M.E. survival kit_2

laughter

friends

sunshine


Today's favourite song: John Legend feat. Andre 3000, 'Greenlight'

Tips for coping

wear dresses in bed
get a cat
watch the little things
talk to your soul
love in the depths


Today's favourite song: Natalie Merchant, 'My Skin'

Serenity, Peace and Strength

6pm, Friday night, I am in bed. I am breathing slowly and chanting my favourite mantra...

serenity, peace and strength

(it gets me through some tough times)

Am in my jim jams, two cats under the duvet with me. My friends Lucozade and Ibuprofen sitting by my side.

The reason for this early retirement from the world is 'The Warning Signs'.

The Warning Signs are the signs I get that I am headed for am m.e. episode...

.....my limbs ache, my head is fuzzy, my chest and throat are sore, I feel very tired and very weak. When I get the warning signs I need to STOP and REST in order to stop the attack. Sometimes I'm too late, sometimes I'm ok. Tonight, I'm somewhere in between.

So, that is why, on a Friday night at 6pm I am in my jim jams and in bed.

Sometimes I feel sorry for myself, thinking about the revellers next door and how much fun they're having (i live next door to a pub). Sometimes I feel sad, for having been interrupted from doing something I love in order to force myself to rest. Sometimes I don't feel sad at all... like tonight.

I think about all the people out there who dearly wish that they could settle down in bed at 6pm on a Friday, with nothing to do and no one to see: all those cooking dinner for their families, all those still at work, all those starting their late shifts, all those still on their way home in the rain.

And here I am, all quiet, two cosy cats at my side, breathing slowly and deeply into the quiet.

..serenity, peace and strength.

..I. AM. Serenity ... Peace ... and Strength.

These precious words that keep my alive, keep me going, keep me brave, keep me strong.


Today's favourite song: Nas, 'Hero'

Let Go, Don't Be Mad

One of the greatest challenges brought by m.e. is:

L.E.T.T.I.N.G.G.O.A.N.D.N.O.T.G.E.T.T.I.N.G.M.A.D.

There are so many things that just break your heart in two if you let them...

Things you can't do, people you can't see, aches in your heart you can't fulfill...

I have this one this weekend. Someone I haven't seem for 17 years is in the country for a brief moment. I'm supposed to be driving down tonight to see them..

But I can't.
m.e. has me in her tight grip.

I want to rage, I want to beat myself.

But I have to let go
and not be mad
stay sane
and be my own friend
hold myself
and wrap me up in the tighest of embrace

Love me
Hold me
Be me


Today's song: James Blunt, 'Wisemen'

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'

Things I Am Grateful For. Part 2.

M.E.

I know what you're thinking... Are you ker-azy..??!! Hear me out!

Ok, so amongst the raging fevers, the crippling pain, the days in bed, the lack of energy, the lack of income, the myriad of cancellations, maybe I'm not so grateful, but when I look at the Big Picture, and look at who I am now, and who I was then, I am very grateful.

Why?

Because through m.e., I have learnt happiness. I'm talking about actual, bona fide, non-fleeting happiness, happiness that comes from deep inside. And it is real. And it is genuine.

Before, I wasn't a particularly happy person, not inside. I was eternally searching for it; through spirituality, consumerism, work, relationships, anywhere and everywhere. I constantly suffered because of it, through eating disorders, addictions, self-destruction. I questioned life incessantly and always got the same answer: 'Love Is Everything'. But I didn't believe it. I thought that far too simplistic and obvious to be true: and that love, I just couldn't find.

But just because it's simple, doesn't mean it isn't the truth.

Love is everything. It's love for oneself that is everything, and that is what m.e. has given me.

I was stripped of my life, my career, my money, my friends - in short, everything that makes up a 'life'. I became desperately ill. I visited many, many dark places. When you're life is taken, and you suffer intensely (physically, mentally, emotionally) you are taken to a place where you have a choice: you can hate yourself, berate yourself, blame yourself and despair, or you can search and find the real you inside, and love yourself, cherish yourself, take care of yourself and survive.

And in the craziness, that is what I did. And love for me is what I found.

So is it worth it? Well, don't ask me in the middle of a fever or when I'm doubled over in pain, but when my body is calmer, and I'm at a low 2 on the pain scale, then hell yeah, it's worth it.


Today's favourite (officially, my favourite ever, ever) song: Toure Kunda 'Emma'

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'

The Alchemy of Illness

In bed again, with a sore throat and no energy.

Again.

Have just cancelled a date with a friend to visit some photograph exhibitions which are only on this week.

Gutted.

Again.

In my sadness I reached out and received this message:

A sacred illness is one that educates us and alters us from the inside out, provides experiences and therefore knowledge that we could not possibly achieve in any other way, and aligns us with a life path that is, ultimately, of benefit to ourselves and those around us.

Deena Metzger
http://www.gratefulness.org/t/body.htm

Wow!

What an awesome, thrilling, inspiring message. It is my path! it is my journey!

How grateful I am to be honoured with this sacred illness and all the blessings it brings me.


Today's favourite song: The Organ, 'Memorize the City'

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'

Bed Day Today

Another bed day today.

So, so tired.

All limbs ache; head is heavy; the beginnings of a fever chase my brain.

