Archive for November, 2007

Invitation to My Virtual Xmas Party

You are cordially invited to my (non) office Christmas party on Monday 10 December 2007.

This will be my virtual works party for all my online friends, regular readers and people I don’t get to see much anymore – even people who’ve just discovered me or tend to lurk (read but not comment).  Join in the party!

This will be happening over on my other blog http://rachelcreative.wordpress.com

Check there on the 10th December for the party post.

More details

Update on Things

I forgot to tell you that after my exertions attending my friend funeral last week I started to pick up a little on Sunday afternoon (3 days later).  It had been a gradual slide into worse exhaustion and fogginess, with spaced out episodes, loss of speech, weakness – but gladly none of that pain/migraine/IBS flare stuff (so far so good).

So I am actually really pleased that my recovery from what was a big exertion for me seems to have been much better than expected and much better than say 3 months ago.  Hurrah for that!

I’m still a bit wiped and tiring easily but it’s at least manageable to a degree.

In other news my DLA claim form has made it to the hands of some bod in Department of Work and Pensions.  I know this because he phoned Growlers mobile (a neat trick to give his number and not mine to avoid slurry confused conversations with officials) and asked for my previous address.  Turns out they needed tha last address I was at when I last made a claim for something.  Which was over 8 years ago and I have in fact moved 4 times since then.  The guy kept saying “we haven’t been informed of that” but why would you update your contact details with someone you have no dealings with?

Anyway – it means it’s in the system and … well, who knows what is next with that.

Plus I have received my final payment from work, or should I say my ex-employer (!).  Just to ensure I am in no doubt my email and network account have also been deleted off the system.  Let me be clear – I have only been checking my work email because my ex-boss assured me he was going to try and get the senior managers to let me have my special chair from work for my back problem.  Looks like that isn’t going to happen now.

But the work/Rachel ties are finally cut.  Just a few files and links to recklessly delete and it’s all chalked up to a few lines on my CV.

Not-So-Random Things On My Mind

What can I ask Growler for as a xmas present.   Surely not a walking stick.  There must be something else – that isn’t in the disability aids catalogue.

Why am I awake, or rather why am I not getting off to sleep.  Did I over frazzle my brain today.

Wanting to ‘organise’ a virtual non-office xmas party for my online (and hardly ever get to see) friends.  With party games and virtual booze.

Will DLA turn ugly or go through like a breeze.

Have I got too many choices on my t-shirt shop or not enough.  How will I ever know.  Is it worth it.

I want to paint.  Paint free.  Paint messy. 

I want space in my “studio”.

I want the energy and health and resilience to just tidy up and attack little jobs without scuppering the rest of the week or month.  Grrr!

Am I good enough.

Have I left enough time to get the xmas cards written.

Will the stress of having a filling at the dentist next week make me proper poorly.

Am I doing the right things.  Could I do more.  Should I do more.  Remember what Growler said.  breathe.  Relax.

If I book theatre tickets for panto with disabled wheelchair spot will they throw me out if I walk from my wheelchair to the toilet.  Will I have to be stuck in all the time just in case non disabled staff make a judgement and think I am a fraud.  Or do I develop a big gob, do what is right for me and give them verbals if things kick off.

When can we have the pretty xmas lights up.

When will I get better.

Can there be a way to have a blanket on your lap in a wheelchair and not look like a cliche.

If I make art to sell, it might not sell and that would be really embarrassing.

Growler is going to read this and tell me this is why I couldn’t sleep.

Sigh.

My Fridge Contents Are A Mystery

You would think that not being able to have a bath or wash my hair without some help would be enough to bring home the reality I face living with a chronic illness.  But I can tell myself that if I only tried I could do it on my own – besides this is a one off, and this one, and this one …

Or that perhaps having lost my job through ill health and having had ten months straight off work sick would be enough to bring it all home.  But I can tell myself that if I had only tried harder I could have gone back and done some hours …

But when I opened the fridge door this evening to get milk for my hot chocolate (well, middle of the night really unable to sleep – but that’s a different blog) I saw absolute proof of where I am at in my life.  I didn’t recognise anything in there.  Our fridge packed with packets and pots of interesting food was a stranger to me.

It started early on in my illness with not knowing when we needed to buy milk.  Growler took charge of being chief milk monitor.  Slowly my solo food shopping trips stopped altogether and not much after that I stopped going with Growler to “help”.  There are better ways to use valauble energy than have it sucked out of you in a supermarket if you can at all avoid it.

