all i want for christmas...

all i want for christmas is one day where i feel well enough to truly enjoy the day for what it is. to be able to laugh and giggle with my family without having to wear a mask to hide how a really feel is all i want. one day not much to ask is it one day without pain and fatigue so consuming that thinking is hard work! one day where i could be me the me before i became this ill person that everyone has to look after.

i hate what i have become this Dependant useless individual that needs to be taken every where that cant even clean her own house or cook for her family without feeling like crap.

in reality i know im lucky im not as bad as a lot of people with m.e but i also know that a lot of people out there are better off than me, i try not to get angry at the world for being like this but same days that is very very hard to do. i know im lucky that my family are fantastic and are there to help me at every turn but all i feel is guilt at watching them having to do stuff that i know i should be doing its my job as mum, wife and daughter to be caring for my family. but its a job im failing at miserably.

if i sit in my chair long enough i can fool myself that im ok till i have to get up and move then there is no fooling anyone!

i wish i could buy a present that said how much i value them or a card that could say all the word of love and gratitude i feel but alas none do.

so please for christmas can i have one day where i can do all the stuff my family deserves please only one day...

why me? why M.E?

this is a question that i often ask why me? why my life?

the problem is there are no answers. i have no idea if this is a punishment for something that i did in my past that i cant even remember. i would hate to think that im being punished for something i dont know about cos if i did then fine i deserve what ever but if not then why me what did i do to end up like this!

but more to the point what did my family do to have to suffer alongside me to watch my pain and my forgetfulness, to have to share my broken half life existence.

why my life? why was i stopped just as i was getting it together and heading out to a worthwhile career that would have helped my family financially.

why am i now living a strange half existence on the edge of the life not fully able to participate any longer. im broken but no one seems to know how to fix me there are no new parts, or magic pills, they cant even say that in time it will change they dont know!

i hate feeling so useless and dependent, the fear of being left behind as i cant keep up is more than i can bare some days, i was an independent strong woman with a direction in life and goals, now thats all a distant dream one that i can no longer participate in or hope to take part in.

why me? why M.E? why?

payback

payback is one of the most cruel aspects of this illness any time you do anything thats off routine even if you have prepared for it you are punished by an exacerbation of symptoms this does not happen the next day but 2 days later and will last as long as it pleases so every bit of fun that you have is payed for twice over!

as you will know from my blog i went out on sat and had a great time, but what you dont know it how much prep went in to going and what the payment for having fun has been.

to prepare for my fab night out the week before i restricted my activities and stayed in no outings on my scooter! no trying to do more than i should i paced my activities carefully and included more rest periods in my week (rest in pacing means doing nothing not tv no reading no noise just laying down doing nothing) and doing that allowed me to stay up passed my bed time (7pm ish) to spend time with friends having lots of fun.

how ever even though i had been good and saved up my energy for the outing i still used more than i had so here comes the payback, it did not start till Sunday evening and by then i was finding it hard to follow a conversation. the pain that i have had doubled and the fatigue was such that i could not sleep! this may sound strange that i was so tired i could not sleep but this is common with m.e and until you realize that it takes energy to sleep and i have none left at all its a hard thing to get your head round. monday i spent the day in a daze and by lunch time was in bed again unable to cope. by tea time i took a sleeping pill in the hope that i would at least get some sleep even if its chemically induced but it took another 6 hours for that to happen during which point i got so confused i could not remember where my hubby was or hole a conversation with my mum when she rang. i woke on tuesday morning feeling like i had a god almighty hangover and spent the morning sat in my chair staring out in to space thank goodness for the internet as by lunch i was feeling sorry for my self and i needed company which is not easy when you are stuck indoors and everyone is at work. so foggies to the rescue! the tesco man came they are so good and he unloaded it all for me into the kitchen separating the frozen and fridge from the rest. it took me 2 hours to put the shopping away which i had no quite finished when hubby got up and found me asleep on the sofa!

so here i am wednesday and other than the pain i have my brain back and am back at status quo


i tried to describe the fatigue to my gp once and its sort of like trying to walk through a swimming pool full of treacle with lead weights attached to your limbs and a rope tied to your waist that is pulling you backwards, ans trying to think is like driving on one of those very foggy mornings where you cant see the road and there are no lights in front of you to follow as you crawl along unsure or where you are or how much further you have to go!

