Existing with Fibromyalgia and CFS

It's been a long time- catchup asap

2010-09-16T03:50:00.001+01:00

May 12th is worldwide Fibromyalgia awareness day.

2010-05-11T23:03:00.005+01:00

☆❤*•♫♥ "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

2010-05-11T22:53:00.003+01:00

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

2010-05-11T04:15:00.002+01:00

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

2010-05-11T04:03:00.003+01:00

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

2010-05-10T05:19:00.001+01:00

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.

2010-05-10T00:37:00.005+01:00

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

2010-05-09T05:05:00.007+01:00

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

2010-05-09T00:34:00.004+01:00

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

2010-05-08T09:44:00.004+01:00

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 :-(

2010-05-08T04:31:00.003+01:00

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

2010-05-08T01:07:00.003+01:00

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

2010-05-07T23:25:00.002+01:00

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

My stupid toenail O/T and gross

2010-05-06T00:45:00.003+01:00

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!!

Weds 12th May-Fibromyalgia Awareness Day

2010-05-05T03:35:00.005+01:00

To any non sufferers ready this blog or anyone who hasn't been diagnosed yet, I found this information from the NHS to be the most clear with a little on each page, the tabs at the top are for symptoms, Causes, Diagnosis, Treatment etc and with coming from an NHS website, you cannot go to your GP and him say he doesn't believe in it as he is employed by the NHS who clearly do- SO if you have a GP whom you don't feel supports you, change which one you see, either within the practice if more than one or to a different surgery all together.

My GP's are in a Health Centre with several GP's working and although the one I see is only there on occasional days he is well worth seeing- I tend to come out of one appointment and instantly make another for a months time to reassess my wellbeing.
Here is the link to the website I am rambling on about- http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Symptoms.aspx

Good luck to all seeking a diagnosis, I still feel "how can I "only" have Fibromyalgia when not all doctors believe in it when I feel so ill"- and my symptoms have got worse and I no longer have flare ups and remissions, it is ALL the time. The pain, feeling like I am bruised all over and knotty muscles just vary in intensity.
The MRI Scan showed I didn't have Multiple Sclerosis and I will NEVER EVER have another MRI San as it was horrific and sounded like a pneumatic drill in my head- I still felt I could hear it the next day!

How I wish there was a cure. I feel I am missing out on the childhood of my beautiful children.
My oldest will soon be learning to ride a motorbike and my youngest is now 7 and it saddens me so much that I am not physically taking part in their lives. They love me though and are kind and considerate children and they know how much I love them which is so important!

Horrid day

2010-05-03T02:09:00.002+01:00

OBVIOUSLY NOTHING NEW!Every day is yuk and until my sleep pattern is sorted out it will continue to be crap. Need to book acupuncture ASAP with Dr Ken

Sunday morning 5am

2010-05-02T04:54:00.002+01:00

Yesterday was one of those sleep all day, days but then I'm up at night so no wonder. I never seem to move from my bed tho unless I need the loo.

Everytime I woke yesterday, I was been in intense pain so it's been a case of throw more morphine down my throat and sleep again. I should only take them morning and night but what else can I do? My GP appt is booked but is at least a week away I'm sure but my Fibro fog won't help me remember when it is and I'll be relying on my man.

It's almost 5am, I have taken my breakfast tablets so will soon be dopey. The birds are tweeting. Our banty boys will be doodling soon too.

May be back later depending on the day I have. I do get peace on a Sunday morning as my daughters go to Sunday School which means Hubby gets the chapel service while they are there (hahaha, sometimes I'm glad to be unwell- jesting but u know what I mean)

My fingers/arms have a bad ache, my old injury to my broken ribs has been playing up in the night so I hope there is no more rain due.

I must get some shut eye

2010-04-30T05:21:00.002+01:00

I cannot believe it is 5.20 am but I was feeling in pain so I've now taken my breakfast dose of tablets and can have a little doze until the kids get up at 7.
I get so fed up with a life ruled by doses of medication, knowing if I medicate myself to go out, I will feel lousy when I get there. It's very frustrating.
I can even hear my Pekins crowing as it's daylight.

