Medical professionals and communication

WARNING ! HEAVY RANT AND WHINE ZONE. TOTAL EXASPERATION.

YOU DO NOT NEED TO READ THIS BUT I NEEDED TO WRITE IT AND GET IT OUT OF MY SYSTEM !!!!! ;O)

Is it me or are most people in the dental profession incapable of sympathetic, clear and precise communication ?

Those of you who follow this blog will know that my dental saga re. removal of a lower seventh and a wisdom tooth has been going on for over a year. Suffice to say that the extraction process is complicated by the fact that I am not at all keen on having the blighters removed whilst I am conscious but the sedation option now seems to be too difficult because
a) you need to fast beforehand (and the length of time you need to fast varies according to which dentist or oral surgeon I speak to: it is anything between 1 and 8 hours)
and b) the drug of choice is for CS Midazolam which is part of the same family as diazepam to which I have a very nasty reaction.

My dentist referred me to the hospital for the extraction in Feb 2009, having become exasperated by my inability to cope with certain drugs and me having to cancel twice because of my relapse...even after I had told her I had M.E., and explained my 'unreliability' at being able to attend pre-arranged appointments because of the 'nature of The Beast.'

I have now had three pre-op visits to the hospital: each time meeting someone other than the oral surgeon and each time asking about the exact nature of the procedure and the anaesthetics/fasting time they intend to use. I have done so in order to try and secure the best possible outcome for myself as someone with M.E. and with a dental phobia. I have written letters to the surgeon expressing my concerns and asking for a 5 minute conversation over the phone since he has been trying to direct/deflect my questions w through his (very sweet) secretary who reads out his unhelpful response to my letter so that I then I ask another question and she says 'I don't know. I'll get back to you'. It is like playing ping pong with an opponent hiding behind a screen.

In exasperation, two months ago I went back to another dentist ---- a private dentist who was human and treated me as if I had genuine concerns and spoke to me as one intelligent adult to another. I was almost on tears with relief. Here was someone who did not treat me like a freak, a wimp ,a nuisance: yes I could have conscious sedation, yes the fasting time could be as short as 2 hours (do-able for me...just) and it would be fine. I then spoke to their Oral surgeon and all went well until we discussed my bad reaction to midazolam at which point I got referred back to the hospital having been told by the dentist's Oral Surgeon that it was not unreasonable for me to ask for a face to face consultation with the hospital oral surgeon and anaesthetist about alternatives to Midazolam i.e that I wasn't just being a nuisance and unreasonable.

I wrote another letter an yesterday was the big day...I would finally meet the man himself, spend a quality 5 minutes sorting out how they would perform the extraction and the anaesthetic they would use in order to secure a best possible outcome ......and then get on with it. I just want this over and done with.


This is not how the NHS works. I went for the appointment and was about to be directed down the pre-op 'X ray and more blood tests route' again until I said quite emphatically that I'd already done all that and had just come to talk about etc etc.

I wait in a crowded, hot waiting room amongst a group of tired, irritated people who had had a enough of being shoved around (when I did go for the pre-op blood and X-rays last September it took 4 hours !). There were people with tales of being there since 9 a.m. ( this was at nearly 1 p.m.), tales of an elderly woman whose notes had been lost and was distressed and wanted to get back to bed on the ward, tales of people who had an elderly father in day care across the hospital site and a disabled son at home with a respite carer who had to leave by 1.45 and yet his mother had still not been seen by 1.15 p.m....and the hospital knew her situation.

Eventually I am called. At least we can have a proper adult discussion and sort everything out. I want this over as much as anybody. I walk in the room expecting to see the Oral Surgeon ( I know what he looks like). I am met with a very tired, disgruntled woman about 28.

'What was it you wanted then ? Something about anaesthetics ?' ..she asks as if I she is speaking to a piece of sh*t on her shoe.