the pain when i tried to explain that is difficult as i have tow types the all encompassing ache that you get after you have done some sort of different exercise is there all the time it is deep in the bone constant it doe not come is waves but floods my my body like the cold does on a winter day. but for me it is accompanied by something that is harder to deal with i have sharp searing pains in my neck shoulders ribs lower back and hips that feel like i have been stung hundreds of times in the same spot when i stand hot searing pain shoots up my legs like fireworks spraying out into the night sky. leaving me gasping the pain causes my muscles to spasm restricting movement and causing more pain.

these are my companions on the days of payback and these are the things that pacing is supposed to help with, if you get it right there should be no change in your symptoms they should remain constant and yes they do the only problem is how do you cope with getting up at 8am sitting in your chair knowing that you can go on the computer for a couple of hours, maybe dust the lounge and help prepare the veg and thats it till you got to bed at 7pm every day, if you have a bath then you wont be able to help with dinner, every thing becomes a trade off. this does not allow for fun or the trips to the dr or just going out to be part of the world, no it allows you live on the edge never part of it watching everyone else running around while your life grounds to a halt.

so every now and then no matter what the cost i decide to live, to go out and be part of the real world and sod the payback!!!

i went out like a grown up!

last night for the first time in months i went out in the evening for a meal, a grown meal at a grown up time with adults. it was fantastic to spend time with my friends and my husband i had an amazing meal, and would recommend going to Chesters in market deeping to any one living near by.

i was able to stop till the end not having to make excuses to leave early, thanks to the pain killers and a fab husband i only needed my stick as well so it really helped my self esteem and cos everyone knows me no one asked how i was feeling or what i was getting up now days thay just all welcomed me as though they spoke to me every day making me feel normal.

this morning im tired and a bit shakey i hurt a bit but i know it will get worse but it will be worth every moment because last night made me feel like part of the world again.

i laughed and giggled with my friends i felt like my old self for just a few hours no one made me feel ill or looked at me as though i was broken, and yes i paced all week i rested being carefull not to do to much yesterday i got up late, and then went back to bed in the afternoon to rest again, yes i had pain but none of that mattered because last night i felt normal for a few hours!

burocracy

it makes me so cross the hassle that the government put its ill and disabled voter through to get the help that they need.

it has taken a year to get disability living allowance this is because for some reason .M.E on its own is not enough of a reason you have to be so severly affected that you cant walk or look after yourself at all to qualify.
not only do thay need your statement but also from your GP and any other medical professional that you come into contact with to help prove your case and even then they can turn you down for not answering a question right or getting the date wrong. (baring in mind that those that fill these forms in are ill)

then when your pay stops you have to apply for ESA this is not only and inadequate benefit on which to support your family but also infuriatingly difficult to get. you are made to feel like you are waisting there time and are scum. you are treated as though you are an idiot and as though you have deliberately made yourself ill. the worst bit is the medical a medical that i hasten to add take no notice of your diagnosis or any medical reports you take in. they dont care about what you cant do and are only interested in what you can do and not what the effect may have on you. if you are lucky you might get a Dr that speaks english and maybe even understand a little of what you say but dont bet on it. then after the medical that makes you feel dirty and as though you are lying you have to wait for them to decide if you can have the benefit thats purpose is to help those that are to ill to go to work. your gp may be signing you off work as unfit your consultant may say that you are not fit to work. but that does not mean that you will get this benefit!!

it was determined that i was fit to attend what they call work focused interviews that are designed to get you back to work. i am still employed by my place of work and am on the long term sick, occupational health have determined that i will not be fit to work and may never be able to return to work again. but still i have to go and sit to some woman ask me what is stopping me from going to work as i sit in my wheel chair unable to walk, to cook a meal completely for my self, clean my house, and i look at her and say my health. after attending one of those meeting it take me a week to recover.

apparently having M.E and being unable to walk does not qualify me for a blue badge either as according to there rules m.e in its self is not a reason to require a blue badge no matter how sever the ilness has on your mobility.

eventually the DLA decide that i am unable to mobalize and therefor need high mobility and that the inability to cook a meal on my own means that i require low level care. because the DLA has given me high mobility i can now have the blue badge that i was already turned down for!

