warm fires & wool blankets

~atos lies~

2011-09-20T10:33:00.000+01:00

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!~

2011-06-18T13:12:00.000+01:00

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~

2011-05-29T21:09:00.000+01:00

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~

2011-05-28T11:19:00.000+01:00

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~

2011-05-10T17:12:00.000+01:00

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...~

2011-05-07T18:37:00.000+01:00

...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...

~allow me to moan~

2011-03-10T15:39:00.000Z

i not long commented on my 'other' blog how at 3pm my day is drawing to an end.

i am tired, really tired.

i feel like i am wandering through treacle.

i really want to do some crafting but know i dont have the strength to get it all out, work and then put it all away again.

the pains in my collar bones and shoulder blades are starting to needle and hurt, my wrists hurt from my other blog post and yet my mind is full of everything it could possibly be full of.

i got my book out a few hours ago but gave up after a few pages as i found it impossible to follow what i was reading

i am thinking of getting my crochet out but my aches and pains are telling me no

this is deadly territory as i get to the point of frustration and its easier to go to bed and listen to the radio than it is to simply 'be'

can i moan and say how much i hate this?

i know there are lots of folk out there worse than me but just once let me have a moan

~other bloggers~

2011-02-19T18:32:00.002Z

a good blog post is

here

~i do not heart this~

2011-02-16T16:39:00.000Z

*inspired by this post*

while i was taking random photos yesterday i had to refill my medicine box...it takes a little while each week...

there are some missing as i was waiting for a new prescription to be filled~but this is seven days worth of my everyday medications.

it doesn't include my prescription painkillers and migraine meds or the tranexamic acid i keep in store...just in case my moontime comes back with a vengeance.

as the post title tells you

i do not *heart* this

~ouch ouch~

2011-02-11T16:59:00.000Z

look one less ouch today!

my shoulders are slightly less painful and the most painful moved from left to right.

i didn't wake up until about 10.30 this morning and have done very little...drink lemon tea and eat toast with homemade whisky marmalade

...however saying that-mr sharp stabby big needle is coming back...i can feel him...

i went a bit crazy and decided to cut up a carrot or two to roast with some tomato and red onion...it took all my strength to cut up the carrot and not shake enough to cut off any fingers in the process...spoons used...a few.

~ouch ouch ouch~

2011-02-11T16:24:00.000Z

i will be keeping this short~i have been meaning to blog again since my last post but seem to be having some kind of fibromyalgia flare up, but in a way i never have before.

for the past two days i have had severe pain in my shoulder blades and collar bones and spreading down my arm, worse on my left hand side-pain that feels like someone is pushing large...very large needles right through me.

every movement is painful, even holding a book and i am gritting my teeth as i type...also wishing i had asked swampy to make me a hot water bottle before he jumped in the bath-doh

so i have not vanished from blogging just a tad incapaciated...oh and to top it all it seems like my moon time has returned after seven months *sigh*

'see' you all again soon

~one month before heartbreak~

2011-01-14T17:03:00.000Z

this is hard to write-hard because its about the real me, not the alternate me that comes across in my blog.

sometimes this me comes across in my 'warm blankets' blog-but slightly-not in a nitty gritty way.

well, because of the campaign started by broken of britain in response to the cuts brought about by our government i thought i would write this and write it as if none of you know about my problems.

~*~*~*~

i was diagnosed with M.E/CFS early in 2005 after a year of assorted illnesses-infections etc.

i was lucky enough, after being fobbed off many times with 'oh you have flu', to see a different doctor, who after listening to my horrendously long list of ailments/problems, suggested i had M.E.

he had worked with the consultant who fought to have M.E recognised as a serious, long term illness and so was very supportive.

he sent me for the blood tests that would rule out any other illness, sent me to an M.E specialist at a local hospital whose confirmation allowed me to attend a specialist self help group for six months.

from the beginning i was not able to work-imagine having flu or a very bad cold all of the time...then add a few more problems...problems that never go away, just vary from day to day, hour to hour...

~poor short term memory.

~poor concentration...the wonderful brain fog!

~headaches which range from mild to severe migraine.

~constant tiredness-not the 'its been a long day i am a bit tired' type but a constant dragging tiredness that does not go away even with a nights sleep.

~every morning waking as if you have had no sleep-even when you have.

~every action making the tiredness worse...even having conversations with people and being in a group makes me so tired.

~periods of insomnia broken with periods of almost constant sleep.

~difficulty finding the right words and problems organising thoughts... often i end up having to describe the item i am trying to find words for or will lose my words in the middle of sentences.

~poor temperature control, sweating, dizziness and difficulties with balance, my spatial awareness is affected so i had to give up driving-an activity i loved.

~sensitivity to bright lights, noise and odours...just lately the smell of cooked food has been making me very nauseous and so been living on raw vegetables and bread rolls. of course i cannot expect swampy to do the same to still keep feeling nauseous.

~painful glands in my armpits and neck.

~weakness

~anxiety

...there is more...of course

of course any other illness i have makes it worse.

~*~*~*~

for a year or so i thought i had been getting worse, much worse.

i started to have pains in my arms, legs, hands, feet, all of my joints~ that i never had before, pains that meant walking had become more exhausting and painful and at nights i couldn't sleep for the pain and would lay moving a hot water bottle from limb to limb.

when the pain finally made me cry i went to see my doctor and described it as feeling as if the pain came from deep inside my bones and joints and spread outwards and the soles of my feet as if they had been repeatedly hit with a stick.

off i went for blood test after an examination and was duly diagnosed with fibromyalgia-some doctors lump M.E and fibro as one problem, mine regards it as two problems with some overlap.

as well as the pains i have mentioned i am much more sensitive to pain-even the smallest knock or bump causes me pain-even, believe it or not, scratching myself-how silly does that sound?!

every day is a struggle, some days more than others.

i feel in a catch 22 situation sometimes for i need to keep my blood sugar levels down and cholesterol low and this is hard to achieve without exercise.

as you know my exercise is a walk with swmapy and flynt on the days i can manage it.but even then everything hurts.

the other day swampy took me to hobbycraft-every hole and bump we drove over jarred me so much and getting out of pretty pagan as my first foot touched the ground the sharp, shooting pain that exploded out of my foot hurt so much i couldn't move...

even lifting a kettle hurts...

some days even holding a book hurts...

some days even talking takes too much effort...

the days i cannot even go for a short walk are the days i do not have the energy to get dressed properly and so spend the days in my 'comfy' trousers-really pyjama trousers i use for everyday wear.

my feet hurt so badly i wear my birkenstocks 99% of the time and have done throughout the winter with warm socks.

but you know i do things, of course i do, as do the millions of other unwell folk out there~i read, crochet when i can hold a hook and yarn, blog, even go 'camping' in pretty pagan occasionally~oh i dream of the days where it seemed we were off camping every weekend during the good weather!

of course i do things, if i didn't i would go insane or at least revisit the depressions of the past~are we expected to sit like immovable lumps day after day?

~*~*~*~

so where am i going with this?

this is just me~through various forums and from friends i am aware of the problems than many, many people live with daily~not only through their illness but in living in general and its for these people i am writing this today.

my problems just give you a taster, so to speak, of what people live with.

~*~*~*~

many people face problems with money and hate crimes because of their illness/disability.

both M.E and fibro are essentially 'invisible' illnesses as are many other conditions and many of those have found, people can be cruel in what they say and yes, even think we are liars.

much blame can be directed towards the media, who in appalling reporting, classes those people who are ill/disabled with the general unemployed and describe all of those unemployed as 'benefit scrounging scum'-how charming- not the be confused with very good blog of the same name.

so here we have a society where all unemployed are lumped under one mean banner~but yes there are scroungers out there, i remember too well a tv interview with a young, unemployed lad, who left school with no qualifications, who constantly refused work because he considered he was too good for the jobs on offer and wanted more money to work.

our society, with the help of the media and our government has created a culture where people who are disabled and have genuine health problems are ashamed and scared of being labeled as scroungers and so do not talk about their problems.

now those who suffer disabilities and long term chronic illness have to face the fact that the government, in order to save money, are cutting essential benefits left right and center and making the medicals more difficult for people, ignoring the reports of individuals own gp and specialists, changing the boundaries to make these people 'fit for work'.

how long do they think people with a long term chronic condition will be able to hold down a job if they have been passed 'fit for work' by the unqualified people they use to conduct medicals?

