ChronicallyMe

There is one thing that chronic illness, incapacity, pain and crappiness cannot take from me and that is love.

My love seeps into the lives of my husband, my family, my friends, my cat.  It’s not quantifiable, it doesn’t take effort, it isn’t about doing.  It’s just love.

In return I feel the love from them and it wraps around me. It soothes the worst days and lifts me high on the better days.

It never wants for anything.  It swells with an openess in my heart and mind.  It ever expands with a little trust.  It multiplies a thousand fold when returned.

Chronic happiness fuelled by love of the simple pleasures - a sunny sky, a tree waving in the wind, a twitching cat dream, a touch of the hand from my husband, a smile, a warm cup of peppermint tea, a smiley on the screen, some LOL.

I bought a folding walking stick this week - mainly as an experiment to see if it would help with balance.  Um … it does.  Which is good news.

I use a reacher because my back is bad and it saves some energy from moving about to get stuff. I noticed that when I went upstairs with the reacher using it as stick for support seemed to help.  So that, combined with knowing Rachel had success using a stick, inspired me to try for myself. I bought a fairly cheap one (£9.32 plus VAT) but it’s pretty light yet sturdy and I’m rather pleased with it.

I am really surprised how much it helps - particularly as I am wiped out this week and really weary.  It’s not so much for supporting my weight as my arms are too weak for that, but I can see in a desperate situation (like when I had to stand at my friends funeral) it would be a help.  Mainly it’s great for balance.  I didn’t realise how much I cling onto furniture, walls and doors before we filled in the DLA claim form and I had to really think about it.  Using the stick is like having something to steady myself with that moves with me.

I also feel a lot better about the idea of being out in the wheelchair (say at the theatre in December to see the panto) and then walking to the toilet if I have a stick to get me from wheelchair to toilet. Not only will it help with balance but it’s sort of more acceptable to other people I think and will be a visible sign of the struggle I have moving about in those kind of busy social situations.

I never thought a stick would be worthwhile but I’m surprised to say it is.  Having practised indoors I’m going to get the courage up to use whilst out.  I even have my eye on a rather colourful and funky Switch Stick (I found the purple polka dot one on ebay cheap which I might bid on) for when I’m feeling loud and proud

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

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.

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.

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.