the best thing is that the benefit agency's do not talk to each other so one can decide that yes you are significantly disabled and the other may decide that you are fit for work!!

this is not where i intended to be i was planning on doing my teacher training and working, i had a job i had a social life i had self respect that has all disappeared due to this illness and the way that the benefit agency's treat you.

burocracy

hapiness is a good nights sleep

it amazes me how we underestimate what sleep does for us. as a young adult i regularly partied through the night and functioned on no sleep of less that 4 hours for weeks at a time as a mum i was woken frequently to care for my children with night feeds and sickness not once did i feel that i was missing something vital. when i went back to work my days were filled with activity that often meant me getting up at 5.30 to do house work before i went into work, then on top of this i decided to do a degree so this again ate into the amount of time i was able to sleep as working full time studying and looking after a house and family do not leave much time for sleep especially if like me you want to do all of them to the best of your ability!

i never really noticed the lack of sleep or how tierd i was it was just part of living now and being a woman who wanted it all. eventually it took a toll on my health till i am where i am today. now i know the importance of sleep having just spent the last two months with no more that an hour at most of uninterrupted sleep due to pain what a difference on full nights sleep can do. iver the last few weeks i have been getting grumpier and more frustrated as both the pain and the tiredness take over my life its all i could think about every movent hurt, and just staying in one position hurt to the point where i could not get comfy pain killer and sleeping pills were not making a difference as a still woke up every time i or my husband moved.

all i wanted was to sleep and to have less pain i did not even want to be pain free as that seemed like an unreal dream having lived in constant pain for the last two years. in the end after asking my gp for help i go back to my consultant and use my mum (she was a nurse at the gp practice) to come with me to get them to listen and take me seriously. yesterday i was prescribed some new meds by lunchtime i could feel the muscle spasms im my back starting to release last night i took my cocktail of sleeping and pain meds and i slept for 8 long hours of uninterrupted sleep. i have woken this morning still in pain but i feel able to cope thats what the sleep has done it has given me back the ability to cope.

sleep therefor is the rout to happiness as it gives you the ability to see the positive and cope. i can cope with the pain today and tomorrow if i get to sleep at night its not much to ask is it to sleep its all i need to make me happy !!

how?

how?

this is a question and a half, how do you feel is something im asked every day how do i answer with the truth, rarely with a standard ok that tells you nothing!

how do i cope with feeling like this? i dont know im not even sure that i am coping!

how much help do i get? my family is great but medically it is as though i have dropped in to a black whole since diagnosis!

how do i tell people what wrong when they see me sat in my scooter? this is the question i avoid, m.e isnt that just like having flue! im told oh you get better from that! and you see them look at you and decide that you are lazy!

how do i spend my day? wishing it away! no i spend my day struggling to do the odd job so my family doesn't have to and chatting to others on my computer that i have never met that have the same problem and now understand me more than i do myself some days!

and how i wish i would get better.....

aaaaaarrrrrrrrggggggg!!!

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.

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!

family

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!

autumn

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

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

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!!

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

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)
M.E
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.

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...

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...

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.

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.

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.

why?

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.

a weekend away

this weekend has been fantastic we arrived at ferry meadows Friday afternoon and found a pitch for the caravan and the sun was glorious, had a fab meal out at the havester one of those platter that you share for starter and game on and chips no pud aw was full and too hot so had to make and exit to the car so i could sit in front of the air con to cool down!

on sat morning after a breakfast of poached egg on toast i made my way toward the cafe at ferry meadows to meet some new friends off foggies. it was so good to see vera and see her looking so much more positive and i promise is wont say that she looked well as we all know how we look does not show how we feel! i also met kerry and glen from off foggies kerry was one of the first peeps to welcome me to the forum for sufferers and carers of those with M.E she made me feel so welcome and the few time i have spoken to glen online he has made me giggle with his very dry wit. i was so pleased to see tham as glen had been so poorly over the last few weeks is was good to see them out and put the names to faces, thank you both so much for coming and hope itdidnt take to much out of you glen they left us with an invite to pop in if we are ever over that way and we will take you up on that so tc and we will see you both again xx

vera came back to the caravan for a bit and we continued our gossip and she told me about a local show that she is going to where she will sell her hand made cards, if things are good ill shall pop along and see her there. mind you its not long till we are meeting again though the pacing group where we first met.

