Life

Life is

  getting in the way of blogging

  reading blogs

  commenting 

I hope to be back when I can and in the meantime.  I miss you all. Am thinking of you.  Care about you bloggy friends so much.  But I wouldn't be being honest if I didn't write this.

Pop over to benefitscroungingscum who wrote a post without the swearing and the vitriol about living with EDS and gp's/consultants etc. so much more eloquently put than I did latterly.  I am too tired to put the link I am afraid.

To Veronica xoxoxo

Kim @ frogpondsrock  - thank you for understanding

Geri attric - your last comment just broke my heart on your behalf and you are right so right

Steph - hang on in there I am thinking of you

i'm confused - Em hun always will be there for you - you know how to contact me if you need to

BG xoxoxox no more words needed i think

ms friends - especially YOU - you have been on my mind and without having met her I will never ever forget Nicole either and my candle store is still going strong for you.

Dysautonomia - you will always make me laugh, make me think and my heart will always go out to you - thank you so much for understanding my blog especially when I talk shite!  Always look forward to Fridays but don't feel obliged to stick to funny Fridays if you don't want to.

To anyone who reads but doesn't comment thank you for stopping by. Although i think bearing in mind I don't have a stats thingy that those of you who do stop by just about make up my whole reading bloggy people.

I am sure there are more people I should thank but I can either remember names specifically or conditions or blogs names not all at the same time. (no surprise there then)

I will be back - I feel guilty for not supporting those whom have always been there for me but I just can't blog right now and not even able to blog why.

I hope you understand and I will be back I hope..

Ciao for now.

ps Nechtan - you are in my thoughts too but don't have the words.  

if any of you need need to talk to me and have my email address please don't hesitate to contact me via email.  To those of you who don't have my email if you want to you can contact bloggy friends who have it and they I am sure I hope won't mind emailing me to forward your stuff to me.

Over and out for now.

with love

mexoxoxox

Physician Heal Thyself - warning strong language

Well saw another Consultant today who knew Jackshit about EDS.  I am never ever again seeing a Consultant for anything.  I am pissed off and upset.

So if you are a Consultant and reading this which I doubt very much as most have no interest whatsoever in Ehlers Danlos I suggest you stop reading right now as I am about to vent my spleen big time.

If you are a consultant who reads in their patient list that they are about to see a patient DIAGNOSED with Ehlers Danlos Hypermobility Type (formerly k/a Type III)....