I explain, again, about my concerns (for it is obvious she has not really read the correspondence and nobody seems to take a few minutes to read your notes before you enter the room)

'Well, you can't have Midazolam because of your reaction to diazepam, they're part of the same family of drugs' (yes I know that ...I told you)

'The only way is to have a local...be a five minute job.'

' Are you sure ?' (Really incurring wrath now.....questioning the expert !) ' Only my dentist extracted the lower 7th of the other side and it took about 20 minutes (of torture....but I didn't say that last bit).

'No it'll be easy....it's all I do all the time. ( no wonder she looks so bloody grim ) We'll just pop them out.'

(I didn't tell her that the oral surgeon at the private dentist said, when I asked him if I might just as well go for a local and tough it out, 'Oh God know...I wouldn't want it out with a local...there'll be stitches and everything and it'll be nasty.)

I was flummoxed. I didn't know what to say. I was tired and exhausted and thinking about the 30 minute drive home.

'That do you then ?' she says.

'Yes, I suppose so...' I find myself answering.

So that's it...out with a local.

Why is it then in such situations I always come to a point, no matter how much I rehearse my attitude and responses, where I feel like I'm at school and must do as I'm told: that I'm standing the in my nice grammar school uniform waiting to have whatever someone else thinks is good for me, done to or metered out to me ? I hate that feeling and hate myself for having that feeling 36 years after I have left school.

What makes me really angry is that all I've ever asked for from the original dentist and the hospital is a a very little time and a proper reading and addressing of my questions,. When I sent similar letters to the original dentist her response was
'Well, none of my other patients make this much fuss....but then...we've got a receptionist with M.E...she's never here. Always depressed...she's gone down that route' (make you own minds up about her attitude to PWME...anyone hear a little voice saying 'waste of space, wimps, malingerers ???)

Yesterday was hell anyway with builders banging constantly, daughter's birthday coming up, cake to be made, presents to be wrapped, son also at same hospital for another appointment. It took all I had to get to the hospital yesterday and our conversation could have been held over the phone: no journey for me, no waiting, no taking up valuable time of surgeons, secretaries, getting in the way of patients who also had busy lives but who really needed to see a dentist in person.

Why will nobody listen to me ? Is it too much to ask ? and what do I do with this latest fobbing off about having a lower seventh and a wisdom tooth out with only a local ?

Rant over ....well nearly....

* Having said all that I recognise that there is something else going on here and it probably has something to do with my whole attitude to authority and, in particular, to the medical profession.

Don't get me wrong: without the NHS my son would probably not be alive and even if he was he would be in much worse health than he is. In a crisis and where children are involved, the NHS works miracles.

On the other hand, I have seen other relatives go through hell, placed inappropriately, doctors playing God, expecting to be treated like God, being unreasonable (when my mother had terminal cancer she fell and had suspected fractured hip and the A&E doctor wanted to send her home. It was only because my partner and myself physically stood on front of him and told him if he sent her home we'd report him that she stayed in hospital...and even then she ended up on the wrong sort of ward, where all her drugs were messed up , she was not fed or changed and she stayed there until I begged the local hospice to provide a bed.) and at the same time I have worked in the NHS and seen the disorder and waste first hand. I know for a fact that yesterday's oral surgery clinic (every Tuesday 9- about 1.30) had 29 people to see and that is a 'light' day...usually it is around 37. How in God's name can anybody --even the grumpy 28 year old..be expected to process 29, let alone 37 people in about 4+ hours ? The whole system needs an overhaul with patients and staff treated like human beings who need and deserve proper (not begrudged) respect.


Can you tell I'm very angry ? ;o)

Shadows and glimpses Part 2

Firstly, thank you all so much for your responses. It's amazing to feel I have such a wide range of ideas and opinions to draw on at a rather confusing point. There are so many points to think about and address that I thought it best to pull it all together in a new post rather than another comment: to do justice to the amount of time and thought you have all contributed

You're all right. It is a real stumbling block to compare yourself to other people and ordinarily it's something I don't do --- it's pointless and, in fact, usually I don't very much care how other people live their lives so long as they don't harm or upset anyone else.