Its been a long time....

2010-04-30T02:54:00.005+01:00

I am sorry it has been so long since my last update. Nothing much has changed apart from I seem to sleep more and more and could do with Morphine Patches so that my sleep pattern is not controlled by being woken in need of more pain relief. The tablets I take are slow release and meant to last 12 hours BUT even the GP says they only last 8 hours so I'm very up and down with my pain which screws my life up when I just want to do something.
Morphine patches apparently are the way to go and last 72 hours. Several Fibro friends are on them so hopefully I can get on those as well to make my life happier.

It's so long since the last update that I don't know what was what then. Had I moved into the dining room as a 4th bedroom? Had I got a zimmer frame?
One thing I know I hadn't got is my fandabbydozy powerchair which is amazing. I hate going out with a family member and being "put" where they want me and even though the wheelchair I have is a self propelled, my arms are very weak so I purchased a powerchair which is amazing. (except that one of my children who will get caught out, keeps turning the speed dial and I was wheelspinning in the lounge earlier!)

There are times when my trike is too big for shops and I feel as though I *should* leave it outside but I can hardly walk so now with a poweded wheelchair I can get in normal small shops without taking the shelving out and destroying anything in my path.

I'm still awaiting the O/T to come with an architect about the extension which I know will take forever but they will have to put me a stairlift and shower upstairs as a temp measure OR a bath hoist but they didn't want to clutter the bathroom too much as for other people using it.
I also need ramps outside which *were* going to be around the side to the back door and the access widened for Power chair, Mobi scooter and then built out so my utility room is smaller and the having my own wet room and loo and garden access too! It's all waiting tho as they never have enough money.

But as it is, I have effectively no bathroom access and no access by myself to and from the house as the back is too narrow at present. Something needs to be done or I will have to get on to someone who deals with disabled rights.
I am also waiting a decision on High Rate Care of DLA as they need to speak to my O'T too. Getting fed up being a prisoner now it's warmer.

Oh well, if I didn't have a sense of humour and good family and caring helpful children, except when they twiddle with the go faster button ;-) I'd be well and truly stuffed!

2010-03-18T00:10:00.002Z

I have just asked on the local South Lincs Free Recyclers which is part of Freegle for a disabled/OAP type chair as I really cannot get off our chairs or settee with my walking frame.
I really hope someone has a surplus one so I can sit in the lounge without sitting in my wheelchair.

An eurgh day

2010-03-09T17:29:00.002Z

Anyone with Fibro/CFS knows what eurgh days are! In fact I have more eurgh days than non-eurgh days!

I was meant to go to a "back to work" interview but they were very understanding when my hubby cancelled. The lady called me back, very understanding and we have rearranged for March 23rd and it is just a formality.

I spoke to my parents on the phone as I had missed seeing them on Sunday when It was my darling Daddys birthday as I felt too ill to go. Thankfully he is feeling a little better at the moment and had been to Kimberley. It was lovely to talk to him, I miss him so much especially with us both being ill so I am going for a little holiday over there just to rest and recuperate.

I'm hoping to have a day where I wake up feeling human and just taking off with my duvet, pillows, walking frame and wheelchair and heading to them, then I can rest, the following day I can take my Daddy somewhere and then not head back until I feel well enough to after that.

Fingers crossed I will have a reasonable day soon as they have a bungalow!

So much has happened- horrid so don't read if easily upset

2010-03-08T21:23:00.003Z

I've been feeling REALLY bad lately. I cannot walk unaided without tremendous pain and am using my walking frame in the house and needing help outside.

On Friday our ducks started quacking loudly and making such a fuss but I thought they were greeting my oldest son home from school, but when the noise carried on, I asked him to investigate and there was a dog, a lurcher which I never knew even lived next door had jumped the 6ft fence and was happily killing the chickens!

