Sometimes I feel as if I am living inside a web; a spider's web with me as the hunted and trapped fly.
This morning I had a phone call from the JobCentre to talk to me about my ESA appeal. The person I spoke to was pleasant, helpful, charming. He was trying to do his best whilst employed within a system which isn't working and is not 'person-centred' but 'finance-centred'. It doesn't matter that he seemed to genuinely care about what I told him about my condition and my ability, or inability, to work: he was obliged to spout the mantra about how the old system was based around what you couldn't do and the new system is about what you can do: blah blah blah.
I can do quite a lot of things. Even the brain fog and cognitive difficulties associated with M.E. don't mean I'm stupid. The point is, as I keep on saying, is that whatever I can do, I cannot do it for very long and I have to have frequent rests: otherwise I come to a complete standstill and relapse; become bed bound. This way of being isn't conducive to finding or keeping most jobs.
During the conversation, the JobCentre employee went through all the documents I (or DIAL) had sent in support of my appeal. It turns out that DIAL have forgotten to said all the supporting evidence that I worked so hard to get together before Christmas. It's all still in DIAL's filing cabinet. I was also told, again, that probably the most important document the DWP could receive would be the letter from my GP supporting the reasons for my appeal. There is no such letter. The only document from my GP is a hastily completed, scrappy questionnaire where he has deigned to write five word answers and for which he charged me over £40. So I am trapped between an unsupportive GP, a benefits advice support service which is telling me one thing and doing another and a government body which doesn't see me as a person but as a target figure.
Everybody seems to be having a say in how I am, what I should do, how I should act and what's best for me....except me....and I feel powerless to change it because everybody else is in charge. Ultimately, of course, I am in charge of myself but my health, the 'bastard illness', always has the upper hand and yanks on the lines of sticky thread in the web, preventing me from actioning the feelings of frustration, anger, 'I'll show you' and making me feel miserable as well as ill.
What would it take for someone to listen to what I am saying ? This has been my experience almost my whole adult life. First it took nearly 30 years for someone to listen and believe I was physically ill instead of depressed or anxious or lazy. Now I have a doctor who believes I am ill (even though he will not agree with me on the exact diagnosis) but I have another group who believes I am still well enough to work at least 16 hours a week.
I know that this whole situation is bringing all sorts of old feelings to the surface. I don't know what to do with them. I have tried everything I know, over the past 40 years, to resolve these difficulties with my health and to be 'normal'. At this age, I know that the way I feel physically is just the way I am. I am not able-bodied.
I am very strong mentally and emotionally so I have to deal with physical weakness and try to make a life for myself but I also feel like I am being made to look a fool when I know I am not a fool.
I feel like a fly in a very sticky web and I know there are many more people out there like me. If only we could really rise up and make our tormentors see sense.
So sad to see that Dory Previn died yesterday. Her work and lyrics were/are such an integral part of my life and inner vocabulary. I'm not sure that she was ever really appreciated as much as she should have been as a performer and her lyrics, with their dark humour and cynicism, were too much for popular radio. So pleased she finally seemed to find peace with her new partner who was with her from the 1980s until her death.
Now she's 'on her way home'.
Seems like watching your heroes die is part of growing older
In another time, long long ago this song meant everything to me: not just because I was a Bowie fan, not because I adored the freakish costumes and (at that time) state of the art video effects, but because the words meant so much at a time that was difficult and very uncertain.
I never thought that over 30 years on, they would seem so apt again.
Those of you who know me from Facebook will probably know by now that I was found 'fit for work' at my ESA assessment. I wont bore you with the details if you dont already know them but, essentially, this means that I must go and find work (for I am not entitled to any benefits from the State) or make an appeal against the decision in which case I shall be given £30 less per week than I am now until the Appeal panel make their decision. If I win I shall recieve ESA in return for jumping through various hoops that supposedly will enable me ot return to work. In any case the ESA will only last for 12 months and then that's it...no more money, no more support....I'm out of my own, on the scrapheap: a 56 (by then) year old, who has been out of work for 11 years, who has a chronic health condition (according to the GP) yet is fit to work (according to the 'medically trained' assessor at ATOS).
Those are the raw practical facts of the situation. They say nothing about the raw emotional facts of the situation.
After 38 years of living with M.E., CFS,,,call it what you like (I'm sick of the debating and arguments)...I am used to being
disbelieved,
humiliated,
spurned,
blamed,
unheard,
doubted,
ridiculed.
In the past, being a quiet and sensitive soul (yes that's how I really am ) my reaction, in my youth, was to back-off, retreat, roll over and give in. As I got older and bolder my reaction changed to
'F*** You. Watch this !'
However, the latter attitude requires energy...emotional and physical and that it something I lacked and lack still.
In all honesty, the last few years before I had to end work were steeped in the latter response: I was so determined to do what I wanted and needed to do (within work/career) after so many years of being held back by ill health that I moved heaven and earth .........and all the expense of my health.
I've learnt now that nothing is worth doing at the expense of my health and that my health is fragile and easily damaged by anything too demanding. So where does that leave me now ? How to respond to this latest insult, scourge of scorn and ridicule (for that's how it feels) ?
I am at a loss.
There is a huge part of me that really really wants to turn round and say
'Right, if you think I'm fit to work then I'll go back to f***ing work and work as hard as I can just to spite you. I'll go back and do all the stuff I've been wanting to do for the past 11 years whilst you have been looking down you nose at me, playing games with my health, happier to bung me my Incapacit Benefit than really try to find out what it wrong with me and help me recover'
'I'll stick two fingers up to you now that your lack of real interest in me doesn't suit you anymore: now that you want to turn the tables and blame me for being ill, and brand me a scrounger and malingerer and either throw me out with nothing or make me join a 'Work Group' so I can make cup cakes and castles out of shoe boxes'
The other part of me knows this wont work; that I need to stay calm and see what happens.
In the meantime I feel betrayed, exhausted, sacrficed, bewildered, very angry and inept because I am facing a faceless enemy who hides behind spin, statistics, lies and self-interest. As ever, it seems, I'm up against all the things I hate the most: bullying, deceipt, oneupmanship, competition whilst pasty-faced corrupt, ego-centris politcians and financiers snigger behind in their ivory towers.