This case was different somehow because I'm so close to those people and have known them for so long and been involved with many creative projects with them both long ago. I see that they have somehow managed to walk that tightrope that Dominique refers to: they have maintained their creative practise despite their own difficulties (and they have had their own) and brought up two delightful children who are a real credit to their parenting skills. I just wondered how they did it when, in may ways, the tools they started off with are so similar to mine and my partner's. One of that couple is my partner's brother and the the woman is someone I have known longer than my partner. Her upbringing and the values she grew up with are even closer to those of my upbringing. It's like we all started off from a similar point with similar tools but somehow they utilised theirs more ably so that now their children are older and beginning to move away they don't have the task of desperately trying to retrace steps back to who they were/are because they are already there. I feel like I've completely lost touch with the real creative free spirit I was.

I think some of it is how we view our creativity and for me the tug between being creative (which deep down I see as selfish) and being responsible and caring has always been a huge stumbling block for me: the caring stuff almost always wins. In the case of my relatives, they are very caring and certainly their children have been very well looked after but in a much more pragmatic way than ours. They are much better at saying 'no'.

The other stumbling block has always been the 'shoulds and oughts' as Signs mentions and I guess this stumbling block and the aforementioned one are all part of the same package.

In the end there is no way that I can change my caring nature, the love of my children or my reaction to people in need -- i.e. to run across and help. That applies to anyone I care about really -- my children, partner, neighbours, friends, blogging chums, It's just who I am and at nearly 54 I doubt that it's possible to become a hard-edge creative diva ;O)

What I can change and what many of you mention, my sense of self worth about my creative side and a recognition of the fact that that matters too and I should set time aside for it. I need to get back to me somehow -- no matter that I have children, or a disabled child or that I don't always feel that well. I need to honour that side of myself and I know that if someone came to me with the concerns I have outlined, then this is how I would advise them. Secondly, I need to do it and not just talk about it.

Thank you again for all your thoughts. You're all treasures ;O)

Shadows and glimpses

We went away this weekend: the first time I’ve managed to travel that far ( a WHOLE 40 miles !!!) since the summer before last. It was great. Not without its difficulties ….because for someone with chemical sensitivities, staying in any accommodation is risky --- and this time the perfumed washing powder used to wash the duvet covers got to me big time, ---- but, nevertheless, it was lovely to go for some peace away from the builders and the everyday grind.

And today there is more peace because we have a 9 hour power cut in the village for ‘essential maintenance work’ so there is no phone, no heat, no internet. No one using their electric mower, no builders with their radio on all the time and no TV. Even in the countryside it is noisy these days and round these parts, my dearios, many people are retired and at home all day and they are hobbyists --- usually men and usually men who like machines: lawnmowers, tractors, , hedge trimmers, lathes, woodturning etc etc and they all make a noise: and you thought that Cusp Villa was situated in an ocean of solitude and quiet in the Suffolk countryside ----Hah !

Our weekend retreat was near to relatives’ homes. We visited this couple on the way back. One is a musician, the other a textile artist. I have known one of them longer than my own partner…nearly 30 years.

They have two children, like us, and a much more bohemian attitude to life than us: they’re not concerned about a tidy(ish) house, not concerned about set mealtimes. They’re concerned about their art and getting stuff done. The house is unconventional, chaotic and happy. They are not without their own health problems.

I wonder how their lives seem so different to ours.

What is it about me that prevents me from staying with my creativity? What is it that makes me put my all into the children, the house and trying to stay above the waterline with my health ? Why is it that this other couple are still relatively close to who they were 25 or even 30 years ago and I have drifted so far away from who I was all that time ago.

Some of it is sense of self and sense of responsibility.

