Sunday, 31 January 2010


this week has been better and since fri normality is returning. no i dont me i have found a miracles cure or that im now some how fit enough to walk to the local shop.
what i mean is that the down ward spiral that has been my life since Christmas seems to be leveling out again.

unlike last weekend when an hour out left me in a collapsed heap unable to communicate properly , this weekend i was just tired and sore and after an afternoon nap i was able to get up and have tea with my family something that had started to become an occasional event.

this morning i went out on my scooter with paul and google to the park and to fetch the paper. it was lovely to be out and about. the air was crisp and the ground hard from the frost that had left the grass white. google was bouncing around like a loony enjoying his freedom and sniffing at the all the special smells that only mean anything to a dog!

we went to the local shop to get a paper and saw an old friend for a natter and a catch up which was good and felt like normal being part of the world.

something that has become increasingly rare in the last month, i did wonder if my imprison meant was self inflicted, but i didnt give my self a cold that hug around for nearly 7 weeks in total nor did i give myself M.E.yes i may have wallowed a bit in self pity but some how i dont think that it was abnormal to feel sorry for myself!

the positivity that i pride myself on has returned this week, maybe the fact that the cold has finally gone enabled me to lift the curtain and see the sun. er will soon be over and spring is on its way bringing with it its promise of warmth and blue sky's. the daffodil's have started poking through the dark brown earth that has been there bed all winter and i cant wait to see there heads dancing in the sun.

today is full of hope and optimism that's what normality is to me the dream of whats next and what might be that elusive what if and a sense of the future thats what normality is to me

Tuesday, 26 January 2010

an open letter for those that dont understand

i found this letter recenly and felt that i might be of use to those that read my blog and dont understand or are having problems with family and friends and there understanding.

it rang true to me and i hope it helps. thankyou to whoever wrote this open letter.

Having CFS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about CFS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …

… These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. CFS may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct – if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. CFS does not forgive.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with CFS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with CFS, if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. He’s open to new suggestions and is a great guy, and he takes what I say seriously.

Please understand that getting better from an illness like this can be very slow. People with CFS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you – people who are not sick – for many things.

But most importantly, I need you to understand me.

Monday, 25 January 2010

the benefit system

the benefit system is an amazing and complex thing that until we need it. we assume is there to help those in need and is missuesd by some.

haveing become a member of society that now need to use this system as im to ill to work i have learnt that this is not always the case.

in the last 18 months it has takens nearly a year to get disability living allowance to help me get the care and help i need. and longer to get a blue badge as for some unkown reason the government delcared that m.e is not enough of a reason in its self for a person to need a blue badge!

while that was difficult and time consuming and stressful nothing compares with employment and support allowance which is the benifit for those of us to ill to work.

to get this benefit you have either had to make enough national insurace contributions or be on a sufficiently low income that you would require income support.

when you apply you will intitally be put in the assesment phase for 12 weeks while you wait to have a medical to determin if there is some kind of work that you can do. the medical for some unknown reason looks at what you can do not not at how ill you are or the consequences of doing that activity on you subsiquent health.

the medical will most probably be carried out bu a dr who is not english and has some difficulty with the english language as atos often contract out to dutch and german medical proffesionals. this as you would anticipate leads to a lot of misunderstanding and often a report that is pure fiction and does not relate to the individual that was interviewed.

once if you are lucky enough to get the 15 points or more that you need to be able to continue your claim you will be placed in either the work focused group aimed at getting you back to work or the support group for those who are very ill.

considering that acording to my consultant my activity levels are at 15% of normal i assumed that i was very ill and therfor would be in the suport group. but know this was not the case i was placed in the work focused group and had to attend interviews with and adviser designed to help me prepare for work. i attend as required and then take weks to recover intime for me to attend again. i now have to go through another medical after only 6 months as aprently having m.e ment i should be fit for work in 6 months!

this aprently is part of the new format fot this type of benefit you can be called for a medical any where for 6 weekly to 2 yearly depending on the drs deciosion.

as those that have m.e are aware and those that care for will know stress of any kind causes relapses and slows reovery if a recovery is obtainable.

so in there wisdom the government have designed a benifit that persicutes and stresses out those of us that are to ill to work. i wish i could say that i was one of the few that have had this experiance but from the forums i am part of and the individuals i have spoke to i have gotten away lightly as many are turned down and have no where to turn to they are left without anything.

this is beyond me as we are suposed to care for the less well of in our community but this benefit is making it difficult for that to happen. so much for a caring society.


