Monday, 28 September 2009

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

Thursday, 24 September 2009


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!

Tuesday, 22 September 2009

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.

Monday, 21 September 2009

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

Saturday, 19 September 2009

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!!

Friday, 18 September 2009

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.

Wednesday, 16 September 2009


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
this web site explains it so well i thought i would put the link here for you to get more info.
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,


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 ) 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 ......