Saturday, 31 October 2009


i didn't sleep well as every time i moves i was woken by a sharp pain then sent tremors of pain throughout my whole body causing me to cramp and shake.

i have taken the pain meds this morning but still the pain is enough to make me take a sharp breath and bring a tear to my eye.

no position is comfortable but i have put my mask on and smile to those to near me to try and hide how much i hurt but i know i dont hide it well.

Friday, 30 October 2009

a normal day!!

gosh how much would i pay to have a normal day every thing i have and all that i could borrow would probably be my answer.

to have a day totally pain free where my legs worked i didn't have a sore throat or a headache, i was not so tired that thinking was hard work and i could stay up to a normal time with out punishment. to be able to control my temperature so that after a meal i did not feel as though i had been put in the oven a baked myself!
not to have feet like blocks of ice and be out of breath walking to the kitchen, not to need my stick/crutches and o be able to drive where i like.

not to take 23 pills in a day and know that if i forget one ill know it!

what would i do with my day well this may seem strange but i would do all the things that i struggle with i would clean the house from top to bottom take my dog for a walk (not a scooter ride) mow the lawn have a chat with the neighbors go out for dinner and watch a film staying up as late as possible all the time spending the day with my family i would do as much stuff as i could for all for those that help me.

but this is a dream and not my reality.

this was the life i had and never appreciated till it was taken away i always wanted more nowi would give it all just to be able to do it all again!

Wednesday, 28 October 2009


there are days when having my family is just the greatest thing in my life the support and care that they give to me unconditionally is more that i could ever ask for.

the hardship is watching them suffer as i struggle seeing the pain that im feeling reflected in their eyes like a mirror to my own soul. seeing there distress makes me hate this illness more every day. how wonderful it would be to have fun with out consequences, to live out one of my dreams if only for a day and to share that joy will my family.

i worry that all i cause them is pain and distress as they see me fight my way through every day, more often than not its a loosing battle and i only manage to stave off inevitable for a short while before it sets up it onslaught and wins the latest battle, as yet the war still rages with neither side a winner. those that advise suggest that you learn to tame the savage beast and work with it the only problem is that feels like im giving some of my self up and becoming a hostage to this disease.

i dont know what to do for the best for me or my family so here i sit still in the middle of a war!

Monday, 26 October 2009


im sat here watching the wind blow the leaves off the trees and take them swirling around the garden. i feel like one of those trees stripped of all its glory and having something else in control of its destiny only mine is not the wind it is M.E.

what the future holds i do not know will i have my spring and recover again for a glorious summer of existence in the real world only to be dashed by yet another autumn when the wind strips my leaves or will i fine the secret or holding on a become evergreen like i was before. my greatest fear is that this shall be a permanent winter.
on from which i will never recover.

so i adjust and find other ways to hide from my autumn i borrow from the memory's of summer and plan for my spring hiding from those desolate possibility's in hope that this winter will be short. i

Saturday, 24 October 2009

a lost week

this week has been lost to anger, frustration, tears and tantrums. i have not felt so very ill for a long time not just physically but also mentally. this constant bombardment of things going wrong has taken its toll and i feel like i have lost me, that may sound like a weird statement cos im here and i can see me when i look in the mirror but the me that copes and laughs and is able to be rational and hopeful disappeared this week.

to be replaced by a person with no sense of adventure, who had lost the ability to say stuff it lets try anyway, who was sat in her chair quietly having a tantrum about being ill and crying like a 2 year old over stuff beyond her control. i had lost my hence of humor my ability to laugh at this illness and at my self i could no longer see the positives that are there but they had been hidden from my sight. all i could see was the bad, horrible, life altering effects that this illness has had all i could see is what i have lost not what i have gained.

i cant even say that i have been feeling sorry for myself because that is not it all week i have been sitting on the edge of a black hole of depression not the sort of depression when we all feel a bit sad but the clinical heart breaking depression, i know that it was chemically induced by a lack of thyroxine and having a long tern chronic illness like M.E and fibromyalgia, and i am lucky that i am already on an anti d and that they have upped the dose of thyroxine to try and stabalise the effects of not producing any.