~*~*~*~

it makes the heart sink that this is happening

when the likes of bank managers are awarded multi-million pound bonus, that companies avoid paying tax and are not chased for it by the government~vodaphone for example was 'let off' paying £6 billion in tax while the government are cutting £7 billion in benefits to the sick,even george osbourne is indulging in tax avoidance~ 38 Degrees

our government does not think in human terms when coming up with their plans.

in fact i think they are on another planet all together when we hear this now tired saying...

'we are all in this together'

no we are not all in this together!

will those mp's~i am looking at you now messers cameron and clegg~suffer the way the poorest in society will in this land of high prices, increased fares on public transport, pay freezes and rising unemployment.

can you imagine them each week, feverishly sitting down to work out how to budget their money for the week/month?

do you think they sit there and decide which bill not to pay in favour of paying their rent/mortgage? or not to pay for essential prescriptions in favour of food or cutting down on food in order to pay their prescription charges~no they do not.

we are all in this together~what utter bunkum

how do they think these folk, any folk who are unemployed or on low wages, will be able to maintain their homes and pay the bills-do they forget that whatever your condition, working or not, everyone (unless you are homeless) has to pay bills such as water, gas, electric, telephone (if you have one), tv licence, buy food, petrol and in many cases pay mortgage, rent and council tax.

~*~*~*~

i have a hope deep inside of me that the winter solstice of 2012 will be a turning of a page, that this is the time when society will turn away from greed and unkindness and start to heal both itself and the world...its a better idea than Armageddon isn't it?

...i have to say because of all of the problems i have this has taken me four days to complete!

~bifocals~

2010-12-02T15:13:00.001Z

...ohh and i am really not getting on with my new bifocals but more on that later!

~arggh~

2010-12-02T14:27:00.003Z

i went off for my second MRI scan this week and i was feeling mighty brave i can tell you.

as a serious claustrophobic i dreaded my first one, but managed to get through it with some closed eyes and the fact i had my head poking out of the end of the machine.
so although i was freaking, the fact my head was out and i could turn my head and examine the ceiling i managed...just.

this time it was a different hospital and for whatever reason they did things differently~i was told i was going in feet first and the arm with the doo-hicky in to inject contrast dye into me was placed above my head instead of by my side.

well they had me all needled up and ready for the dye to go in once i was in place, they put me in to test my position...as the machine grew closer and closer to my head i had a twinge of panic~it was getting too close for this claustrophobic's liking.
it started to cover my chin and did not stop!
then i was off the panic welling up inside, a tightness in my chest,'errrr no, no, no' with considerable head shaking.
they pulled me out (and i could almost hear their sighs) and told me that i would not go in further than my head, suggested i keep my eyes closed (i don't think so i want to know where i am going!) and that someone would keep a reassuring hand on my shoulder.
they clamped ear defenders with piped in music, the reassuring hand was on my shoulder and off i went again

again more head shaking this time more vigorous than before and more 'no, no,no's this time with tears starting in my eyes.
i am sure i heard them sigh this time.
they unstrapped me, took out the needle and sent me on my way, telling me they would contact my consultant. he, i am sure, will wonder what the problem was, given the success of my first one.

i couldn't do it. if they had used the same procedure as the general hospital i would have been fine~i would have closed my eyes while they put me through, opening them when the person at the other end tapped me.

but this~strapped to a board in a tiny tube, with my whole head covered~nope sorry.
they give you an emergency button but that would be no good.

a claustrophobic in a panic needs someone there immediately and needs to be able to move~not be strapped to a board in a tube and having to wait for rescue.
(my heart is thudding in a panicky fashion just writing this.

i have decided to be assertive and if he insists on another request to be totally asleep for the whole time~but now i have horrible images of waking up too early and find myself waking up in the tube...

~feeling elderly!~

2010-11-16T09:19:00.002Z

well the opticians is over for another year and as expected i need new glasses~what i wasn't expecting was bifocals!

i explained that suddenly i was needing my glasses for all close work rather than just reading and computer work but crochet, using my mobile, even reading labels when shopping or reading the back of a book.
i forget to take them out with me so several times now when out i have had to get swampy to read the backs of books and labels for me.
at home i keep them on a chain around my neck and in the evening when doing my crochet i often catch up on history programmes or films~this means sitting with my glasses perched halfway down my nose.

in two weeks time i can keep my glasses on and finally see what i want to see rather than keep taking them on and off or forgetting them and having poor swampy have to read things out to me!

i know its a small thing but its making me happy!

...oh and the lovely optician, an Irish lady who i have two years on the trot now, said i had 'startling blue eyes'~that made me feel rather good!

~sigh~

2010-11-15T10:31:00.003Z

...this is actually a picture of my old glasses~my current ones are a rather funky red and black combo...

off to the opticians today

every year for three years i have had to have stronger prescriptions or a prism in one lens so expecting much of the same this year.

in preparation i have been online checking out the frames available at the optician i go to~with the special offers there are many that will be totally free (love that idea!) and more expensive ones for only £10 or £20, that's not bad at all.

~*~*~*~

yesterday we went to the Armistace Day gathering-we went to the small one on the
11th which is the one i like, but as swampy wanted to go to the bigger one i went with him as its only a five minute walk.
ohh but standing there my ankles were hurting and after a while, for the first time, i had pins and needles up my legs~part of the whole fibro thing i imagine.

i had had some quiet days this past week~i think i have only been out for a walk with swmapy and flynt a few times~if that.
sitting here now the soles of my feet are throbbing and i am not really looking forwards to going out.

my hot flushes are starting to annoy me and i am still waiting to hear back about the blood tests i had last week to check my hormone levels.

last night was particularly awful. it seemed that no sooner had i managed to fall asleep and hot flush crept up on me waking me up, whereupon i would throw back the covers and reach out for the gel ice pack i have beside the bed at night. i get so hot it doesn't really stay frozen for long!

i am also feeling slightly miffed that my life and the things i want to do are ruled by compromise...

~thank you~

2010-11-04T17:31:00.002Z

firstly today i would like to thank my small following for sticking with me!

when i started this blog i didn't think i would have anyone reading my posts, let alone making regular comments~not in the way they do on my main blog.

