Necessity, not bondage...

This is my new knee brace, sexy oh so sexy.  It is not a picture of my leg by the way.  My brace is blue.  It is interesting that when wearing this, people try not to stare.  The positive is that they give me a wide birth which is helpful as I fall over if people don't make way for me.

Finding appropriate clothes to wear with it is challenging.  It was expensive in the many hundreds of pounds.  I feel I should accessorise appropriately. The NHS in this instance did me proud. Skirts would be best to hide it.  But its getting colder and I need covering.  Because I am small, I cannot wear it under jeans as they would fall down (the jeans would need to be bigger) and over jeans is not a good look.  Because of my thin skin, leggings work well but the bionic woman look is so 70's.

Because it holds my knee in place it seems my ankle has decided to join in the game.  Wobbling away.  But one thing at a time.  GP forgot about other knee so for the moment I have one knee braced.  I am not keen I must be honest and it will take some getting used to.  For the moment though my knee is happy to have a friend who does the job a knee should do.

Next on the list is OT assessment.  I am hoping there is a long waiting list as the house, particularly upstairs is not for public viewing.  She is to assess for a stair lift and lightweight electric wheelchair.  We shall see what happens.

With the current budget cuts I expect she will agree that I need all of the above and more but due to constraints she will not be able to provide, the wheelchair in particular.  It has taken me a very long time to come to terms with all of this.  I am still somewhat in denial.

I like denial.

On the crotchet front, getting absolutely nowhere with it!   However, looking on the bright side, I have plenty of time to get the hang of it!

 

I am watching a film with subtitles.  I have always loved as long as I can remember watching films with them.  Perhaps its because I miss so much because of mild hearing impairment.  I also become lost within them, entranced by languages I can't understand.  The film is complicated, fascinating.  http://en.wikipedia.org/wiki/All_About_My_Mother    For some, shocking.  Its unusual for me to watch a film throughout.  This one I would like to watch again.

My son has passed his driving test. I have been through this with my daughter.  I must not panic each time he goes out.  He will be fine.  I keep repeating this to myself over and over.  He looks at me each time he goes out as I say 'I love you' and helps to ease my rising fear by smiling with his beautiful blue eyes and says 'I love you too, mum'.  I am proud of myself that I am learning to let go.  When in reality I want him back in his cot, sleeping soundly, safe secure.  OH has agreed to another kitten, he sees me panic and I see him thinking.

Yes another kitten will definitely help.  I can spend time thinking of a name.  Distraction.

* mini note: On denial, I actually had a home OT assessment ten years ago.  Wheelchair electric, stair lift, bath thingy were approved.  I have been in denial for a very long time. As none of the suggested 'stuff' was allowed in my house thanks.  Oh yes.. denial...

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.