Now I have no idea what is in my fridge, no clue what is in the cupboards, no feel for the routine and the familiar of my kitchen.  Growler is an expert in stocking all my favourite things, all the things that are good for me and all things suitable for a fussy tummy day.

Isn’t it strange how something so simple can illustrate a vast shift in my life?

One of the the ambitions I hold now (those overcoming illness ambitions) is to cook Growler a meal again.  I mean a good meal without collapsing afterwards, to be able to enjoy it.  One day.

I also have ambitions to be able to walk or get to the local post office – a 10 minute walk, by myself, under my own steam, safely.  Oh and make it back too!  Also, much more ambitous – to ride my bike again, or to have an electric bike and be able to go for a ride in warmer weather with Growler.

But I think cooking a meal might be the first milestone from that list!  That’s providing I can pre-order familiar supplies for the fridge. 😉

Oh – the good news is that all the staples still live in the same places in the fridge.  So finding the milk was straight forward.  At least I haven’t completely lost it.

To Chance Going On Your Own Two Legs

Just doing the basics.  Well, not even all of the basics truth be told.  I’m in that foggy world – where fogginess shrouds the brain and the body.  Like walking through thick smoke with the resistance of custard.  Like thinking with a veil between me and the world.

Moment of clarity come and then go.  Moments of energy – having taken hours to arrive – spark out pretty quickly.  I can appear gloomy to those around me – but mainly because my physical output lets me down.  

Growler sees me outwardly normal one moment and sort of spaced out slumped the next and I try to say what is true “Happy on The Inside”.

I went to a funeral on Thursday.  Aside from the easily anticipated emotional aspects – it was the physical exertions that put me in this state.  A 100 metre or so walk from the car and having to stand through the service (the attendance was magnificent but I was too late to ask anyone to give up their seat).  All in all 40 minutes of my feet either standing or walking leaning on Growler for support – legs shaking, then stiff and aching and shaking.

Lesson Learnt: It’s better to use the wheelchair and not have needed it, than to not use it and discover I should have – because by then it’s too late.

No point taking the chance on occasions when I’m not able to dictate the exertion required.

Friday was weary.  Saturday was foggy and exhausted.  Sunday (today) a deeper level of mist and exhaustion.

At least I’m well enough to write this – after an hour in zombie mode I have spark of energy and clarity to use.  I’m not (touch wood) suffering from a lot of pain, or migraines, or IBS flare up, or achey like I can after such exertions.  My limbs are weak (I blow dried my hair on Wednesday ready for the outing on Thursday and my arms are not yet recovered) and I’m bed bound for the lions share of the day.

I’m so glad I was able to go to the funeral and I have to remember that it was worth the price.  And that I learnt next time to just shelve the pride or the worry about causing a fuss with access – and just use the damn wheelchair!

The Shape My Life Is In

IT’S …

laptop + wireless broadband (reading blogs, writing blogs,  email , social networking, some online shopping),

drawing, photography,

a bit of evening telly,

listening to family and chat,

holding my husbands hand, feelng him close to me,

smiles, giggles and belly laughs where possible,

WITH …

washing every 2-3 days, bathing every 1-2 weeks,

taking meds, taking suppliments, drinking water,

sleeping 10 or so hours, staying in bed for half the awake hours,

being housebound normally 99% of the time (I actually did the math),

avoiding stress, keeping warm, being sensible, pacing,

AND …

watching my cat sleep/clean/fall over his own paws,

assisted wheelie walk once a month or so,

seeing a friend or relative every few weeks and the spark it brings me,

hearing (reading) friends and family and total strangers say lovely things,

the beauty in nature, seasons passing, skies for ever,

WHILST …

planning days and weeks ahead for routine exertions and everything not mentioned here,

wrestling with questions, acceptance, uncertainity, grief,

dealing with pain, exhaustion, aches, weakness, IBS, migraines, nausea, incapacity,

frustration at the missing stuff, things, doings, and all beyond my limits,

making resolutions that cannot be met,

reading about CFS/ME, research, sufferers views, government changes, media coverage and feeling confused, helpless, angry, inspired, militant and mixed up,

regular wide open holes in time as all things that I know are forgotten for a minute/hour/day or more,

a huge void where the stuff used to be, things not missed off the blog but not done anymore, a long list with books / games / exercise / cycling / working / chores / driving / independence / conversation / travel / sculpture / spontaneous doings / many more chunks of loved stuff now lost and too numerous to list,

BUT …

life is good,

life is small but big enough,

loved and loving, not forgotten,

rewards found in the smallest of endeavours.

