~update~

i keep wondering whether to remove this blog

i rarely post here and when i do i usually get cross!

but then a week or two ago i had a message from someone who came here via another blog

so people do come here and read it

so i suppose if someone reads it and finds it helpful in some way to know they are not alone and we are out here then i guess it is worth keeping and posting occasionally.

~*~*~*~

so how am i today?

well the m.e and fibro continue to be a constant presence in my life with its up's and down's....but more downs than ups!

the hassle i was having with atos last year passed painlessly-i saw my gp and the day before the expected farce of a medical we had a phone call to say i did not need to go-so whatever my gp put it tipped the balance.

back in february i had a cold, a bad cold that my swampy thinks was flu.

anyway i was in bed...physically in bed...for about 10 days i was so poorly.

i try to keep up with my home yoga practice although when i was poorly i stopped and its always difficult to get back into the swing of it.

at the moment i am trying to build myself up starting with just five minutes of a few simple moves.

the yoga teacher i found specialises in yoga for people with m.e and other mobility issues and so i fully intend on going back to her classes very soon

i also try to have a five-ten minute walk every day with flynt and swampy over the forest.

i went to my pain management clinic  last year and they stressed the importance of keeping mobile.

so i do, its not pain free but i do it.

i am seeing my gp in two weeks following on from my diabetes 'MOT' i had yesterday for a medication review.

but i need to ask him about my hands-i have had a lot of pain in my joints and now on a few fingers it feels as if the bone is growing and when sitting my hips and knees start to ache and throb after only a few moments. i showed swampy my hands and he said it looks like some form of arthritis...

*sigh*

still on i plod!

~atos lies~

oh yes they do!

well i had the dreaded brown envelope, swampy filled out the esa50 form with 12 pages of extra information plus some print outs from the nhs site with information on m.e and fibro and we post it off.

we get a call from my gp~please come in for twenty minute appointment to assist gp in filling out form relating to esa...make appointment.

phone call from atos 'to make an appointment'...in reality bullying me into an appointment we told them i would be unavailable for, apparently there was absolutely no other slot available (i do not believe that for a moment).

lose the will to live and make the appointment anyway.

we do some research, find out the form my gp has is an esa113...now this is important folks if you are going down this route.

the esa113 is a form that your doctor fills in and has the potential to get you through the whole depressing atos experience without one of their so called 'medicals'

A fully completed IB113/ESA113 report may thus avoid the need for a person to undergo a benefit related examination and help Jobcentre Plus to give a prompt decision on entitlement.

~scroll down to q2 of the medical questions section~

phone back to say we want an appointment after they have received the information they requested from my gp. 

swampy has long agonising conversation with a chap that sounds like the squeaky voiced burger guy in the simpsons.he at first denies them sending my gp a letter (liars!), then a bit later tells swampy i do not need to be present when my gp fills out the form, he keeps trying to give us dates we specifically stated we were away...turns out they put the information down wrong *sigh* then he tells swampy we were 'deliberately making ourselves unavailable' well swampy hits the roof...anyway cutting a long story short and after another person, customer relations no less, telling us they 'cannot wait forever for a doctors report' we get them to agree to providing another date.

now here is the weird thing for a big, bad IT company, which atos really is...they cannot book appointments further ahead than three weeks!!!!!!

what it boils down to is they have tried to bully me into an appointment prior to getting the info from my gp so they can just score me 0 and place me as ft for work...and they will do this to you too.

i have been told by someone high up in the benefits system that i am unemployable and should be placed into the esa support group on the basis of my esa50 and my gp's information.

they are just one big fat joke and the government should be ashamed that they allowed them to take over and potentially ruin the lives of thousands of sick people.

oh and here is something else...

atos have quotas to fill each and every day to get their bonus...

they have to see so many people a day

they have to pass so many people a day as 'fit for work'

~*~*~*~

so my lovlies, even though it may sap your will to live and deplete your spoons please dont just lie down and take what atos throws at you~

We will try to arrange a convenient date and time with you

they will in fact try to bully you into accepting the appointment they want you to have

Our commitment to you

■We will treat you as an individual, listen to you and will strive to ensure you have a positive experience with us

■We will provide an assessment tailored to independently report how you are restricted by your medical condition

this is rubbish, they have a systen of drop down list that allow no elaboration of a persons illness

and that for today is that!

the rest of my spoons are being saved for my 12 month post op untrasound check up

~ha!~

for all of you awaiting the dreaded brown envelope with the words Atos printed on it...this will make you smile...

