welcome to the sister blog of 'my dreamings'

the title may be a bit strange, but to me it has a comforting feeling and makes me think of sitting by a roaring fire, wrapped in a lovely wool blanket.

i set this up in order to vent the occaisional frustrations i feel with living with M.E, diabetes and Fibromyalga (and so as to not vent in 'my dreamings') and to provide links to sites that i hope readers living with the same can access...and of course anyone with any illness can vent their own frustrations and hopes and wishes via comments!

~Bright Blessings to you all~

~where shall we get religion?

beneath the open sky, the sphere of crystal silence surcharged with deity

the midnight earth sends incense up, sweet with the breath of prayer

go out beneath the naked night and get religion there~

sam walter foss

Saturday, 8 November 2014

~its been a while~

its been a long, long time since i blogged here.

once again i thought about deleting it but thought 'no~its a good place to come and have a moan'

a lot has happened since i last posted here
my diabetes medication has increased and i now have to inject insulin once daily, testing my blood twice daily and i am now under a diabetes clinic who are keeping a close eye on me.

my fibromyalgia/M.E is ever present and not improving in any way. i am in fact having a bad flare up at the moment. so most of my time i am on the sofa (falling asleep on and off) or in bed. i keep a large...very large bucket bag stashed with my journal, pens, kindle, tarot cards and book (the wild unknown tarot~have you seen it? its beautiful!) lip balm, cough sweets, a hand crafted corduroy mouse my sister had made...this bag gets moved from place to place with me like a very strange survival kit.

in my last post i mentioned the 'wear and tear'~well although i have not seen my doctor recently and will avoid doing so for as long as possible i have self diagnosed myself with osteoarthritis (OA)~not hard to do if you can see my fingers! over the last 8 months or so i have had the classic lumps develop on some of my fingers and have all the pain in the usual places that have movement.
the combined pain of this and my fibro means that anything involving my hands/arms are becoming more difficult for me and i have even bought a kindle~something i avoided for ages~but holding big books (all my books are lovely big books!) as holding books are now so painful as is any small tasks.

my feet are affected and when the pain hits it is along the joints of my toes so walking is difficult.

i admit that writing this is making me feel a little sorry for myself~only a smidge~but i think we can all allow ourselves this feeling now and then. generally i just carry on regardless and live with it.
i am lucky in that i do not work~my combined maladies mean that i never know what the day will bring, i wake up exhausted and in pain, sometimes with blazing migraine. 
not knowing how i will be hour to hour makes life difficult to plan and some days~like today~i had to say no to a trip into Lymington. i didn't have the energy to even get out of my pyjamas and too much pain to do anything.
i guage my pain on what pain medication  take~today is a three gabapentin and a diclofenac type of day. i rarely take more than two gabapentin as it makes me dizzy but today is a three day.
i also spent the morning with a heated neck pillow around my neck~to be honest i am not sure if this is a fibro pain or the OA although when i move my neck it crackles like plastic wrapping which i think must be crepitus.

on that note i shall leave you now~my fingers are hurting and i need  my neck pilow re-heated!

Thursday, 14 March 2013


after tests for assorted arthritis my gp has concluded that the awful pain i have in all my joints for months and months is a severe fibro flare up...plus i had a lecture about my management of my diabetes
so i just have to ride through it.
but its hard to not dwell and have a moan about it~every single joint in my body is painful...even the small action of squeezing my toothpast tube hurts.
of course typing this hurts but if i dont do something i will go stark raving mad.
but it has made me think about my life, what i do, what i don't do, how to make it better
and importantly what i want from it...
those idiots at atos sent me another form with the potential to attend one of their 'medicals' despite only having to go through it  a year ago, so i have the anxiety of that on top of everything else.
but you know what?
i am not going to let them get to me or ruin my life.
if they do not consider me to be so ill i shall fight them.
i know i am ill, i know what i have and i will not let some IT company tell me otherwise.

