Rescue

i shout i scream I cry, and still he watches. I shout I thump I protest. And still, he watches. I won't I can't, no No NO, i say. He. Watches.

I reach for the floor, the bottom of my will, the end of my line. Tear my hair out, scream the house alive.. spit and holler...

i pant, i moan, i lie wounded. And still. He Does Not Move.

I'm quiet. I breathe softly. I go inside. I raise my arms.

He Moves. His arm stretches out. He lifts me up.

He rescues me.


Today's favourite song: Lucinda Williams, 'Rescue'

What do you do when...

...you just lose interest in life..?

haven't wanted to write
haven't wanted to blog
haven't wanted to photograph
haven't wanted to participate

This month has been... awful


I have lost myself.


Today's song: Sia, 'Breathe Me'

Laffin'

Frankly, laughter is a bloody necessity when you think your life has gone down the toilet and you feel like death warmed up...

Remember ventriloquism??! I hadn't seen any for an age when I came across these.. and they had me rolling around the floor..

Three of my faves:

Nina Conti


Paul Zerdin


Jeff Dunham



Today's favourite song: Paramore, 'When It Rains'

Books

A couple of interesting books are winging their way to my bedside reading pile:

The Alchemy of Illness - Kat Duff

CFS is a call for soulwork - Gretchen Brooks Nassar

Am looking forward to gaining new perspectives on this illness business.

Reviews later.


Today's favourite song: Alphaville, 'Big in Japan'

My M.E. Survival Kit

A Good Mattress
Unfortunately, I don't have one of these - mine is rubbish. It's cheap and cheerful and I can feel the springs through it. To make it more comfortable, I put a quilt and a duvet on the mattress before the sheet goes on. My sister on the other hand, has a mattress that was hand delivered by a legion of angels straight from God's Heavenly Mattresses Inc. If I could shove it under my jumper and run out the door with it I would. At her house, I sink deliciously into this mattress and have the best sleep ever.

With M.E. you spend a loooooot of time in bed, sleeping, suffering, reading, tossing, resting, turning; so you do need a mattress that is good. Alas, for me, a good mattress is the 'one-day-when-I-have-money-list'.

A Chillow Pillow
One of these I do have. And this too, was invented by the Gods. It is basically a mini water-pillow. But somehow, it stays cold: All. The. Time. It is always within reaching distance and has soothed my brow on many an occasion when I am raging with fever or have the headache from hell (like last night). Like a lover, I wrapped the entire thing around me and hold it there until I can't feel my arms anymore. Suffice to say it provides stupendous, miraculous, positively angelic relief.

T'internet (+mobile phones)
I find talking knackering. It's one of the things that takes my energy the most. This is why I love the internet. I can know exactly what's going on that there world out there without ever needing to speak to another soul. Texting on a mobile phone also falls into this category. Frankly, I {heart} texting. It is the quickest, easiest way to communicate with someone and takes barely any energy. Hurray for Nokia!! The internet also of course, is the home of this icle bit of bloggyness. My lovely creative outlet and a place to put my thoughts when they need a home. Hurray for Blogging!!

Cats
I have blogged about my cats before, here and here, but I can never overestimate their importance in my recovery. When you're flat on your back, day in day out, in pain, unable to read, watch tv or see anyone, a little feline ball of furryness purring at your side can make all the difference. Especially when they also spend every night with you and snuggle up to your neck and sleep. You obviously have to get up to feed them, but other than that they look after themselves so are very little trouble.

Nurofen Plus
Not that I advocate the use of drugs, medicinal or otherwise, but these have been my saviour. I have been through the chemist's array of painkilling tablets, right and left, up and down, and all over again, and I always come back to this little white tablet. It makes the pain I'm in bearable, and allows me to live just that little bit better and whilst I do hope that once I'm well I never have to take one again, I am grateful for the tiny little powdered miracle that they are.


Today's favourite song: Tracy Bonham, 'Something Beautiful'

Dang, I gotta face it..

Ok, so something is up. I know this because:

a) I am eating more than I need..(otherwise known as comfort eating)
b) I am craving alcohol..

Together, they always means the same thing: something is up and I just ain't facing it...

... so I eat to make me feel better.. and I drink to make it go away..

Except, I barely have any food in the house, so am eating mouldy rye crackers and (vegan) cream cheese. Both of which I'm sure would be disqualified from a comfort eating contest. I've also been tee total since October, and don't plan on changing any time soon, so I haven't actually had any alcohol either...

So no hiding for me then..!

Something is UP and I don't want to DEAL with it...

But know I have to, else I'll put on a stone and end up in a vat of cheeky vimto...

I know where it is, oh that hideous, ugly rotten dark place called.... The Past. And it's not the nice past either, oh no, the murky painful depths of memories you'd really really like to put in a box and watch sail away into the sunset.. but no, instead, I need to watch Dr. Phil and:

name it to claim it..!!
feel it to heal it...!!

Oh Dr. Phil, what fun that sounds, I just can't wait!!



Today's favourite song:U2 'The Ground Beneath Her Feet'

Agony

Ah yes, agony, I know it well.

Far too well.

I recently had a piercing done. It was painful, but it gave me a moment to experience a 'different' pain to the one I am constantly in - it was a blissful experience.

The pain I suffer runs on a spectrum from say, 0-10. I am never at zero, and too often at 10.

Last night it reached 100.

I literally did writhe in agony. How could my body, the only one I have, feel so utterly, utterly dreadful. How it could betray me so much?! With wet towels wrapping my head, I sat in front of a cold fan just to try and reduce the fever. All. Night. Long. And that was only one part of it.

