Saturday, 30 June 2007

Back To Nature

I went to the Botanical Gardens again today.
This was where I found readily available scooters loaned out for disabled visitors a couple of months back.
As I don't yet have my own wheels, it really is a great place to get used to freedom in a lovely setting.
Today I went a bit further, as I had wheels and could. I did a course at their on-site study centre.
It was a couple of hours on essential oils and aromatherapy.
How we can replace detergents with natural products in the home.
And how essential oils can be used to alleviate the symptoms of various medical conditions.
I was one of two disabled people in the class. Nobody minded that I ducked in and out for a few rests.
The tutor has worked for 25 years in health, and now works for a local organisation that seeks to combine holistic therapy with mainstream medicine.
She saw at one point I'd gone into sensory overload (fortunately whilst the rest of the group were busy trying out oil combos - in fact it was the sudden volume of excited nattering that set me off). She came out to see me and gave me a five minute personal consultation! What a lovely woman.
I've written on aromatherapy in the past, many years ago.
It has to be approached with caution, and using oils without any knowledge or the input of a practitioner can potentially be as dangerous as self-medicating with over-the-counter medicine.
But I was really encouraged to find that there is work going on with the NHS to target specific conditions with holistic approaches, and that this particular practitioner was experienced enough to deliver advice with confidence.
So I'm branching out from good old lavender oil, into the new territory of camomile and vetiver (soothing, good for sleep). I also use clary sage for pain relief.
There are many more oils I could try on myself, but I think if you have a medical condition it's always wise to do it under supervision and slowly. If you add too many oils too quickly, how do you know what is working?
There's certainly no harm however in mixing up a blend for a room spray or to stick in the washing machine or tumble dryer as an alternative to chemicals in the home.
And oils such as lemon, lime and geranium are great antiviral and antibacterial sprays, when you add 30 drops in a combination to 100 ml distilled water.
The Goldfish started a really informative debate about these sort of approaches on World Environment Day. I often refer to it.
Now I'm off to zonk out in a sleep-inducing bath. Just hope I remember to get out before I nod off :-)

Wednesday, 27 June 2007

Let's celebrate

I know it's bad grammar to start sentences with because...but

Because I dared to disagree, the someone I disagreed with has come back to me with a very positive response about my need for my disabilty to be accepted. Four words:

"I understand better now."

Because I have spent the past few months with brilliant support online through blogging and learned much about the Social Model, I have been able to articulate my views on my disability to someone close to me, outside blogging, for the first time.

This is a milestone. I feel jubilation and I want to share it. It's not a self-satisfied jubilation, not even about 'educating the able-bodied', just genuine happiness that someone important to me 'understands better'.

Because I am finding my way, and because I know I am not alone, it gives those who know me the chance to start making sense of what has been a very difficult time all round. Sudden disabilty can send out shock waves. And those shock waves can rebound for years. A personal trauma becomes a shared trauma. A collective sense of disbelief.

Sometimes things have to utterly fall apart to be put back together again, differently. But the sense of rebuilding is such a positive force.

These are positive times indeed. You may have noticed the appearance of a new Ouch! button left and up a bit. Blogging at Ouch! is going to be a driving force for me in the next few weeks. Six of us are posting regularly on disability matters. I will be back here in between. You'll find us all at Ouch's weblog.
Or just click the Ouch! button on the sidebar anytime to go to their homepage.

