed at me and with derision in her voice told me to stop being so pathetic.  I remember tears pouring down my face as she got another midwife to hold me down whilst she continued in her work. 

The following day she came and found me on the ward and in front of the other mothers gave me an old fashioned dressing down - I remained silent as words like, over reacting, hysterical, immature (getting the picture here) were thrown at me.  I remember saying to her when she had finished her tirade that local anaesthetics had never worked for me, that I didn't know why but when the day came and I found out why that I would remember her words.  She laughed in my face and said that in the history of her career not one of her patients had ever not responded to a local anaesthetic and that my pain was a figment of my imagination.

When I told this to Professor Grahame some  17 years or so ago - he put his hand on mine and said that if his dreams came true no one with EDS would ever have to go through this type of scenario. He said that it was his wish that the condition could be recognised by at least rheumatologists who would pass on their knowledge to inform GP's.  Appropriate management of the condition being available to each patient with the condition in their locality.  GP's receiving if his dream came true as part of their training an overview of appropriate management of an EDS patient.

I wonder how many patients can realistically say that this wish from all that time ago came true.  I wonder how many women have been on the receiving end of harsh words and misunderstanding that I received from that midwife all those years ago.  All I can say is with my second child it was on my birth plan that I should be allowed to tear naturally if necessary as I had ehlers danlos and local anaesthesia was a significant problem if an episiotomy is required.

No one knows why local anaesthesia doesn't work in some patients with Ehlers Danlos as far as I am aware.

This is just one example of why I think a diagnosis does make a difference.

By the way EDS isn't all bad - being able to scratch the itch anywhere on one's own back is really great.

ps - photo's of my gorgeous little kitten soon if he keeps still long enough.  When asleep he is so tiny the photo's just look like a blob of something furry.  His name is benji.  I must be getting dippy in my middle age as I honestly have never been so ridiculously protective of a new pet.  I just adore him.