yesterday i was chatting to an old work collegue who thought i had resigned from my job because i was unhappy. if only that was the truth why do roumors persist especially when no one has ever asked me! i left work in september 09 to go on long term sick which i am still on i hasten to add employed by the same people that have spread the roumor that i had resigned. i did not leave through choice because i was unhappy, i left because was to ill to continue. yes i was unhappy leading up to the point where i was forced into going sick by my gp and consultant. i loved my job and was scared rigid over what was happeing to me. i felt so ill all the time unable to work out what was happeing work was becoming increasingly diffcult to manage. and im sad to say the support that i though i would have had was not there i was disiplined for being off sick, i had resposibilites take off me as i was told you are no longer coping, and was cornered in coridors and offices and asked what was wrong was i depressed what was upsetting me. i kept saying nothing is upsetting me other than i feel so ill and i dont know why. then the final straw hi i lost my voice for 6 months. i continued to struggle into work and the support i got from collegues and managers dwindled to nothing i felt like i was going nuts.

as we returned to work after the summer hols i was still struggling and at the same time found 2 large breast lumps and was refered to the breast clinic for biopsys and then lumpectomy within a 4 week period. all of a sudden i was so ill i couldnt think or function. work recived the letters from the consultant and from the gp and a copy of the medical report from the m.e clinic saying what was wrong.

so why have they persisited with this lie that i resigned i am still technically employed as they have not yet dissmissed me through ill health al though the process has been ongoing scince july.

why have none of my collegues visited or rang, why have none of my immediate maagers bothered to find out whats going on. am i such an embarassment that there employee has m.e, or is it that they now feel guilty for there lack of support and knowledge about what was going on.

a chance encounter on face book yesterday brought all my distress and anger at how i was treated and how i am being treated still to the front of my mind.

one of my managers was suposed to be a friend not just my friend but a family friend we went on holidays together, ate at each others houses and spent most weekends doing someting as a family with each other. but the day i handed in a sick note for 3 months that said M.E/CFS she disapeared. i was dumped like an old pair of shoes that were once your favorited but were now to worn and broken to wear again.

i know m.e is hard to understand i find it hard but i exspect better from my friend and an employer who were all suposed to be caring and educated as teachers.

why me? why do they lie? why am i ignored? and why M.E?

Friday, 22 January 2010

my husband

my hubby is an amazing man. he is my best friend the love of my life, my partner and my carer.

when we said out wedding vows over 20 years ago for richer and poorer in sickness and health, to love and hold neither of us could have forsworn what that would really mean to us.

in the 20 years we have had many adventure some were fun and others not but they have all brought us closer together. we lost our house in the 90's when interest rates when barmey and we had two small children and no matter how many hours we worked the bills were more than we could ever have imagined. thankfully with help and support from family we weathered the storm and our family remained intact.

we coped when hubby injured his back and was off work for long periods of time. we had an amazing adventure when we drove to my brothers wedding in Austria and spent 3 weeks exploring Germany and France. we have had fun camping in the rain and sun, both as a family and as a couple. we have laughed and cried together as life has passed us by standing side by side.

but now my wonderful man stand tall on his own while i sit on my scooter still at his side but now needing the care. we are still a team standing against the world only i no longer fight at his side but follow slowly behind.

every day he helps me cope with the changes that have happened. never has he complained at the extra he now has to do. while he cares for me and make sure that i have all i need not once has he taken away my sense of independence. i feel loved and cared for every day. we still laugh but our adventures are smaller and quieter. now the challenges are related to every day life and just managing. our dreams have changed but they still have the same theme of togetherness.

with out him as my guiding light im sure i would have sunk into the darkness that so often accompanies this horrible illness. not only has my life changed but his has beyond recognition his evenings are spent alone while i sleep, he has to cook most nights, and spends his weekends cleaning the house. he brings me a drink when ever i need one, he lifts my scooter in and out the car and take me where ever i need or want to go.

he is my best friend and i feel honored to call him my hubby. thank you love for all that you do.xx

Wednesday, 20 January 2010

foggy friends?

where would i be now if i had not found this amazing web site and chat room for those of us with m.e and their carers, family and friends. this web site connects me to others who are suffering as am i some worse then me other not so bad but each of us is struggling in our own way with the cruelty of m.e/cfs and or fibromyalgia.

i meet my friends daily in the chat room people who for the most part i have never met, but they without question judgement or comment offer support and friendship. the strange this is that we don't spend all day discussing how bad we feel though we share our ills and moan at times, for the most part we laugh and joke and talk about life giving one another support in our hour of need.

each day as i log on im grateful for the company as it stops me concentrating on how i feel and its a welcome distraction, foggy friends has given me a sense of purpose because as much as they support me i am able to do the same offer a caring word, a cyber hug or just an ear on the days where some one needs to vent the frustration and worry that builds in us all like a volcano ready to erupt. i am able to use the skills that i learnt from nursing and teaching and apply them to help those i meet in chat.