while that weekend has been amazing and i have had so much fun today is not so much fun the pain has kicked in and the fatigue is here to stop me thinking to much !! but hay it may well have been worth it

foggy...

yesterday my brain was like swiss cheese full of holes that important things kept falling through like the fact that at 4.30 i was supposed to tell my wonderful hubby to pick our daughter up after she had been to the bank cos she was worried about having that much cash on her did i tell him no did i remember not until he said Bex is running late at the point i sat there and said haven't you been and picked her up yet!!

this was just the final episode in a day fraught with mistakes and fogginess, it took me 5 hours and 4 visits to the washing machine to work out why it wasn't working after pressing all the buttons i finally noticed that i had not shut the door! i rang my dad earlier to say have a good trip and then forgot to say it!! i shut the dog in the downstairs loo by mistake then couldn't work out where he had gone! i put bread in the toaster for breakfast then had an apple and forgot i was making.

so with luck today might be better less foggy anyway was planning on going out but not sure if i would remember how to get home the way my brain has been working and mobility scooters don't come with sat nav!

one of those days!

yep its one of those days where i feel like crap but look fine to the outside world how can it be so!!

M.E is often called an invisible illness and by god so are it sufferers invisible to the world, today i woke up with a headache to rival most a sore throat, stiffness in my neck, earache, back pain, hip and knee pain, a feeling like im burning up and to top it of IBS. the hard bit is that i know as the day goes on it will get worse not better, so as you can guess i feel crap so like most peeps when they are ill i dont want to do a lot but i know this is not going away tomorrow or the next day or next week so if i stop today do i just stop altogether and give up!!

this is not an option i have learnt that i cant fight it so i have to work with it as best i can, i know that fresh air often clears my head so off i go on my scooter with the dog for 30 mins or so for some fresh air, i meet my old uni tutor who comments on how well i look and how good it is to see me out and about, i want to cry out, look woman im 41 and sat on a mobility scooter and i feel like crap, but like the polite person i am i say thank you things are going ok!!!!

is this why its invisible do we not tell people what we really feel like in case we upset them, do we hide our symptoms for fear of ridicule how many time have i been told well every one gets tired it normal to feel a bit run down when you are busy but you must give in to it. how do i tell them that im not a bit run down and im not a bit tired. how can i tell them that i spend my life feeling like im lifting lead weights on my legs and arms and trying to walk through treacle and this is a good day, how do i tell them that from one minute to the next i can forget what im doing or how to do it because the all enveloping fatigue renders my brain to mush, how do i explain that the pain in my back feels like i have been stung an hundred times by a wasp in one place then have someone poking a hot needle in it constantly, that that the pain in my hips makes me want to scream with every step i take and that my muscles protest at every movement as they cramp and spasm due to fatigue and lack of enegy, how do i tell them there is no cure and no test to tell me thats whats wrong and that is just a best guess on the part of a dr.

if i cant tell my friends and family how a feel and what this illness is doing to my body how can i ever expect anyone else to ever understand.

how do i explain that only half of the drs agree that the illness is physical not psychological in nature how do i make them believe when im as a sufferer i dont understand how or why?

the drs sit there and say well your depressed and they wonder why? all i can say is spend a week feeling like i do then be told that we dont know why, what or how to treat it but you will probably be like this for a long time some people recover but at 41 age is not on your side, how ever this is classed as a temporary illness so you may find it difficult to get any help from the government!!

i cant walk any distance with out colapsing but hey M.E does not entitle you to a blue badge!

yes you are disabled but prove it before you can get disability living allowances!

oh yes by the way your are to ill to work so we are dismissing you but dont expect to get any help from the DWP ESA is assessed on what you can do not on how ill you are or how ill the activity will make you!

no only are you now seriously ill and finding basic every day tasks hard but no one believes you at every turn you are challenged, each time you ask for help you are looked at and have to fight this invisible illness makes those of us that suffer it invisible.

the only thing that i can say is thank god for the forums like foggy friends, help with M.E ect as with out these the isolation would be unbearable. i was lucky i have a GP who believes me and was refered to M.E clinic within 6 months of becoming ill and have a complete and full diagnosis and report on my condition, many have to wait years for this. the support that i have had from them has been great and has helped me to start to cope but recovery i fear is a long ,long way away, but life is here and im determined to grab what i can with both hands no matter how hard.