The difficulty? This is my silent pain. Why not talk about it? Because:

"Are you in pain flower"?

"Yes I am * [delete as applicable: friend/sister/parent/lover].

You might as well ask me if I breathe and if my heart beats.. the answer would always be the same. Do I continue having this conversation going into my 5th year of pain??! I choose not to.

The downside? People think I'm ok when I'm not.

The upside? If I told them the truth they'd be sick to death of me and the pain, plus, I get to be me (m.e.-less) now and again..

It's a difficult balance: sometimes I like that people can see me as 'me', sometimes I want to scream at them..'do you know how much I'm suffering?! But I think I do ok.

Pain killers lesson the effect. They're like cotton wool that takes off the edges. I couldn't be without them. I have to have something, something to lessen the agony. I don't want to take so many. But I don't want to constantly suffer either.

I do wonder what a pain free body is like, I really can't remember it. What is it like to have a body that feels, well, normal?? After all, I did used to have one! I don't know, but I do know that I am striving for it every second. And I will know, again.


Today's favourite song: Frou Frou, 'Let Go'

Everest

This is a quote from David Putnam, a Film Director who also suffers from m.e....

"I had a six-month period when I couldn't do anything," he says. "Nothing, really nothing. Going to the loo was like climbing Everest. It is impossible to explain to people how utterly debilitating it is".

Everest is a useful geographical metaphor that does justice to how ordinary life can feel so utterly extra-ordinary with this illness.

I live in a small town. I live in the centre of this small town. A very good friend of mine lives 10 minutes walk away on the other side of town. Getting to my friend's house involves climbing down a steep hill, then climbing up the other side. In ordinary pre-m.e. days this walk would pass in the blink of an eye and was certainly far too short to be considered any kind of serious exercise. Now, this steep decline and incline is my Everest. The walk to her house is unthinkable, unmanageable, unachievable.

But..

Something has changed.

Today, I walked to my friend's house. And perhaps the most important part, I didn't feel too horrendous for it.

For me, it was a HUGE, huge achievement. On the way back I wanted to hug everyone I saw and say 'hey, I did it!!' I. DID. IT!

Everest, here I come!

Today's favourite song: The Editors, 'Munich'

Vacation

I am on vacation!!!

It was a huge challenge. I planned to go, wait for it, ON MY OWN!!!

This revelation received a number of different reactions... terror at the thought... a turning-sideways-head pity look of a 'don't worry you'll have a husband one day too' ... and (my personal favourite) 'wow that's fantastic, what an adventure!' (Thanks Pen!)

It's not the travelling on my own per se that is the point here (I am the girl that went alone to South America at the age of 19). But it's my first trip alone since becoming ill. It is the first time that I am well enough to do something like take a holiday by myself. And oh, what joy it brings me... I CAN do it! I AM doing it!!

So, I am travelling around the beautiful countryside taking photos, marvelling at the scenery, laughing with strangers, cuddling their dogs. I still have to take it easy.. one day on, one day off. But on the off days I curl up in the beautiful cottage, watch the deer out of the window, listen to the owls, read a book, tip tap my feet to music . I joyfully bask in my own peace and serenity...

I raise a glass of juice, here's to many, many more solo travels. Hurray for me!!

Today's favourite song: Marcio Faraco, 'Ciranda'

Dark night of the body

Sometimes I'm so close I can almost touch it, that elusive beast 'normality'. That simple little pot of gold at the end of the rainbow... everyday normal health.

But I've overdone it again. I spent too much time talking to a friend, too much time holding my niece, I drove that extra mile in my car..

And I am stopped in my tracks, pain and illness gearing up for their assault.

The fevers appear, cold flannels on my head. The pain surges, out come the pain killers. Insomnia descends, church bells checking the early hours. Energy disappears...

The episodes are getting less frequent, they are lasting for shorter periods, and yet as close as I am to the finish line, I have never felt closer to giving up. I-just-can't-do-this-anymore. I want to cry and cry and cry and rage against the pseudo-dying of my body. And suffer, how I suffer. How I want to be saved from this.

So I wait. I wait however many days it takes to subside. Patience... I need to be patient.

And slowly, surely, the attack ends. I get up again and peek my head back into the world; energy temporarily restored; wondering when the next time will be; hoping there won't be a next time. How I marvel at the sunshine, the opportunities that lie outside my front door. I step outside and embrace life again knowing just how lucky I am to get it back.

And I know that one day, I know, that I will emerge for good, seize the world with both hands and never look back...

Lucky, lucky me xxx

Today's favourite song: Cut Copy 'Lights and Music'

Attack

Three days ago, I was attacked.

Ok, not by a shark!

And not physically either. It was a verbal attack.

The words used against me were particularly vicious. None of them were (or are) true of me. It was a crash between anothers' opinions and beliefs and mine. I actually respect their beliefs. They, it became apparent, do not respect mine.

What matters now is not what happened, but rather, who I became in the time that followed. It was a crucial moment. I asked myself this crucial question:

Where-do-I-go-from-here?

Do I:

a) stay, acquiesce to their demands and deny mine.

or

b) recover, stand firm and choose me.


I chose me.


Today, I woke early, dressed, saw the blue of the sky, picked up my camera and walked.

I walked a long time. I took 100 photos. I breathed. I reminded myself of all the good in me and finally, I hugged a horse, and I went home.

I-chose-me.



Today's favourite song: Snow Patrol 'Set the fire to the third bar'.