To be honest, after so long and after so many posts written for M.E. Awareness Day I've run out of things to say. Life goes on and every now and then there seems to be another glimpse of hope on the horizon.
However, compared to many glimpses of the past, these little rays of hope do look promising but they need all the help they can get in terms of support and finance so I would direct you to The Whittemore Peterson Institute. This private research facility in Reno Nevada has made real breakthroughs recently and you can make a donation by going here.
Alternatively, and if you would like to get something for your money as well as helping to fund research you can go here where you will find a range of greeting cards, prints etc which have been designed by people with M.E. All the profits go to XMRV research at the WPI. The card project was created by LeeLee Ingram who is an artist and performer living with M.E.
Thought it easier to respond to all those comments to my last post by writing another.
Firstly, thank you so much for all the support, advice and suggestions.
Looking back at the post yesterday I felt quite embarassed at writing such a whingey, depressing diatribe. I try to be upbeat and positive and maintain a kind of 'just get on with it' attitude. However, having mentioned this on Facebook I was reminded that actually it's OK to admit to being down once in a while and, actually, if the boot was on the other foot i.e if I was responding to such a post I'd say the same as all of you. I'm just not good at giving myself permission to be negative --- in public anyway.
It was actually an outpouring based upon several days of feeling slightly unwell, with a bad back and everything, everything being so difficult and complicated --- not actually because of my health problems but more down to the fact of other aspects of my life here. Having a disabled child and a very old and disabled dog makes things much more difficult for anyone: even trying to find the right car. I bought a 'new' car just before Xmas and it has been distastrous: we can't get my son's mobility scooter in it as well as all the shopping; the boot is too high for the dog to jump into so I have to lift him in and out (hence the bad back), the seat is all wrong for me and the person who owned it before me saturated everything in Febreeze and despite all my attempts I cannot iradicate the chemical smell. We wanted to book a holiday but everywhere was wrong because of my particular needs or my son's ...too smelly, too hilly, no proper disabled access etc etc etc. It just seemed like nothing was easy earlier in the week.
I know too that my partner working from home will be O.K. We've been together a longgggggg time and adapated to no end of different situations. I felt even better once I'd made a start (if only a small one) on redecorating what will become the office. I just needed to take control, make plans.
I DO make plans, 'to do' lists and keep to them mainly but in the last post I was thinking of the sort of 'blue sky' lists I used to make...the big dreams...the progression of a career, creating new work, paintings, films, moving etc. That's what I miss. Everything now is so diluted and small and minor. Whenever I have tried to go for big things (which take a lot of time and effort) I have been thwarted and left undone. For years I have had to settle for everything being small and piecemeal, fractured instead of the constant moving forward and earlier this week it just really got to me.
I need to pull in my horns and accept my own pace and carve out my own space
Thank you all again for all the support. It's great to have such a wonderful sounding board
It's a big year Chez Cusp...lots of anniversaries and big birthdays. I don't really like big occasions...too much pressure and I believe the stress of that is leading to all the dreams I've been having: bizarre, twisted dreams. Dreams about the past, the future, what I've lost, what might happen in the future. Last week, decent sleep was especially precious as each night I closed my eyes and off I went into another technicolour drama-roller-coaster of old memories all mixed up....like some demon had decided to remind me of all the things I used to do but put it through a blender first.
I feel like there's a lot of reassessing going on under the surface. Landmarks have been reached and its time to move forward but I'm unsure about how or what.
In the normal scheme of things I'd have drawn up a plan with bullet points and worked through it. I was always good at that:..'this is the plan' was a joke in our house because that was how I worked...dreams, goals and plans. But nothing is normal Chez Cusp....especially inside Cusp where I'm never sure how I'll feel physically or, at the moment, emotionally. Its not that I'm sad. I just feel sort of pressured that time is marching on, I've been living with serious M.E. for ten years and not much has changed for me ...and I want it to.
Recently, a very good blogging chum was writing about loss of independence due to ill health and how that can affect self-confidence, relationships, self-image. J is a real fighter....gets knocked down and gets back up. I get knocked down, lie there stewing ad thinking and then get up again. I know that being ill enough to keep me at home for 10 years has knocked my confidence. I get little glimpses of the old me...the confident in-charge me, the gung-ho me...and instead of helping me to think 'oh that part's still there' it undermines me because I know its not sustainable: I can only keep it up for so long.
The threat of being assessed for my ability to return to work terrifies me. I just don't know how I would manage going to work. I know that most days I can put on the face...especially in interview/meetings type scenarios and probably come across as confident, personable and capable (unless its a day where I cant find the words and barely remember my own name) but I have lost so much. The skills I had are still there but the whole art scene and funding scene has changed. The people I networked with have moved on. The contacts are lost...and most of all I can only do all that for a short period of time. I'm like a old clockwork toy that runs out of 'wind up not long after you've set me down on the floor
At home things are in flux. We have had the threat of my partner's job ending for months. Now it seems like it might be OK except there'll be more working at home (because office space is scarce so they'll all be gievn a laptop and work at home). To be honest that feels like another piece of my independence lost: for all the company and help I get I need a few days alone in the house, to move about at my own pace ( i.e slowly, amblingly) to not have to worry about other people because, to be honest, even after all this time, I still don't really go at MY pace when other people are at home with me: I kind of try to keep up with the flow and then cover up my 'failings'. It's because I still feel embarassed, ashamed of the fact that I'm not the person I was and because I hate the feeling of lost independence; I need someone else to do a pick up of kids or drive to the supermarket but if I can do it myself (even if its too much) I will because I dont want to give in, be dependent, be frail.
Some of this stuff comes from habit: I spent so long covering up my illness at work for so many years that it's kind of second nature. Some of it is much much deeper stuff from childhood..from being seen as weak and vulnerable and being determined that I wouldn't be perceived like that anymore. I remember an incident in A&E a few years back when I'd had a nasty fall and ripped out three fingernails. The nurse took one look at me and said 'We must get you in a wheelchair. You look so pale and we dont want you falling over in here.' She was saying it because she was concerned, caring.....and I was livid, furious at being 'put' in a wheelchair. I felt like it was a punishment for being so stupid as to fall over in the first place ....so everyone could look at me and point the finger in the waiting room 'Look at that goon..can't even buy 5 things in Tesco without falling over'
So many losses and such frustration. So much I want to do and so hard to do them. So sick of still being in thrall to that dark shadow and sick of being incapable of drawing up a plan and working through it: 'This is the plan'......what's the point ?