an ab fab day

yesterday morning when i woke up the sun was shining and i felt good only had a few aches and pains but i was awake and not at all foggy. so in a moment of madness and excitement i suggested that hubby and i went off to the coast for the day in the spitfire (this is a classic sports car from 1963).

we packed a picnic and blanket sorted out the car and put my crutches in the boot we were ready i waved goodbye to the kids and off we went a smile from ear to ear.

we travelled from home to hunstanton and the sun shined all the way here i thought my journey would end picnic on the front and home but no hubby had other ideas.

we drove along the coast road waving at other people as we went past them in there classic cars i enjoyed looking at the scenery and the ride in the sun we stopped at morston quay for a coffee from picnic and looked out over the salt marsh and the boats and the quay its was so pretty. i sat on the grass with quite a heavy bump as i dropped the last few inches when my legs gave out but nothing was going to dampen my spirits a i rang my mum and said guess where i am and had a lovely chat hubby made me a cup of tea and i sat there enjoying looking at something different .after our drink we jumped back in the car well i sort of hobbled and slid into the seat. we carried on our way along the coast road untill we got to cromer where we stopped for cockles then drove up to felbrig hall.

at the hall we picnicked proper with making our rolls up with all the goodies we had packed sitting in the sun enjoying our beautiful surroundings. i was able to borrow a mobility scooter from the national trust so that i could go around the house and gardens the walled garden was amazing as was the plaster work on the ceilings in the house it self.

on our way home we decided to pop and see some friends and had a wonderful warm welcome which was lovely as i had not seen them in over 18 months it was a the perfect end to a fab day. i slept on and off in the car on the way home and needed help to bed but now sat here feeling yuck i have this memory of a perfect day out just what you need to carry you through the bad days.

thanks to hubby for the great day xxxxx

slow day

to day is a slow day full of the wrong words and half finished sentences, i have had my family in stitches with the new sayings and the order that i use words when grappling with my foggy brain for example my son was winding me up and i said to him to stop and that my patience is not very long today as i could not remember the word short for the life of me.

i apparently also have a new habit of stopping halfway through a sentence and switching off like a dodgey radio totally unaware of what is happening around me until the world comes back into focus.

but hey if it makes us laugh it cant be a bad thing, this morning i have dusted the whole of down stairs yay but in my excitement i forgot to do one room at a time and rest in between so well yeh bet you guessed i got a quick reminder from the M.E that i should pace as i became the colour of our hall walls (a strange sort of very milky coffee colour) and went all hot and dizzy so i am now sat in my chair with my feet up and the fan on sill girl i do know better but like always what we know and what we do dont always match!

its will be strange as my parent fly off to see my brother for a month again on Thursday so i shan't be zipping off to deeping for a while as i have no halfway stop for a bit. talking of scooters i love my mobility scooters the decision to get one was one of the hardest and i felt like i was giving up an accepting that i was broken beyond repair i was not old enough at 40 to be sitting in what i classed as a granny mobile (sorry folks). but after collapsing and rendering myself useless after a trip to the supermarket i made the decision to borrow one from shopmobility and wow freedom i had forgotten how much i could not do because walking had become so hard.

so off we went to look for a sporty looking scooter that would do it all little did i know that the world of mobility scooters is complex and exspensive!! but after a good search a test drives we came home will a deal that we thought was great a class 3 scooter for round the village and and a small boot scooter for shopping and days out. i have not looked back the fun and freedom that these have given me has turned my life fom being totally Dependant on others to having enough independence to still feel like i am me.

mind you i do meet a few unhelpful ignorant peeps that walk past me and bash me with their hand bags as though im not there or ignore me as if im no longer worthy of there attention but for the most part they are far and few between. Google (my dog) and i spend many happy hours speeding round the village and local footpaths he loves riding in the basket with his ears flapping in the breeze and his big pink tongue hanging out so if you see a mad woman on a blue scooter stop and say hi it could be me!!

today is a yay day

well i missed yesterday as i slept through it but that has brought its own benefits in that today has been fab.