They are both caring parents and caring individuals who will and have been there for other people in the family when needed…..but they still maintained their identity and their practice. I, on the other hand, have a much lesser sense of self, much lesser confidence in my ability to be creative than them…even though I know this is wrong of me. My identity is bound up in being the rescuer, the helper, the aid. Theirs is bound up in being creative. Their own children call them by their Christian names rather than Mum & Dad. Our children only do so as a joke: I am very much the parent. I am not seen as an artist or anything else other than a parent or as someone who’s not very well. That saddens me.

My sense of responsibility is huge, overwhelming. This may be a legacy of being an only child…and the only child of a parent who was often unwell and another parent who worked with disabled people and spent their life giving and encouraging.

If there is a choice between my creativity and the needs of my children --- even if that need is relatively insignificant (‘….will you help me put on my socks…’) I will go to them and put myself aside.

It is true that having a disabled child puts greater stress on one’s need to be there as a parent (the child who needs help with socks is 15….he can’t bend down that far and socks are difficult to put on at the best of times…never mind zips, buttons etc which are an impossibility) but even so, why do I put everything on hold for them ?

Am I too giving, too saintly [NOT !!! ;o) ] or am I just scared to put myself first and take the leap back to being an individual adult whose creativity matters ? Is helping with socks the easy option ?

In my last post I spoke about living on the cusp, on the edge. That holds still. I do live on the cusp because of my health, but, after that visit this weekend I am beginning to feel that there is something else going on that prevents me from being true to myself.

Maybe it is the natural order of things: that you give as much as possible to children when they are little and incapable of so much and then gradually they learn and become independent and begin to fly the nest, fly further, need you less …..and this point is during a period of adjustment: me adjusting to my children’s’ increasing independence and lack of need for me.

And if that is so, what does that mean for me ? Who am I ? What shall I do ?

When I first became so unwell that I could no longer go to work, there was a part of me that thought

‘Right, well, however ill I am, at least I’m here and I shall do whatever I can, when I can, for the children because they are the most important thing (at this point they were only 2 and 5 years old) and the rest (i.e. an career plans, creativity ) can go hang because I can’t do it all now like I used to (and boy did I do it all !!!) and so I must set priorities…and they are number one.’

Now I’m not so sure that holds true any more…even for my son who is more able and independent, despite everything. Maybe it’s time to try again and move out into the world no matter how unwell I might feel at times.

Maybe those shadows I keep sensing, maybe those glimpses of something else are beckoning….but it’s a very scary place to be.

BLOGGING FOR M.E./CFS AWARENESS 2010 :

M.E., Invisibility and Blogging

So often M.E. is invisible. So often people with M.E. look well.

‘You look so well’

‘To look at you, you’d never think anything was wrong’

The frustration of feeling so ill and looking quite well can be demoralising and infuriating. Recently I read the blog post of someone with M.E. who was so desperate to be understood that she wished she could look more ill so that people would realise how ill she felt: so that the face matched the suffering.

There’s the dilemma for people with an invisible illness:

we want to be free of the illness but that option isn’t available;

we want people to recognise our pain and struggle but that’s not necessarily an option because we often don’t look as ill as we feel so we are lumbered with looking quite well, feeling quite awful and needing some way of straddling the line between what we experience and how we are perceived.

Blogging can be a way of reaching out and communicating and offering a helping hand when living in such a paradox. No one can see you and only the words matter. You can be who you want to be, when you want to be.

There seem to be two sorts of blogs written by people with M.E.: those who use the blog to list symptoms, cry out, vent, share progress (or otherwise), politicise, campaign and those who use their blog as an outlet for the person beyond the illness, the person who was there before the illness and is still there despite the illness. Some blogs manage to share the two approaches but by and large most blogs by people with M.E. lean more one way or the other.

When I started my blog it was an outlet for the person I could still remember had been there before ill health wormed its way in like a parasite.