having the flue jab this week did not help either as i alway react for 24 hours afterit so that dropped me even further, but i have to say im grateful for having a family who recognize that things were not right and have given me the time to sort my head out and have listened and not moaned or complained when i canceled our weekend away cos i could not see how i could cope.

the change started yesterday when i made a conscious decision that i did not want to be that person, it could also be the meds starting to work although to stabalise may take weeks, but this morning i feel more me than i have in a long time and though this week was hard i think i had been sitting on the edge of that black whole for a while i only realized it as others friends and family were also noticeing the change in how i was.

thankyou all for your patience and hugs they mean a lot.

ill keep fighting i wont let this win it cant take away all of me

Friday, 16 October 2009

the sun is shining so why do i feel so .....

today i have woken up with all my normal aches and pains by back and neck are already in spasm and its not 10am my legs are so shaky this morning i feel like im on the cake walk at the fair only this is not fun! my head feel like its going to explode as a tight band of pain is the only thing holding it together like a steel band on a barrel, as usual i feel sick and my stomach is churning and even though i take all my med i have visited the loo to many time this morning to count! how do i work that into the pacing! as i stand the red hot sharp pain in my knees and hips fire off like the 4th of july fireworks exploding in sharp breath taking bursts, im sat here wondering why on days like this my brain is alert and awake to be foggy today would be a godsend but that is not to be all of my senses are on overdrive.

what i need is distraction and im not sure that the computer will do that today, im pleased im off to the last of my pacing classes this afternoon at least i will be with other adults and not sat in my luxurious and beautifully appointed home that still on days like this feel more like a prison i know it does not have bars and im free to come and go but on days like this where it does not matter how much painkiller i take i still hurt so much i want to cry it is like a prison that i feel the desperate need to escape from, in reality im not running from my home or my family but trying to run from how i feel the problem is that is a constant and unrelenting companion that even my beloved dog cant chase away,

am i sad no! am i depressed no! do i want to scream and let the world know how a fell yes will it help no because no one want to listen to someone who looks normal!!

Thursday, 15 October 2009

quiet serenity

this morning as i woke up with my normal aches an pains i stood at my bedroom window looking at the world as i do most mornings ans hanging in the sky was a hot air balloon just floating peacefully in pale morning sky
the stunning red of the balloon was perfect above the green of the fields. to be floating along in such quiet serenity must be amazing.

today is not a day to rage and stamp but to contemplate and think the about the bright red spots of joy that i have in my life among the pale gray of sameness .

the good things are my fantastic husband who is always there, my children who make me smile, my most gorgeous dog who is my constant companion and his friend mac the cat who at this very moment is busy trying to get the fish paste out of the jar!

the flowers in the garden that fight against the impending gloom of winter with a glorious splash of colour.

a friend writing a comment on facebook, chatting to the people on foggy friends who are guaranteed to brighten my day, an unexpected phone call from and old and treasured friend or a new and much cherished one

going out on my scooter with google riding on the foot plate the wind blowing and feeling free. chatting to my neighbors about the weather and life.

seeing my mum and dad. and watching them laugh and joke with may family

seeing my inlaws with there new puppy billy

going away in my caravan and meeting new people who do not judge me for what i used to be

all of these are my red balloons in a pale morning sky. things that help bring balance and peace into my life
these are the things i need to hold on to like a life jacket on the stormy days when black clouds are heavy overhead and lightening is striking its fear

Wednesday, 14 October 2009

how many more things can go wrong!!

yesterday i had a phone call at lunch which in its self is not unusual until you realize it was from my gp with regard to the bloods that they had taken the day before in less that 24 hours the lab had contacted him to let me know my thyroid was no longer working effectively and i now have hypothyroidism,

now to list my full diagnosis is starting to look like a medical dictionary;

asthma,(inhalers two of)
depression (citalopram)
dysphasia (speech therapy)
esophageal reflux (omneperzole)
fibromyalgia (pain meds)
fatty liver disease
glucose intolerance (pre diabetic) (metformin)
high cholesterol (fenofibrate)
hyperthyroidism (thyroxine)
Irritable bowel syndrome (meverbevrine)
postural orthostatic tachycardia (no meds all contra indicated for asthmatics)

the amount of things wrong ad the amount of meds they are giving me i'm starting to wonder if things are breaking due to the meds now. im only 41 this kind of multiple breakdown is not supposed to happen until you are old and i mean like really old thats why geriatrics is a separate branch of medicine because of the likely hood of co morbidity of diseases, im not read for that yet.