but i persevered with the odd post but recently i have felt the need to post here more and maybe be able to reach out to others in the same boat and i just don't think my other blog is the right place to keep on about my problems~despite my strong belief in being an honest blogger.

~~~

so how was today?

my feet have been throbbing and burning, everything hurts and the old 'power surges' as my friend dandelion moon calls them, have had me to the point of mopping my brow.

i can see myself starting to stash a little hankie in my bum bag for when i am out and about.

we popped into lymington ( one of the 'next door' villages~i once spent some years living here in a flat above an art gallery~good years!) to collect a parcel~an unusual little boscastle pottery bowl to add to my small (but hopefully growing collection) and decided to have a little wander.

i like to get out and about~if i didn't i would go stark raving mad.
so being stubborn i go out knowing i will hurt more and more and exhaust myself~better that than go crazy!

i also popped into my mums, five minutes from my little house, the house i grew up in.
i came away with my sisters nigela lawson 'domestic goddess' book as i have an urge to start baking lots of lovely goodies i shouldn't really eat (however i would like to say my blood sugar today was down to 6.9 which is fantastic~a month ago it hit 19~absolutely shocking!)

anyway my fist serving of baked goodness will be cream cheese brownies~apparently elvis loved them and in my book if elvis liked them they must be good!
i figure if i do very little tomorrow then i will have the 'spoons' to do some baking.

well i can smell my roast vegetables in the oven so guess they need checking~and i need to get my veggie sausages under the grill.

i really didn't fancy cooking and don't like to keep asking swampy to cook as he has a horrifically bad back and is on a very bizarre diet given him by his dietitian for severe ibs~a question i am going to ask her at his next appointment is where does she think he will be getting his vitamins and minerals from on a 2oz a day fruit and veg allowance?!!!

there goes the buzzer...have a good night my lovlies!

~e-mail from consultant~

2010-11-03T08:18:00.005Z

getting fed up with these hot flushes i sent off an e-mail to my consultant at the general hospital describing them and the lack of a moontime since july.

i guess since july is only three months but i have been regular as clockwork forever~bang on 28 days, so for me its unusual.

anyway...i had a reply really quickly and he requested my gp do a blood test to check my FSH level (i had no idea what this was so googled~like you do!)
he also suggested they could be the result of a long term infection.

luckily i am due to go today for the 'paranoid doctor' blood tests so yesterday i went to my surgery armed with a copy of my consultants e-mail and the form i was to take to the hospital this afternoon and requested the form to be updated on the orders of my consultant.

usually the receptionists at the surgery are right dragons (no disrespect to dragons intended!)they wont even let you stand in front of them to book and appointment but you can literally stand there on your mobile and call them to make an appointment!
i think the fact i had the e-mail from my consultant helped to soothe the process.

this morning i shall plod down there to collect the form, its only five minutes for a normal person but for me its a long slow plod while assorted limbs whinge and moan at me for actually moving! then this afternoon swampy will drive me to the little hospital for my blood test.

all about you.com

whatever they are, they are driving my crazy~two to three times an hour throughout the day and night they happen and so i never know what to wear. yesterday i put on a long sleeve cotton top. by the time i had sat on my little step stool to put my sandals on i was drenched in sweat and went and changed to a sleeveless top.

can you imagine me this winter? dressed for summer~wearing my birkenstocks all the time (with funky socks however) and short sleeve tops and fanning myself in a frenzy!
the joy

my consultant has also arranged for my next mri scan to be done there rather than going to the big general for it as the waiting list is shorter. i was not due this until january so i can only assume he want a little look to see whats going on with my uterus post-op.

***

of course on top of this there is my m.e/fibro thing going on.
typing this my hands are hurting so much...'so dont type' i hear you cry!
oh my if i stopped everything that caused pain i would do nothing~even just sitting down hurts~sorry whinge moan!

time to go!

~crone?~

2010-11-01T07:42:00.003Z

i have not had a moontime since july

i had my operation in august and the literature that accompanied it said i should expect them as usual but hopefully less heavy.

well no i haven't

and to top it all since shortly after my operation i have been having hot flushes~oh yes i have.

i have chatted to a friend about it who has them, and swampy spoke with his sister and what i am experiencing is exactly what they are having/had when they went through the menopause.

i get a weird aura before it starts, then it like this incredible heat washes over me, my face goes bright red and i feel all sweaty.

i have e-mailed my consultant at the hospital and hope to hear back from him this week.

but i am sure i have stepped on the path that eventually leads to the crone and i embrace that

no it does not agree with me!

2010-10-28T16:38:00.003+01:00

honest blogger alert!

after taking one single, tiny dose of amitriptyline three nights ago i was very, very sick, so sick it gave me a nose bleed at the same time and poor swampy had to clean the bathroom~the whole bathroom.

needless to say i was upset and mortified

today i saw a doctor, not my usual one as he was on leave and i have been put on dicolfenac sodium and a dose of ompreznol in the mornings as the diclofenac can give problems with the stomach and cannot be taken long term.

***

so how am i today?

over ambitious are the words i can think of.

as said by ferris bueller

'Life moves pretty fast. If you don't stop and look around once in a while, you could miss it.'

well i get fed up missing things!

we went to ikea to buy a rug and a couple of cushions, which was fine. i slowly plodded around ignoring the pain.

then we had to get shopping which nearly had me in tears.
every step gave me pain everywhere and it just made me miserable.

***

the best thing was i had the most beautiful coat delivered today and i treated myself to two cute cushions and a 'prudence' in ikea~more of that on my main blog.

now i am gathering the energy to go and put my pyjamas on~but i am sure my ankles will shatter if i put weight on them.

~urgh~

2010-10-11T13:53:00.003+01:00

i don't think amitriptyline agrees with me.

i was fine with 10mg at bedtime, upped it to 20mg and that was fine~30mg and i started to be sick so i dropped it back to 20mg.

but last night i was sick again a few hours after taking my 20mg~the night before i held it at bay with a small dose of 'andrews' salts.
today i have been feeling queasy and my throat hurts from being sick~sorry folks honest blogger here!

tonight i have decided not to take it at all and see what happens.

so how am i feeling today?
well like i am living in a bubble of treacle with the added joy of assorted sharp/dull pains~in my hands which is making it painful to type, i feel so tired~not 'its time to go to bed' tired but a deep, bone aching weariness that is making everything difficult.

the good news is that its a glorious day here in this ancient forest~clear blue sky and sun is hot~we have an indian summer in october!

~yes i have~

2010-09-29T11:24:00.003+01:00

well i saw my doctor yesterday as the results for my blood tests had come in early.

his diagnosis of fibromyalgia was, as we both thought, correct.

so now i know~knowing is so much better than being in the odd limbo i found myself in waiting for the results to come back. its harder to explain things, to explain why i cannot stand or why i feel close to tears with the pain when all i can say is 'i think i have fibro'

now at least i can say 'i have fibro and m.e, that is why i am struggling'

my blood tests also showed my blood sugars are too high as is my cholesterol and so i was sent away with a blood monitor kit to test my bloods at home.

~so much to think about~

i try to go for a walk with swampy and flynt every day to help with my blood sugar levels~i went out today as the forest looks wonderful in autumn~but oh my did i struggle.
each step is painful, the level of the pain changing day to day, hour to hour but i plod on.
if i didnt i would go stir-crazy cooped up in home.

like m.e fibro is another 'invisible' illness but recognised as a chronic condition.
so of course people will look at me and think there is nothing wrong.

i wish there was nothing wrong

~the spoon theory~

2010-08-31T14:23:00.004+01:00

this is from but you dont look sick and although it describes living with lupus it is the most perfect way to explain M.E and/or Fibromyalga to those people who may well say to you, as they have said to me and i know they still think it 'but you look fine'

to which i answer in my mind 'live in my shoes for a week and you may think differently'

~*~*~*~

''The Spoon Theory
by Christine Miserandino

~beyond a year & fibro~

2010-08-31T13:30:00.006+01:00

so over a year has past since i posted here~mostly because i become fed up repeating myself and moaning and i am sure you~who ever you are!~ would become fed up with my moaning.

