Monday, 2 April 2012

The Alternative ME Dictionary: Letter V...


When doing the actual things you want to do become difficult, us MEers tend to rely more heavily on the word ‘virtual’ instead, and day-dreaming takes on a whole new meaning. For instance, instead of going to Australia on holiday, I created Australia in a virtual holiday for my friend’s birthday. Something I never would have taken the time to do in my well days but it was really good fun. Give your brain a bit of thinking time and it really is amazing what it can come up with. We had shrimps on the barbie, dangling cork hats, safari, barrier reef experiences and my favourite - a sunshine Sheila beach chick cardboard cut-out, and may I say Sheila got her fair share of male attention too on Sydney aka Norfolk beach. Numbers were swapped and future dates arranged. Sheila has officially got it going on. You see, we already live in a world of computing and technology, so all having ME does really is bring us slightly ahead of the game. Going virtual will be global before we know it - what trend-setters we are.

Tuesday, 20 March 2012

My Journey of Recovery: Rejoining the world...

So once I’d done all the grafting -10 years of it I’d like to point out - I thought all the hard work would be over, but new challenges seemed to spring up that I hadn’t even contemplated would be difficult. I’d learnt to accept the temptations as they banged on the door with their ‘boom and bust’encouragement. I’d learnt when to risk it and when to say no, and limited the ‘I know I should say no but hell, I’ll risk it anyway and to hell with the consequences’rebellion. I’d found a reasonable balance and harmony, of a fashion, so surely I was home and dry, right? Wrong. Because in walked normal living.

Sounds the easy bit, right? Wrong again I’m afraid. You see, very few of us are lucky enough to go from ill to well overnight, so I found myself, and still do, in a kind of middle limbo land. Now that’s not an island whose inhabitants do nothing but dance under poles, but a state of disassociation. How does one transfer from tears of groundhog day to flexibility and choice without going crazy and overdoing it? Remember you’re not well-well, just a lot better. Not easy I can tell you. After years of being housebound, the freedom to ‘go out’ is a little overwhelming in the ‘where do I pitch it’ stakes. But gradually it’s slotting into place. My endurance continues to improve and everything is done once, and again, and soon becomes habit.

We’ve talked about ‘age amnesia’ in the past and it becomes even more apparent when you attempt to fit back in with people in the outside world again. They’re just not in the same head space as me. I don’t want kids and a mortgage and settling down. I want holidays and travelling and cramming the good times in. They’re living the 30s; I want to live the 20s again. This, coupled with not recognizing anywhere you go after a decade in isolation, is weird to say the least. But if you embrace it all, you’ll be ok.

MY ADVICE DURING GETTING YOUR LIFE BACK AND REJOINING THE BIG WIDE WORLD?

Try not to…

· Show your ignorance

· Get lost

· Feel like an old fart

· Get drunk on half a shandy

Saturday, 10 March 2012

The Alternative ME dictionary: Letter U...


I am not a morning person. In fact I hate mornings to the point that it really isn’t worth speaking to me before 10am. This is not a post ME revelation for I have always been the same (as Oscar Wilde quite rightfully stated “only dull people are brilliant at breakfast!”) so with this knowledge of my personality, you can see how important looking nice was for me when I say that although I snoozed the alarm endlessly before work, I never ever left it that late that I couldn’t wash my hair before I fled to the office. There was no way I would let anyone see me with greasy hair. So let us now bring ME into the equation; unsightly is not the word. Suddenly my middle name is Waynetta! After those agonizing months of being too poorly to regularly keep it clean, I can now wash my hair every day without fail, and will never ever complain about having to again. Looking presentable is a huge boost and I’ll never take it for granted again.

Monday, 5 March 2012

It's Good to Laugh...


Having a long term illness isn’t a lot of fun. Sometimes there isn’t a lot to laugh about but it’s so important to remain upbeat and not lose our sense of humour. Here are 10 researched and documented health benefits of laughter:

1)      It reduces stress hormones

2)     It strengthens the immune system

3)     It promotes good mental health

4)     It burns calories

5)     It manages pain

6)     It manages anger

7)     It promotes and strengthens interpersonal relationships

8)    It’s good for the soul

9)     It’s great for kids

10) It stimulates creativity

To find out more detail about these benefits and how they can help you live a happier and healthier life, despite having ME, check out the link below:

Tuesday, 28 February 2012

The Small Stuff...


Tired of waiting to get well? Want to start living life now?