Saturday, 23 June 2007

Daring to disagree

Someone well-meaning recently suggested that I should not see myself as disabled.
In fact, more accurately, the phrase used was “I still don’t think you need to see yourself as disabled.”
The fear being?
“There is always a danger that once you believe that as the case, you will never then see yourself as being independently mobile again.”
The discussion had started because I had referred to the experience of being visibly disabled when I first used a mobility scooter.
I had described myself as disabled, for the first time where this person was concerned. And they couldn’t get their head around it.
Their use of the words ‘I still’ showed that heels were firmly dug in.
Many disabled people will have had to counter comments like these and deal with friends and family in denial.
It can really throw you. But I tried to explain.
First I tried to explain why people have a problem with disability in general.
Then, not for the first time, I tried to explain how my condition affects me.
I also pointed out that an able-bodied person generally considers two legs as the only means of being independently mobile.
Wheelchair users may have a different view.
To the average able-bodied person without any experience of disability a wheelchair represents imprisonment, lack of freedom, dependence.
To a disabled person a wheelchair can represent liberation, rediscovery of freedom and independence.
It helped me enormously to be able to refer to the Social Model of Disability.
But I wonder how much good it really did.
The following was very relevant to my argument:

"The social model of disability can (also) be used to understand the family lives and personal relationships of disabled people. This is because the cultural environment in which we all grow up usually sees impairment as unattractive and unwanted.
"... it is not surprising that many people with and without impairments do not know how to respond. This helps to explain why, for some people, coming to terms with a disabled lifestyle represents a personal or family tragedy.
"The social model also recognizes that for many people coming to terms with the consequences of impairment in a society that devalues disabled people and disabled lifestyles is often a personal tragedy. But the tragedy is that our society, and increasingly other societies, continue to discriminate, exclude and oppress people viewed and labelled disabled and this is the subject matter of emancipatory disability research."

But can people we know and care about, whose opinions matter to us, be enlightened by being ‘quoted at’ in what can sometimes amount to an evangelical fervour?
I am at times desperate for people I know to understand my disability. But finding the right tone, the right balance, is difficult.
If I am told I shouldn’t see myself as disabled, I certainly feel I should respond.
I owe it to my self-worth and my own growing acceptance of my disability to at least try to explain my stance.

“for many people coming to terms with the consequences of impairment in a society that devalues disabled people and disabled lifestyles is often a personal tragedy.”

This would explain why, after becoming disabled three years ago, I had a nervous breakdown.
It was a tragedy at the time. A bereavement, a loss of my former able-bodied self. I went into denial. And everyone around me went into denial.
No amount of theorising can reach you when you are in the first stages of dealing with a sudden disability.
But boy, can it help later on.
It’s been through blogging, and other bloggers that I have become familiar the Social Model, and I would now describe myself as a passionate advocate.
I really do believe that attitudes at large can disable people far more than their actual condition.
I believe that prejudice and ignorance cause untold damage, unless of course it is told.
Which is where battle commences, and activism begins.
Did I become a disabled activist all of a sudden by defending myself?
Activism is largely borne out of the experience of prejudice and ignorance.
These seem harsh words in relation to the person who caused this debate.
But friends and family, and even your own bewildered self can reject disability because prejudice and ignorance are largely to do with fear.
So I tried to explain things the best I could.
How I am disabled. Why I am disabled. And I was explaining this to someone who has known me for more than a decade.
But that person has not been through the mental processes I have had to go through to arrive at where I am. And some days, I still haven’t really arrived.
I have been disabled for three years, but simply couldn’t acknowledge it for a long time.
It wasn’t just about receiving DLA or applying for a blue badge or any other external medical or societal validation that came my way.
It was about what was going on inside me.
The process of acceptance. Moving out of denial into a far healthier place.
A place of strength and knowledge.
When you are disabled, this is the place you want to reach.
And you want everyone who is dear to you to be there with you.
Only that takes longer. And sometimes it just may not be possible, because you can try to explain, but you can’t always make a person understand.

Thursday, 21 June 2007

Things that go bump...