however i am awarding myself the honest blogger award that originally came my way via the lovely sue~the purple pixie

WE ARE Honest Blogger!
the Sisterhood of
SHIfT HAPPENS!

As honest bloggers we:

* Speak our truth from the heart and tell it like it is.

* Share openly and honestly our true feelings without fear of judgement, Blame or shame.

* We write to share our achievements so others can also share our joy.

* We write about our bad times too, knowing that the love and support of others is around us and perhaps heal another’s pain in the process..

*We are human beings will real feelings and emotions and REFUSE to hide behind a mask.

* We dare to be different

* We are Free Spirits

* We realise that by spilling out, we lighten our load.

* We acknowledge our strengths and weaknesses and don't see them in terms of success or failure.

* We laugh together and cry together

* We are all following our own journey in our own unique way

* Above all else, we may lie on the floor, screaming and kicking, or feel like life is collapsing around us once in a while….but at the end of the day, we drag ourselves up, dust ourselves off and rise to fight another day.

For we are Warrior Women and we write not to please others, stroke our own egos or be judged, we blog because we care!
Our blogs are our therapy, and through sharing SHIfT HAPPENS! This award was created in particular for the following Honest Bloggers for they have opened their hearts in public and gained many friends in return....

*********

for a while now i have been thinking of posting here again, to let me vent and to, hopefully, provide a place for others in the same boat to share and vent if they need too.

my doctors appointment today has opened another door to another problem~i have had increasing pain in what i can only describe as my bones and joints, a deep aching, pain that makes me grit my teeth and feel close to tears~more recently the pain has become so intense i have been able to do little more than lay in bed with a hot water bottle to ease the many points of pain.

well my doctor is 99% sure i have a cross-over of M.E and Fibromyalga~he examined me for the fibromyalga pressure points~oh my and did some of those feel tender! i am off for the blood tests that will rule out any other possible problems in two weeks and have a follow up appointment with my gp in six weeks to see how the amitriptyline helps me with the pain and my sleep.

he sent me away with a few web sites to find more information and a lot of things that don't quite fit in with my M.E now make a lot of sense to me~which makes me sure that he is right with his diagnosis.

so something new to manage and learn to live with!

~swine flu~

2009-07-20T08:19:00.002+01:00

i have just been online looking for information on recovery from swine flu and have seen loads of 'headlines' saying how so and so has made a 'full recovery' from swine flu.

they way they are going on makes it seem everyone is going to die from it and whoever survives is a miracle.

welll come and interview me~i am a miracle~i have diabetes and m.e and made a full recovery from swine flu~although my m.e is now considerably worse, but having lived with it for four years thats not a major problem to me.

it is very sad that people have died from it but to be honest people die from regular flu every single year and always will. if someone has other health problems then of course they are at more of a risk.

i really think the media is going so over the top over this and are nothing more than scare-mongers.

~swine flu-part II~

2009-07-11T17:06:00.003+01:00

i cant believe i had swine flu
swampy called the doctor out because my 'summer' cold became really bad over 24 hours, flu not a cold, and as i have had my flu jab he was worried.
well doctor came in, in mask, gloves and gown gave me a going over~'you have swine flu' and prescribed tami flu for both of us and isolation for me for a week.
that was days and days away now~he told me i would feel better after a few days.

well i dont.
i have had a few good days~went shopping once with swampy
but today i feel back to square one and swampy is rigging up my little tv in the bedroom so i can go to bed and watch harry potter!

i am wondering how much of this is still the swine flu and how much is it my m.e become worse because of swine flu?

swine flu

2009-07-04T22:14:00.001+01:00

oh yes its arrived in the house of solstice dreamer

doctor was called out on thursday after i had already had 2 days in bed...

in isolation and bed for another few days

2009-02-10T11:25:00.003Z

when i was first diagnosed with diabetes my doctor said i must have been feeling really really ill with that and my m.e. fighting each other

but i didn't really

i just felt ill all of the time with just variations from day to day

hour to hour

what i have noticed now is that my diabetes medication actually masks the main physical symptoms of my m.e somewhat, so i feel a bit better...a little tiny bit better! when i forget my medication

but its catch 22 because i cant not take my medication

swings and roundabouts to be sure

but really its a good thing because while i am so aware of my m.e it provides me with boundaries~i know how far to push myself and can have prior warning of the 'boom and bust' so i slow down.

what it cant do is take away my dreadful memory and confusion, i so hate being surrounded by crowds and noise, i always find myself tetering on the edge of a panic attack at these times and i find it hard to concentrate~even if its just buying food!

what a crazy thing m.e is

~to make you weep~

2008-12-18T16:33:00.002Z

i discovered this today and it makes devastatingly sad reading

Sophia and M.E

Sophia's Story

~cold~

2008-09-24T19:48:00.002+01:00

so the move caught up with me and i have had a cold for a week now, the worse is over but it just wont go away...

i have registered with my local GP and saw the nurse last week for my 'new patient' meeting~when the subject of my m.e came up i had the feeling she glazed over when i began to explain my symptoms...of course the first question was 'how do you know its m.e its very hard to diagnose you know...' so then i had to give the history of my diagnosis...did she really think i would say i had m.e without being totally sure and have a doctor, actually two doctors tell me i have it??!!!!!!!!!!!!!!!!!!!

then i had the usual 'oh but it will go away of course'...yes i know it will but i am not concerned with it going away, i know it will. my main concern is getting through each day, with waking up feeling shattered every single day and not knowing what the day will bring me, of loss of independance in having to give up driving...

i guess i am being unfair to her...i think i am just worried about seeing the doctor tomorrow and having to go through the whole m.e thing again and also finding myself with a doctor who does not believe m.e is a real illness...yes there are still those out there who believe it is all in the persons head...

can you beleive that?

~moved~

2008-08-14T13:20:00.003+01:00

well we moved two weeks ago and the initial adrenaline that kept me going through the move has dispersed and my old aches and pains are back.

i have not been resting as i should be but luckily this means i sleep the sleep of the dead when i go to bed although i still wake up as if i have not slept at all for weeks!

one good thing is i am in a really good routine with my medication and not forgetting to take it every day.

this week is my moon time and yesterday felt so very ill, we had gone out to buy lampshades and look at flooring but i became so ill we had to come home~as i type i am sitting with a hot water bottle at my back, despite being filled with medication this is the best relief i get, so long as its hot.

i always think that if i did not have m.e and was working i would have to take at least three days off a week just because of this...what a thought.

~migraines~

2008-07-24T17:22:00.002+01:00

i have had migraines as long as i can remember, well over 35 years now and i always thought that maybe they would become less the older i got...not so.

today i am getting over a two day one, yesterday i had to finally go to bed for a few hours the pain and sickness was too much..annoying as it was the big alpine stage of the Tour de France and so i missed most of the live programme.

they come on from nowhere, with no trigger and can last a few days and during these days i cant do anything....well thanks to my m.e most days i can do little so imagine m.e with a migraine on top!

why oh why cant i just listen to my body and rest and be sensible?????

~weary & stressed already~

2008-07-24T15:40:00.002+01:00

if anyone reading this reads my other blog they will know i will be moving soon and already stress of moving is taking its toll.

there is so much to remember, people to contact, letters to write etc etc.

i am just getting over a two day migraine and feel so weary and tired and the migraine is still hovering in the back of my head waiting to come back...my already disrupted sleep is even more disrupted until i think my head will explode with all the thoughts there.

swampy keeps telling me to slow down and rest and not think about everything but i cant even though i know i will pay for it later...

i am also worried about having to change doctor, terrified that i will get a doctor who does not believe m.e is a serious problem...yes they do still exist...

~silence~

2008-07-10T18:19:00.002+01:00

i think i was becoming tired of my own voice for a while, going on about my aches and pains...its bad enough living with it let alone writing about it!