hubby and i went out for lunch at a local pub and i had a very nice baguette with bacon chicken and cheese and chips which i really enjoyed hubby had the loin of pork version with apple sauce which i have to say tasted good to.

its strange how we manage to really talk when we go out like that not the usual day to day stuff that happens but talk about the big stuff. feeling about whats been going on what we would like to do our ideas for the future. It may be strange but in some ways my being ill has been a blessing yes i did say blessing. it has given us time to stop and take a hard look at our life and where it was going and i can honestly say i dont think that in some ways it was a good place we were heading to. we are definitely closer than we were and that is all down to the M.E so its something i have become quite greatfull for. we had started to live parell lives in the same house working opposite shifts each contained in our own little world of what we had to do only coming together to talk about what the kids were doing or what jobs needed to be done running from one thing to the next never stopping to look and appreciate what we had.

now life has taken on new meaning enjoyment comes in time spent together and sharing simple things, no longer is there a need to have every thing but rather a lets see what tomorrow brings and enjoy what we have today.

friends that we thought were important and seemed central to our lives disappeared as though we were infectious and now damaging to there lives and so we were no longer included. work colleges disappeared into a dim and distant fog never to clear, as i drifted further from there world. but during all of this not once did my faith in my family waver and those individuals that i now count as true friends showed there worth including us in there life and making us part of there world they adapted times and venues so that i could access them there was no critical comment made if i needed to leave early but rather a cheer that i had come in the first place. these people i now class as my friends some i have found through talking on a specialize forum others were always there but in my rush to live the life i thought i should have i did not notice or value them some i have made since i have been ill and they just accept me for me no questions.

i have found that i value simple things like a blue sky watching the chickens in the garden seeing the butterfly's dance around the flowers, the smell of the grass as its been cut, watching my children grow in to independent young adults. but most of all i value my hubby who has become my rock my foundation in a life thats ever changing.

i am blessed because i have people who love me, and i know a lot of people with M.E struggle on there own with out support my heart goes out to them.

10.50

tonight it would seem is going to be long and give me lots of time to think!!

my wonderful hubby helped me up to Bed at 6.20 via the stair lift as i was so very very tired that i could not manage to stand properly. thank god for my stair lift (it is no ordinary stair lift this is a very specially installed by father and son bargain. after watching me struggle up the stairs hubby went shopping on eBay for a stair lift after we found out that a new one was going to cost us over £2000 to be installed. after a lot of looking hubby found one not to far from us in Leicester that was worth taking a chance on he bid the £40 that they had been averaging and was excited to find he won the auction. the auction was won for the sum of 99p yep yo read it right 99p my hubby brought me a stair lift for 99p. it took him and my son three days to fit and get it working and it had been the best eBay purchase ever).

Well im still laying here awake google is snoring, hubby is at work and the kids are fasto. nights like this give me time to think which is not always a good idea as it has a tendancy to remind me of what i can no longer do due to the m.e

some of you wont know what M.E is or what it really means to a person who has it. so ill try to explain what it is like for me.

in general i feel like i have flue every day, my joints ache, my eyes hurt i have a headache and a permanent sore throat. on top of that i get up in the morning feeling as though i have already done a days heavy manual work and only continue to feel more fatigued as the day goes on, the fatigue brings muscle pain similar to the pain you get when you have run a marathon and ran out of energy, the lack of strength in my muscles
means that i wobble when i walk and find it hard to support my own body as well struggling to walk. along with this i have IBS, blurred vision, and a tendacy to forget things and get easily confused (foggyness)

M.E is classified by the world health organization as a neurological illness http://www.ahummingbirdsguide.com/
this web site explains it so well i thought i would put the link here for you to get more info.
http://www.sleepydust.net/me-cfs-chronic-fatigue-syndrome-video.html?utm_source=sd-net-homepage&utm_medium=right-column&utm_content=free-mecfs-video&utm_campaign=link
this video also helps explain it.

however my life is not over because of this it has taught me to take things slower and to appreciate the smaller things in life like watching the butterfly's dance in my garden or seeing a kingfisher as im riding along on my mobility scooter.

my new moto is to enjoy what im doing,

16/9/09

what i want to know today is who stole my energy!

i was a good girl and rested and slept all night (thanks melatonin) so why did my battery not recharge!
today i feel like im trying to walk through treacle with lead legs with some sadist putting angry wasps on my back so that im constantly being stung. so if you are the sadist please stop it you have my batteries can i have them back please!

google (my dog and constant companion http://i697.photobucket.com/albums/vv336/raesouth/animals/Image009-1.jpg ) is laid on my feet as i type this grumbling in his sleep life must be so easy to be a dog!

but i have been a good house wife and done a job this morning i have made chutney from all of th tomatoes
that i have grown in my green house over the summer. so now the house smells great and im ready for a nap just in time for hubby getting up from bed as he is on nights.