• Please BOTHER to research (even a little) on the condition so that you don't sound like a complete arse.
• If you had done this you would KNOW that patients with the condition have great difficulty with efficacy with local anaesthesia.
• DO NOT laugh with derision at this fact.
• Because of arseholes like you (& I have had the pleasure of meeting two of you in the past week.  Patients like me are treated as though they make this fact up.
• It is in fact part of the diagnostic criteria
• AND in actual fact if you bothered you would know that people like me have often suffered unnecessary pain, embarrassment and been labelled as hysterics when administered local anaesthesia.
• It is a medical FACT that we don't respond to local anaesthetic.
• It is not funny.
• It would take a few moments of your time to look up this condition and yes I know its rare and not your speciality.
• This being the case you would be INFORMED when dealing with me that you look stupid when you don't know that for whatever reason it is now called Ehlers Danlos Hypermobility Type (formerly k/a Type III)  I am right on this fact not WRONG.
• If you yank the joints of a patient around with EDS it is likely that you will HURT them causing ongoing pain.
• Subluxation and dislocations occur easily.  So when you yank my foot around it puts my fucking hip out.  Arsehole.
• LISTEN.  Its not rocket science.
• It costs nothing to be polite.
• Arrogance is not a fucking virtue.
• If you don't know ASK.
• Just because its not your speciality it does not help the self esteem of the EDS patients to be talked to as though it is a made up condition.
• There is no loss of face to give a few moments of your time to familiarise yourself with the condition.
• When a patient has been DIAGNOSED it is rude to say - that you didn't bother to check for the EDS whilst examining.  I would imagine and forgive me here if I am wrong that is because you wouldn't know HOW to anyway.
• I expect a few ehlers danlos patients have gone undiagnosed because they have come to you with symptoms which mimic other conditions.  Only to have a letter sent to their GP stating that there is nothing wrong with them.
• This lack of knowledge means no doubt that patients with the condition are left to cope alone labelled as hypochondriac's or hysterics or mad.
• I do not appreciate being talked over, my pain and debilitation referred to as JUST EDS.
• It makes me cry when I get home to be told that the reason I drag my leg is just EDS.
• If you had it or a member of your family had it - you would not be so fucking arrogant to be so fucking flippant.  Arsehole.
• I understand it is a rare condition by the way and I get it that you don't give a shit.
• I also get it that you earn a considerable amount of money and if I earned as much as you I would not dare to speak to my 'clients' as though the condition which they have is a nothing in the grand scheme of things.
• I do take it personally when you say in a condensing fashion 'how long have you been unemployed'....
• Perhaps you would like to suggest a job which would be suitable eh matey?
• Perhaps if you had any fucking idea just how debilitating the condition was you wouldn't make such crass and frankly insulting remarks.
• For the record - I have worked but not for some time - why because I have unrelenting pain, daily subluxations,, dislocations plus the rest on a daily basis.
• Along with the condition comes osteoarthritis, osteoporosis and more.
• If you had FUCKING bothered to find this out before I entered the room, you would not have made yourself sound such a patronising, arrogant fucking arsehole.
• Thank you for treating me as a second class citizien.
• People like you are the reason I never ever want to see a Consultant again who has his head stuck so far up his arse.
• For the record I am pleased in your opinion I don't have anything wrong with me and its JUST EDS.
• This must mean that all EDS patients JUST  have a great life - its a fucking breeze mate.
• There is no point complaining because you probably wouldn't listen.
• Oh and by the way when someone a mere patient tries politely to explain some of the difficulties encountered with EDS please don't talk over that patient. Its rude.
• Querying diagnosis by the way made by other far more eminent professionals more qualified and so much more dignified in approach than you makes you look silly.
• Oh apologies for swearing its not like me BUT
• Once again I have been undermined by YOU a consultant who doesn't give a shit.
• So where does this leave me
• To crawl back under my rock from whence I came.
• Crying tears of frustration that once again I have had the misfortune to meet an ARSEHOLE like you.
• I have no doubt you shut my case file and sent it back to the archives feeling as though I was wasting your time BUT
• I didn't ASK for this referral by the way
• I do not make a habit of wasting the time and resources of the PCT
• Am I upset 
• YES YES YES
• because once again when just like your colleague last week you have treated me as though my condition is of no consequence.
• I will get over this but am I embittered YES
• WHY
• because I have put up with this type of attitude for too long.
• I am a nice person and do not deserve this shit.
• SO MR CONSULTANT if you ever ever see another patient with EDS please don't treat them like you did me.
• I have so much more to say and have only just hit the surface of the way I feel.
• I hope you enjoy your next game of Golf 
• I can't play Golf by the way due to my condition.
• Most of the time physically I can accomplish fuck all
• This does not make me unemployed it makes me disabled ARSEHOLE.
• So thanks for nothing you have only served to remind me why I cannot sleep the night before appointments with people like you.
• The nerves I feel at having to explain myself, whilst your eyes glaze over.
• I don't want your pity by the way BUT 
• I would appreciate some RESPECT for my condition
• I met one of your colleagues the other day - a dermatologist treating my daughter.  She understood so much about the condition. She offered empathy which costs nothing because she knew that it is a fucking horrible condition to have.  Nice lady by the way.
• You may say my dragging leg is JUST the EDS but it does not mean that just because in your opinion its not because of any neurological impairment that it is any less debilitating. than a leg dragging for any neurological reason.
• I do not consider myself LUCKY thanks.
• I am FUCKING unlucky frankly to have EDS. 

The above points are just some of the reasons I have lost faith in the medical profession.

* I wonder whether the reason I was asked about my employment status before anything else is a government directive.  I am a fucking housewife, crap at it, my house is a mess if that's what the current criteria on it is.  When you said does anyone else in your family 'think' they have something wrong with them and I answered - two have been DIAGNOSED with Juvenile Myoclonic Epilepsy and the other Ehlers Danlos. You raised your eyebrows.  Do you think I came to see you because I am a benefit fraudster sir because I am not.  I am disabled not with a touch of age related arthritis or a dickey back related to some minor issue I have EHLERS DANLOS.

I hope if you are a GP or a consultant reading this (no doubt you have made up your mind that I am mad so are already off laughing no doubt at my mad ramblings).  If you are about to see a patient who may have Ehlers Danlos or is already diagnosed please take a moment before you write potentially litigious untruth's on their medical records).

Please forgive my upset.  You see what I am suffering from is mind blowing frustration because whenever I see a medical professional who has no proper knowledge of Ehlers Danlos frankly I want to drink a bottle of Gin.  I won't because I am not an alcoholic.  Although it wouldn't surprise me frankly if someone like you had written that down surmising that I was drunk when I walked into the table, door or fell over nothing instead of understanding that people with Ehlers Danlos have poor proprioception.  Oh but I forgot silly me - I don't have it do I its all just a fucking figment of my imagination.

I was brought up well and told to mind my manners but you didn't so why should I - so frankly if you are one of the ignorant arsehole's I have had the pleasure of seeing this week courtesy of the NHS in the last week.