but then i thought it was time for a re-cap, it kind of helps to put things in pespective, allows me to sit back and see if there are any changes in me.

are there?

not really...

my m.e continues to go up and down like a roller coster, all the more obvious with my diabetes under good control.

i know it sounds bad but there were times when the uncontrolled blood suger masked the m.e quite well but since on the medication i am much more aware of the m.e symptoms...it has not helped my m.e in any way at all.

the other day i was thinking of m.e and me and how at times i feel like two people.

writing in my other blog i am (in my head at least) this person who is healthy and active with a 'normal' life...whatever normal is anyway! then i pop in here and just let rip with the real me, winging and moaning...which i suppose is not a bad thing...kind of lets me vent my frustrations.

its odd little things that set me off and make me upset at times with this illness...

i became upset last weekend when i was in london with my sister, sam.

i wanted to take some money out of the cashpoint in the hotel, now i usually have to concentrate on that activity as my brain does not seem to like to remember numbers, their orders, but this time was exceptional...after following instructions with agonizing slowness i then found myself wailing 'oh no whats a personal identification number? i dont have one of those!!!!!!!'

sam had to patiently explain it was my pin number.

~lardy~

2008-06-04T13:48:00.003+01:00

there is no other word for it, i feel lardy today.

maybe its my hormones, that drift towards moontime...but its a feeling i hate...

i couldnt sleep last night~well i slept until about 1-2am and then woke and my joints and muscles were hurting so much and then my 'washing machine head' kicked in so i was still wide awake when the birds started to welcome the dawn.

i think i must have drifted off around 5am for a few hours.

feeling a bit miffed as my blood suger is sky high...

i think i need to check my huge herbal tea collection to cure those 'lardy' feelings...

~MOT~

2008-06-03T10:15:00.002+01:00

i have had my yearly major 'mot' and all is well, although my non fasting blood test results have gone walk-about.

the doctor did want to do a re-test there and then but as i had been at the surgery for over an hour and just wanted to get out i asked if he was happy for it to wait until my next 6 monthly check up~yes folks i have two 'mot's' a year each one involving 2-3 appointments 'groan'.

anyway the doctor was happy to wait so i got out of there as fast as i could.

i'll tell you something i found odd though...the surgery that day was doing only whats called the 'healthy pulse clinic' (my gp has a major surgery and two satellite ones because we are such a rural area) and there were five of us there...i was the only one under 50.

i dont know why but it kind of made me feel a bit weird and i was half wondering why i was the youngest...and there were no men either!

~ouch~

2008-06-01T11:28:00.002+01:00

for the last few days i have had such painful joints and muscles~they have been aching and sore like usual, but these past few days they have been a lot more painful and today i feel really weary.

i am home alone so wanted to do things while i had the place to myself but just cannot summon up the energy to move about too much...

~plodding on~

2008-05-22T17:01:00.002+01:00

i have not posted here for a while.

i have been plodding on with my assorted aches pains and problems, i sort of became a bit bored by what i feel was repeating myself~but looking back maybe i was just being hard on myself.

as i said i have been plodding, taking each day as it comes.

sometimes my tablets still get the better of me and i will cook dinner and then feel too sick to eat, i have days where i just dont fancy eating and days where i just ache too much to want to cook~when even eating makes me feel weary.

i realised if you read my other blog you would never guess what i live with day to day~i think that is the place where i am 'normal' and healthy, i write as if i am well...if only i were.

i went shopping to dorchester this week and struggled so much~i really wanted to go to the market to look at all the plants and buy some for our garden~by the time i reached it i was so slow and tired i was there five minutes and had to leave.

how frustrating is that?

~i wish i was able to drive again~

2008-05-01T15:05:00.004+01:00

i have been feeling a bit sorry for myself lately~i think it is the lack of independence that is getting to me somewhat.

i dont feel confident enough to drive pippin because of my m.e~but something in me feels i could manage a small car on my good days, giving me a little independence~even if its just a five minute drive up the land to sit up bulbarrow hill and look at the blackmore vale for an hour.

of course i am in a catch 22 situation~i cant work to earn the money to get my dream car, another 2cv! s* is always on the look out for me, but even when he finds one thats a good price-£600 its still too much for me.

it makes me feel so trapped

it really hit me last night when i really wanted to go to the beltane celebration at glastonbury tor, the dolmen grove were meeting there to support the glastonbury druids.

i knew s* didnt want to go really so i didnt push it, resulting in me going to bed feeling really upset.

i have never really considered my independence before this, i dont know why. i suppose it never came up as i had/have no friends locally so the prospect of going out never came up.

now there are a few things i really want to do but can only go if s* will drive/or he really wants to go to the event himself.

so as he is not a pagan he doesnt really want to go to the same things as i do.

so now i consider how much independence i have lost because of this illness~a lot :(

~Boycott to the presence of Guillermo Vargas~

2008-04-19T17:03:00.002+01:00

please go and sign this

this so called artist is a vile disgrace to humanity

thank goodness that what goes around comes around...

~hooray~

2008-04-17T22:32:00.003+01:00

i had an hour and half session at the opticians yesterday~i needed stronger prescriptions for my glasses, so picked out some new ones to be collected next week.

i had my diabetic eye screening, the first, and the chap that did it said he was 99% sure my eyes are fine in that respect!

hooray!

my great gran hawkins lost both of her legs to diabetes in her old age and although i dread that happening to me i think i would find the lost of my sight so much more difficult to deal with.

to no longer see the moon, the rain, the wind in the trees...i cant imagine it...

~cold~

2008-04-11T17:12:00.003+01:00

swampy has gone down with 'man-flu' ;) and is sneezing and spluttering...how long until i go down with 'grrl-flu'??!!

time to try my soul sister miss*r's remedy of an infusion of thyme with honey...

~painful night~

2008-04-10T16:22:00.003+01:00

some days since my last posting~i had my 'washing machine' head on in the early hours and could not sleep, everything was hurting so much it stopped me sleeping and so my mind just went into total overdrive.
when the soles of my feet hurt i know i am in for a bad night.

i am also feeling 'fluey' i dont know if iam heading for a cold or its just that old m.e flu like symptoms~probably the latter.

usually i like to keep a routine and wake around 7am for my first cup of lemon tea of the day and bring myself round slowly, but after my bad night i slept right through until 10am~resulting in feeling totally out of synch with the day and not really getting anything done. but i guess i needed that extra few hours

my nurse did say that she thought my diabetes medication would make my m.e feel not so bad as my body wont be fighting two different things...i really dont think it has worked out that way because i am actully finding my m.e symptoms being as acute as ever!

i guess its a swings and roundabouts things

thank goodnes si no longer have the side effects to my medication though~one thing to feel glad about!

~i hope those of you who read this are feeling well today~

~my head hurts~

2008-04-07T17:14:00.002+01:00

had the weekend at my mums and came home yesterday, i am glad i did because driving home i was feeling so ill~the way i am when my m.e is really bad, then i developed a massive headache...i get these odd headaches which my gp say are migraines, just different from the classic migraines i usually get.

so i had a totally miserable night and probably took far more of my prescribed pain killers than i should.

as a result swampy wouldnt let me out of bed until around midday, telling me to rest.

a concept i find difficult.

when will i learn?

~why? why? why?~

2008-04-01T20:39:00.005+01:00

i was laying in bed last night~feeling as exhausted as if i had not been to sleep for a week or two and i suddenly thought to myself how i do myself no favours by not following the advice given to me by the OT at the M.E clinc i attended.

'why?' i was thinking 'do i not?'

i think half of it is forgetting~the day just passes in varying levels of aches, pains, tirdness, exhaution, forgetfulness, dizzy spells, headaches,painful joints and muscles~and i just forget to rest regularly in order to see the day through. i forget that anything drains my enegy resources.

i do have my half hour in the morning where when first awake~i was told to just sit and come round with a cup of tea~just dont jump up (as if!) and start the day in a frenzy.