The last few nights have been somewhat disturbed around here.
Both my son and I have been terrified out of our wits by sudden noises. Screeching. Wailing. Bumps. Thuds.
Ralph, until this week our benign and regal feline, is at war.
It comes out of nowhere, a sudden almighty caterwauling that has both of us shaking under the covers. It can go on for quite some time and I find the noise so distressing that it has actually given me nightmares. I am such a big wuss. But it's as spine-chilling in the dead of night as the call of a fox or a clap of thunder.
Last night was really bad. My son came into bed with me and we cowered in the darkness as all hell let loose, seemingly all over the house.
Rather than keep his disputes outside it would seem Ralph has brought his turf wars inside.
Well, to be more accurate, we are being invaded. The cat who is choosing to assert its presence in Ralph's territory is slinking through the catflap and probably gobbling a hasty stolen mouthful of cat biscuits before being caught out by an enraged, towering tiger of a silver tabby.
Now, don't get me wrong. I think it's good that Ralph has finally settled into our new home enough to want to defend it.
It's been nearly three months since we moved. Each of us is facing very different challenges along the way.
My son is adapting to the separation of his parents, and adapting very well.
I am adapting to life as a single disabled mother, my body is complaining and sometimes I feel very overwhelmed. I am told I am adapting very well.
Ralph, after an initial period of stress is, it would seem, finding his feet and now taking on his first neighbourhood adversary.
But we do need less chaotic nights.
My son has a cunning plan.
He will now be sleeping with a water pistol by his bed.
When battle commences, he will creep up on the warring parties and squirt the intruder. Or Ralph. Or both. It won't be possible to switch on a light as this will ruin any chance of success. To be honest if Ralph cops it I won't be entirely displeased. Sympathy is at an all-time low as we reach nearly a week of disturbed sleep. Sleep is something I prize, and it is something a growing boy needs.
At times I do wish this didn't have to go on in the small hours and that they would take their disagreements outside where at least you get a chance to lob a boot into the night.
By day, Ralph returns to his benign, regal self. Plus he sleeps a lot.

I spend the morning calming my shattered nerves with camomile tea and my son goes to school with ever-increasing dark circles beneath his eyes.
So tonight, a stake out. My son with his water pistol. Me? If I get there in time I will try and get a photo. In the dark, of two fighting, spitting furballs, whilst dosed up on painkillers and other motley meds. Chances of success? My money's on the water pistol. And my son will be rewarded handsomely.
Of course, we could just lock the catflap. But where's the fun in that?

Tuesday, 19 June 2007

Upstairs Downstairs

I am now in possession of a commode.
The gentleman to my left is perhaps not, but the picture captures something of the essence I feel surrounds the mere mention of the word.
I love words, much as I don't always love their meaning, or their reality.
Those who recall my aesthetic tendencies won't be surprised to learn that on receiving the news that a commode was considered necessary I indulged fanciful notions of decking out a corner of my back room with palms and aspidistras, seating myself regally upon something involving much wicker or fine inlaid woodwork and, ahem, a porcelain po.
But porcelain being somewhat heavy, and my po-carrying abilities somewhat reduced at present, my fearful imaginings of what could happen on the stairs on the way up to emptying it went into territory far more gruesome than I could bear.
Nevertheless (oh the predictability) something plastic and ugly arrived this week from social services. So very ugly, it can't possibly be pictured here. Something which really should not be graced with such a lovely word as commode (from both French for convenience and Latin commodius, which paradoxically means spacious and roomy - not to be confused with Commodus, a particularly nasty Roman Emperor. Also, further research reveals, a commode was a type of headgear worn by women in the 17th century. But I digress).
Did you spot the other paradox? The helfnsafety one?
A commode is useful to those who find reaching an upstairs loo difficult, or who cannot get from their bed or chair to a loo.
I have a commode because there is no downstairs loo here, and I am having to minimise time spent going up and down the stairs.
On the occasions I have had to use the commode, the po (well, okay, plastic bucket with lid and handle) has to be emptied. Whether plastic or porcelain, this poses something of a problem.
Getting a po to the only place where it can be emptied requires a certain person of limited strength and balance to navigate a set of stairs without both hands free to grab the bannister or lean on a wall for support.
In practice, there is therefore in my humble opinion a paradox in me being provided with a commode.
Why have one when you have to go upstairs anyway to empty it?
Less energy consumed on the stairs at points where energy may be utterly lacking, yes. But hugely increased risk to self climbing stairs to upstairs loo to empty the po. And yes, I do like the word po very much as well. It comes from the French pot de chambre, hence chamber pot.
The lady from social services helpfully pointed out that normally a carer would be the one to carry out such duties.
I politely pointed out that yes, I knew this.
There was a pause. Absence of carer noted. No way would I ever, ever expect my son to do it, even though (wonderful child) he offered in the blink of an eye, arguing that he had to do much the same at Scout camp. But without the stairs, I immediately thought. And yes, I will be writing a post on the subject of 'young carers' at some point. It's not a helpful label to give a child, in my opinion.
Mental note to consult advocate. This is why we are fighting for direct payment, so I can buy in my own help at home. Even if it's just someone to come in of an evening, help prepare a meal, empty the po, and go.
And so the commode has been consigned to the cupboard under the stairs, where occasionally I can be found looking out pondering a new perspective of the garden through the window opposite. Is it undignified? Should a youngish lady like myself be seated thus in a cupboard under the stairs?
Well, I think it's quite funny, especially when I reach for the flush that isn't there. And I am a veteran of many Guide camps myself, so do not mind going back to basics. If you have to po, you have to po.