So, so lacking in energy.

Still under the duvet.

Willing the pain to go away.

Tick tock tick tock.



There but by the grace of God go I.





Today's favourite song: Sting feat. Cheb Mami, 'Desert Rose'

Healing...

I have embarked on two different techniques that claim to heal/cure m.e.

The first is called 'Emotional Freedom Technique' or 'EFT'.

Wikipedia explains:
Proponents of EFT claim it relieves many psychological and physical conditions, including depression, anxiety, post-traumatic stress disorder, general stress, addictions and phobias. More claims have been made for multiple sclerosis and one proponent claims that "you can also use it for everything from the common cold to cancer.'" The basic EFT technique involves holding a disturbing memory or emotion in mind and simultaneously using the fingers to tap on a series of 12 specific points on the body that correspond to meridians used in Chinese medicine. The theory behind EFT is that negative emotions are caused by disturbances in the body's energy field and that tapping on the meridians while thinking of a negative emotion alters the body's energy field, restoring it to "balance."

The theory states that negative emotions are built in the following stages: A negative experience occurs; negative emotions are felt in response to this negative experience, leading to inappropriate programming inside the body; and then the body's energy system gets disrupted due to these negative emotions. The contention of EFT is that in order to remove the negative responses, tackling the negative experience is not enough, because doing so cannot correct the energy imbalance. Rather, the energy imbalance must be restored along with curing the negative emotions.

It is an odd process!

I basically hold an image in my head of what having m.e. means and then tap various points on my face and body. (How to subtly do this whilst in Sainsburys I have yet to master...)

More info:
www.emofree.com
www.tapping.com
www.eft-therapy.com

The second technique I am following is called 'Gupta Amygdala Training Programme' and is pioneered by Ashok Gupta.

His website explains:
Although this is a drug-free therapy, Ashok clearly states that ME/CFS is a real physical condition, with real physical symptoms. This is based on his medical paper which was published in a medical journal in 2002. The explanation is based on the role of a brain structure called the Amygdala, which Ashok believes keeps the body in a permanent imbalanced state, causing all of the symptoms.

This programme is so powerful and Ashok believes in it so much, that it comes with a guarantee that it will definitely help you recover from your condition. If for any reason you don’t find it improves your health within 6 months, after 6 months you can return the whole programme and get your money back. And in fact 6 months is the maximum amount of time anyone has taken to show significant improvements, so the results are likely to come well before that.

The medical research behind it is very, very interesting and I'm jumping into the programme feet first!


More info:
www.cfsrecovery.com

So, will either of these techniques bring an end to my m.e. journey...?

Time will answer that question...but here's hoping..

Today's favourite song: Lorraine, 'I Feel It'

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'

The Truth

I watched this video and with every word I nodded my head.

This was my experience. This was (and sometimes still is) my truth:


Courtesy of www.sleepydust.net

Today's favourite song: Babybird 'Back Together'

The Importance of Being a Cat

With M.E., you can't really 'do' things. And you spend A LOT of time by yourself.

A LOT of time quietly in a bed or on a sofa.

Understandably, it is difficult not to be filled with a profound sense of solitude: 'Out There', life continues apace whilst 'In Here', it is just you, your resting place, and your silence. You can't watch TV - it hurts your brain, you can't listen to music - it hurts your ears, you can't talk on the phone - it hurts your throat, you can't meet with anyone - you're just-too-tired.

So it's you, your sofa, and your friend silence...

... then in walks The Cat..

Olly the Cat.

A present from a loved one to keep you company. A ginger and cream Burmese dynamo. A Top Cat with the loudest miaow (and purr) in Catville.

You are no longer alone!

You can't talk to the cat (not in words anyway) you can't share your burdens with your cat (at least not if need a response) but you can be loved, can be snuggled with, can be purred at, and can be made to feel the most important person in the universe.

Life is different. You can't feel solitude because you have a permanent friend. You don't feel scared because the purring is too sweet, and whilst you can't do much else, you can help a little fur ball. You can give him a loving home, you can feed him the best food, you can play with him and groom him, and you can love him back. You can, at last, 'do'.

So, to the person who gifted me Olly the Cat, and for Olly the Cat himself, I express my deepest gratitude for making my (m.e.) life just that little bit better... xxx

Wish for Olly

(Cat)sites:
acatslife-tia
newcats
www.moggies.co.uk
www.funnycatpics.com

Today's favourite song: Prefab Sprout 'Life of Surprises'

Engage

I feel like I'm coming back to life.

Four years of illness and I feel like I'm slowly emerging from the chrysalis.

I know my future involves creativity but discovering in what form that might take has taken a while. The answer? Through the internet: blogs, photography, songs, words: from around the world. I'm still struggling to engage with the real word, my body isn't up to it, but... Emerging from the fog, I need to learn to write again, to see again, to feel and to experience again. I have seen beauty in this illness, now I will discover beauty in the (cyber)world around me.

So today I begin my blog. It revives me to feel a purpose in this world. Can my purpose be just thoughts on a page? Somewhere, somehow, they are important. So, I will be exploring (my) life through blogs, photography, songs and words. I'm looking forward to the ride. Come right along with me.

Flower xxx

Today's favourite song: The Oyster Band 'The Oxford Girl'