 ME can take away everything and leave you lost as to who you really are. When this happened to me, this is what I did…

 I wrote down all the things I wanted to be able to do, that would give me satisfaction and enjoyment and give me, me back. Then I worked out how I could adapt that ‘wish-list’ to be able to do things now. For example, I couldn’t travel so I got Bill Bryson audio books out and listened to his witty accounts of far off places instead. My main value in life is to have fun, fun, fun, so the now famous ‘shorty theme events’ began. It really is true that if your outlook is right, the small things in life can be the best - and the best things in life can be small. Well actually its free - according to the cliché - but even that applies, take sunsets, sunshine and the sea.

 "Flow is being absorbed in what you are doing and experiencing, a feeling of transcendence over the mundalities of life”… Ok so I’m yet to be overjoyed at the prospect of putting my Friday rubbish bag out but I do now kind of get what this means. ME has taught me to laugh at everything and enjoy it, even the frustrating stuff, because when your outlook is right, you are shielded somehow from the testing stuff - not as in it no longer happens to you, sure it does, but more as in the rose tinted specks theory. For instance, a rainy day is a rainy day - but it is not a miserable day, just a wet day - there is a big difference.

 I guess it’s a bit like when people find out they are dying from a terminal illness - they end up doing more in the last few months of their life than they did in the whole 10 years previously. Everyone thinks there is no urgency; they get caught up in routines assuming they have all the time in the world, when really every day is up for grabs to make the most of. ME, for all its faults, does teach us this. I have always had a huge list of things I want to do and achieve, I call it my ‘Resolutions’ book - it seems a bit bizarre to be able to say it, given how ill I have been over the last decade, but I have actually achieved more from that book since I have been ill than I did when I was well. It was almost like I was too busy being well and all that entailed, to stop think and focus and do all the things, great and small, I really wanted to do.

 Make time for what matters. The small stuff becomes the big stuff in the end.

Friday, 24 February 2012

The Alternative ME dictionary: Letter T...

Treatment
Now that’s a word that changed meaning the day we got ill. Prior to discovering the joys of ME, I was firmly deluded in the belief that if you got sick, all you had to do was go down the Doctors (once I might add, or twice if you were very unlucky or really poorly), get the relevant medication, remember to take it and hey presto - one week later you forgot you ever felt icky. Yeah sure, sometimes the pills made you feel dodgy first or brought you out in a cold sweat at the thought of swallowing such a torpedo - but once those stumbling blocks were overcome, you were home and dry.

 Now though, well what can I say - it’s a little more random than that. For a start one visit is more like six visits before you are taken seriously at all, then they either give you incorrect advice, no advice or very bad advice, and ultimately you are left to work the whole damn thing out yourself. From what makes you bomb, to what pacing regime picks you up, to what supplements to take and what foods to avoid. Blind medicine you could call it but prescribed medicine you definitely would not. 

 If on the rare chance your doctor actually does give you something to ‘try’ then it’s a random lottery as to the outcome - could be better, could be worse, no-one really knows, not even your Doctor. And suddenly 11 days is no longer the longest you’ve ever been ill - suddenly we’re talking years… Oh god, this is depressing - quick prescribe me Valium…I said NOW!

Wednesday, 22 February 2012

Guess Who?

Street cred out the window,

As I sit in my wheelchair.

Hoists and stenna stair lifts,

I could do with but wouldn’t dare.

I know what you’re thinking,

As you put in a ‘guess who’ plea.

Are you an 80 year old lady?

No, I’ve got ME.



“Hello you’re looking well today”

Well why do I feel like shit?

You don’t see me when I get home,

And return zombie-like to my pit.

I know what you’re thinking,

As you put in a ‘guess who’ plea.

Are you blagging social security?

No, I’ve got ME.



“You coming down the pub tonight?”

Sorry no energy to spare.

“But you haven’t come out in ages”

I know it’s so unfair.

I know what you’re thinking,

As you put in a ‘guess who’ plea.

Are you a miserable person?

No, I’ve got ME.


I really ought to wash those dishes,

Save a job for Mum.

I put the Olympics on TV,

It’s exhausting just watching them run.

I know what you’re thinking,

As you put in a ‘guess who’ plea.

Are you a lazy so and so?

No, I’ve got ME.


Then my good friend pops over,

For 30 minutes of uplifting cheer.

We laugh our heads off as I say ‘I ming’

Just look at the state of my hair.

I know what you’re thinking,

As you put in a ‘guess who’ plea.

Are you always so fun and bubbly?

No, but I try to be.


Personality is concrete and always shines through,

Regardless of good days or a downhill run.

My motto for life still remains the same,

Simply: friendship, laughter and trying to have fun.

I know what you’re thinking,

As you put in a ‘guess who’ plea.

Are you the one with ME?

Yes, but I’m also me!