Afterthought: I googled commodes as I wanted a picture of an antique one for this post. But the only antique ones that came up looked more like sideboards or chest of drawers. Which caused me great confusion.
Finally, after a little looking around I found an unexpected delight.
Some health bods in Canada have come up with handy hints for making life around the home a little easier. Now some of it is actually quite useful. Some of it quite hilarious. There is a section on converting a kitchen chair into a commode, complete with a 'pretty skirt'. Also, aviator shades with holes drilled in the centre...for applying eye drops. My favourite? The converted flying saucer complete with traffic cone centrepiece that doubles up as a handy revolving tray for all your electrical bedside implements. Yes, really. Laugh? I nearly...

Wednesday, 13 June 2007

In between forms

I have come up for air for a few minutes. The pure, clear air of my own space. There are so many procedures, forms, letters etc going on that I haven't much left in me to write at length at the moment.
So I'm mainly popping in on other blogs and staying in touch that way.
But I can at least say I now have an advocate, and a shit hot one at that. I no longer have to take on the world single-handedly. I have someone who can really kick ass. We're talking judicial review, the High Court if necessary. And on more than one front.
But I'm sick of this dominating so a bit of rest, time to unwind and reconnecting with pleasurable things like painting, reading, time with my son, should rehumanise me.
Thanks to all who have been supporting me, especially in the past week or so. It really has meant a lot.

Friday, 8 June 2007

One piece of paper

This document represents a major turning point in my battle for the provision of services to enable me to lead as independent a life as possible with a disability.
It is a piece of paper stating clearly that my needs as a service user under the Fair Access to Care legislation are critical.
In other words, as a human being I am experiencing a level of stress and suffering that really should be attended to by those people employed by the government agencies which are there, supposedly, to help me.
It has taken three years to finally have been visited by someone who has instantly sat up and said "I will help you." Not only that, but someone who has the right forms, and knows what I need and when I need it. Three years ago would have been good.
The only time there was any attempt to 'meet my care needs' was during two hospital stays when the criticalometer went off the scale.
As my medic friends tell me, you have to be in utter crisis to get any help where health or social care systems are concerned these days. You have to be nearly dead.
That makes me angry.
There are thousands of people in this country who live in appalling circumstances and who are not getting access to the help they need. People in far worse situations than myself. People who cannot speak up for themselves as I have sporadically been able to do. People who may never get the visit I had this morning, even if for me it was a long time coming.
I am curious to see where unleashing the potential locked in the document above gets me.
Having my own copy of a specialist OT summary, and the above summary of my care needs means I can, if I so choose:
  • Send a copy to the local Wheelchair Service. I cannot wait a year just for assessment (let alone provision). And yet there are more than 700 people on this waiting list, some waiting 18 months. That's 18 months of neglect. Failure to improve a person's quality of life.