I got a real flashback/pang yesterday...first in a long time: waiting for my daughter to come out from after school club.
All the other parents waiting in their cars and a beautiful Spring evening. I'd had a very rough day...a lot of pain, digetsive problems, fatigue..spent an hour on bed in afternoon with TENS machine.
I looked at the other parents and thought...
'they're all normal (actually they may not be !)...they're all normal and have had normal days just getting on with stuff...been to work, been to the shops etc etc...I remember that and it's so long ago'
...and then immediately I got a flashback to when this really started in earnest: a day when I'd had a lieu day or afternoon off work and collected my daughter early from nursery .
I'd decided to take her to the seaside ..about 20 miles ...for an ice cream and a toddle by the sea. We got there, with me feeling jaded, and she didn't want to walk/toddle so I got the buggy from out of the car and pushed her a little way by the sea to her favourite spot where there's a rock garden.
I had to sit down ...winded, exhausted. I remember thinking,
'Oh God I've got to push her back to the car and drive home. I can't do it...I haven't got the energy....there's nothing there.'
Of course I had to...we had to get home.
She was about 18 months and I put on the jolly face as we licked our ice creams. I was terrified that my exhaustion and fear would show in my face. I somehow pushed her back to the car, changed her nappy, loaded the buugy and drove home...I knew something was really wrong. I collapsed washing up later....trying to act as if nothing was wrong, that it would all go away.
...and in the meantime I've been at home a lot, watching my career go down the pan, my life disintegrate, my daughter grow to a teenager, watching the other parents progress, get on with ordinary things that they take for granted....and I'm still in the same spot...watching every move, fearful, wondering if I can make it from my metaphorical seat in a rock garden to a car that could take me away from all this
Lately I've noticed there's a growing trend amongst the M.E. Community: those who have had the illness for a long time are being called 'veterans'. It's a term I hate. I know that in terms of dictionary definition 'veteran' means '....a person who has had long service or experience in a particular occupation or field' but in my mind I associate the word with people who have made a great contribution or been brave or done something marvellous...like soldiers in battle. They have something to celebrate.
As someone who was diagnosed 10 years ago and has probably had M.E. for 35 years I could be, have been, referred to as a veteran and yet I don't feel I have anything to celebrate; nor do I feel courageous, valiant or as if I have made any particular contribution in terms of M.E. It's just as it is...I'm me, I have M.E., I've had it a bloody long time and I've tried to make the best of what I have when I can...and everyone else's life, M.E. or not, is the same: we all have our ups and downs, all have our cards dealt and have to deal with that hand.
I'm beginning to think that there must be something in the air because there have been other bloggers posting about having the condition for a long time. Nasim has had M.E./Cocksackie since 1984 and wrote this piece last week. It rings more bells with me than anybody else's writing about long term M.E. because she speaks about the fact that how you feel , physically, becomes the 'default' -- it's just how it is and once you reach a certain stage or level of activity there's little else to do but just get on with things as best you can.
Rachel has also written an interesting piece today about her 4 year M.E. anniversary and the challenge that sets because she was told at diagnosis that most people with M.E. get better after 4 years or remain unwell. Of course, in the meantime, this supposition has been discredited but it still set a precedent that is difficult to ignore.
My (edited) response was this: ...Oh its all so familiar and you put it very well. I reckon I’ve probably had M.E. for 35 years now … and I have managed a life in the periods where ‘it’ was at a point where I could do stuff (with rests) and all the ducking and diving; got married, did a degree, developed a career, had children…all that whilst never really being well in the same sense as other people…just well enough, active enough to manage those things if I was careful, very careful.
I was diagnosed 10 years ago and really feel like I’ve tried everything that I feel is appropriate for me. There are those who would encourage me to still keep trying other stuff, other medication, other treatments but to be honest I’m sick of it all and none of it works very well so as long as I can get by I feel I have to be happy with my lot and grateful its not worse or like it was in relapse two years ago.
Maybe 4 or 5 years ago I remember going to my GP and saying that I seemed to have improved from initial diagnosis (that was an understatement…being bedridden, unable to see or hear or speak properly was hell) and yet I had reached a plateau and what could he suggest to push me forward…and the answer was ‘nothing’ and ‘I don't know’.
I was furious at the time but I guess he was just being honest. Sometimes things are just as they are and we have to try to accept and encourage those around us to accept too....'
and that's how I feel...that, despite all the razzmatazz about XMRV and anti-virals, despite all the hoo-hah about recognition of the illness, despite all the Cheneys, Teitelbaums, Protocols, Myhill, Lightning Process, Reverse Therapy, WPI...despite all that stuff I still have to go on living and I still have to get up in the morning, be grateful that I can (nowadays) , make sure the children are fed, warm, the dog walked and medicated (he's been very poorly), the house clean, the cupboards stocked, the clothes washed, the admin. done, the appointments made and kept....and....and....and.
But what would make a HUGE difference to me is if M.E. was recognised as a tough thing to live with whilst you are trying to live a life. Everyone talks about the symptoms but few people seem to talk about the 'living with'. My life would be easier if people recognised that difficulty and if I could live in a country where I/We were supported and assisted rather than sniped at and undermined by a Government that seems hell bent on making every vulnerable, or ill or disabled person's life increasingly difficult and precarious............
I don't want medals. I don't want a special title. I want recognition of the everyday difficulties of keeping my head above water and some recognition of the fact of how people with an unrecognised, unvalidated illness spend their lives ducking and diving, striving and trying and missing out on opportunities because they have to spend so much energy and time kind of 'going along with the lie' until they can't do it anymore and fall over into true chronic illness
Every new year seems to accentuate the focus on the challenges of the year ahead and the changes that may come. Some can be foreseen. Some come as a surprise or shock.
