It's been a long time- catchup asap

May 12th is worldwide Fibromyalgia awareness day.

☆❤*•♫♥ "I AM ONE OF THE FACES OF CHRONIC FATIGUE SYNDROME & FIBROMYALGIA" •♫♥♪• MAY 12th IS CFS/ME/FMS AWARENESS DAY! SPREAD THE WORD, WE NEED A CURE! ♥♫•*❤☆

May 12th is Fibromyalgia awareness day.

So many people suffer in silence and are so often misunderstood. I've been told by people I love that it's "all in my head" and that "I am lazy". I know they don't mean to hurt me, but they just don't understand because it is such an overwhelming illness that affects our whole body and our whole being. Imagine having the flu every single day with a ton of other side effects thrown in too.

I'd like for you to take the time to read this if you would like to try to understand a little bit better:

For anyone who suffers or knows someone with Fibromyalgia...


1. My pain---My pain is not your pain. It is not caused by inflammation. Taking arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is my knees, but tomorrow it may be in my foot or arms. My pain is believed to be caused by improper signals sent to the brain so is not imaginary but neurological. It is not well understood but it is real...I feel bruised all over and just a touch can make me "ouch". Sometimes even my bedding on my legs is too heavy!

2. My fatigue---I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities but I cant. Please do not take this personally. If you saw me shopping yesterday but I cant help you with the anything today, its not because I don't want to. I am now paying the price for stressing my muscles beyong their capability. I sometimes have to cancel plans at last minute and often stop making them in the first place.

3. My forgetfulness---those of us who suffer call if "fibro fog". I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you just told me seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation but I also suffer with insomnia (I can't win). I do not have selective memory. On some days I just dont have any short term memory at all...

4. My clumsiness---if I step on your toes or run into you with my wheelchair in a crowd, I am not purposefully targeting you. I do not have enough muscle control for that. If you are behind me please be patient. These days I take life one step at a time...

5. My sensitivities---I just can't stand it. It could be any number of things; bright light, loud or high pitched noises, certain smells etc.. so dont make me open the curtains/blinds or listen to your child cry. I really can't stand it. Becoming overly stimulated is very easy, often by the simplest of things that you may not even notice.

6..My intolerance---I cant stand heat or humidity. I have hot flushes at any time where my head feels like it will explode with heat. Don't be surprised if I shiver uncontrollably when it is cold. I dont tolerate cold either. My internal thermostat has conked out and no one knows how to fix it...

7. My depression---yes, there are days when I would rather stay in bed or in the house and die. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge...a gentle hug may help me through.

8. My stress---my body does not handle stress well. I have to give up so much, even handling responsibilities via the internet from home can be way too much for me, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely...your judgement only makes my stress worse.

9. My weight---I may be fatter than I used to be. It is not by choice. My body is not your body. My appetite is broken and no body can tell me how to fix it...My metabolism does not work like yours.

10. My need for therapy---If I am lucky enough to go to Eden Hall Spa and swim in the salt water, it gives me temporary relief from these horrendous symptoms so please do not envy me. My body feels like it is filled with knots but I cannot bear even the gentle pressure of massage.

11. My good days---If you see me smiling or functioning normally, don't assume that I have been cured or that I am not in terrible pain. I have become very good at hiding it outwardly to save answering questions. I suffer from a chronic pain and fatigue illness with no cure. I can have good days, but they are very rare. I can't remember the last remission I had.

I hope this helps you to understand me, but if you still doubt my pain, your local book shop , library and the internet will have articles on "Fibromyalgia".


Please do not take my pain lightly. You wouldn't want to spend a day in my shoes.

I really suffer from Fibromyalgia, so do many people I love and have met through having this illness...so please, share this information with friends and loved ones and spread the awareness on "Fibromyalgia". Help to understand......

Thankyou,

Lyn xx

Hi, my name is Fibromyalgia

Especially for Fibromyalgia Awareness Day

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. I chose you for various reasons: That virus you had that
you never recovered from, or that car accident, or maybe it was the years of
abuse and trauma. Well, anyway, I'm here to stay!


I hear you're going to see a doctor who can get rid of me. I'm rolling on the
floor, laughing. Just try. You will have to go to many, many doctors until you
find one who can help you effectively. You will be put on pain pills, sleeping
pills, energy pills, told you are suffering from anxiety or depression, given a
TENs unit, get massaged, told if you just sleep and exercise properly I will go
away, told to think positively, poked, prodded, and MOST OF ALL, not taken as
seriously as you feel when you cry to the doctor how debilitating life is every
day. Your family, friends and coworkers will all listen to you until they just
get tired of hearing about how I make you feel, and that I'm a debilitating
disease. Some of they will say things like "Oh, you are just having a bad day"
or "Well, remember, you can't do the things you use to do 20 YEARS ago", not
hearing that you said 20 DAYS ago. Some will just start talking behind your
back, while you slowly feel that you are losing your dignity trying to make them
understand, especially when you are in the middle of a conversation with a
"Normal" person, and can't remember what you were going to say next!