I had to go out there, 1 son fetched my wellies, one got my crutches as my frame would've been no good out there and just as I was about to go in the hen pen, I got stuck in the mud and stated to slide....I hung onto the wrought iron gate but slipped again and managed to hit the back of my head on the trampoline and my forehead on the metal gate. I still fell on my bottom quite awkwardly so my left buttock cheek is badly bruised too, as is my left knee which also took the same impact as my forehead!

I was just in a hysterical mode! 8 chickens lay dead, all were pets with names who had been rescued and stayed with us as they had some health problems. My daughter also lost her pekin bantams. Feathers were everywhere.

The other hens were in shock, the ducks were going mad!!....I was in some pain but being overruled by arenaline. My son had put the dog in our dog pen but it managed to clear a 2 metre high dog pen.

My legs were shaking, I could hardly stand but I was having to pick up my poor babies who were still warm and see who had gone. My teenage sons were hurriedly rounding up the living chooks and getting them in their houses....it was only 4.30 in the afternoon but they needed to be safe.

I eventually came in the house, in chronic pain and hysterical too. My Hubby came home to take care of me.

It is now Monday, I am still in pain and finding new bruised areas all the time. My legs are jellyfied, my arms still weak from using crutches to try and gallop down the garden.

Here's me wishing somedays that SOMETHING would happen just to change a boring day but not to my babies. My chickens are the only thing that gets me out of the house and into the garden. Luckily we got out there in time to save some and am forever indebted to my 2 teenage sons.

Lazy Sunday.....

2010-02-28T20:19:00.002Z

The little children got up bright and early as they love to go to chapel and Sunday School. All 3 young ones went today, normally it is just the 2 girls.
Our 2 older boys stayed home watching repeats of Scrapheap Challenge or something on TV as the weather was rainy and dull and there wasn't a lot else they could do......roll on summer, outside with the chooks, and kids trampolining and barbecues for the meat eaters. I do miss all that through the wet winters.

I had an early night last night, in fact I probably fell asleep before the little ones and our (almost) 13 year old was still up with Hubby watching something. I only woke briefly 2 or 3 times during the night but must've been laying funny as I woke up with my old whiplash giving me trouble and feeling very migrainey too.
I took my pills including a migraine one and managed to stay awake while the little ones got ready and then I was zonked out until they returned home just after noon.

I actually managed to do something today, I took my oldest sons school trousers up with hemming web, it was exhausting. That is how pathetically weak I am.

They squabbled over the Wii and the computer this afternoon.....they had a few fights and verbal battles so I put my head under my covers and left Hubby to deal with it as I had told him I couldn't cope with the arguments so it was down to him to deal with it if they started rowing.

They are all getting tired now, well the youngest 3 are so they are having a hyper half hour......weird how they do that, they are tired so they go hyper hmmmm strange but true!

Off to take more tablets now and keel over as I feel my day is over and I will only end up chatting on Facebook if I stay awake.

Byee for now!

Bad couple of days

2010-02-27T20:11:00.002Z

Please bear with me, I am feeling particularly revolting at the moment and so drained and yukky. I just haven't felt like being online at all as I would have just been whinging which isn't what you want to read if you have FMS and CFS yourself.
I know it is enough dealing with your own poor health so I'd rather not say anything than say negative things.
My family went out today and left me to chillax. They took 2 of the dogs and went for a waterside walk a few miles away and somewhere quite scenic in an unusual kind of way.

Will be back online when more human. I did try to update this from my phone the other day and it displayed my number so I wasn't very happy and won't be doing that again although I use my phone for updating my twitter and facebook when not well enough for the computer.

Thursday!! Almost the weekend!