This new year the Cusp household knows that there will be changes on the work front. My partner was told just before Xmas that, come the end of March ,there will be no more job: the charity will run out of money. Pity really, because if they could have just hung on until September the Association would have been 75 years old...75 years of helping and supporting blind and visually impaired people in our district and now, thanks to swingeing cuts and the new Coalition's climate of 'save every penny and to hell with the weak and vulnerable...' it will be no more.
It isn't all doom and gloom. Partner has many strings to bow and there are all sorts of possibilities. In a strange way it is kind of exciting...looking at all the possibilities and opportunities for reinvention.
Yesterday we had a visit from an old friend,R. Partner and R were at Art School together when punk was new, possibilities were boundless and fear of the future was an unknown. R is a gentle and thoughtful chap. Over the past few years he has had his share of troubles and come out the other side. A year ago he lost the job he had been doing for 20 years and has reinvented himself with a complete change of career.
I sat back and listened to these two old chums chatting about the old days and the new days to come; both saying how at this age (nearly 50) they were old enough to be able to draw on experience and maturity yet still young enough to take on new challenges, new careers.
I was sort of included in the conversation as if I was one of them. At one point I was even asked if I would like to join them in a plan to do artwork with older people....which is what I used to do before I HAD to give up work. It hadn't occurred to either of them that, whilst they were talking about losing a job through redundancy ---- with the possibility of retraining or creating a new opportunity, I had lost my job through ill health with no hope of retraining or new exciting possibilities. There was to be no retraining for me, no new challenges on the work front, no exciting reinvention... just the challenge of trying to get by from day to day, to keep breathing. It left me feeling that neither of them really understood how it must be to suddenly have no job and have no idea if you could ever return to work...not because you'd be unable to find another job or create a new opportunity but because just surviving, just breathing would be more than enough to cope with.
In any case I almost certainly already have other people wondering what sort of work I could return to : namely the DWP (Dept of Work & Pensions) who will surely some day send me a letter 'inviting' me to go for my ESA assessment to see if I am capable of returning to work. Based on the experience of other people with M.E. I am pretty sure they will find me capable and so I wait with bated breath and wonder what on earth I could do that would be even vaguely meaningful and productive and yet still leave me capable of functioning at home where I attempt to keep up with the daily grind of necessary duties so that this house and home moves along smoothly.
One idea I came across in a moment of whimsy and fear is to follow this opportunity trail which is currently appearing in local Job Centres. I could work from home, spin a few yarns and 'increase my wedge'. Do you think I'd have to wear a bejewelled scarf round my head and gaze into a crystal ball whilst on the phone. Makes you wonder about the psychic and esoteric industry !
.......actually she'd probably be happier with a cure for M.E. because she doesn't seem able to stand long enough to operate the wretched thing at the moment !.....oh and a halt to all the back-stabbing and ego building of the scientists and psyches...
but in the short term let's try and put it all behind us for a few days and enjoy Christmas as much as we can.
Merry Christmas to all my blogging chums and here's to a fulfilling, healthier, progressive and healthier New Year xxx
In the past few days we have had to have a real push to try and get another room finished in this, seemingly, endless saga of decorating...and no I don't mean tinsel and baubles and trees...I mean Polyfilla and rollers, paint and sandpaper, emulsion and vinyl silk ...and wallpaper. I spent two whole days (with minimal rest periods) wallpapering over the weekend and into this week and I am tired.
This tiredness is veering between fatigue that pleads for me to go back to bed and wired/tired where adrenaline whooshes through me like a torrent and I am almost hyper. Well...not almost...I am. Yesterday somebody said something to me that was perfectly mundane and yet somehow I found it amusing and laughed and laughed until I was crying ...happy tears but laughing all the same..at something not funny at all. Yesterday I was so nattery, nattery and so outside my boundaries whilst chatting to someone on Facebook that today I felt duty bound to send a message for being so over-the-top. I wasn't offensive and the recipient of this 'out-of-control-puppyness' was fine about it all (thank God) but I felt mortified. I felt like I had become the legless one at the party who has to go to everyone the next day and apologise for dancing on the table with your knickers on your head !
Jodi Bassett has written about these adrenaline surges here and now I think of it I realise that this has been going on for years. Whenever I'm tired but in a reasonable phase of health (i.e.not at death's door) I become almost manic....rushing about too quickly, talking at nineteen to the dozen, stumbling over words, rushing through to do lists.....until I go 'phut! I seem to have no internal regulator that knows how to pace. Is that because I have had M.E. for so long....over 35 years....or was I always like this anyway and that has led me to become more ill ?
Certainly there does seem to be a common thread running through the lives of people I know who have M.E.: prone to perfectionism, wanting to care for other people, wanting to ensure everyone and everything is 'all right, putting other people before oneself, and pushing on...regardless...always pushing on.
I've started reading Toni Bernhard's book 'How to Be Sick'. Almost everyone I know in the 'M.E. Community is reading it too. Once again there in black and white is the story of another caring, conscientious individual; always trying to do her best by her spouse, children, grandchildren, her students (she was a Law Professor) ...going back to work despite everything, despite it being obvious (in hindsight...always in hindsight !!!) that it would be better to stop working, stop doing and just be. This is not intended as any criticism of Toni...just an observation: an observation of how many of us seem to follow that path. I know I did. Time and again I fell and time and again I got up, dusted myself off and went back into the fray.
What interests me is the lessons that Toni says she has learnt/is learning from being so ill for so long (she first became ill at the about the same time I was diagnose in 2001). It would seem that Toni has always been interested in exploring a spiritual path and in particular Buddhism and so she has used that experience and knowledge to try and make sense of what has happened to her. Interestingly too, I have also felt an affinity with Buddhism and yet not had the same time or 'push' to explore that way of seeing the world to the extent of Toni. Nevertheless I still find myself nodding all the time I read the book and there does seem to be only one way to really deal with being unwell: to somehow yield to it and accept it and understand that somehow, for some reason this is how it is for you and how it is meant to be. No matter how uncomfortable, how gruelling, how miserable...this is how it is. No amount of wriggling and anger and frustration (though God only knows we all feel those things because we are human, because we are imperfect) will 'fix' things. For now, it is as it is and once that acceptance is there, the situation becomes a little easier to bear.