In closing, (I was hoping that I kept this part a secret), but I guess you
already found out...the ONLY place you will get any support and understanding in
dealing with me is with Other People With Fibromyalgia....(or if you are
fortunate enough to have an understanding spouse, friend or family member).

F is for the fatigue and frustration we face each day,
I is for the irritation that we feel along the way.
B is for the bowels scene, never knowing what or when,
R is for the range of motion that comes and goes again.
O is for the optimists, who encourage and pray,
M is for the many, who are suffering today.
Y is for YES!, there will be a cure sometime,
A is for Always Hopeful, we will see it in our lifetime.
L is for the long nights of agony and pain,
G is for the gentle hugs to remind us we are sane!
I is for the ignorant people who think it’s all in our heads,
A is for appreciation, of those who support us instead.

written by Bonnie Howell

o/t I hope this makes you smile

A telephone conversation to a computer support line

"Good Afternnoon, Ridge Hall, computer assistant; may I help you?"

"Yes, well, I'm having trouble with WordPerfect."

"What sort of trouble?"
"Well, I was just typing along, and all of a sudden the words went
away."

"Went away?"
"They disappeared."

"Hmm. So what does your screen look like now?"
"Nothing."

"Nothing?"
"It's blank; it won't accept anything when I type."

"Are you still in WordPerfect, or did you get out?"
"How do I tell?"

"Can you see the C:\ prompt on the screen?"
"What's a sea-prompt?"

"Never mind. Can you move the cursor around on the screen?"
"There isn't any cursor: I told you, it won't accept anything I type."

"Does your monitor have a power indicator?"
"What's a monitor?"

"It's the thing with the screen on it that looks like a TV. Does it
have a little light that tells you when it's on?"
"I don't know."

"Well, then look on the back of the monitor and find where the power
cord goes into it. Can you see that?"
......"Yes, I think so."

"Great! Follow the cord to the plug, and tell me if it's plugged into
the wall."
......"Yes, it is."

"When you were behind the monitor, did you notice that there were two cables plugged into the back of it, not just one?"
"No."

"Well, there are. I need you to look back there again and find the
other cable."
......"Okay, here it is."

"Follow it for me, and tell me if it's plugged securely into the back
of your computer."
"I can't reach."

"Uh huh. Well, can you see if it is?"
"No."

"Even if you maybe put your knee on something and lean way over?"
"Oh, it's not because I don't have the right angle-it's because it's
dark."

"Dark?"
"Yes-the office light is off, and the only light I have is coming in
from the window."

"Well, turn on the office light then."
"I can't."

"No? Why not?"
"Because there's a power outage."

"A power... A power outage? Aha! Okay, we've got it licked now. Do
you still have the boxes and manuals and packing stuff your computer came in?"
"Well, yes, I keep them in the closet."

"Good! Go get them, and unplug your system and pack it up just like it was when you got it. Then take it back to the store you bought it from."
"Really? Is it that bad?"

"Yes, I'm afraid it is."
"Well, all right then, I suppose. What do I tell them?"
"Tell them you're too stupid to own a computer!"

WOW

The Facebook page I started to give support for sufferers of Fibromyalgia and Chronic Fatigue Syndrome has 81 fans (or likers) already!

I really hope it can be of use to people and is also aimed an friends, family, carers etc....It'll be great if we can support each other and let off steam if we need to as well, as everyone who suffers chronic pain just wants to scream every once in a while (well I assume they do, as I do-usually at my Husband as he is the closest one to me) Well vent on the discussions section, someone will listen and give wise, caring words.
As for myself, what a croc day, I took so many tablets which didn't even take the edge off my pain, I swear I'd rather have a baby every day instead! But then I had got that down to a fine art by the time I had number 5. I caught everyone out. Husband was still parking the car (luckily he dropped me off at the main entrance) The midwife still hadn't got her plastic apron on and the birthing pack was still wrapped up and my waters burst and K quickly followed. Made a lovely mess of the Midwife's uniform, haha ....and Hubby came in after parking the car to meet his son!

THE PERFECT MAN- author unknown

The perfect man is gentle
Never cruel or mean
He has a beautiful smile
And keeps his face so clean.