  • Send a copy to Social Services Adults and Communities. It is wrong that they haven't contacted me for 15 months to arrange an assessment and discuss direct payment so I can organise my own care package. It is wrong that my so-called case worker never returned my calls, then quit, and now I have no case worker. It is wrong that they told me last summer they couldn't help me because "You aren't terminally ill or bedbound and we don't have the funding."

  • Send a copy to the Disability Living Allowance dept in my fight to receive a mobility component of the award.

  • Send a copy to all the charities I am going to write to for funding for a wheelchair plus the ramps that social services will again take too long to provide.

  • Send a copy to my current health team. I am unhappy with the level and quality, or more importantly suitability, of the 'care' I currently receive. Sticking a person on various medications and hoping they will go away is not care.

  • Send a copy to my MP if none of the above respond. Hell, why not blow it up to billboard size and stick it in Parliament Square?

So there you have it. A bit of paper. Will it make a difference? Will anyone sit up and do anything? Or will there be more waiting lists, more apathy, more bureacracy? We shall see. I will need to think carefully about who to send this to, but at least it is now there, in black and white. Funny how the camera picked up shades of grey though, isn't it?

Wednesday, 6 June 2007

Now with added pictures

It was way past bedtime when I originally posted this last night so I've gone back to it and added a bit more waffle and some pics to show what I've been up to.

Whilst I was away I found you don't have to go far even round our parts for lush greenery. Perhaps I was inspired by catching a few episodes of Springwatch, although I can really only bear to watch Simon King, being something of a traditionalist where wildlife broadcasting is concerned. The ordeal of sitting through Kate Humble and Bill Oddie wittering aimlessly and laughing at their own cliquey jokes does nothing for my love of nature I'm afraid. "Errr, and lets see what the, I think we're going straight to the badgers. Oh, ah, nothing much happening. Let's have a look at um...errr".

Anyway, the above was taken a few yards from my mum's house.
It's actually a bit of urban scrub masquerading as a park, but I find it a revelation when I have my photographer head on that if you look hard enough there are still some lovely things even amid the concrete bollards and haphazard townplanner planting.
And I moved faster than I have in ages to get to my camera for the shot (right) in my mum's back garden. Is it a dragonfly or a mayfly? Or neither? A very co-operative subject whatever it was. It was sunbathing, and stayed still for ages so I could experiment with my camera and try to get the best shot I could.

There have been a few developments since I last checked in:
  • One less creaking bureaucratic boneshaker to deal with. The tax credit people finally grasped the situation and have stopped writing to my ex at this address. I have the correct award at last.
  • One garden free of gravel just ahead of social services visiting on Friday to assess access 'issues' for the wheelchair. I will be trying to raise funds by writing to charities to get ramps fitted rather than wait for two years just because social services may prove less efficient.
  • One Housing Benefit form nearly completed. I was wrongly advised at the start of all this. I am eligible, the CAB tell me, due to the separation and leaving my last home.
  • One ebay dishwasher diagnosed as crap. Win some, lose some. Total write-off. I advise caution where big goods are concerned, although I have had success in the past. Always best to keep all correspondence and contacts, and ask for a service history.
  • An advocate is visiting me next week to discuss wheelchair waiting list 'issues', general management of my care and how to access a homecare package (should I feel it is necessary).

Not bad going. I bought some very red geraniums (nii?) and lavender for the garden whilst away, but have managed to overwater the former. My son and his friend planted a herb wheel yesterday which looks fab.

It's nice to potter and I am now on the lookout for a cheap bench for the delapidated greenhouse which emerged from the jungle a while back. I just need to replace a couple of panes and hey presto we're in business for tomatoes at the very least. Meanwhile at the bottom of the garden there is the most extraordinary shrub. I call it the gobstopper bush on account of its large spherical blooms. I suppose they are flowers but to me they look more like alien sproutings. The bees love them, which makes up for their somewhat overbearing presence. Although they are only overbearing because the bush itself is about six feet across and nine feet tall. And I have no idea what it is. But, for anyone who might, here is a clue.