Fibro Awareness day

[sloth]

What have you done today to help raise awareness. Today I plan on making a video, well try. The past couple of days Ive not been out of bed

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oh thats a good idea yes i am wearing a purple top and may be butterfly badge or brooch if i can find one round the house i am on my own little diddle fibronyalgia crusade lol love to you diddle x

[sloth]

Ok so this video thing its just confusing me and annoying! haha

I have posted this on my facebook status, twitter, blog and others to help people understand.

" 'Happy' Fibromyalgia Awareness day.

Fibromyalgia is a musculoskeletal disease which causes constant chronic pain all over the body. It is known as the 'Invisible Disease' as people with it look completely 'normal'. In society if you have something wrong with you which can't be seen then you are just plain lazy! IT’S ALL IN YOUR HEAD!!!

I am the human SLOTH.

I am always so very very TIRED no matter how much sleep I get.

I suffer from Fibromyalgia

Chronic Fatigue Syndrome

S.A.D

AND Osteoarthritis in both Knees.

EVERY DAY IS A CHALLENG!

My body burns and aches from head to toe EVERY DAY.

I CANNOT remember a day where I did not have pain.

I’m Hypersensitive and my skin hurts!

There is NO CURE only pain killers and muscle relaxers that don’t really work, just dull it a little.

Diets, exercises and Drugs DO NOT work.

You have to learn to manage things, except you can no longer do even the simplest of tasks, which is easier said than done. Even on a ‘good’ day you have to learn to not over do things and put your feet up or you WILL make yourself ILL. I am VERY STUBBORN and continue to push my body to the limit.

I am my own worst enemy.

It upsets me to no end that I CAN NOT do some things, but still try to force my body into doing them as I don’t want to be seen as WEAK.

:’(

I have always known that it was with me, but I could never explain it. My doctor would always turn me away and pass symptoms off as something else. I once told him I felt like body parts were dislocating or trying to snap, he laughed at me.

My immune system is rubbish and I catch EVERYTHING. Fibro symptoms:

Widespread pain

Heightened pain in response to tactile pressure

Weakness in the limbs

Nerve pain

Muscle twitching

Feeling of pulled/stretched muscles

Constant flu like feeling

Fatigue

Anxiety

Depression

Headaches

Impaired concentration

I.B.S / Bladder

C.T.S

Pins and Needles, Tingles

Irritable / Weepy

Morning stiffness

Problems with thinking

Prolonged muscle spasms

Problems with short and long-term memory

Short-term memory consolidation

Diminished attention span

Impaired speed of performance

Inability to multi-task

Chronic sleep disturbances because you can’t get comfy. You can’t stay still for too long because you get stiff and hurt. You can’t move too much because it causes you to hurt.

Inability to perform daily living activities!!

AND MORE…

I have a hard time making and KEEPING plans because I never know what mood my Fibro will be in.

“Hi....My Name is Fibromyalgia, and I’m an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over. Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me…”

When I was younger I remember having the energy to hang out with a friend who I will call ‘L’ not to name names. L said to me ‘I don’t know what ‘P’ is on about, you’re really cool’. I asked her what she meant, which really got to me and made me cry. ‘P said you never come out, always cancel on people and your boring.’ I had a lot of time off school and often spent days in bed as I could not move. It felt like someone was physically pushing and holding me down.

Because of this I spend a lot of time ALONE. I feel weak, exhausted, sad, frustrated, LONELY, hopeless, sore, overwhelmed and MISUNDERSTOOD.

I avoid going out and communicating with others not just because of the pain but because of ‘Fibro Fog’.

‘You know you've got brain fog when ... I'm sorry, what were we talking about? ‘

I'm often hit with overwhelming tiredness and get brain fog... or 'fibro fog' as it's called. I suffer from memory lose and speech problems. Because I am unable to get into the important level of sleep I take months to heal, become very forgetful and often slur my words. It’s very frustrating, I know what I want to say but it never comes out right. It makes me look so thick... So stupid... But I know I'm not! So I tend to stay quiet, so not to embarrass myself…

I’ve had to give up so many things I love.

I hardly do photography anymore because I have so little energy.

I’ve sold all my instruments because it upsets me to see them getting dusty. I could no longer play them because repetitive movements kill me.

I want to be able to do those things again. To wake up pain free and enjoy life, not recover from it.

I used to spend hours doing my hair, spiking it, dying it… I want to have the energy to make myself look good again, to wear clothes without them feeling like there rubbing my skin raw. To feel comfortable.

Please try to understand myself and others.

Please help raise awareness and help find a cure.

NO ONE deserves this amount of pain.

fibromyalgia-associationuk.... "

I'm currently looking into ways I can raise money towards a Fibro Charity. I obviously cant do a run, maybe a sponsored walk around the park? Might not be a huge deal but for me its huge. Also looking into making support bands and pendants as I've recently got into making jewelry as a hobby. All money would go to charity.

[soulsusie]

Wow Sloth............ never a truer word spoken!!!

Thankyou for being a brilliant sokesperson I would imagine that you are sleeping after that !!!

Soft Hugs on National Fibromyalgia Awareness Day

Sue x x x x x