The perfect man likes children
And will raise them by your side.
He will be a good father
As well as a good husband to his bride

The perfect man loves cooking
Cleaning and vacuuming too.
He'll do anything in his power
To show his love to you.

The perfect man is sweet,
Writing poetry from your name.
He's a best friend to your mother
And kisses away your pain.

He has never made you cry
Or hurt you in any way.
Oh, "to hell with this stupid poem,"
"Cause the perfect man is gay!"

My Sunday.

It's nice to see a few people have become fans (or likers, lol) of the Facebook page. Thankyou. I hope it will help you if you want to ask a question or vent or anything!!

I've had a "usual" day apart from my ex Husband coming to take the boys out today and they went Kart racing and to the cinema to see Iron Man 2.

Middle son has whiplash and a bruised knee where oldest son crashed into him while Karting. This is the oldest son who is getting a motorbike very soon so I am worrying more so now, but he does need it for college in September. I just hope he has the brains to control it and uses the road safety knowledge he has.

The younger ones went to Sunday school and I had a nap.....after feeding my fish on "Tap Fish" on my iPod. I'm addicted to it and have 24 tanks which is a pain cleaning algae off 24 imaginary aquariums but then I don't play Farmville like most of my friends so I don't mind doing Tap Fish.

I am REALLY suffering pain wise at the moment and I wish the 21st would hurry up so I can try and get the morphine patches as these tablets are running out of my system too soon and the pain really gets hold of me again before I am "supposed" to take more. I woke up earlier in agony, felt battered all over and even though I took the tablets, I am still not anywhere near pain free (well I never get totally pain free) but my neck, arms and legs are just so tender, like I've been in a road accident.

Oh well, I can't do more, the tablets are slow release so no speedy recovery due so I am calling it a night and going totally offline to rest my arms on pillows and neck with a blanket rolled behind it and I already have a cushion under my legs. I hope to nod off again once the pain relief starts to work.

Ramblings for the day over. I'm hoping tomorrow will bring another beautiful day as I am so loved up with my Hubby at the moment (we have our rows being together almost 24/7) but I hope to spend time with him in the garden with the chookaloos and ducks.

I have set up a Facebook page

I decided to set up a Facebook page for sufferers, family, friends and carers of people with Fibromyalgia and Chronic Fatigue Syndrome because it's ok having the 12th May as awareness day but our illness and disabilities do not then go away until next years awareness.

I want to raise awareness all year round, hence this blog and also for other people who may feel alone and want to chat.

I am always happy to chat to fellow Fibro sufferers so it makes sense.

Right then, click here for the link. Have done it this way as the link seems very long.

As you can tell, Insomnia again!! AAARRGGHH, going to shut off the computer now and sleep, (I hope)

Can't sleep

I tried after taking my medication but all I can here is Hubby gently snoring whilst having the TV on. I'm having quite a chuckle as it is Russell Howard on so even though I cannot see it, it's still funny to listen to.
I napped for most of the afternoon as Hubby had made my bed up nice and fresh and reattached the pole for my voiles but he hasn't put them up yet and it's quite chilly in my bed near the window without them. You wouldn't think Voiles would make much difference but they are better than nothing.
My 2 oldest boys are off out for the day tomorrow and looking forward to it. That leaves Hubby and I with the 3 little ones who go to church on a Sunday morning.
I asked Hubby when my GP appointment is and it's on the 21st so I won't get any morphine patches before then and I really hope he will prescribe them for me with all the good reports I've had on them from Fibro Friends.
I'm going to the Mobility Roadshow at the end of the month (not sure if I mentioned it) I'm looking forward to it (if I can stay awake during a traipse to Peterborough and the day there) At least it's free entry so if I start flagging, I can go lie down in the minibus for a while.
I'm going to have a look on eBay at motorbikes now for my oldest son so I can point out a few potential models to my ex husband tomorrow.
Hopefully then I will be ready for sleep and I'm not in for an all nighter of insomnia as I hate it.

Slight mishap so we are playing Wii

Yes a slight mishap, at 9am I took another dose of tablets, cocodamol and a diaz and Hubby came for a snuggle. He can't normally sleep with me due to my wriggling, restless legs and general all night fidgeting. Plus I am often up for the loo in the night several times and needing access and help from him.

