...the martians could land in the carpark and no-one would care.

So today was a game of two halves sort of.  This morning I visited the doctor and explained that I wanted the prolene mesh that the surgeon implanted in me without permission 2 years ago removed. From the word go it caused me more pain than anything else in the surgery. Being a chronic pain patient I basically ignore it (thing is I reckon the pain would be a constant 2-3  peaking to 7 or 8 on a normal persons scale.  For me its another one of the list for when someone asks what hurts. Its less than my hypermobile spiney bits but more than the displaced wrists) but it is always there, Whenever I exercise, or am tired, or, importantly ejaculate.  Last nights solitary soothing exercise one would have thought there was a knife sticking into my gut. I want it out.
So they are referring me back to the Luton and Dunstable, which is a pain because I have never yet managed to get that place to send me an appointment.  They use paper.  You ring them and ask to make an appointment, they say we will send you one.  You say, no, that doesnt work, it never gets here, they say we will send you another.  When you say please just tell me the day/time they act like you are crazy.
I also wanted a rheumie appointment to deal with my shoulders.  and hips.  but mainly shoulders.  The doc said basically there wasnt much a rheumy could do for me so try a physio first (for which you self refer). So I rang them up.
Again with the paper fetish.
Also I was trying to explain to the receptionist that I needed a physio experienced in EDS-HT.  She just latched onto the word Hypermobility and said "yes our senior physios do that all the time"
Well call me Mr Suspitchy Doubttrousers but I think the nuance between hypermobility, the symptom, and Hypermobility Syndrome, the pigfucking hyaenabitch from hell is lost on you.  Well since NHS choices for many years used the terms interchangeably I cannot blame her.  But I suspect that come VE day when I am seeing some jobbing physio nerk that the presence of cluebringer would be greatly appreciated.

So that was part 1

In Part 2 I am applying for jobss.  and hating it.  I am not well enough.  but it is something to do.

So the one legged jockey said..

It has been something of a day. When I woke I thought today had only Foal ferrying, taking Mr Hutt (shall we call him Salacious Crumb? He is actually rather nice) to the gp for a blood test and a bout of physio. Although i say physio what i mean is 2hrs of heavy gym work followed by a swim. This is needed to keep my eds under control. Or its the only weapon I have.
As Percy has pointed out specialists tell us zebrahim that we must be the fittest people we know. The problem is that to my boss and mrsinky and everyone else it looks like I am going to do something pleasant.
Let me address that for a bit. As Yukio Mishima once pointed out weight training is a form of meditation. Of course he was as mad as a benzedrine otter with a stoat up its bum but the point remains. So yes at its best it is...contemplative.
But with eds you have to concentrate soooo hard. Because a slight loss of form can send you to hospital. And of course everything you are doing is painful. Only the degree of pain guides your form.
So every day I am meant to do 2 hrs of painful stuff that is desperately important but which everyone else views as a luxury or a hobby.
After dropping off foal at the learnatorium  I hot a call from Salacious saying he didnt need a lift. Result i thought. I shall buy new trainers at the discount store (pure class me) then go to David Lloyd and meditate.
Painfully.
Then the phone rang. Igor reporting and needing virtual fish heads.
Then the email went. Boss needs two reports today.
Then the skype went...
I spent all day working. Then had to rush to get foal. Luckily today I still havent crashed. If this had been Friday I would have ended in a and e.
So no physio.
This happens a lot. The damage is invisible but I am laying down wages of pain and immobility.

In good news cmht have contacted me. I now have a contact no for emergencies.
And an appointment with a nazgul to get treatment strategies on the 25th.

Tomorrow I have no appointments after foaldrop. Lets see how that one goes..eh?