I suppose this post and the last have a common theme...in that acceptance seems to be the way: not giving in but resting back and 'watching the day' as someone once told me and trusting that somehow 'all will be well'
Many random thoughts rattling through my head so this will be a stream, (more like a trickle) of consciousness: you have been warned.
Thinking about how people deal with their dilemmas, BIG life events and tragedies.
Recently I've been brought up close to how the rug can just be pulled from under you. I had my wisdom teeth extracted and, as anyone who has followed this blog, that was a HUGE deal for me: the build up was two years with no end of negotiations and 'wriggling' on my part and finally I managed to psyche myself up to going and getting the job done. There is no way to communicate how pleased I was to have it over with or how proud I was of myself for having done it. I was literally ...LITERALLY...jumping for joy.
The pay off is that the anaesthetic and antibiotics that I had afterwards have not suited me at all. I can feel deep slippage in the progress department and it feels mighty scary...especially three weeks (or less) before Xmas and the son's 16th birthday. Just when I need to feel some sense of stability and safety in my energy envelope I feel anything but and I'm treading on thin ice. I know I've been here before and I know I have managed to pull out of it with careful management and pacing but, still, it scares me because before that tooth extraction I was feeling fairly chipper and, at times, ...whisper it....almost normal..or normal for me and the relapse of last year stills haunts me.
Christmas for me is a double-edged sword. On the one hand I love buying and making presents for other people and my loved ones. On the other hand there have been many Christmases which hold horrible memories that I don't want to revisit and yet I feel forced to do so because its Christmas and the sounds, smells and 'jolly festivities' are everywhere now...or if you shop at the Co-Op they've been everywhere since the end of August !
I wish I could be more open, more honest, more forthright in this blog. I so admire other people who blog who have the ability to share so much but, in all honesty, I can't. It's just not in me to be too open about myself and that because of the past. Even writing that is scary to me ...........Its just that if things were going to go wrong they seem to have done so at or very near Christmas so that, as for many people, the older I get, the more ghosts and bad memories fill the Christmas space.
Yesterday I was in town and turned round to see an old work colleague standing just near me. We haven't seen each other for about 7 years. She is a truly amazing person. She has overcome no end of adversity, runs a small charity, has brought up three children of her own, 4 foster children and adopted two and as long as I've known her (about 20 years) she has always had a smile on her face: everything is seen as an opportunity, as a possibility for something new and something good...even when a situation facing her or someone she knows looks so grim.
When our son was born and it turned out that he had all sorts of difficulties ( there had been no warning...it was a perfectly normal pregnancy) she was one of the first people to phone. She was so positive, so 'up', so full of hope and even though I knew she meant well I was furious with her. I couldn't see how she could be like that .....here we were with a totally unexpected outcome, a first, new baby at Xmas in need of all sorts of tests, an operation, a diagnosis and the hospitals all working at 25% strength because it was Christmas and we were told we would have to wait until the New Year...and yet she was hopeful and joyous !
Of course in the end she was right.....that baby is about to be 16 and, though there are difficulties and the thought of him going away from school and launching in to the world is scary ....he is lovely, personable and managing so well academically and socially and it was only after yesterday's meeting that I could see exactly what she meant in that phone call so long ago.
Though it's not in my nature I have to learn to be more like that friend and other people I've met more recently who go ahead with real fortitude and positivity. My trust was shattered years and years ago but I have to have faith in the future and know it will be O.K.: this seems to be my lifelong struggle, the lesson I have to learn ---- to have to constantly remind myself that all will be well and to have more faith in myself and a good outcome
Long time no post but its been impossible to keep everything going with all the building work here and I couldn’t see the point in posting to my blog when I really had little to say except that there was too much going on
Anyroadup, what I wanted to write about now was relationships.
As you know I’ve kind of kept up contact with some of you and other new Interwebby chums through FaceBook. Its been really good to maintain some kind of dialogue and to ‘meet new people and in that time, too, a number of new bloggers with M.E. have also emerged and it has been touching to see how the ‘old guard’ rally round to advise, comfort and advise newer ‘recruits.’
One of the issues that has come up in conversations has been maintaining relationships when you have a chronic condition like M.E. and also the way people deal with living with someone else or living alone.
It seems that the old adage of the other mans grass being greener holds true: those who live alone almost envy those of us who live with a partner. Those of us who live with someone sometimes wish we were alone.
As an only child I grew up being happy with my own company. For a while, many moons ago, I lived entirely alone for about 4 years and was quite content. It was the early 80s and unemployment was rife. I was living in an isolated spot with almost no public transport and few amenities. I had a car but as I was also unemployed I could barely afford to run it so petrol was saved for essentials like going to a shop and library once a fortnight or, even more importantly, being able to drive to interviews. Of course this was also before I was ill. Well, I say that, but I should say, before I was diagnosed. There were periods when I felt very unwell in an M.E. sort of way but I had to persevere. There was no-one else to depend upon and so I rested and paced and metered out my meagre resources in terms of personal energy and finances and somehow kept going until one day I managed to get a job. Sometimes I was lonely (this period followed the break-up of a very important relationship and I was still pining if I am honest) and sometimes I was sad and sometimes I was scared but somehow I got through.
In the past ten years or so, of course, I have been ‘officially ill’ and also living not only with a partner but with two children…and assorted animals in a situation that’s repeated the world over: parents trying to keep heads above water, financially, psychologically etc. and, in our case, with the ever looming spectre of M.E. and one child with disabilities who has many, many hospital appointments and many, many meetings…with doctors, with school, with educational advisors, physiotherapists, psychologists, dieticians, ophthalmologists, surgeons, etc etc etc. and I have been only able to get to some of these wince being unwell and always felt guilt about not being able to share the load as I would have done and as I used to do.
My M.E. chums who live alone seem to almost envy the little tribe I live in:the activity, the continuity, the opportunity for contact with people I care about and who care about me, the hope and future I can see developing in my children.The M.E. chums who live ‘en famille’ would love to have more space in which to almost connect with themselves and to have what they have come to see as a luxury i.e. that is time where one doesn’t have to explain oneself: how one is feeling emotionally or physically, to be further away from all the guilt that goes with having to postpone events, having to say “I’m sorry I can’t do that today…” or “ …You go…I’ll be OK here’ (when really you ache to go too and are sick of being left behind) of not being there at the partners work ‘do’ or the child’s concert or, alternatively, going to such events and feeling absolutely frightful and then having to spend days recovering because you dared to go to a school Carol Concert and have to reality of your condition rubbed in your nose.