Sunday, 11 October 2009

reality looms

there is this dark cloud that hovers over me like a storm waiting to happen its called reality and one day the enormity of what has happened will hit like a bolt of lightening and i will crumble, at the moment i get the odd drip and the occasional shower of realism but for the most part i can hide from the enormity of M.E and what it really is and it means to my life.

this is probably natures way of protecting me from the total devastation that such realism might mean.

so far for the most part im adjusting and have the perennial hope that this is only a passing thing that will go a quickly as it comes, however those showers of realism are starting to make me question this. the more i read about M.E the more the dark cloud gathers the more fear gathers, the latest research linking M.E to a retrovirus much the same as HIV and those that cause cancer has wakened that dark cloud starting it to rumble ominously as all the things that the possible cause of M.E are linked to are fatal and long term. this is not a thought im ready to deal with or consider. may are pleased that a possible cause has been found and while this is good news the prognosis may change greatly as understanding is moved forward the posiblility of that elusive whisper of hope being taken away is terrifying.

the problem is im not a scientist or a Dr and i am reading this information from the perspective of a layman trying to understand what is happening to them the discussion on the forum that i use is complex and intense as members try to understand the true meaning of the discovery and the value of it to us all.

we need funded research carried out on a large scale to find conclusive proof of what is wrong and if it can be cured that palliative care that i receive only hides the symptoms and masks the illness from the out side world it is not a cure it does not help it only hides what is happening, no wonder im still hiding from that big black cloud of realism...

Thursday, 8 October 2009

yay i slept

this may not seem like much to a lot of people but a full night of undisturbed sleep by pain is a minor miracle that i have not experienced in just over a year, what bliss i woke up feeling good, ok it did not last long and all the aches and pains are back along with the normal fatigue but for that first half and hour this morning was fab.

yesterday i spent the afternoon painting an i think the picture is now finished it has take me a few days but hey its good to be painting again i have not picked up a brush in nearly 6 years due to study or illness but this week i decided that it might do me good yeh i have dropped the brush and we now have some nice red splodges on the rug in the conservatory but hey so what im painting and its great this is the first canvas i have done is such a long time it feels so good now have to start planning the next one.

i went to the gp last night which is why a i slept it is probably more accurate to call it a drug induced stupor but hey it worked. he would not up my pain meds like i wanted as he feels im already on a very high dose hat to tell him that they dont work but they dont! so he gave me something to help me sleep through the pain it worked but i cant keep taking it as its not good for you and addictive like every thing else thay seem to give me. mind you he did write every thing down i told him and took interest in the fact that i have gone cold even my nose which is a very strange feeling.

but at the moment im rejoicing a slept all night and it was bliss...

Wednesday, 7 October 2009

a year scince diagnosis

i cant believe its a year since i was diagnosed with M.E and Fibromyalgia that also means thats its 16 months since i last worked and 20 months since i managed a full week at work!!

i can believe how long i have been ill for with no sing of improvement at all.

when i sit and think about it i wonder if i have had M.E a lot longer than we first thought and that the so called viral onset in march 2008 was just the start of the exacerbation, i have always needed more sleep than most peeps and even when i was well!! i was in bed by 9.30 most nights and up by 7am i have ibs all my adult life as well as constant sore throats and aches and pains, i have never felt completely well since they diagnosed asthma when i was 21 i have had frequent respiratory infections that have put me in hospital, i had my tonsils out and then got glandular fever so that could have been the precursor to this all but i will never know.

