Desperate and Dateless

I’ve been happily married for three and a half decades. So it’s a long time since I sat by the phone waiting for that special call. But trying to get community help for my adult daughter with a chronic illness has taken me back to that world faster than any Tardis.

I know that budgets are tight, it’s the end of the financial year, and the industry is under reform. But if I – a university graduate who has worked in the system, with English as a first language – am finding it impossible to negotiate, what hope is there for those who are less proficient in English and the ways of Government Departments?

I made the first approach about 2 months ago. A very helpful young woman in an umbrella organisation – let’s call it service A – gave me some ideas, and promised a follow up email. Which failed to eventuate. But I left several messages on phone numbers that she had suggested.

We did get through to service B. Trying to promote her independence, I had suggested my daughter make the call.  Telephones are difficult for her because of problems with concentration, as well as the energy needed to hold the phone. After being on hold for some time, she answered a long list of questions, only to be told their books are closed. So why ask the questions? (Service C later told me they always do this, but they do occasionally have places at the beginning of the month.)

Some days later service D returned my call. They don’t offer community services directly, but are a secondary referral point. But another very helpful person gave me another list of phone numbers. More messages left.

Service E was a winner. About a month after I made the initial approach, and several  phone calls later, someone came to do an assessment. She had lots of suggestions (more phone calls to make), but also was able to give us some practical help. She has made a referral to Service F (still waiting for them) and referred us to person B in her organisation. And person B is yet to call us.

Meanwhile service G returned my call. I was in the city, with poor telephone reception. So after a bit of telephone tag, with me writing phone numbers on my hand (I had a pen but no paper), we made contact. Yes, they could provide personal care. But someone else would call to make a time for the assessment. Guess what – I am still waiting. But I have left another message. (After choosing the option to stay on the line three times, I was transferred  to someone’s message bank anyway).

This week person A – the only person who has offered practical help and who only works one day a week – rang to report  progress. She is about to go on leave for six weeks. But she has given my details to person D, and they will be in touch.

The other helpful person – person E at service H – spent a long time talking to me, said that they’d be able to help, but she was too busy to do a formal intake. She also suggested that Tuesday and Wednesday were the best days for ringing. Of course, the long weekend changed that.

By now I was experiencing tension  headaches so I went to see my doctor. Who spent 50 minutes offering (mainly useless) suggestions for my daughter’s condition – which she admits to knowing nothing about. She did suggest residential respite care while we are away next month. And that I’d better get my liver function checked in case I was overdosing myself with the therapeutic wine bottle.

I discussed the possibility of residential care with my daughter, and she agreed. So I rang person E who was the best person to help with this. Oh no, she said.That’s not an option. The only place that would take her would be a mental health facility. Not appropriate at all. But we did start the intake process. She didn’t seem as friendly and helpful as the first time I spoke to her.  I thought it was because I’d rung on a Thursday. But soon she confessed that she had had a birthday recently, and she suspected that she would be called away for cake. True enough. She had to eat cake. And the promised returned phone call to complete the intake hasn’t eventuated.

So after about eight weeks,  nine organisations (service I is yet another possibility), countless phone calls, hours and days waiting and hoping for people to ring me, we are no further advanced. We have promises but nothing concrete.

I am about to take matters in my own hand. Nice me is gone. I will be making harassing phone calls every day. If I can get through to a person. Waiting for those teenage boys to ring was nothing compared to this.

ME/CFS: an invisible illness

mecfs

I don’t have a vast number of Facebook friends. Yet three of them     have  participated in different fundraisers for cancer research/support in the  past eight days.

 

I know lots of people who have had cancer – my husband, my sister in-law, a cousin, work colleagues, friends and friends of friends. Most of them are still alive and, apart from check-ups, living a normal life.

My daughter has had ME/CFS for fifteen years. She is among the 25% of those with ME/CFS who are “severely affected.” For her this means pain, social isolation and dependence on us for support while her brother, her friends and peers are getting on with life. She can get out occasionally and she doesn’t require tube-feeding, so she remains better off than some. But her need to move home for support has scuttled our retirement plans.

If you get a diagnosis of cancer there are treatment pathways and support groups. People bring you casseroles and give you hugs.