In the end I guess neither situation is ideal or easy. I would hate to have been alone at times in the last 10 years. I cannot imagine how I would have managed or what it would be like to have strangers coming in to my home to care for me. On the other hand it is impossible to explain how burdensome it is to feel a burden, to deal with the frustration of not being able to do what you want to do when you want to do it without having to ask someone for help, to not be able to support someone you love in the way you would have done if you were well or to feel like you are holding them back.
Very recently, I was alerted to a piece in a newspaper where a celebrity (for want of a better word) gardener had written about her experience of living with her husband who has M.E. There was the usual description of the illness and how hard it was to watch a previously energetic man stay in bed most days and how difficult it was to come to terms with such a sudden change in his whole way of being.There was also a descripton of how hard it was to manage financially and how the gardener found herself trying to care for the husband, the children and work even harder to make ends meet and feel the isolation of the carer: how few people could understand the difficulties, that few people came round anymore because the whole situation was perplexing.
And then came the crux of the story --- there was the partial solution to the problem.The gardener invited friends and relatives to join her at her allotment where they all cheerily shared the work of growing vegetables and shared the childcare and shared the company. And then there was the accompanying happy picture of the nice gardener lady and the husband with M.E…..standing by the door to the allotment shed…smiling…with the husband with M.E. dressed (probably for the first time in 3 days) and holding onto the open door to stay upright (expect few people would have noticed that last bit).
So it was all OK then: the wife/carer had found a partial way through her dilemma, and there was company and happy children and a worthwhile and productive activity………….and something,…. something really needled me.
It REALLY got to me.
Was it the smugness ?
Was it the lovely ‘Guardian-y’., horticulturally, lovely, fresh veggie, Cath Kidson-y, Marath Stewart-y loveliness of it all…when that image/scenario contrasts with our own dear home ?
Was it the rather uncharitable, nasty envious side of me ?
...or was it that there really wasn’t much in there about the husband ?
about the person with M.E. ?
...yes, I said the PERSON with M.E.
Because he had been reduced to a set of symptoms, and a cause of all the difficulties and the sorrow (however unwittingly and however unintentionally). Nowhere was there any mention of how he might be feeling when his wife and children were out on the allotment and he was at home, alone, trying to be noble and charitable and feel pleased for them.
THAT was what needled me.
THAT was what really got to me and which made me feel guilty AGAIN…because it wasn’t and isn’t noble and I know from Sunday School that Jesus bids me shine with a pure clear light and I couldn’t…couldn’t be nice about it.
Whenever I see stories in newspapers or magazines about M.E. we…the PWME are always reduced to symptoms or ‘brave but tragic’. Either way we are portrayed as a set of symptoms with no other life and when we are spoken about as part of a family there is an emphasis on the carer.
Now, having been a carer (professionally and personally) I know how hard and difficult that role can be. I understand the isolation, frustration and sorrow. On the other hand I also now understand how difficult it can be to be the person who is cared for….particularly when living with a condition that is so misunderstood and perplexing for other people.Is it just me or for those of you who are not living alone, do you find that people rarely ask how you are (because they are so used to you not being OK and don’t really want to know or understand anyway) but often say to your partner ‘Oh it must be so hard for you’ ?
Am I being unkind ? uncharitable ? or do people not understand that actually it’s hard for me too, hard for BOTH of us …to maintain a relationship that’s been skewed by circumstances, where the balance of responsibility, caring, decision-making, financial provision, dependability has been altered beyond recognition ?to try to ensure that we don’t allow the spectre to loom too large and spoil too much ? to come to terms with the fact that dreams and plans…as individuals and as a couple …have been turned on their head?
We must deal with what life throws at us. The life I have is not the one I envisaged. The childhood I have been able to give my children is not the one I envisaged though I have done my best not to let my condition impinge on their development or happiness. The things I thought I would do and the things I thought I would be able to support my partner in doing have gone by the wayside but we have made and do make the best of what we have….and I guess that’s what we all have to do. It’s no good looking at other people and thinking if only. The other man’s grass is green but just as full of moss and weeds as your own……………………….
As the song says
‘This is how life goes ... This is how MY life goes ... I have but only one ... And she is the one who chose me ... It's not hell ... It's not paradise..’
Well, I suppose for anyone who cares, you may have been wondering where I have been all this time: busy, dear reader, busy....with capitals .......B.U.S.Y.
Unusually the summer holidays have flown by all too quickly and it has been a test of strength and character to get through at times because not only have the children (and their chums) been at home for 6 weeks but also a whole team of builders finishing our extension. The building was supposed to be completed by the first week of the holidays. In the event they completed (more or less) in the last week . Most of the time it has been fine. Only one especially bad day stands out: we were looking after a friend's dog for a week and this coincided with a point in the building works where we needed 'all hands on deck'...namely 2 carpenters, 2 electricians, 3 plumbers, 2 labourers.
Nine builders, one senile dog (ours), one confused 'holiday' dog, two near-teenage children who want to lie in their beds and two rather fraught parents do not make for a good mix. Suffice to say that by 8 a.m. that day one child had risen in a filthy mood and, upon finding the electricity turned off (i.e no computer, no lights, no TV) stomped off to town, the other child was in tears because she wanted a shower and the water had just been turned off (resolved by taking her to kindly neighbour), senile dog had been accidentally trodden on, the plumbers had caused a leak in the header tank in the loft and then holiday dog decided to bite one of the electricians ankle ! Oh how we laughed.
Still, we are here and we have survived and now all (ALL ?!!!!! ..Cusp laughs slightly hysterically) we have to do is decorate the new rooms (bedroom, wet room, utility room, kitchen) and clean up and re-decorate the other rooms...3 bedrooms, living room, dining room and bathroom: so that should keep us out of trouble for a month or three.
The building has affected the whole house and now it is time to clean up and re-organise. Fortunately this phase coincides with the start of autumn...a season I love with gentle sunny days and a feeling of new beginnings and preparation.
