Le Re-tour

Today is ME Awareness Day.  How do things look for us? In comparison to five years ago when I last wrote things are much much better. Then I really had no hope of any treatments nor decent research. Today, we are getting more mainstream media attention, it's often far from correct with its facts but at least we're more in sight. We are still misunderstood as to how the illness affects us but slow, steady steps forward are being made.

Research is really coming along and I do now have hope for the next few years.  However, we are still woefully under funded to really make the huge breakthroughs we need.  As a community we are stronger than ever with some incredible advocates who have made this all possible and to them I send my humble gratitude. But to get a huge groundswell of activism going is hard due to the nature of our illness and the worst of us are house and bed bound. We need as many 'well' people as possible to do it for us, so if you'd like to help out in any capacity, I can definitely point you in the right direction.

So there is at least some sparkling lights of positivity for the future, the question is can they help the sickest and those who have had this illness for a long time. Those who have had it for a shorter time have a far greater chance of recovery if intervention happens quickly. This is so encouraging for those being diagnosed now, and it is great news for all those to come. Hopefully soon no parents will have to watch the illness ravage their children & then have them taken away by child services or psychiatrists. Hopefully no one will need to take their lives due to not being able to stand the pain and utter discomfort any more. And hopefully no one will have to die slow, horrible deaths with years of wasting away forgotten and untreated. But for now, this is still happening.

If you feel moved to help us here are a couple of great charities to give a small donation to or just spare a thought for us and share details of the illness with someone today.

http://www.ukrituximabtrial.org/iimeukrt%20donate.htm

http://www.microbediscovery.org/donate.html

http://www.meresearch.org.uk/

Windows in Time

I have a window, a brief, clear window. The sun shining brightly through it, always open to let the cooling breeze waft over my awakened body. It’s been a long wait this time around, in fact I’d really started to believe that the window had closed for good. However, here it is it’s been here now since the beginning of January. I know some of you will believe and want me to believe that it’s the beginning of the end of my illness and I know that comes from a good place in your hearts. I wish belief was enough to cure me and all the other sufferers of this disease. If belief could do it, I tell you all the hope and the pleading that we all do everyday would be enough to cure all ails. Sadly belief will not cure ME just as it doesn’t cure cancer.

But my window has been left ajar and I’ve climbed through it. My feet are dangling over the edge and the feeling of freedom is palpable. I can feel the air passing through my toes, the rough edges of the brick walls against my soles. My hair gently being tossed by the wind, the air gently touching my skin, bringing a freshness long forgotten. Of course my freedom is laughable to a well person; it means that I can go out for coffee or lunch once or twice a week or have a visit from a friend. I’m able to have a good chat without feeling absolutely dreadful and every motion or word being such a weight or making the room spin. After each of these meetings though I’m exhausted and I need a few quiet days to get over them but I can live, just a little. So many other sufferers don’t get these “better” periods. The fact that I do makes me so grateful because when I am at my worst for long, extended and drawn out periods I know what it’s like. Some people have been in that state for years without the slight relief that I get from time to time.

How do I know that I'm not going into remission after four years. I know because I still feel ill; constantly symptomatic. Also I’ve been here so many times before and experience has taught me that I just need to embrace these moments and enjoy them whilst they are here, taking care not to over do things. I usually get a couple of months until I go back into a more severe state of illness, the worst periods always last longer than the easier ones unfortunately but for the moment that is in the future. This illness affects us all differently and this is how it affects me. I’ve accepted it for what it is. I am just overjoyed that finally after a year of hell the seal on my window broke and I have the energy to climb up and sit on the sill.

Old Shoes

Like old forgotten shoes in the back of the cupboard

Waiting to found.

To be dusted off and polished,

Once more to be in fashion, soles upon the ground.

The comfort of the ages gliding around the floor.

The feel of the familiar,

My bare feet regaling, alive once more.

La Dose

Fais-moi signe.

Un clin d’œil

Ou deux.

Trois même,

Si ça te fait plaisir.

Pour ma part une moitié

Sera suffit.

Je ne suis pas gourmande,

Juste en manque.

Here's the translation.

The Fix

Give me a sign.

The blink of an eye

Or two.

Three even,

If that’s what works for you.

For me just half is enough.

I’m not greedy,

Just in need

Of a fix.

Wilfrid

Will fried

Will fried pie eyed

Will fried cried

"La plus bonne de toutes les filles,

Une fille terrible."

Will fried

Will fried disguised

Will fried tried

To explain, falling over

Her apron strings

Paris 1998

Gone

Rattling 'round the jingle jangle of my time

The isidious, seeping sentimentality of your lost soul.

Screaming as it peters out,

Knowing it will be consecrated to the dwindling periphery

Of tomorrow's crucified dawn.

Manchester 2009

Trust

I

Me

Myself

I

Me

The one

The only

I

Not you

Not he

Not she

But I

The be

The end

The all

I

Manchester 2004