If you get a diagnosis of ME/CFS you’re told that there is no treatment and no cure. And that’s if you’re lucky enough to get a diagnosis. People are still told it’s a psychiatric disorder (but hey, they said that about asthma fifty years ago). Snake oil merchants abound and it’s up to you try to sort out what can help your symptoms. Usually you just muddle along. If you have someone to help you through the maze you’re lucky, because ME/CFS will also affect your cognitive function.

I don’t wish either cancer or ME/CFS on anyone. Nor any of the many other misunderstood “invisible diseases.”

I just wish that funding was fairer, and that society would realise that, however scary cancer is, these days most cancers have a pretty good cure rate if detected early. ME/CFS is finally gaining international recognition. There is some promising research into what triggers it – including that from Queensland’s Griffith University. We can only hope that they – and other international centres with rigorous protocols and good results– get the money they need to continue to unravel the mystery.

NCNED 2015
National Centre for Neuroimmunology and Emerging Diseases ( NCNED) Queensland, lit up for ME/CFS awareness. May 2015

Further information on ME/CFS:

http://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases

http://www.emerge.org.au

 

Neighbours and friends

My mother always said she never needed a psychiatrist because she always had good neighbours. Of course in those days, we didn’t know much about mental illness, and I doubt  that she ever seriously considered psychiatry, but it is an indication of how important the ladies next door were in her life.

Our first next door neighbour was Mrs Sheen, a kindly, but slightly intimidating New Zealander. Her bald husband bore a striking resemblance to the animated figure who encouraged housewives to “wax and polish as you dust” with the product bearing his name.  There was a gap in the fence between the two houses and I remember slipping   through and helping Mrs Sheen fold washing, and then being given cordial and cake. In retrospect she was helping Mum deal with my “difficult” younger brother and perhaps filling her own day while her own children were at school.

In my teens we moved house, and Mum was lucky to have another good neighbour in Joan Barnes. Much of their conversation was carried out over the side fence, as they shared tales of difficult husbands – both drinkers – and teenage children.  Gradually they moved on to share cups of tea in one house or the other, and by the time both men had died and we children had left home, it was often a brandy before dinner.

They both had their own circle of friends who only mixed occasionally. But when Joan decided it was time to swap her three story house for a level apartment, which she bought off the plan, Mum soon followed.  She said it was because she found herself doing the ironing instead of gardening – not the other way round as had been her practice – but it was also a recognition of how important the friendship was to her. The pre-dinner brandies  and cups of tea continued, and when Mum uncharacteristically wasn’t answering her phone one morning,  I rang Joan, who found her body and sat with her until my brother and I could get there.

With women spending less time at home, and many other options available for forming friendships, I wonder how many people form close and lasting friendships over the back fence.

image

 

 

The Educated Eater

Great blog! Why is it so hard to get this message across.

Fat Heffalump

Recently I was part of a conversation on Facebook about the concept of fat tax/junk food tax/whatever you want to call it.  The current food being demonised is sugar, and this particular conversation was about a proposed sugar tax in New Zealand, but I’m pretty sure that wherever you are has had something similar in the not too distant past.

A lot of the conversation centred on how taxing any particular food is over-intervention by the government, however it ended up in the territory of possible ways to get people to eat “healthier”.  As always, there’s a faint air of moralisation around even the most well meaning conversation about improving people’s general eating habits – the old binaries of fresh/processed, healthy/unhealthy, junk-fast/”real” are ever present, as though food is somehow either all good or all bad, which no food ever is.  Foods have varying levels of usefulness/nutrition/substance to every person. …

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Scuba diving at sixty-something – or you can’t talk underwater. 

I’m a water baby. If you believe in astrology, it’s because I’m an Aquarian. But I think it’s because I grew up around beaches. Anecdotally, I was swimming before I was walking. A chubby bottle-fed child of the fifties, I was content to sit and observe the world go by. In some ways, nothing has changed. But my father  was a swimmer  and a surfer, and an early photo shows me at the Spit Baths, grinning happily, held by my Dad and supported by a blow-up whale with a ring in it. The photo is black and white, but I can clearly remember the pink of the whale.

Sundays were spent at the baths or Freshwater beach, and although I never swam competitively, I loved the allure of the water; the feeling of support and the washing away of all the clumsiness of land-based activities.  I even caused my mother a few grey hairs by jumping off the  rocks at Bilgola beach, believing I could swim. My response, so I’m told, was  “but it looked so lovely”.  And I still think water is lovely. Being in a boat elicits a huge sense of frustration when the water calls, but is inaccessible. Bush walking by a creek is similar, but at least  sometimes the water is swimmable. So it was almost a no-brainer when I started thinking about the things I wanted to do before I got too old, to put “try scuba diving” near the top.