In the first few months of blogging I vowed never to mention my illness:

here was a space that would be M.E. free,

here was where Cusp met the world on Cusp’s own terms and no one could see or know how long it took to put a post together,

the desperate searching for words and phrases,

the pains in body,

the fluctuating levels of anxiety,

the feelings of nausea,

the headache.

Here was a space where I wouldn’t have to worry about standing up, keeping eye contact, smiling in all the right places, keeping up the pretence that everything was OK whilst communicating with someone else., not letting my guard down…not letting myself down.

Eventually, even that space was deemed less than sacred.

The spectre of M.E. infiltrated my blog and I started to hint, started to mention how I was feeling…..physically.

I couldn’t keep up the pretence even in a virtual world anymore than I had been able to keep up the pretence in the real world at work when I was feeling terribly ill but desperately trying to carry on regardless, not give in, not roll over.

Another plan spoilt.

Another dream stolen.

I lost interest.

I abandoned the blog…

in rage,

in frustration,

in despair.

And then after a few months I began to read other blogs written by people with M.E.: blogs that were witty, humorous, thought-provoking

...and sometimes they mentioned M.E. and sometimes they didn’t.

I tried again.

This time I was honest and attempted to get the balance right…between the person behind the malady and the person who has to face up to being lumbered with obstacles, frustrations, difficulties ..like any and everyone else. I didn’t have to hide myself away or hide from my own difficulties but I could express the me that is still here but often hidden and I could communicate and relate to people as if I was still well.

It is much easier to be what I think of as the real me in a virtual world than the real world.

In real life, it’s much harder to be who I really am: the difficulties of getting from A to B, the constant interruptions by ‘that spectre’, the frustrations of trying to maintain family life and hold to my responsibilities as a parent whilst keeping the worst excesses of M.E. at bay, make it hard to maintain flow, hard to maintain the me beneath the illness.

In the blog, I can drift in and out of communicating when energy and space allow: you can see who I want you to see.

Recently I was challenged to reveal my ‘real’ face, my ‘real’ name.

I was perplexed.

Should I reveal the ‘real’ me ?

What would be the point in doing that ?

What would that mean for me ?

Which is the real me ?

Is there a difference between me in the world and me in a virtual world ?

For my readers -- if I might put it so boldly -- there is no ‘real’ or ‘not-real’ name or face because here, here on the Web, I am Cusp and only Cusp.

It’s the only way you know me and it’s who I have chosen to be in this space.

Cusp is a name I chose to represent myself on the Web

Cusp: the me who is unfettered and unhindered by that ‘bastard illness’ as one dear blogging chum once called it.

Cusp’s home: the blog …. the one place I can come to and get some space and peace away from what is supposedly the ‘real’/ real world me because the body who walks about in space and time is not the real me…it’s a diluted version. If I revealed the ‘real’ me then there would be no joy in blogging because I would have no escape from the constant struggles of every day

Cusp: kind of alter-ego but only a kind ..because essentially the Cusp you read about is the essential me and I chose the name specifically because it exemplifies who I am and where I am because, like a lot of people with M.E. I live between two places…

between ambition and practicality,

between hope and realistic expectation,

always living on the periphery,

the edge,

always on the cusp of being able to get somewhere

On the blog, whilst I still have to live real-life me, I can release the hidden me and be closer to who I was in real life because Cusp is a part-remnant from another life,

a former life,

a life when I met more people,

did more things,

felt relaxed about life and what needed to be done

when it was easy to do the smallest things

even the hardest things

and a life where I felt useful and competent and vibrant

Blogging has been a lifeline. It has helped me to feel part of a community again, to feel appreciated and to find lots of other people to appreciate –-- for their kindness, humour, creativity and given me the opportunity to express a part of myself that could easily become submerged beneath the onslaught of ill health.

Blogging brings awareness, self-awareness, awareness of a bigger world, awareness of possibilities ---- a world away from what can be a very confined existence.

Blogging brings freedom.