Totally Tired and Suddenly Sleepless

How annoying is it when you are mega tired and can’t get to sleep? Humph.

No matter how hard I try to clear my mind, once it’s apparent that sleep isn’t coming all this stuff starts marching around my brain. 

I’m not lying awake worrying about things, no, no, no.  Because my brain can be a pretty busy place a lot of the time (except brain fog times of course) and I fall asleep with mind whirring anyway.

So my thoughts were filling the space, rather than keeping me awake.  At least for the first hour or so and then I start thinking about what I could blog.  Sigh.  If only I thought in structured paragraphs eh?

Recurring themes lately seem to be:

1. “Why am I not doing more?” v.  “It’s so frustrating to do just a little and feel really ill”

Couldn’t I just try harder?  Use more will power?  Fight my way to health?  Well, no.  Hello brain – do you remember that over exertion equals feeling even worse?  Hmm?  And that will power is no use in this equation?  How forgetful we are.  going round in our usual circle again.

2. “What clever ways can I use to earn a living and make a contribution to home and society?” v. “There’s no pressure to earn and contributions made are more than just financial or huge gestures”

I keep writing things on my little to-do lists that say things like “brainstorm ideas for income generation” with half ideas about writing, putting a book or two together with my drawings, doing something web based, being a full on self-representing artist and so on.  To find ways I can carve out a new work life for myself with all the flexibility I need.  But is it really necessary?  Not for money, but maybe for my self.  And then I realise I am already doing rewarding fulfilling things for myself so why push for more when my energy resources are so limited?

3. “Life is about love, friendship, connections and touching people’s lives for the better somehow” v. “My life is of virtually no value”

Please don’t panic about this internal conversation I have with myself.  I don’t know why I keep coming back to this inane conversation when I know my life is of value – but it does happen and my job is to tell myself all the right things. 

I always know there’s some mental flexing to be done when I hear my string of internal nasties reciting in my head – the kind of negative self talk that used to trigger self harm and still could if they went unchecked.  So it’s good to practice the positive challenges to those “no value” chimes.

It’s easy (it seems) for me to see me, myself, my role, my “contribution” in a very grey light as small, needy and not very giving – being an ill, incapacitated type who needs a lot of assistance.  But of course that isn’t the whole picture.  I am much more than that – aren’t I?

A friend of ours died just last week from complications following a deliberate overdose because he’d “had enough” (his words) of Multiple Sclerosis (late phase progressive).  I have huge respect and fondess for him.  It’s a sad loss of a good man.

Selfishly, it made me scared.  I don’t want people to give up.  I don’t want to know that being totally dependent and incapacitated was too much to bear.  I know it’s not the same situation (I know it’s not) – but I can’t help that the sentiment has upset me and made me start asking a lot of questions about life.

If I am able to do nothing except just be – then is that of value?  The problem is to just be whilst in pain and discomfort, with little control over your own life.  It’s not that movie image of soft sunlight cast over crisp linen with the incapacitated lying pale yet beautiful in bed.  It’s a slog – a tough, challenging, mind blowing, painful, knackering, stinky slog.

Well, I think there’s still value there.  My friend made a very personal decision.  We’re all different.  I only wish if things ever come to that for me I will have the courage to shout to the world that I need a whole lot more from life.  That this isn’t a sympathy call but a chance to make a difference to a life.  And only then when all avenues are exhausted can I call it quits.  But no assistance can be the same as doing it for myself.  It’s so very hard.

My circumstances are of course very different.  I’m sure as far as “value” goes I have many things to offer and that I do offer them regularly. As much as I am able to give I always do – be it love, encouragement, a smile, a word or two, to listen, to share.

See? 

I have a lot of big themes on the go.  I think that last one, about life and value and what-is-it-all-about, is the biggie at the moment.

Thing is, that even when I figure out answers these pesky things come popping back up in my brain and usually, for a while after they do, I’ve forgotten I’ve already worked out some answers!

There must be so many blog posts in the world fuelled by insomnia.


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Push It 11 Sep 2011

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CFS Links & Resources

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