i should have regular half hour rests~every 3-4 hours~and make sure its s a proper rest, with no distractions~sitting with a book does not count, nor listening to the radio.

our OT explained to the group that ANY external stimuli counts as something that drains the energy resources and as we have limited energy it takes little to drain it. therefore to rest properly we need total peace and quite to re-charge our batteries.

i also have these really 'odd' moments where i am doing something~just a regular everyday thing like make a cup of tea and halfway through the task totally forget what i should be doing~i have to literally stop and think it through~i get to a point where i am not sure if i am doing the thing right.

its a weird, horrid feeling.

i am more used to not being able to name things in conversation~swampy is used now to me asking for 'the round thing' he generally knows i mean a plate if its said in context!

my writing is still dreadful sometimes leaning towards just plain dreadful and my spelling even worse~hooray for spell check!

and of course i still have feelings of utter frustration at being ill and not seeing a light at the end of it all~and now i am on tablets for diabetes i really feel quite down at times.

so at this time of the waning moon, a time to break bad habits i vow to start to look after myself more, and work with my illness's and follow the advice of my OT

~two a day~

2008-03-07T18:01:00.002Z

i spent yesterday taking my blood two hours before and after each meal and although my blood glucose levels are still too high i can see some kind of pattern with its rise and fall.

i really think within two weeks my levels will be down to 'normal'~its just a shame i have to achieve it with tablets...

~yuk~

2008-03-03T19:08:00.001Z

i think i am having some side effects with my medication~i have gone off food and right now swampy is cooking his dinner and its making me feel really sick...really, really sick...........

~oh golly~

2008-02-29T17:00:00.002Z

i had my yearly diabetes check up with my nurse this week~she was really pleased with weight loss, blood pressure, diet etc but unfortunately its not enough to reduce my blood suger so i am now on tablets, metformin.

i am feeling quite sad as i have to stay on then for life. at the moment i am having one daily, next week two daily and the week after three daily.

i have two appointments in may for a non fasting blood test and some kind of 'healthy pulse' clinic. i also have had my paperwork through to attend the new diabetic eye screening service in april~this will be a yearly thing and next week i have my regular eye test, which is two yearly.

i have to say i am feleing quite low over this, maybe more than i did with my initial diagnosis~i think it has taken a year for the seriousness of it to really sink in and how much of a life changing condition it is.

i suppose its given me a bit of a kick in the behind to re-check what i eat, its so easy to slip into bad habits~to be lazy.

my nurse did say that my ME may become a little easier with my blood suger levels being stable, so that will be interesting to find out over the coming weeks.

~worries~

2008-02-14T17:26:00.002Z

we are hoping to move to the new forest this year which gives me a big worry in relation to my M.E

my big worry is that i will end up having a doctor who does not understand or even believe in M.E.

i have heard so many stories of people being fobbed off or worse...when i attended my M.E support group in wareham hospital there was one chap there who was fobbed off by his doctor for over a year.

the thought of being forced into work and expected to carry out a daily role is terrifying when it takes all my energy just to wash up or hoover or to even walk up the road.
arrghhhhhhhhh

~more & more fed up~

2008-02-14T17:12:00.002Z

i have to say i am getting more and more fed up and having low moods from feeling ill, all of the time.

not depressed just low and cheesed off...really cheesed off.

its like being on a never ending treadmill of painful joints (thats my current BIG ailment) painful muscles, tiredness~a dragging, aching weariness that never goes. oh one thing might ease off but only to allow another pain to come to the front.

to go to bed exhausted and wake up exactly the same, day in day out, is so wearing~the past week i have been out like a light each night and sleep through, but its not a sleep that makes you wake feeling refreshed and ready to fight another day.

i try to have a set routine to my day, which is generally trying to do something, anything, to help my OH swampy with housework. generally i manage to do washing up, but not drying, and say 3 days out of 7, breakfast.

you know what i would love to have a whole day of doing what i used to do.

i dont know if i mentioned this before but 5 years ago i used to manage several hostels in a seaside city, i worked with addicts/homeless folk, mostly men and boys, trying to help them get their life back on track. generally doing 8-5 monday to friday~it was hard work but i loved it.

now i find cause for celebration if i can just hoover one room.

how dreadful is that?

2008-01-22T18:07:00.001Z

full moon blessings to you all

writing

2008-01-22T17:54:00.000Z

since i have had m.e my handwriting has really suffered.

not only do i have physical difficulties with it being painful to hold a pen, because of my joints hurting but also my brain does not seem to connect to my hand and my eyes!

i try to write words only to find that i cannot form the letters or forget the word i am writing or forget how to spell half way through a word...no matter how small! today i was writing and it took me three attempts to write a word properly! to make it worse i was sitting looking at the half written word and couldnt even think what it was i was writing...all it looked like was marks on a page!!!

typing is easier as i have spell check and slightly, only slightly, easier on the hands and arms.

i have to find it amusing or i would cry.

2008-01-15T12:08:00.000Z

i got up in the night to go to the bathroom and got back into bed so exhausted... thats something i cannot, even now get used to.

the exhaustion.

it does vary from day to day, hour to hour but i still have moments when i think to myself...

'why on earth am i so tired?'

for a few days i have had a really sore throat and my glands and joints been so sore.

i cant really remember what it was like to feel well anymore, i cant remember a time when i was not ill all of the time.

its an odd feeling

aches,pains and frustration

2008-01-03T19:11:00.000Z

so many things about having M.E frustrates me

and these things change day to day, hour to hour depending on how it changes over the day.

this evening my legs have been aching so badly, earlier while preparing dinner i had such a sudden exhaustion i had to sit down...in fact i really wanted to lay down but knew if i did i would fall asleep.

waking up every morning feeling totally exhausted is a very wearing feeling...after having 7-8 hours sleep i wake up and either feel totally exhausted but stay awake or i will just fall asleep...i feel so tired that i cant wake up...i did this, this morning.

M.E is such a wearing, draining experience, day in day out.

whats worse is that it has become so everyday that often i dont notice all the different symptoms unless i concentrate on them as individual bits of illness...or it comes to me suddenly, like when i decided to cook dinner and suddenly realised that i couldnt, but i did.

i hate the way it affects my appitite...feeling too unwell to be bothered to cook or eat. having food in front of me but not wanting it, eating to go through the motions.

ho hum...

2007-12-29T16:01:00.000Z

my blood sugar levels are never very stable, up and down like a fiddlers elbow as the saying goes. over the yule tme it rocketed. it seems it doesnt take much for it to go beyond acceptable.

i am going to have to get used to this...you would have thought that during the passing months i would have had some control...but no.

i cant imagine what my nurse is going to say.

i am now back on lots of raw and steamed veggies and salad.

my M.E...well i always say that its not good when the soles of my feet hurt! and they have been hurting for a few days now.

oh for my health!

2007-12-09T16:49:00.000Z

frustrated more frustrated

why do i worry about my spelling etc....because people would not undersytand what i write...i really haate all this double checking of my sdpelling...gues swhat i am not here!

see why i have to double check everything i write? even with a simple shopping list its like having some odd dyxlexia

fed up and frustrated

2007-12-09T16:43:00.001Z

fed up with...
having to watch what i eat
with feeling exhausted
with aching
with my eyes hands and brain not working together
of not being able to write without mistakes and having to re read everything constantly

bed day

2007-12-02T13:40:00.000Z

as for my M.E i had a humdinger of a day on Friday where i hit 80%...
anyone know of any good cryogentic freezing shops were i can put myself on ice until cures are made?!

oh heck

2007-12-02T13:34:00.000Z

i have my first MOT since my diabetes diagnosis in two weeks and after taking my blood yesterday i am somewhat concerned.
my blood had gone from a not too bad 9 mmol to closer to 13 mmol...and that is even with me not eating badly...following a week of absolutely no crisps and one small turkish delight...after a week of lots of steamed veg and salmon cooked with no oil.no breakfast cereal just homemade smoothies made with banana and blueberries and one single tea spoon of honey.