You can just Fuck Right Off.

I did not come to you expecting you to fill in any forms related to any benefits either.  I came because my GP referred me.  The only mistake I made was thinking you may know anything at all about Ehlers Danlos.

Physician Heal Thyself.

Camera up my nose & an Eco-Cabin

Posting as feel guilty about not doing so.

Saw a new and different consultant today, to be honest I didn't take to him that much.

He put a camera up my nose which shot down the back of my throat before I had time to say please be careful - he didn't take any time to explain what he was about to do and he passed wind at the same time.  Don't get me wrong I absolutely understand that farting is a natural process but please sir not right then when it made me want to laugh like a child whilst I had a wiggly camera up my nose.

I tried to explain about local anaesthesia to him as he said grommets for you then or would you prefer a hearing aid.  I tried really hard to say with my family history it will be grommets and a hearing aid.  I am nearly 46 and I have to have grommets.  I will say this in the bloggy world but not to too many people outside of it.  Children get grommets - not nearly menopausal women surely not.

He refused to take on board that there may be a problem with local anaesthetic on the grounds that it will be a cream on my ear drum.  Excuse me - could we have a conversation about this obviously not.  I needed reassurance on this front.  That it isn't the same local anaesthetic cream that I am allergic too that does not work anyway.  I have time anyway to research this so am not panicking too much.

I just get a bit pissed off when new Consultant's talk shite about EDS showing that they know absolutely nothing about it whatsoever.  Never mind I have time on my side.  Good, that will give me sufficient time to talk myself out of the whole thing then then spouse will talk me round.  I am however NOT having anyone pierce my eardrum with anything if there is any doubt whatsoever that the cream won't work.  Sorry but too many bad experiences with well meaning health professionals who have told me that it won't hurt when it does means I am stubborn on this factor.  So I will require gold plated evidence that all will be fine and then I will co-operate.

I am not pain adverse afterall I have spent all my life making an in depth study of it.   I am not a whinge bucket when it comes to it. In fact I am pretty stoic.  I just don't fancy my eardrum being pierced without it not hurting - having suffered multiple perforations and know how painful it is willingly have it happen followed by a thingy being inserted is not my idea of fun.

The weather is good.  So that's good.  I am warm not cold and that makes me happy.  Outside has been hot so I have been shade seeking and am becoming expert at this.  Years ago I adored the sun, nowadays we have a tumultuous affair.  You know the type of thing love/hate blah blah

 Husband & I are going to stay in an eco cabin designed for campers who don't like to get wet and also is on a fully disabled access site which is adult free. (Cabins have larch exterior and sturdy canvas canopy). Now don't get me wrong I love kids but we are not ever without them so I am looking forward to going camping without getting wet and without other people's kids around.  Its not booked for yet but I am excited as its for three days only - I know but I miss my pets.  On my birthday and a day later our wedding anniversary.  Also its at the base of Glastonbury Tor glastonburytor.org.uk (no obligation to click on link unless one is interested in tales of historically important mythical places) so am even more pleased as apart from Glastonbury Tor its a lovely flat plain.  I like flat these days - I know I don't walk far but I do like a campsite that is not on a terrace where one gets to visit one's fellow campers in the middle of the night because of the lay of the land! Just so you know we haven't booked for the legendary festival having done that thing many many years ago more than once and despite the fact that there are many many middle aged hippies who do still go I don't intend to be one of them, preferring instead to have hazy memories of it that I can wrap up in my mind as much more laid back and happy clappy than they actually were!

I know I know its not real camping as it has electricity and a kettle but to me with me 'ol joints it means I get to feel as though I have been camping without the agony.  I am very very excited and for the next few weeks am going to drive spouse mad with my all things camping conversation.  He can fish and I can pretend to but read and we will be happy campers indeedy.  It isn't either very ecological friendly due to kettle etc of which I am guiltily aware but it is an eco cabin!  Which is better than not.  The site has the David Bellamy award for conservation as well for its tree planting and re-cycling so that makes me feel a little bit less guilty.

The only thing I know I will do is fall off the wooden platform but I won't mind I fall over everything at home as well.  Whilst the site is fully disabled friendly they obviously forgot about a ramp on these eco cabins - I don't mind though as I will write a polite note after we have gone thanking them for the lovely home made cakes and organic meat from the farm shop and just mention the falling off the thing thing.  Afterall we are supposed to be camping and tents don't have ramps do they.

Photo's blurred apologies but I didn't take them as we haven't been yet
!

A King Size Bed! 
My mother said it looks clean, my guess is this is polite for basic.....

I am off to cuddle my kitten and to sleep hopefully.

Happy Camping.