Monday, 11 June 2012

~the lurgy~

goddess have i been poorly

since the begining of the year i have had two virus's~the present one has been loitering now for about 6 weeks and i have had two courses of antibiotics.


i think its time to go back to the doctor and see whats going on as today i feel dreadful and have a minor, niggly pain in my ear.

of course this all has a knock-on effect with my m.e and fibro, so today could well be part of that but the constant coughing and sore throat is getitng me down somewhat.


things here are a bit of a struggle to be honest~with swampy and the pain and nerve damage to his back and me with my assorted problems means we have to support each other and the general day to day things such as cooking, cleaning, clothes washing etc are shared out and done during the 'good' part of the day.
although of course there are days when one or t'other of us can do very little.

life has become a constant chain of compromise for both of us, although i think i am slightly better than swampy at it~but then i have had problems for longer.

so what do i compromise?

well say shopping day...on shopping day i do little else but go shopping with swampy.
call me crazy but i like to go as it is sometimes the only day i go anywhere that is not just for a short walk with swampy and flynt.
when we go shopping i get to have a nice ride out in Pretty Pagan, stopping off at the farm shop to look at the plants and buy our veg, eggs, bird food etc.

because i know shopping day wipes me out i make sure i do nothing else.

at home if i get the vacuum out then i have to rest after, the same if i wash up, hang out washing, tidy up

everything is about



Thursday, 15 March 2012


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...


still on i plod!

Tuesday, 20 September 2011

~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'

~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~

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

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

Saturday, 18 June 2011


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

Sunday, 29 May 2011

~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


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!

"We must protect the forests for our children, grandchildren and children yet to be born. We must protect the forests for those whoQwatsinas, Nuxalk Nation

M.E/CFS Disability Scale

% Fit and well for at least the past three months. No symptoms at rest or following activity. Capable of full-time employment.
10% Generally well. No symptoms at rest. Occasional mild symptoms may follow activity. Capable of most forms of full-time employment.
20% Occasional mild symptoms at rest. More noticeable symptoms following activity. Some restriction of capabilities which require physical exertion. Able to work full-time but difficulty with work that requires physical exertion.
30% Mild symptoms at rest. Limited ability to carry out some tasks which require physical exertion. May be able to work full-time.
40% Mild or moderate symptoms at rest. Variable ability to carry out tasks associated with normal daily living. Unable to work part-time in a job involving frequent physical exertion. May be able to work. May be able to work part-time in other types of employment.
50% Mild to moderate symptoms at rest. Moderate to more severe exacerbation of symptoms following physical and/or mental exertion. Unable to carry out strenuous physical tasks. Able to perform light duties or desk work for several hours a day, provided adequate rest periods are provided.
60% Moderate symptoms at rest. Moderate to severe symptoms following any form of physical or mental exertion. Unable to carry out strenuous duties. Able to carry out light duties/desk work for one to three hours a day, provided adequate rest periods are available. Generally not confined to the house.
70% Moderate to severe symptoms at rest. Severe symptoms follow any physical or mental activity. Able to perform desk work or light duties for one or two hours during the day. Often confined to the house and may require wheelchair assistance at times.
80% Moderate to severe symptoms at rest. May only be able to carry out a minimal range of physical activities relating to personal care (e.g. washing, bathing) frequently unable to leave the house and may be confined to a wheelchair or bed for much of the day. Unable to concentrate for more than short periods of time.
90% Severe symptoms at rest. Bedridden and housebound for much of the time. Experiences considerable difficulties with many aspects of personal care. Marked problems with mental functioning (e.g. memory, concentration). Requires a great deal of practical support.
100% Severe symptoms on a continual basis. Bedridden and incapable of living independently. Requires a great deal of practical social support.

(Extract taken from Dr Charles Sheppard's book "Living with M.E."/www.chronicfatiguesyndrome.me.uk~see my links)