Anyway when he got in to snuggle me, the Labrador and terrier jumped on too and all of a sudden the curtain pole (black metal with spear like ends) with my luscious black voiles came crashing down (Yes my room is black and very gothic) I also have black walls and a blind too and a gorgeous purple lamp with studs, spider webs, laces and it's divine. (The black room also helps during a migraine when I cannot bear the light as the room is south facing and it will be even better when the gazebo goes up outside)

Obviously I then needed to be hoofed out of the bed for Hubby to sort out the necessary repairs and also change my bedding so I am now sitting in my super deluxe Care Flex Hydro Tilt chair (given to me by a true friend, Pam x) and am enjoying the Wii with the children (the 3 out of 5 who have bothered to get up) I had a turn on Wii Sports and did my Wii Sports age and I am proud to say I was 44 and last time (several months ago,) I was 43, so considering my ailments and lack of practice, I'm quite pleased seeing as I am 39 (in real life, lol). I was 80 when I first ever played.

Now my arm's REALLY aching and that is me totally done in now. I won't even be playing again today but am happily watching my youngest daughter getting strike after strike whilst Wii Bowling and I love being with them in the lounge.

I am starting to feel overcome with fatigue now though so I won't be here for long and then I shall go and curl up in my pit for a nap. It is very cold in our lounge as the council came to put us a wide doorway in so the wheelchair could access the hall and eventually outside (maybe??) but the builder didn't do it wide enough, so no door was ever put on and we have been forgotton about. The hall is cold and draughty as the the front door lets the cold in. If the hole this builder made is anything to go by, he put no filler in and was going to put architrave over the top but Hubby put filler in only to find out it's all got to be altered.

We intend to request for a fourth and final time that they sort it out and if not we will get a private brickie in to fill the hole and go back to how we were.

Right, I'm now over and out. Back later

Another all nighter :-(

I am so fed up with these all nighters spent on my own while my cocked up body clock will be comatose tomorrow! I don't want it to be as I want to be with the children.
Oh well, stranger things have happened-if I pour lots of caffeine down my neck (I know it's not good for Fibro sufferers but needs must) then I will be able to have a nice day with the kiddywinks.
I don't want much, just to get Hubby to put up the Gazebo (with Duct tape on the pole joints to last longer) and sit around the newish garden fire pit and be outside, it would be lovely.
Don't think my powerchair will fit out the back doorway though and I get so miserable when I have to be shoved around and have to rely on others.
I am really starting to hurt again and if I can just wait until 5am then I don't feel so bad taking my morning Morph & Diaz as by the time the kids jump to life the initial urgh (as they kick in) has passed.
Back later in the day. Hoping the weekend will be enjoyable. I hope yours is too!

Last night was hellish

Unbeknown to me I had ran out of Diazepam yesterday so even though I took an extra Morphine at "bed time", my muscles, joints, limbs whatever were so tightly knotted it was agony. I couldn't sleep so ended up on the computer and iPod trying to distract myself.
By the time my o/h could get me my prescription from the chemist at 9am I was climbing the walls so took another morphine which zombified me and then he came back with Diazepam which soon unknotted me and I felt much improved.
The problem then being that I'd had no sleep last night so the knock on effect is even more sleep in the day and I have to try and get a routine whereas I am just napping in the day rather than being borderline comatose.
So I haven't done a lot today. Mark sorted my claim out for ESA or whatever it is instead of Income support. The chap wanted to read the declaration to me like an electronic signature but I was "morphined up" and had to tell him it was going in my ear and hitting a brick wall so he's sending me a paper copy in the post. I got a doctors note for 13 weeks which should tide me over until I get a medical done although they did say they may use my DLA medical instead.

Another thing, I love my man to bits for all he does for me. I couldn't cope without him, so babe- I LOVE YOU xxxx

Fibromyalgia Awareness

Enjoy the images below. Please take time to understand Fibromyalgia as Fibro Awareness Day is 12th May

My stupid toenail O/T and gross

The title has warned you!!

Off topic but so what........a long time ago I did something to my big toe on my left foot, the whole toe was black and blue followed by purple n yellow and the nail was bruised too. I have no idea what I had done but found it hard to believe I could do something that looked so horrendous without knowing about it.

Anyway the nail has been growing and the bruise was almost reaching the end although covered by whole nail.
Today it was really throbbing so I thought "if I can just stab underneath the nail and relieve some pressure...." So I did, and I had a good poke and then lifted the nail and poked and pulled some more and the top half of the nail just tore across, no pain at all. So I thought "mmmm now what will I do as that bit doesn't hurt but the half still left does" so I poked and prodded with the needle some more and then tweezers and pulled the whole thing off. INSTANT RELIEF! No pressure, no pain and I realised my morphine must be most effective in my feet, lol.
Tonight though as the morphine ran low in my body it started to hurt so I've had my bedtime top up and am now off for some shut-eye.

I do some stupid things tho. My ex Hubby once took the dog for a walk at night and I pierced my nose while he was out, I've also shaved my head in mohicans/mohawks more times than I care to remember but hey I will only live once and I have to do something!!