My Story

18 months ago I was a have it all Mum. I had a full time job working in a local primary school, two fantastic kids, a great husband, I was studying for a degree in Education and was well on my way to becoming a teacher. I was busy every weekend with friends and family seemingly having a the time of life I was due to turn 40 and was looking forward to it as life just seemed to be getting better!!

Fool I here you cry no body can work full time keep house and study for a degree. You are right there was payback for burning the candle at both ends but never in my darkest dreams did I expect to be where i am today.

As normal when working with young children infections are par for the course so getting flue in march 2008 did not seem such a disaster but more part of the job so to speak. I felt awful headache, stiff joints, sore throat and high temperature this laster for a week so i thought i would go back to work. (mistake number 1)
still reeling from the flue I struggled into work (why is it you never get any thanks for this!), then within the fortnight i developed laryngitis and was off work again this time the GP signed me off for 10 days telling me that if my voice had not returned in that time i needed to go back. 10 days came and went still no voice and feeling worse by the day.

being a Mum i have a healthy sense of guilt so returned to work minus voice and struggled on i became miserable and fed up with every thing i felt so ill but could not put a finger on why. My attendance at work became sporadic and i was called in for back to work interview to see if they could help me! thats was a a laugh i couldn't even help myself. i seemed to be at the GP every week by the endof the term in july i still had not got my voice back it had been 4 months now and i was waiting to see a specialist for some investigations all the blood tests kept coming back with low calcium and raised liver function tests but they could not find a reason so i was refered to a general surgeon at the hospital that was the first time the word M.E/CFS was mentioned and he said you need to change your life and don't expect for things to improve for a number of years. **** Panic*****

i went back to my GP he felt that the 7 week summer break should help me to recover if i rested so taking his advice i did that. recover no get worse yes, i had a camera stuck down my throat to see why i still had no voice in august to be told it was due to muscle weakness and recommended speech therapy!

then in September all hell broke loose i had been at work less than a week when in a routine breast check they found 2 lumps life went on hold within three weeks i had mammogram biopsy and the lumps removed they were benign but quite large. at his point i suddenly take a nose dive and become so ill that i cant even drive without ending up collapsed in a heap, and i'm signed off work with CFS for 2 months work are not impressed, uni start asking for permission from my place of work for me to continue to study and from my GP.

in October 2008 i see DR O'Riely at the local M.E/CFS clinic and am informed that i have classic acute onset M.E and Fibromyalgia. I go home in a daze sot of glad that im not going mad but scared of what it will mean to my future is this the end of my life!!

the Muscle weakness in my legs becomes so pronounced by December that the GP refers me for more tests and an emergency consultation with a neurologist who also confirms that it classic M.E.

im now having to use crutches to mobalise and am crawling up the stairs with help from my husband each night and feel like a small child as my bedtime is now at 6.30pm as im so tired any later and i would not make it up the stairs at all. i can no longer manage to walk around the supper market and work is becoming that thing that i might go back to in the future. By the end of January 2009 i have to make a decision that for me will change how i see me. i need either a mobility scooter or a wheelchair so that i can leave the house.

By easter 2009 i have stopped saying ill go back to work next term and have started a pacing class run by the local M.E/CFS clinic i meet the first people with M.E since i became ill and come home and cry they are all mobile and some are even managing to work.

in July of 2009 work decide that i am unlike tobe able to return and Occupational health have concurred so the decision is made that im to be terminated. Now the real fun starts as we have to navigate the benefits system which seem to have its own rules and regulations and i find out that M.E on its own is not a bigh enough problem for a Blue badge! have they seen me walk!

well this brings me nearly up to today!

so my story continues ......