Running Out

What would you do if you knew that your time was running out (your own, not a friend's or a family member's, difficult as that is, I know)?

Think about it...

Would you rush to cram in all the things you'd planned for the next thirty years and wouldn't now have the ability for?
Would you take it easier in the anticipation of making your body last a few years longer and hope that at a slower pace you could achieve some quality of living, albeit not precisely what you had planned?
Would you be so swamped with hopeless plans that total inertia would ensue?
Would you give up?
Would you ignore the situation and carry on living as normally as possible until your body put you in a wheelchair?

If there is one thing I have recently learned it is that being brave, positive, supportive of a friend and daughter in their illness is a far, far easier thing (and its still tough as hell) than being brave and positive for oneself.

A friend who has cancer decided that he would climb the four highest peaks in Britain and Ireland. Whether he reaches the top is irrelevant to the project, he will climb as far as he can. He is in Kerry at the moment with a crowd of friends, different friends for each peak! He is having a whale of a time, motivating and inspiring everyone around him which is truly amazing to see.

I know I refer to Eldest and her fibromyalgia from time to time, but she continues to amaze me with her determination that despite being crippled with pain and needing constant support and help with everyday tasks and living, this condition is not going to remove her future. At present she is back at University doing a Masters, hoping to be qualified for a more sedentary career, its not her dream but she adapts.

We all know of other people, young, old, not so old, who have suddenly had their futures diverted through illness and unlooked for disability. Some of them turn into amazing people who inspire others, I guess everyone has their level which they need to find.

Perhaps we can look at it as a shot across the bows, an early warning that one is not immortal (did we think we were?) and had better get on with real living. Maybe we are the lucky ones, others have their lives snuffed out with no warning who were definitely not ready to go.

People say 'where's there's life there's hope', but have they have ever considered how it would be living with chronic, debilitating, incurable, long-term pain knowing exactly the prognosis and the destination, if not the time frame? Can they imagine waking up every single morning (if indeed they have slept) feeling they have simultaneously been beaten up, run a marathon, got early Alzheimer's and maybe a dose of 'flu?

We can be cheerful, optimistic, smile when we can't move, try not to break other people's crockery or fall over in public and embarrass you, we can take well meaning useless advice and platitudes with a gracious smile, and judgemental attitudes with an even wider gracious teeth grit, we don't look ill so we can pretend for your sake that this disease is temporary because we know your mind can not contend with our problems, we can try not to resent your comments that since we are looking good and laughing we must be 'better', but still we know there is no hope for improvement, the pain is turning our brain to mush and our time is running out.

Go with your happy optimism, we will try to buy into it where we can but please do not presume to know what it is to be us.

And yet, underneath the pain, disability, fear, endurance, black humour, we remain the same person we always were.

Welcome to our new world.

This Too Will Pass...

A dear friend from E. Africa used to say this when things seemed overwhelming. I never saw it as wishing the time away but as a means of throwing one's heart over present obstacles. And boy! has this week thrown up obstacles!

Last weekend Eldest had a small contre temps with a bathroom door and it transpires that the top joint of her fourth finger disintregated. It was a small knock but the x-ray showed that the fibromalgia has triggered arthritis and her hand bones are fairly brittle. She has her left hand trussed up and in a sling which has rendered her balance worse than ever. She is left-handed so is somewhat stuck- dressing, washing, eating, using her stick, all hopeless.

She arrived with us Wednesday evening and it has taken my Mom, Youngest and I to cope with her. Last night she went to the Hub for two nights.

Monday I received notice on the Studio. The owner has been extraordinarily kind to me as the rent was just impossible to find from mid-December, but its still sad to be packing up. Youngest and I, plus her very generous boyfriend, Scout, are planning to do a coupla car loads this afternoon.

Boo hoo...

There's been other stuff too but we won't go there.

I had tea with a friend on Wednesday afternoon and she sent me away with jam from her garden, eggs from her hens, and mince from her cow! Eldest wondered if L. knew she was feeding us for the week- probably! How very kind people can be- and the jam tastes like bottled summer gardens, as only home grown jam can!

The Uses of Black Humour

The other day whilst in a clothes shop I noticed a lady trying on a jacket. There was nothing obviously odd about her but I got this feeling that she was not alright.

So I went over and asked her whether I could help.

'Yes!', she said, 'I have fibromyalgia and my arm is stuck!'