2010-02-25T07:48:00.005Z

Phew...I was awake early this morning, fighting a battle with myself as to whether to put the computer on but knowing that if I did, I would never get back to sleep. I played on my mobile for a while, browsing the internet but my eyes were going googly.
I got up for real at 7am, just in time to hear my oldest son scurrying around and in time to start the chain of the daily events...wake Hubby, he wakes kids, feeds them, sorts their uniforms out and gets them bundled into a taxi at 8.25am. They seem to be having a few tantrums this morning!!
I've taken my tablets which include Cocodamol, Cipralex, Diazepam and Morphine so I should soon be not hurting and have more movement in my limbs. Once the kiddywinks have gone to school I shall do a few stretching exercises to try and pull my muscles longer and they always feel so tight.
Not sure what today holds for me so I'll be back later!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Today has been a mixed day, not as much pain as usual which is great, I haven't slept as much, even better you may think but I have been very down in the dumps thinking about my dearest old friend, Darran who was murdered just after Christmas 2009 and I really haven't got over it yet (suppose it's only a couple of months ago) and I wonder if I ever will. Even though I only have happy memories of him, I feel guilt at losing touch through getting married, starting a family and giving up work....my whole priorities shifted, as did Darrans as he got married too, a while before me.
I thought the world of him, only as a friend though! He just was such a laugh and so talkative....bit like I was at the time.

Oh I feel like shite today :-( Life is CRAP!

Wednesday....I think!

2010-02-24T08:36:00.010Z

I had a good nights sleep considering but still feel unrefreshed. I awoke at 5.10am as my other half was scurrying around putting school uniforms in the tumble dryer, he's so good! I took my morning tablets. Anyway he was perishing cold so came and snuggled in with me as I am always toasty warm (I'm only on a single bed in the dining room), our Labrador who we call "his other woman, or his blonde bit" then came and got on our feet so there I was....STUCK!

I hoofed Hubby out at 6.45am to wake the kids and did a few stretching exercise to un-knot myself and I chatted to my sons, didn't see much of my daughters as they just did not want to get up today so everything was last minute with them!

I feel like my arms are weighted down with lead and my collarbones are hurting too. Hubby has to go out today so I'm home alone. The best thing I can do is stay in bed because if I fall, I cannot get myself up again and just recently I have been more clumsy than ever, falling over my own feet. I have a horrid bruised toe nail and have no idea when I did it. It's very tender and I wonder whether to pop to hospital sometime to see if they will drill it to relieve the pressure.

Dearest Hubby made up all my tablets for the week last night. I got a fabulous little tablet holder a while ago from Poundland. It makes life so much easier as I am so forgetful and can never remember which ones I have taken.

Not bad for £1

Hopefully I'll be back later, I just feel so drained and worn out.
I can hear my ducks quacking and one of my 2 Bantam cockerels crowing as Hubby is just doing the food rounds. I can't wait for good weather to get out there. It's very difficult though with no wheelchair access. My animals and kids are my life....my reason I tolerate this crappy illness.
I admit I have thought of ending it all in the past but I couldn't for the sake of my children and animals.
Hopefully I will get wheelchair access in and out of the house through the back. Also a shower room and toilet that are accessible from my bedroom/dining room.
An Occupational Therapist from Adult Care (think that is adult social services) is bringing an architect on her next visit as we can get a grant to have the work done but it all depends on the grant money available and whether the budget for the next financial year is already allocated. I may have to wait years. (but I flippin' hope not, I dream of being nice and clean in a shower, instead of minging for too long as the stairs just about kill me off)

Must finish that DLA form this afternoon too!- [oops we forgot]

10.40am Feeling in desperate need of a nice long uninterrupted sleep!

14.14 Had a lovely restful sleep until my other half got back. I was so out of it, I had our terrier and the Lab both on my bed and the Lab was licking my bare feet, lol. I didn't know either of them were there! I think if I had slept any longer I would have woken up migrainey as it was lurking but now I am eating I think I may have nipped it in the bud.

18.30 The children came home from school earlier as little horrors today, all squabbling and whining and trying their best out out-whinge one another. Both Hubby and myself feel like our heads will explode. This is the one day that there are no after school clubs and Ruth sorts out Dolly (the pony) so after school we normally just enjoy each other and chill out! No chance of that today. Even at the meal table there was a pasta fight! AAAARRRGGGHHH
Cannot guarantee coming back online tonight. My brain is in meltdown and I think my other half's is too. Definitely an early night is store for all!
My 12 year old has been lovely.....but he's the only one!