When I get the opportunity to post again I shall do so but until then think of me up a ladder, filling in holes with plastic wood, emulsioning walls, cleaning carpets and putting things back where they belong.
We spent the afternoon at a local lake. We were there with our two children, their friends, our old dog and another who is staying with us whilst her 'Mum & Dad' are on holiday.
The lake is beautiful with hummocks surrounding it, ducks and swans on it and play areas and a river around it.
Today we arrived to find it was an Activities Day for children. The whole place was overwhelmed by small people and their Mums and Dads, Grandparents, Aunts and Uncles and dogs and ice cream vans and tents and stilt walkers. Amongst this bustling throng were marquees with Arts workshops: tie-dyeing, face painting, raft making, wheelie bin drumming, withie making, giant paintings, sculpture, pendants etc etc.
The quality of the instruction and the enthusiasm of the artists was wonderful and there were so many happy faces: proud children, proud parents, little boats held aloft, clay sculptures carefully carried back to cars.....
I saw all this and at first my heart sank. It always does when I see these sorts of events because its what I used to do, who I used to be. I started by running arts workshops, then organising small events, bigger events, Countywide events and training artists in how to facilitate workshops. I was good at it. I had all the right contacts, good ideas, unusual ideas. I could plan a good day or series of days and enthuse and surprise people.
When I became too ill to work I tried to go back to workshopping once or twice. It was disaster. It takes tremendous energy to organise and deliver a workshop...to galvanise people to tap into their creativity, support them, help them move forward ---quite apart from the logistics of travel, organization, packing up materials, putting them back etc etc. I just couldn't do it anymore.
Gradually my contact with that world evaporated...I was ill at home, 'friends' didn't call anymore, busy with their own lives. If we went to something like a fete or a school fayre I was suddenly brought up close to that world and all I felt was a huge sense of loss and sadness....like staring at a vast hole. I still did bits and pieces when the children were younger even though I felt so rough. I designed and painted all the scenery for theXmasplays for 5 years, did publicity and posters and flyers, did face painting for school and church fetes in the summer. I enjoyed it too but it wasn't the same..wasn't at the same level and there wasn't the same camaraderie you get between artists who do it regularly and are working the same circuit.
Yesterday was different. At first my heart sank and then something else happened because I realised that world I had pined for was over for me. It was a part of my past : 'been there, done that, got the T shirt' as the saying goes.
The workshops were primarily for little children up to about 8 years of age. Our children are 12 and 15. The parents were right in there with their kids...helping to paint and decorate and embellish, reassuring, instructing explaining and it was suddenly like watching myself long ago. I've already done all that: my children don't need that level of support anymore and although its lovely to watch Ifeel like a bystander ...but in a good way because I've done that bit of my role as a parent in the same way I don't have to walk around with a spare nappie (diaper) and babywipes in my bag anymore in case someone has an 'accident'.
I can move on and be someone else, do something else. We're all moving forward and it feels good
Well it might not be Christmas but to paraphrase Mr Lennon
'...what have you done ?: another year over, and a new one just begun...'
and in a sense it is another year over because I just had another birthday (don't ask which one...let's just say that the candles on the cake set off the smoke alarms !)
I was wondering why it is that I dislike birthdays so much. Every year they roll around and every year as the big day approaches I get more and more gloomy and grumpy and just want to hide so I can re-emerge when it's all over.
Don't get me wrong: I really appreciate the warm wishes etc and the trouble people go to. My birthday was celebrated on Sunday and we had a lovely day by the sea with a splendid picnic and beautiful weather and there was an air show/display ...all my favourite things....but it took so much emotional effort to get myself there and get into it because I woke up with that terrible dragging feeling of not wanting to get out of bed at all or face presents or cards or peoples' smiles. What a misery I am !
I think it's because I can't really see what there is to celebrate. I just feel like I've survived another year. It isn't all to do with being unwell either. I was like this before I got really unwell. I've got more and more like it since I turned 40 and that was a good while ago.
Some of it is midlife stuff: the dreams, expectations, hopes, expectations from youth unfulfilled.
Some of it is about being unwell: am I any better ? what have I achieved ? what can I plan for the future ? Doesn't feel like I can reply with anything positive to any of those questions.
And some of it is to do with hating to be the centre of attention, being the focus. I'd much rather work behind the scenes, much rather buy other people presents, arrange other peoples' parties etc.
One of the difficulties of having a chronic condition which keeps you away from normal life so much is that you get 'out of the loop', disconnected and days can just drift away. One of the hardest things for me is to try and manage the balance between the things I have to do and the things I want to do. Having children means there are always a whole load of things I have to do: cleaning, washing and ironing clothes, arranging appointments, tidying up, cooking, birthdays, help with homework --- all the usual stuff that parents have to do . I'm happy to do them but it takes time and effort and by the time all that is done there's little time for me and not much energy left. (That's why this blog is important because its for nobody else).
Recently, as I said in my last post, I have been branching out more on the internet and 'meeting' new people...people with M.E. It has interested me that for many of them their difficulties in trying to have some sort of life are quite different to mine. Many are really quite isolated and have no real family, let alone children. It seems that they almost envy me. I can see why...in their heads they see the company and the relationships between us. Of course that is something I value greatly....I love my children with all my heart and longed to have them but in many ways it makes management of my condition much, much harder and there is terrible pressure to try and keep up with all they need and want to do.
So another year over and what have I done? What will I do?
Well, I shall try to maintain some sort of creative practice because the Creative for a Second project really showed me how important that aspect of my life is to me. I shall try to encourage more independence in my children because that's where they need to head and that helps me too and I shall try to maintain a positive outlook and explore more about the HSP side of me and some of the reasons why some emotions drain me more than others.
Recently I've branched out in terms of exploring the Internet and found even more lovely and interesting people to get to know. Many of them also have M.E./CFS or some other chronic illness.
The Internet can be a wonderful tool through which to meet people, gain support, new knowledge and experiences. What has been interesting and thought provoking for me is to gradually find out more and more about these new acquaintances and to compare notes.
As ever, with relationships of any kind, I have 'clicked' with some people more than others and, again, as in any group of people, there has been more exchange of experiences with some than with others.
