Showing posts with label M.E. Awareness. Show all posts
Showing posts with label M.E. Awareness. Show all posts

Wednesday, 21 September 2011

Every picture hides a story

Got energy in spades...but what about an hour or two later?
I posted this photo as a joke on Twitter and Facebook today. I'd simply taken it to show my Mum the new dirt-cheap shovel I'd just had delivered from Amazon.

When she comes to help me with little garden tasks like cleaning up under the wild bird feeders, gathering leaves, a spot of snow clearing from the path to the door, a shovel is something my household toolkit has lacked for many years.

I've a dustpan. Too flimsy and small. 

I've a spade, too heavy and flat.

So, I decided to buy this cheap shovel to make life easier. Not for me, usually, but certainly for those generous, kind and fit enough to lend a hand when they can. I need a small step ladder for the same reason. Not because I could climb it, as I am at the moment. But folks who come to help with little household jobs from time to time aren't all as tall as I am!


The joke was that I was imagining this image of me brandishing the shovel is what an intruder might reasonably be expected to be confronted with in the middle of the night, with this lethal looking weapon on site!


My natural affability tells everyone who knows me this would be the furthest thing from the truth. I captioned the photo:

"They'd be shaking in their shoes. Not!"


But the punchline, from an M.E. point of view, is even further from the obvious message this image conveys on the surface.


The shovel isn't very heavy. But within an hour or two, after just lifting for this shot, my wrists and chest are on fire, the following day, from the effort of posing for it. That's the part nobody sees when we're gripped by myalgic encephalomyelitis.


We all tend to wear our outside face for the world. For me, that's the genuinely jokey, positive, laugh-a-minute, glass-half-full face. That's one reason even friends sometimes forget what that positive energy expenditure actually costs me. That's what you never see; what you don't see happens once the shutter has clicked closed and the camera is laid aside because your wrists are too weak to lift a fork or your balance too shaky to stand or sit without nausea.


Every picture tells a story.

Every picture hides a story too.

Like the iceberg we say we've "seen" when we only glimpse the tip above the frozen ocean.

The camera doesn't lie; but it can't always show the whole truth.

It's a snapshot in time; but M.E. is a fluctuating illness, within a year, a month, an hour, moment to moment.


I still want to make you smile, like I always did when I was well enough to bounce.

But please be careful you don't judge the book by its cover, when a friend with M.E. puts their best foot forward for you. Or I might need that shovel after all! Now that IS a joke, honest! :D

Friday, 27 May 2011

Crazy little things that "crash" you!

Isn't it crazy what things can crash you with M.E.?

It's often the so-called "little" things that catch you out.


As you'll maybe have read in my last post, I've had this chest/throat bug that's being going round.


Felt a bit of improvement in my throat by yesterday.
So had a bit of a sing to my iPod.
Not much problem.


As I've not been well enough to use up all my tiny gram of spare energy this last few weeks on dressing, I got dressed. 


The aquarium hasn't been properly cleaned out for the same period.


With support from my Mum I gave the fish a good scrub out and changed the filter.


For a while I felt great. Well, great-er. Well, relatively great. lol.


Aquarium cleaned (with help carrying bucket etc)
Dressed and up and eating a bit more.
Singing.
It's not running a marathon or working a 9-5 job, now, is it?


By last night and this morning, it's all kicked in.


I can hardly lift my hands and arms without them trembling and feeling sick. My wrist and hips actually were making audible "crack" sounds last evening. Yes, audible. To an outside ear, so it's not "all in the mind". (Hahahahah, as if!)


My voice is weaker again. Hurts my chest muscles to speak. Half of what I try to say I'm losing the words. Typing this, I have to keep re-typing and checking the mistakes. The floor is unsteady when I get up, when I stand. Everything is like mountaineering today. Thank the Lord for spellcheck and leisure to do it all inch by inch. Cognitive treacle. Muscles scrambled with post-exertion malaise.


Up this morning, but will really have to have a couple of hours lie down this afternoon to try to recover.


Some days you get sick of the idiots who still think M.E. would disappear if you just thought positive and DID more. I DO do more. I'm never anything but positive. Afterwards it can leave me as weak as a kitten, and as addled as someone with serious brain, nerve and muscle disfunction, twice my age.


That's it for now. All the joined-up thinking I can manage for now. Tomorrow's another day. Rejoice in every second. Don't let 'em get you down!

Thursday, 14 April 2011

In memory of Lynn Gilderdale

Today's blogpost is in memory of Lynn Gilderdale, tragically stricken down with M.E. at a young age and trapped by it in one of its severest forms until the age of 31, and for her loving mum Kay who tells us their story. It's also for everyone who knows someone, or is someone with M.E.

If you have ever said to someone with M.E. or CFS or another of the many invisible illnesses people struggle with every day,

"But you don't look sick/ill...." or "It's just mind over matter. I get tired too...."

because you thought they should be able to "snap out of it" by "positive thinking" or because you felt helpless at them "still" being ill when it became uncomfortable for you to deal with, and if you would have been shocked and offended by them not replying:

"Thank you. Glad you think so," or maybe "Well, I'm all the better for seeing you!" (as I very often say!), but rather:


"No, I don't look sick. You don't look stupid either..."


then maybe you'd better not read or listen to the links below. Or perhaps, all the more, you really should.

Please don't read further if you'd prefer to think of M.E./CFS as some joke or cushy "lifestyle choice". Or this will shock you and possibly upset you. It should. There are some difficult issues here, whatever you believe or don't believe about the sanctity of life and freedoms of choice. But some of us can't just look the other way on this one. Because we know at first hand some of the whirlwind of havoc M.E. can wreak in a vibrant, positive life.

Maybe you will find the wisdom, grace and compassion to try and understand more too. Maybe it will change the day of someone you know with this thankless monster of a disease. Maybe it will save somebody's life. Thank you.


Kay talks about her daughter Lynn Gilderdale's tragic struggle with M.E. (Kay's article in today's copy of the Daily Mail)

Kay interviewed on BBC Radio 4's Woman's Hour today