So I eased her arm back to a normal position and helped her to try on the jacket, and we had a laugh and a great chat about fibro and she gave me some useful info to tell Eldest. She was lovely!


On Wednesday afternoon, Eldest rang to say she was in such awful pain that she was coming home for the night and would I meet her off the train at 4 o'clock. Well I was there and she took ages to appear, so I was about to storm the barricade onto the platform to see whether she was stuck on the train (steps are a terrible bother to her) when she appeared, very slowly.

Later in the evening she took a notion to make biscuits. She and Middlest were having a rollicking time when Eldest suddenly fell over backwards onto the floor. She lay there giggling and shouting, 'I saved the biscuits! I saved the biscuits!' Which she had- she'd thrown the bowl onto the table as she felt herself falling!


There is a point to this waffle!

Two points in fact:

Firstly, it seems to me that many people with long-term disabilities develop a real sense of black humour as part of their coping mechanism. And honestly it can be awfully funny.

A few years ago a very good friend could no longer manage the stairs in her house, and her husband didn't come quickly enough when she called. She casually asked him to re-position their daughter's trampoline closer to the back of the house, and then, when he asked 'why?' explained it was so she could jump out of the window to get downstairs....

I dunno whether its my reprehensible sense of humour, but I thought that was just hilarious!

Secondly, and this is more serious, how many 'hidden' or 'invisible' disabilities surround us all the time? People just quietly getting on with their lives with little or no help.
How many times do we pass people who could do with a hand, and not notice?
How often do we get annoyed with the person in front of us being slow, when in fact they are doing the best they can, and possibly in more pain than we could imagine?

We all notice the elderly, and make allowances for them, well here, we do. I'm referring to younger people, teenagers, twenties, thirties, etc, people who are not old and look fine on the surface.

Since learning to cope with Eldest I try to keep my eyes open and my antennae alert...you never know when you'll be able, with one small act, to make a considerable difference to another person's day.

It Came To Pieces In Me Hand...

Isn't lovely weather such a blessing?

Marey Horse would NOT come out from behind the tree to have her photo taken, she just hid and humphed!

I really want to thank you all for both your sympathy and encouragement over Dilly, yesterday. I've been reading everything I can about Fibromyalgia and am feeling a little better informed as to what it involves. Your encouragement is also helping me to be more positive and I appreciate your comments very much!

She also had her laptop stolen from the Theater last Wednesday, so yesterday evening my Dad lent us the money and he, Dilly and the Hub went and bought her a replacement. It means she can come home to study and write assignments instead of having to sit in the computer room at College, just a small thing. I think its perhaps the small things that will make a difference. Today we have to go buy her some good sandals with support as her ankles are terribly sore and she hobbles.

There is definitely SOMETHING nesting in our ruin, but I can't see what though I keep creeping out to investigate.

I've neglected the pansies and just look! Neglect obviously suits them!

And the polyanthus are flowering by the front door- polyanthus or primulas? I never can remember.

I seem to have forgotten to turn the photos around, but sure flowers is flowers whichever way up you view'em! Also by the front door this morning I saw this beautiful moth:

Isn't camouflage amazing? Take elephants, for example, you'd think they were too large to hide, but in dappled shade they are virtually invisible. The same for zebras, and cheetah and leopard are even worse, you can be practically staring one in the eye and miss it. Well I know a moth is slightly smaller, but the same principle applies!

Yesterday it was so warm and sunny that on the way into town I got Dilly to wind open the car sunroof. Lovely! Then I asked her to fold the handle away and...somehow the whole mechanism...came away...sort of...in her hand...and she sat there and remarked in a VERY casual tone 'Oh Dear.'

We laughed so much I had to pull off the road to get my breath back and wipe my eyes! Considering how many mishaps occur in her vicinity I just don't understand how ANYONE in their right mind trusts her with Theater Lights, or anything else!

Then on the way home, with two bicycles on the carrier, something came loose and the Hub had to stop and fix the whole yoke back onto the car. There was a lamb in the field next to where we stopped:

...making the most UNHOLY row, but very friendly. Dilly and BBug were mortified that I got out of the car to talk to it, but it was rather cute.

Travelling Sister was telling some saga this morning over the coffee cups and when we'd all finished laughing Mom asked: 'Do you think that as a family we are very easily amused? Or do amusing things just happen to us?'

I dunno but judging by Dilly and the Winder, amusing things sure do happen!!