Names or situations are not relevant here and I am honoured that people have been willing to share stuff with me: as a virtual 'friend' and, simultaneously a virtual (in the old-fashioned sense) stranger, it may be far easier and less threatening to tell me stuff than to tell a 'real' person but still, I always feel honoured if people share a part of themselves.
Now, it may be that like attracts like but it has to be said (well it doesn't have to but I'm going to anyway) that there does seem to be a common thread running through the lives of many people I have met who have M.E./CFS: that they have had some really bad experiences in their lives and there is real trauma. Without going into any details I cannot exclude myself from such a group and it's interesting that I don't go into details precisely because of the nature of my past.
Suffice to say that I cannot help but wonder if there really is some sort of connection between people who succumb to M.E. and people who do not. Let me make it perfectly clear that I do believe 100% that M.E. is a genuine physical illness. Recently, there has been an awful lot of publicity and conversation about the XMRV virus and the possibility ( may well be more than a possibility) that this is one origin of the condition called M.E. However, it also seems that many people carry the virus and yet are not unwell...so what makes the difference ? Are the people who become unwell predisposed in some physiological way or is their immune system also compromised by the way they handle stresses and trauma or compromised because there has been so much trauma ?
There seems to be a consensus amongst PWME that stress makes our symptoms worse and certainly for me I know that, just before I was diagnosed, I had had a long, long period of stress ( about 7 years of one crisis after another where it was me who was expected to sort everything out and cope and support other people). I also know that last year's relapse was preceded by a series of difficult situations. I held up well and coped with it all until eventually everything became too much, my health failed and it took me almost 9 months to begin to pick up again.
As well as getting to know more PWME recently I have also been exploring other ideas for almost a year and one of these is the notion of the HSP or the Highly Sensitive Person:
' a person having the innate trait of high psychological sensitivity (or innate sensitiveness as Carl Jung originally coined it).' According to Elaine N. Aron highly sensitive people comprise about a fifth of the population and may process sensory data much more deeply and thoroughly due to a biological difference in their nervous systems'
Certainly, as soon as I found out about this theory, I felt an affinity and recognition and I subsequently found that there is a whole community of people who consider themselves to be HSP. There are forums, magazines, groups, retreats etc etc and guess what ?: they are nearly all in America and not in the U.K..
Now, to we stiff upper lipped Britishers, this HSP stuff may well smack of 'typical' West Coast/ HippyTrippy/ Oprah American 'nonsense' (sorry any U.S. readers but this is how this sort of stuff is viewed here :' Oh that's so American') but, to me, there seems some sense to it. It rings a bell somewhere...not just since I had M.E. (which is forever ..well about 37 years) but since forever: all my childhood memories, all my teenage memories are coloured by being exactly as HSPs are supposed to be. Many of my adult memories are filled with experiences of trying to deal with feeling out of sync, too sensitive and trying to find ways to be like other people and squeeze myself into a tight, tight box.
I have joined some of the HSPInternet news and discussion groups and sometimes I find myself thinking (and sometimes saying aloud) 'Oh for God's sake..get a life, get a grip, just get on with it '. This is very un-HSP, very insensitive very 'un-empathetic' but there is a kind of anger in me I think because I probably feel that that is what I have had to do in order to survive for so long...just get on with it despite 'it' being so difficult so why can't these other people ?: not very charitable of me.
The 'it' might be just life, just relating, just trying to be like everyone else when I just don't feel that way, don't respond that way. Eventually of course one becomes hardened, becomes cut off from one's true self because...well because it's easier in some ways to appear 'normal' but inside it gets ever, ever harder. When the crunch comes and there are too many stressors and if or when one of those stressors is a physical illness, then the body breaks down and the whole house of cards that has been built so carefully, so precariously by the HSP falls to the ground.
So here I am being brave: risking ridicule for allying myself to hippytrippy 'American navel-gazing nonsense', risking wrath for suggesting that maybe stress and sensitivity and innate vulnerability may have something to do with why some people succumb to M.E.
I may have been lucky but virtually all the PWME I have met through the Internet have also seemed to be sensitive, thoughtful, creative, vulnerable, giving: the sort of people I'm glad to know, the sort of people who seem rare in the real world. Perhaps it's easier to appear to be that pleasant on the web. Your personality, your response can be edited by yourself so that you appear in the best or better light. I think I appear to many to be quite jolly. A lot of the time I am but I have another side that's gloomy and brooding and feeling uncomfortable and angry that you rarely see here. However, my sensitivity or my 'antennae' as I have always called them, tell me that the people I know through the Internet are good people and are equally so in the real world. They are people who I would enjoy knowing if they lived up the road instead of the other side of the UK or half way around the world. and the common thread is that they have a particular sensitivity and innate gentleness.
Is there a link ? I don't know but I feel there is.
I'd love to know what you think.
* I apologise if this post is rambling. I'm particularly tired at the moment and trying to write this with a background of drilling and hammering and builders all through the house.
Here is my second piece of work for the C4a 2nd Project. It's a series of seven images called 'Is it All in my Head?' and tries to deal with conflicting emotions around having a chronic illness which some people don't believe in.
#1 Is It All in my Head ?
# 2 What if they're right ? What if I'm Mad ?
#3 Praying for a Miracle: Less Talk, Less Arguing, More Action PLEASE
At the beginning of the year, Kirrily Anderson, curator and organiser of the 'Creative for a Second' project approached me to see if I would like to be part of her second project.
The project is about and for creativity and people with M.E. Kirrily lives in Australia and this 2010 project consists of journals being sent to participants all over the world. They can write, draw paint, include photographs...put whatever they like in the journal for the two weeks it stays with them. At the end of that period the journal must be sent on to the next participant and finally back to Kirrily so that she can collate the work for an exhibition.
So far there are 6 journals and, I think, about 60 participants. There is a Facebook so we can share what we have been creating and the range of work is amazing.
Last week the journal, which is about 5.5" x 5", dropped onto my mat. It was my turn.
So far , I have been creating a little photographic triptych called 'Dead Rabbit'. The images are photos, layered on top of each other, mounted on card and then stitched...some with rabbit fur.
m.e. m.e.m.e.
I saw this trapped dead rabbit and thought of m.e.
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.