I’ve had opportunities to dive before on Reef holidays. But, impatient as always, it seemed a waste of time to learn the mechanics of scuba, when snorkelling was a jump-in-and-get-started-straight-away option. When I started mumbling about wanting to try it, my husband gave me a gift voucher for a discover scuba dive experience. It still took a few months to get there. A head cold, a day of vertigo and agonising over whether to spend money on a medical assessment first all led me to procrastinate making the appointment.

But finally the day arrived. There were a few hiccups getting there. On the way,  a huge four-wheel drive tailgated me, and as I glanced in the rearview mirror to see how close it was, I missed the turn off to Manly and found myself heading west across the Harbour Bridge, straight into lunch-hour city traffic (and pedestrians). So I was less than calm when I eventually arrived fifteen minutes late.

There were only two of us there for the dive, so we received excellent attention from the instructor and two trainee instructors. We watched a video explaining the techniques we would need, signed all the waiver forms, tried wetsuit and fins for size, and finally jumped in the van for the ten minute drive to Shelley Beach.

Then the dream shifted to reality. Naively, I had imagined scuba diving to be a weightless experience. Just me and a tank of air quietly penetrating the deep. How wrong I was. The scuba diver needs a weight belt (18 lb. in my case), an oxygen tank, inflatable vest, wetsuit, boots and fins. I managed to manoeuvre myself into all the paraphernalia, then began the walk to the edge of the water. My centre of gravity had totally shifted, my thigh muscles complained at the extra weight they were being asked to transport, my shoulders felt as though they were being pushed into the ground. I think it was less than two hundred meteres, but it felt like two hundred miles.

Once again we were given an explanation of what to do; push grey button to release air from vest, pinch nostrils to avoid extra pressure in ears, and breathe. It seemed straightforward. Until I tried. Suddenly I was descending with this massive weight on my shoulders, pressing and pinching – but not at the same time. And I couldn’t ask for help. You just can’t talk under water. We’d been taught hand signals: I’m OK, I’m not OK, I’m going up, I’m going down. But not one for “oh my god, how can I possibly do all this at once?” And all the time this massive weight was pushing, pushing down on me. So I spluttered to the surface, where I could talk! I received lots of reassurance – and had another 3 lb weight added for good measure. I tried again, and again, until finally I was down, facing the bottom and seeing fish, kelp, rock platforms and all the other wonders of submarine life.

But not for long. We had been told that diving was a hands free activity – a bit like Irish dancing. This protects the diver and the sea life. But it isn’t instinctive, especially for a regular swimmer who feels as though she is rocking from side to side from the unexpected shape of the vest while being crushed by the weight. So another panic propelled me to the surface.  I felt good floating on my back, especially once the neck of my wetsuit had been loosened. I decided to snorkel for a while. Shelley Beach is shallow, and snorkelling gave me a good view, but I was there to scuba, so, after a bit more snorkelling, I decided to try again. I checked my technique before I went  down, then that was it. I was really scuba diving. Hands beside me, air expelled, ears equalised. It still felt as though I was carrying the weight of the world on my shoulders, but I felt free. I stayed down for about 20 minutes, successfully clearing water from my mask without surfacing. I missed the dusky grey whaler (shark) that the experts saw, but did see fish of various sizes and colours, as well as rock formations and seaweeds.

Finally it was time to swim back to shore – on our backs. Getting out of the water was a challenge, with legs of rubber and the weight of the tank pulling me down as two of the guys helped me to my dry land. Then the long slow walk back to the bench where I could divest myself of gear and return to a normal body size and shape. In contrast,  I felt weightless as though I could take off in a puff of wind.  I played the age card, and left the younger, fitter members  of the team to pack away the gear, while I munched a welcome cookie, and decided it was too far to walk back  to the kiosk for a coffee.

Will I do it again? At the time I said no; the effort of carrying the weight wasn’t  worth the difference between snorkelling and scuba diving. But given the chance, in another place with the chance to go deeper, and without the walk, I probably would.