i am hoping that my system is just a bit funny what with having the flu and still getting over it.

am so dreading the results when they come back in.

flu

2007-11-24T15:22:00.000Z

i have been ill...flu.
you really dont want flu when you have m.e!
silly thing is i had flu only a few weeks after having the flu vaccination...go figure.
so i had a week in bed then a week getting over it.

but today i dont feel very good at all, just feels as if i have a cold coming, which i just think is my m.e.

i guess on the disablilty scale i have been around 80%, although at the hight of the flu i successfully hit the 90%, no wonder i stayed in bed!

still, amazingly my blood suger didnt raise itself too much, 9mmol..which for me is good.

2007-11-11T08:43:00.000Z

to the memory of Johney Gaul ~ died 17.09.1918 ~ France

In Flanders Fields
by John McCrae, May 1915

In Flanders fields the poppies blow
Between the crosses, row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie
In Flanders fields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep,
though poppies grow
In Flanders fields.

i went out for some fresh air yesterday, needing to blow the cobwebs away.
it was a lovely walk up the hill, taking it slowly so i could enjoy it and ignore the aches and pains.
it was colder than i thought however and after a while my hands were freezing and i had started to cough...

the coughing became worse during the evening and i was feeling more and more exhausted...when i woke up at dawn this morning i could hardly swallow my throat is so sore and swollen...i think this time it is a cold and i feel really cheesed of about it.
maybe its my own fault for not wrapping up warmly, maybe i just came too close to someone with a cold on my one trip out into dorchester.

oh well i shall spend the day wrapped up warm in nice cosy plaid pyjam bottoms and jumper, wrapped in a blanket in front of the fire and remember those who died in the Great War...my Great Grandad Johney being one of them.

Oh Dear

2007-11-08T18:22:00.001Z

I had a fasting blood test this week and was given the date for my first major M.O.T since being diagnosed with diabetes...cant say i am looking forward to it given that my weekly readings are so up and down.

my m.e continues to hover around the 60%...but as usual thats my norm.
i did some housework today, not too much but was getting so out of breath and had to keep resting...now i have one of my 'odd' headaches...migraine but not migraine...have taken a couple of codene and some other painkiller i was prescribed thats okay to mix with the codene, but its not really working.

i hate headaches...i can live with the m.e and diabetes but things would be much nicer if the headaches would stop.

'Nature always wears the colors of the spirit'

2007-10-23T16:19:00.000+01:00

Ralph Waldo Emerson

Well i am off camping tomorrow, complete with sniffly nose and that 'feeling' of an approaching cold.

this is my way of not letting my poor health beat me.

i enjoy camping...although in a converted van and not a tent is not quite so hard-core! however our camper, if you haven't read about it in 'my dreamings' is an old French electricity board van...then owned by a vineyard before being abandoned in a barn for ten years...so it is not one of those luxurious modern plastic-fantastic motorhomes with everything and the kitchen sink!
i will take plenty of warm clothes and warm blankets and lemons and honey to make hot drinks, if my cold does develop. but if it does develop then we will be coming straight home anyway.

so i shall leave you here to go and pack.

any regular readers take care of yourselves.

'Music washes away from the soul the dust of everyday life'

2007-10-22T19:49:00.000+01:00

Berthold Auerbach

i thought i would start to jolly up this blog a bit...i didn't want it to turn into a depressing 'woe is me I'm ill' sort of thing, so please enjoy some music~sorry if you are not fans of folk music!

the picture is actually a very good cartoon representation of me...according to swampy!

'You aren't ill: it is just that you are made of second-rate materials'

2007-10-22T19:22:00.000+01:00

Natalia Ginzburg

i had the flu jab last friday...the last few days i have started to sniff and sneeze...today i have been coughing and sneezing and feel 'coldy'.
i am sure its not my m.e, i'm sure its a cold...other half (known as swampy in my sister blog) monitors all my symptoms and is sure this is the start of a cold and not my m.e having a funny five minutes.

we were supposed to be going camping (not in a tent...if you have looked at my other blog you will see we have a camper) this week, wednesday to monday, for a 'halloween' camp...we shall see how i am tomorrow...if i'm worse we wont be going anywhere.

i am a tad miffed as i cant get on the m.e forum...its turned into a kind of life line for me now...to be able to have contact with people going through the same as i am.
for ages i kept thinking that all these symptoms were just imaginary, that my mind was playing tricks on me...and it still sometimes happens. mostly when i have maybe half an hour when i dont feel too bad at all and i think i'm fine...of course it doesnt last...
in fact my life, going on the m.e/cfs disability scale (which is below my posts) goes from 70%, thats when i'm feeling ok to 90%, which is where i was for most of last week. at the moment i would say i am 70%, if this cold takes hold i can fully expect to be back to 90% and good for nothing.

if there was a reason for me having this i would love to have a clue as to what it is and why!

can i manage?

2007-10-20T13:56:00.000+01:00

in an effort to keep my mind active i have started an Open University course, with the hope that i would be able to continue my studies and gain a degree in history.

of course, as any folk with M.E reading this will know there are many obstacles in the way of this.

~my poor memory and concentration
~fuzzy brain
~aches and pains, writing and typing gives me a lot of pain
~tiredness

etc etc etc...the list goes on and on.

at the moment i break my work down into 1-2 hour chunks in an effort to keep track of hours (my course is minimum of 16 hours study a week) with breaks in between, but its not really working like that because i just find my brain shutting down. i can be sititng looking at the computer screen or book or notes and just...drift off... a bit like i am as i type here...i type but my eyes stop focusing and thoughts go. and a huge thing i have trouble with is that i find my brain, eyes and hands do not co-ordinate properly anymore and my spelling is so dreadful, i get my words back to front, miss letters, so i have to constantly go back over everything and make corrections. in fact it is this which bothers me the most...if i didnt constantly recorrect people reading this would think i am a total idiot...in fact just to show you what i mean, i wont correct anyhting for the rest of this poist...and hope you can understand me!
maybe i should just make this brief!

i saw a doctor yesterday...not my usul one...he is in paris to watch the rugby today...lucky, lucky man!
but i explained to his locum that i wa sconcerned that my M.E had not been updated on my records...updating was oh so easy...'i feel exactly the same as when i first saw my doctor and was diagnosed'!

its strange having an illness for which there is no cure and nothing to really bring relief...to go day after day, month after month knowing it will go away when its ready. but thank goddess it is not life threatening.

i have found an amzing web site an dforum where i am able to 'talk' with others suffering the same anf its so amazing to actually find these people and not feel so isolated.
becuase it is an isolating illness...especially when you try to explain it to people and allthey say to you is 'oh but you look alright'

grrrrrrrrrrr i always wish...and i shouldnt really wish it on people...but if they just spent a day in my body they would then know not to judge me by my appearance.
i always try to stay happy and positive and be cheerful when inside i just want to lay down and not speak.
some days when the pain and wearyness is so great i find it hard even to gather the energy to talk...i feel like alump that is just being.

but the funny thing is i have been ill for so long now that being in pain and exhausted and all my other symptoms are normal...being ill is normal...so when i say to someone...'oh i'm fine'....no i am not fine i am so ill but on a certain level dont feel it because its my norm. put someone else in my body and they will be in bed calling for medical attention!

i mentioned that i thought my diabetes mot was due...so the week after next i have another fasting blood test then two weeks after that my mot...where my specialt nurse will weigh and measure me and discuss how my levels have been...i know how they have been....not good. and i suppose we will discuss wheteher i can can continue to try to control it through diet/exercise.
i tell you the only good thing that has come out of my diabetes is loosing loads of weight...fantastic!

Catch 22

2007-10-18T10:34:00.000+01:00

that is very much how my life is right now.

with the diagnosis of diabetes it was stressed how important even just a 20-30 minute walk every day will help my blood sugar levels and i know how true that is...
the catch i have is that there are days when my M.E is so bad i cannot gather up the energy to walk anywhere apart from round the cottage. so it will follow my blood sugar will not approve.