Atos Miracles

~ouch ouch ouch~

my fibro makes me hyper sensitive to pain and pressure~even the weight of a summer quilt resting on my feet feels uncomfortable and feels like it weighs a ton and every day knocks and bumps are so painful, even scratching leaves a lingering pain.

well today flynt banged into my ankle so hard i couldn't move and i was close to tears~i am trying to think of something to liken the pain to but i cant.

take my word for it it hurt

 bad

so bad i crumpled to the floor and had to drag myself up onto the sofa not even able to speak.

swampy was out messing around in Pretty Pagan so couldn't help me.

~*~*~*~

would you believe in 2004 i was living in a sea side city...

...working full time for a homeless charity, managing four homes, helping 19 ex prisoners, addicts and a house load of lads from Iraq get their lives on track

...i had a busy social life

...i would cycle along the prom, go shopping and cycle back

...take long walks along the beach

...go camping with my friends and stay up into the early hours chatting

...i spent all day for14 days snowboarding down mountains with only a break for lunch in California

now i am lucky to get a bowl of washing up done and wiped without having to sit on a step stool and feel totally exhausted and in pain

~*~*~*~

the good news is last week i managed an mri scan and while it was happening i was having really bad pains from my ovarian cysts so i am hoping they will show up nice on the scan

the not so good news is my hot flushes went but they are back again

~*~*~*~

there are days when i really feel like i am falling apart!

~wahhh~

i can cope...well not cope...i can just about live with all the aches and pains and exhaustion that gets fired my way every day...but when i get face/head pain it makes me miserable.

i woke today with pain down one side of my face, across to my sinus and in my ear and eye...its like a migraine but not a migraine.

even my jaw hurts

i have done my usual medication thing~two diclofenac sodium (two thirds of my daily allowance), one paracetamol and a mug of strong, sweet milky coffee...but i think another round of all the above is needed...now...as the pain is spreading round my neck and upwards

*sigh*

i had been in a lot of pain the last two days with my ailment getting back at me for going away last weekend and having some fun~but it was worth it!

~sigh~

this is a really good post 'work makes you free'~saying things that have been in my head recently.

its true the governement and the media are making people who are really sick/disabled feel like crap...

i have talked about this before so i wont go into it all again.

i just wish that before making upsetting comments that some people out there took time to think and consider who they could be hurting with their comments and refrain from lumping all people on benefits into one basket.

we are not all the same and we are not all scroungers

~why i dont...~

...post much

its simple really, typing hurts my hands, wrists, elbows, shoulders and neck and makes me both physically and mentally tired.

i really wanted to post this today and i am ignoring the pain.

yesterday i had the brown envelope that many in my position are dreading, the one saying they are being moved onto esa and so have the whole process of paperwork and medicals to attend.

usually you think oh okay that's fine~but given all the horror stories that people have experienced with atos, the people who do the medicals, all i, and many others feel, are a deep depression.

the aim is to get people to work, no matter how poorly they are and there is so much evidence of the way atos lie and ignore the reports of doctors and consultants.

its depressing~how can someone you have never met and knows nothing of your medical history be in a position to judge you~how can they ignore the reports of those who know you and your body so well.

its a total mystery to me

i wont go over how i am every day and all my symptoms, its here in another post...suffice it to say i have not improved and some things are considerably worse

i keep telling myself that whatever they do they cannot force me to work...and who would employ someone who would not be able to complete a single days work or guarantee they wont be off more than they are there?... and we have lived with almost no money before, we can go it again.

actually can i feel a bit sorry for myself? my collar bones are so painful...imagine someone constantly driving a small but very sharp knife into each of them...