 

Bleak House

I should be reading “Bleak House” for next week’s book group. I’ve known about it for three months, downloaded it about six weeks ago, but still have only read the first paragraph. Lots of things have got in the way. I have been diverted by other more appealing novels, by watching almost all of “The West Wing”, which I had never seen before, and by everyday chores. Not to mention having my husband in hospital for two weeks, during which time our car broke down, and  getting some(very welcome)  paid work. I’m also not a great fan of Dickens. Admittedly I haven’t attempted any for some forty years, since “David Copperfield”and “A Tale of Two Cities” were on my list of school texts. I remember ploughing through his prose, struggling for page after page until I reached the end, and although I know he is a wise observer of human nature and a much needed challenge to the social conditions of the day, I can’t face it. For above all, I think the name defeats me two. Much as I try to change, I am a glass-half empty kind of person at heart, and at present my house is kind of bleak. For while my 60-something peers are travelling far and often, and minding grandchildren whom they can give back at the end of the day, my husband and I are still full time carers for our thirty year old daughter, who has myalgic encephalitis – also known, cruelly, as chronic fatigue syndrome. Much has been learned about this puzzling disorder since she developed it some fifteen years ago – half her lifetime! Yet although it is better understood, there remains no cure. So we watch her struggle with the major symptoms of pain, post-exertional (delayed) fatigue and “brain fog.” Some days even eating is a struggle; sometimes she can only walk by holding onto the walls or the furniture. Pain is constant, her sleep cycle is shot. She’ll put effort into trying to plan a routine which includes simple things like sitting on the balcony, meditating and doing some simple stretches, only to have a bad night for no reason, or to spend a few hours with friends, and find she has moved several steps backwards instead of forwards. She picks herself up again, but it’s pretty hard to stay motivated when the rewards are minimal. We teach our kids that effort earns success, that practice makes perfect, but with a neuro-immune disease that remains poorly understood, at best, nine times out of ten effort gets you nowhere. As parents and carers we are trapped between support and over-protection. On the days she can’t get the box of cereal out of the cupboard, we do it for her. We make cups of tea, we take her to appointments. In ways we are enablers, but it’s hard to set limits or employ tough love when the disease has no constants. Maybe reading “Bleak House” would have shown me that lots of people lead a life that is bleaker than mine, which, on the whole is pretty good. But. I’ll settle for an uplifting biography or an escapist chick-lit before I submit myself to Dickens. And that is caring for me. Post-script: I wasn’t the only one who hadn’t read Bleak House. Even the person who said “Let’s do a Dickens.” And we resolved not to choose books longer than 400 pages in future!

On being older-born

I love the term “older-born”. I first heard it in Cesky-Krumlov, when a waiter said he didn’t like young Australians but thought the older-born (like the four of us) were OK.

Since then I have embraced the term with gusto, keeping an eye out for those who appear more older-borne than me; when they are still fit and active, it gives me hope.  Contrarily, when I see older- borns who appear to  of a similar age to me but look frailer, I congratulate myself for hanging in there reasonably well.

Of course, in other cultures, one doesn’t need to reassure oneself in this way. It is a given that along with ageing, one is entitled to respect, and that  one’s life experience is worthwhile and can be of benefit to others. But the message today is that growing old is something shameful, something to be hidden, fought and avoided at all costs – and there are plenty of costs associated with pretending to be younger than we are.

So what are the benefits of being older-born? For me, I worry less about what others think of me. And this has enabled me to form more friendships than I had when I was younger. I have seen fads and fashions come and go.  From diets to frocks, it’s often a case of been there, done that, so I am less likely to rush in and spend money or waste energy worrying about how I look.

I’ve given up colouring my hair, and love the freedom associated with looking natural. I have time to read – for pleasure as well as for self-improvement. And I get cheap fares in the local buses and trains. I’ve been able to travel in Australia and Europe, and to fulfil a  dream and complete an Arts degree as a mature student.

It’s frustrating to have moments when I’m not sure if I’m coming or going, and its’s harder to remember names.  My body takes a bit longer to get going in the morning, but so far, I’ve been free from major health problems.

it’s a bonus to be older-born in the age of social media. I can read and write blogs and political comment,  laugh at jokes which go round and round various sites and keep up with the comings and goings of friends and family.

On balance, I think being older-born has a lot more  going for it than dealing with  all the pressures and responsibilities associated with paying off a mortgage and raising a family. I’m going to continue to enjoy whatever good and bad luck life throws at me for as long as I can.