i went for a walk on monday morning with swampy and cody and ended up walking too far, probably 40 minutes walking, not a whole lot further really...just because it was a glorious morning and the fields were teaming with wildlife...so of course i felt absolutely exhausted by lunchtime and even worse by the evening and on tuesday i was good for nothing.
this followed over to yesterday, our weekly shopping day where we go into dorchester.
i once saw a specialist,who said i was far too young to have to rely on a stick to lean on when i am really bad. thats all well and good for him to say that but when i can bearly lift my feet from the floor and i really need to lean on something just to stay upright then surely age is not an issue!!!
i have an appointment at my doctors tomorrow so i will bring this up, i know its not the best but yesterday i so wished i had one to lean on...its hard to describe the feeling of having to lean on something so badly that i was using the edges on freezer cabinets as a prop!

ah the joys of ill health.

flu jab...

2007-10-15T15:52:00.000+01:00

i had this done, my first ever, two days ago and feel lucky i have had no real side effects.
the nurse said it might make my M.E worse, but to be honest its been so bad lately i wouldn't have known the difference.
the pain in my joints and muscles have been dreadful...to the point of, last friday, taking to bed and feeling miserable.

i have always been very positive about having M.E, knowing nothing i can do will make it go away, tablets such as paracetamol etc do nothing to reduce pain.
i have had it so long now that it is a part of me and i am never free of the symptoms...all that changes are the severity of them from day to day...or even during the day. so if i am asked how i am and i reply 'oh okay thanks' the reality is if the person asking the question where suddenly in my shoes they would be feeling absolutely dreadful and take to their bed.
m.e is me and i am m.e

when i was first diagnosed with diabetes my doctor did consider my symptoms of M.E could in fact be the effects of the un-diagnosed diabetes. so he double and triple checked all my various tests but it came back as...yes M.E wont go away with sudden change in diet and reduction of sugar levels in the blood.
so it came down to dealing with two, very different, but very significant illnesses.

i do not work at present...i think if i started a job i would be sacked within days. the trouble with m.e is that it is unpredictable...very unpredictable.
take for example last friday; i got up and was not feeling too bad by 2pm i was in bed.

its a strange old illness but one you have to learn to live with.

as if M.E wasn't enough!

2007-10-15T14:41:00.000+01:00

merry meet

Early this year i went to see my doctor as i had been having an increase and a change in my migraines. these i have been having since childhood and just take my medication when needed and all is well...as well as you can with a humdinger of a migraine! so i expected, once i had discussed all the little details of these new headaches, to be prescribed some different tablets and sent on my way.
was i heck...instead my doctor looked at my notes for my last blood test, looked up and said 'what you are describing sounds like side effects of diabetes'

oh great...

so a few days later i presented myself for blood tests and the nurse booked me a doctors appointment for a few days time to get the results.
back i went, convinced he was wrong and again expecting tablets, sat down and was told...'yes you have diabetes and its a worry because you are far too young to have developed it'... i was a few weeks away from my 40th birthday, so quite pleased that i was considered 'too young'!
however by 'too young' he meant that i have been happily strolling around and eating all that junk food with undiagnosed diabetes

oh great...

so then followed many an appointment with jo,my specialist nurse, the diet gone over with a fine tooth comb and instructions to test my blood weekly and keeping my blood levels at 4-6 mmol/l, as well as six monthly M.O.T's. i was reassured about the radical change in diet...my new eating habits were in fact what everyone should be eating...in an ideal world that exists outside of our fast food culture.
lucky for me i love vegetables and live miles away from the temptation of fast food!

it also seems that the eye test i had the year before which showed some damage to the retina of my right eye ('fuzzy nerves' was how it was described!) was actually an indication of diabetes and if i had taken up the offer of having it check out by a specialist, the diabetes would have bene picked up sooner. as it was i didnt feel the need to take it further as the doctor (a different one to my usual) was quite happy my decision. as it was i was given glasses with a prisum in the right lens to deal with the nerve damage and lenses to make words bigger in books and on the computer...and of course i chose the nerdiest, NHStastic, tortoiseshell ones i could find!

well i have been doing okay up to about three or four weeks ago, my will power seems to have abandoned me and my once amazingly healthy diet has tied its little spotted handkerchief to a stick and strolled off down the lane.
the thing is i know its wrong and at the end of the day its my health at stake...my great gran lost both legs to diabetes and my uncle was diagnosed a few years back...but sometimes one square of chocolate a week seems to be oh so small...

the thing is i did my blood this morning and its at a rather jolly, if alarming
10 mmol/l...which it was at a week ago.

crapola

of course i know what i have to do.

myalgic encephalomyelitis/chronic fatigue syndrome

2007-10-13T14:29:00.000+01:00

i thought it would be best for my first post to give those of you not sure about M.E a kind of crash course! those of you reading this who have it....just skip this bit if you want!

Myalgic encephalomyelitis or chronic fatigue syndrome used to be called 'yuppie flu' but luckily in recent years it has been recognised as a real illness (at one point even doctors did not recognise it was a serious illness...for many years people who suffered were considered to be 'pretending' to be ill and not believed...leading of course to many very ill people trying to lead normal lives.

The first symptoms are similar to flu, mine started as an ear/sinus infection then a cold which would not go away and became worse instead of better over a few weeks. although thinking back i was suffering from unexplained 'feeling ill and tired' some months before this.

the main symptoms are muscle and joint pain (although for me the joint pain was not present at the beginning and has become worse over the past year), debilitating fatigue which sleep and rest does not improve and mental fogginess, difficulty in concentrating, short-term memory problems, sore throats and cold like sniffles, swollen glands, headaches and insomnia.

nobody really knows the cause of ME, but is believed to be triggered by a stressful event or viral infection.

looking back now i believe mine was a result of several things...i spent many years working with adults with severe mental and physical handicap, who's outlet for understandable frustrations was aggression, although to me this was normal working conditions. from this i moved to managing four houses for the homeless...working with them to get into rehab, find work, college courses etc. i think the years of this, although i loved the work immensely, actually caused me to 'burn out'. at some point over these years i had very bad flu and several sinus infections.

then i changed jobs and moved house at the same time...unfortunately the job, which seemed so great, turned into one big nightmare for many reasons and was extremely stressful.
i think it was then my body staged its coup and it was 'hello M.E'!

i was very lucky though. i was initially told i just had 'flu' and it would go away when ready, after several weeks of this i wrote a list of my symptoms and booked to see my doctor...i ended up seeing a totally different doctor, but as it turned out it was the best thing that could have happened. he read my list and immediately told me he thought i had M.E, arranged for blood tests to rule out any other serious and not so serious illnesses and referred me to a M.E self help/support group in Wareham, run by an occupational therapist, which ran for six months.

that was in the february of 2005...i am not better now.

warm fires & wool blankets

~atos lies~

~ha!~

~ouch ouch ouch~

~wahhh~

~sigh~

~why i dont...~

~allow me to moan~

~other bloggers~

~i do not *heart* this~

~ouch ouch~

~ouch ouch ouch~

~one month before heartbreak~

~bifocals~

~arggh~

~feeling elderly!~

~sigh~

~thank you~

~e-mail from consultant~

~crone?~

no it does not agree with me!

~urgh~

~yes i have~

~the spoon theory~

~beyond a year & fibro~

~swine flu~

~swine flu-part II~

swine flu

~to make you weep~

~cold~

~moved~

~migraines~

~weary & stressed already~

~silence~

~lardy~

~MOT~

~ouch~

~plodding on~

~i wish i was able to drive again~

~Boycott to the presence of Guillermo Vargas~

~hooray~

~cold~

~painful night~

~my head hurts~

~why? why? why?~

~two a day~

~yuk~

~oh golly~

~worries~

~more & more fed up~

writing

aches,pains and frustration

ho hum...

fed up and frustrated

bed day

oh heck

flu

Oh Dear

'Nature always wears the colors of the spirit'

'Music washes away from the soul the dust of everyday life'

'You aren't ill: it is just that you are made of second-rate materials'

can i manage?

Catch 22

flu jab...

as if M.E wasn't enough!

myalgic encephalomyelitis/chronic fatigue syndrome

~i do not heart this~