in the last year i have had to go through a complete life change, i am no longer independent, and have become reliant on others to take me out of visit as i can no longer drive as it not only exhausts me my sense of spatial awareness has just disappeared i cant even navigate me through my own house with out bumping into things. i am no longer an active participant in the family working and helping with the house it take me all my time to prepare a meal or dust, no more quick blitz for me simple things take a long time.

i used to spend my days surrounded by adults and children with lots of activity now i see no one other than my dog or the occasional neighbor and my family, how did this happen?

im sure my family look at me and think when will she sort herself out and get back on her feet the problem is i dont have an answer and neither does any one else. the medical profession ignore me do i get checkups like my hubby who diabetes? no! im left to it told they can do nothing but teach me how to live with it and hope, they treat the symptoms but only the ones that they think they should.

the sad thing is that im not sure that the person i used to be is here anymore i sometime feel as though all i am now is the M.E and that i have just disappeared behind a list of symptoms.

at 41 i did not expect my house to contain a stair lift, bath seats so i can get in and out have grab handles next to the loo so i can be independent and most of all that lovely thing a raised loo seat. i did not expect to be choosing a mobility scooter as my mode of transport instead of that dreamed of car. i see friends struggle to accept the equipment they see me use to get about i watch my dads face crumble as i struggle up his drive on crutches, i see the tears behind my husbands eyes as he watches me struggle to get in an out of my chair.

i didnt ask for this its not a choice any one in there right mind would make so why do we get treated like we are spongers and lazy by the dwp, why are they trying to take the benefits away that make it possible for me to have the equipment that makes my life better, why are we the disabled and ill the first to be punished financially. why do those if us with M.E have to fight for DLA as iff being ill is not enough of a problem, why are we being found fit for work under the new rules for ESA when our work places are dismissing us due to ill health and our consultants and GPs are telling us that we are not fit for work. i would love some answers to these questions so if you have any please leave a comment.

Monday, 5 October 2009

to be better or not!

how do i balance how to improve my physical health with keeping my mental health!

pacing works i know that if i reduce my activity levels and rest i do feel better but after a week i start to feel physically more able to cope but mentally in going stir crazy, if i do enough to keep me from going nuts the payback starts to get a bit more than i can physically cope with.

an hour of activity is getting to much but i need to go out and leave the house. i cant cope with being stuck in. i need to find the balance.

i cant keep feeling like im the walking dead i need to get this under control, all im doing is fighting and hiding behind a mask so that no one really knows whats going on.

the only problem is the mask is slipping more now im not sure if its because im getting worse or the reduction in the antidepressant meds, if its the latter then im no longer hiding from myself about how this illness makes me really feel. the only problem is i dont like how its making me feel, the sense of not coping and of being out of control is making me freak out.

i know i need to go and talk to the GP but im afraid of what he will say, i know that pain meds i take dont work but to admit that they are not effective is also admitting that i cant cope with the pain! how pathetic is this.

on a positive note i have a fab family a wonderful husband, i have the company of a brilliant dog google who is my constant companion and i would not want to be without.

Thursday, 1 October 2009

not so great

ill try hard not to make this into a moan fest but considering that i feel like crap m not sure if im going to manage that

for the last 3 days every time i eat i feel sick and spent a large amount of time looking at a large white bit of pottery on Tuesday night. the lack of sleep has really messed me up the pain in my back, hips and legs is unbelievable, i was in tears trying to hang the washing out as my shoulders burned, making a cup of tea has become a mamouth task. my head feels like its going to explode as the pain from this travels down my neck and into my shoulders, my eyes are so dry and gritty that they hurt as a blink but still i feel the need to carry on.


i know i need to stay in bed so why do i get up, i know i need to pace so why cant i ?

this illness is making me so very lonely even though my family is fantastic and i know im so lucky to be loved so why do i feel like no one understands, i feel like im failing i cant even manage being a housewife never mind going to work!

the days on my own are getting longer and i know i getting boring i have nothing to tell anyone because all i have done is sit in my chair or slept. i dont say how im feeling or it would seem that im always moaning.

oh for crying out loud all i wanted to do was type an entry onto this bold but i have got so hot and i am now struggling to think i really hate this illness and the lack of understanding.