Urgh!! What a day!

2010-02-23T14:04:00.009Z

14.09 I have only just arisen from my pit!
I slept last night but woke several times and was unable to get back to sleep, 2.40am, 4.10am, 6pm and then woke again at 7.30 am with a cracking migraine and needed an Almotriptan as well as everything else to knock off the migraine. It seemed to take ages to work and I thought I would need a second tablet but luckily I didn't and the migraine eventually lifted.
My arms are aching a lot, the muscles feel so bruised. I've had some breakfast/dinner and am now verbally helping my Husband to fill a new DLA claim for me. I currently get High Rate Mobility and Low Rate Care which is crazy as I need my other half as my carer. He has to cook for me, clean me, dress me, push my wheelchair, help me move about in the house as I cannot manage stairs and spend half my life falling over my own feet (I'm an expert at that) but then I cannot get up again and I'm like a tortoise flipped on it's back :=) DLA forms are hell! They may decide in their wisdom that I need no help at all and take it away as they sometimes do to people who try to get an increase! The low rate care was never right anyway as all the things listed that they said I could do, I couldn't but I was so exhausted with forms and telephone calls that I was just grateful to receive anything at all.
Oh and to top it all, I have received a letter "inviting me" to a Focus on work interview which I "am welcomed to attend" and if I do not attend, my benefits may be affected....cheers, great invitation!
Thank heavens for my blue parking badge and my lovely other half as they make it easier to get out and about.

Hopefully back later!

New day, new week, new blog

2010-02-22T06:52:00.009Z

I awoke around 3.45am in pain so took my morning medicines, used my commode and got back into bed.
I couldn't sleep, I am so uncomfortable and feel bruised. Typing this isn't easy, my hands feel stiff.

It is now almost 7am and I still haven't managed to sleep as the painkillers haven't seemed to kick in.
The children will be up in the next few minutes and getting ready for their first day back at school.

Back later to update.

9.20am Feeling ravenous, I suppose I've been awake a fair few hours. My get up and go has long since got up and gone though so I'm about to have some breakfast, lovingly made by my hubby. I need to take my next dose of tablets and I'll probably throw in some ibuprofen too as my head is hurting.
I have my laptop screen as dim as it will possibly go but it isn't dim enough. I even wear glasses with a special tint for migraine sufferers but still it affects me (when I go out, I wear a baseball cap too so as to stop as much bright light as possible)

After my breakfast, I am hoping to snuggle up with my Labrador, Mollie (my foot warmer) and have a sleep. I really need deep sleep which doesn't happen. I never feel refreshed!

I am not planning to go anywhere today. All I need is R&R (Rest and Recuperation) I don't go out often....if fact last week after my hospital appointment with the chronic fatigue lady, I stopped off at the lovely garden centre gift shop to buy some nice Yankee candles with money given to me by my parents for my birthday last November! Shows how often I go anywhere other than the doctors!

19.20 I had quite a long sleep today after my breakfast and didn't wake until 14.45. Luckily the children were at an after school club and get a taxi home.
I didn't really feel refreshed when I woke and had neck and head pain as well as a poorly knee that I managed to twist a couple of days ago (whilst in bed!)

I actually managed to cut my younger daughters hair today. She is a proper tomboy as I was when younger and is a real mini-me so cutting her hair is easy as she wants it like mine which is very short for easy maintenance.
I then tried to sort our terriers claws out using the Dremel instead of claw cutters. Her claws are black so it is difficult usually as you cannot see the quick and I'd hate to make her claw bleed as once they start they take ages to stop. I gave up after a few minutes of her squirming as I want to introduce her to it gradually- she is brilliant with her hair clippers so in time, she should be used to the Dremel too.

That is me done for the day, well I did more than most days. I'm exhausted. In need of some tea followed by a mug of Ovaltine, more flipping tablets and then I will be ready to sleep again, so night all x