a day will not go past where someone does not ask if im ok and how the family is, what is google doing or what im having for tea, this may be mundane and boring but its the sort of contact that you have each day in the work place and take for granted, the laugh over a daft joke, the comment on the weather, and what you are planning to do next. this was all taken from me the day i became housebound and to ill to go to work and participate in life as an active member.

now my life is active in a different way, its hard to hold a conversation for a long time as i get tired and loose concentration but in chat that is not a problem as what was said is there in black and white for me to read as many times as i need to!
i can take my time to answer and no one criticise as they are all having similar probs.

my wonderful foggy friends have given me a purpose and help give me meaning, they have filled the gap of friends and work colleagues who abandoned me when i became ill.
the best thing is the lack of judgement they don't care if im dressed and have my makeup on, they are not bothered if get something wrong they just care about who i am now and give me unconditional support in much the same way as my family have and the few true friends who have stayed with us.

it may seem strange to you that a web site and people i have never met can mean so much, but they have welcomed me into their community with open arms and given me a place to feel needed and useful something that is so necessity to our sense of self.

Monday, 18 January 2010

life is passing me by!

i spend my days sitting in my chair looking out the window watching the time pass as the season changes. once i was an active p0articipant living in the real world busy with family, friends and work. now my days are spent at home some alone and some with family and occasionally with friends though those days are few and far between now.
my parents and hubby worry that im may be lonely but its hard to explain that even when im surrounded by people i don't feel part of not even a observer in the true meaning.
i don't participate not by choice but more by circumstance, M.E has stolen my ability to concentrate in so many ways to talk on the phone is no longer fun, i cant sit in a room full of people and listen to and join in the conversation. to hold a conversation some days is hard work as i struggle to focus.

to watch a film can be exhausting, the sad thing is it is now easier to talk online as i can take time to answer and no one notices!

on good days i get to go out for a bit to spend time with my hubby or parents and chat for a while about nothing, i dont really have a lot to share anymore as im not part of the real world, i dont work or go out on my own so have no funny stories to share.

i miss being a grown up as i seem to have become a child again that needs caring for. gone is the independent self assured woman that i was. i can no longer go out on my own not through choice but by necessity i can no longer drive as just the activity of getting somewhere is exhausting, i cant lift my scooter in and out of the car and since i cant walk any distance there would be no point.

i miss my life and would like it back. i dont want to sit and watch it go by so if you have any spare energy please can you send it to me so i can start to be part of life again!!

Saturday, 16 January 2010

my constant companion

my constant companion these days is my dog google. no matter where i go or what i do he is there from when i wake in the morning with him sat on my chest pink tongue hanging out shiny brown eyes excited that im awake. he follows me to the bathroom waiting while i bath and nudging me if im in there to long. he brings me my slippers after he has shaken them to make sure they are safe and dances around me in glee as i head to the stair lift which he races to the bottom wining ever time his tail wagging like a flag.

he enjoys his cup of tea sharing it with his best friend the cat mac as they guzzel away i prepare my breakfast to share with google. his big brown eyes melt into mine compelling me to share whatever im eating.

he lays on feet as i sit in my chair, he tells me when some one is at the door bouncing up and down like he is on springs and barking at who ever is there telling them to wait she is coming as he dashes back and forth checking up on my progress. as i chat to him he cocks his head on one side as though he is listening to every word and then come up for a cuddle.

on the days that are nice and we feel up to going out we get out our transport and he sits on the foot plate of my mobility scooter like royalty his ears flapping in the breeze and pink tongue hanging out his tail wagging. a definite smile on his face as i stop to let him off and run free in the park, he runs rings around me yapping excitedly.

after tea as i move to go upstairs he rushes to get on the bed before me, never mind if he has been fed or not he will stay with me snoring next to me until morning he will check me each time i move looking at me with those big brown eyes making sure im ok.

with out my constant companion my days would be long. thank goodness for google.Photobucket

Wednesday, 13 January 2010

good day are few and far between!

yesterday was one of those rare and beautiful days where you wake up and know that you are feeling good. you can move about without doing impressions of the hunch back of notre dam! the nausia and headache that acompany getting up is not there and you feel happy.

yesterday was one of those days a day where you remember what it is like to well. it was wondeful, i went shopping with my mum on my scooter and then back to theres for lunch and cooked tea in the evening it ma not seem like much but to me it was the equivilant of running a marathon.

but as i expected i awoke this morning back to normal feeling as thouh i had not slept everything hurting and the nausea was back to keep me company!

its hard to decide if good days are realy good or just cruel days that remind you of what once was!
but then maybe they come just as you need them to remind you of why you are resting and taking the meds and using the stair lift. so that you can cope with the devastating affects of this disease yesterday was most welcome it gave my dad hope to see me having a good day, it made me remember that not every day is bad. so maybe it was a good day after all, i just am not sure i like the price i have to pay for it!!

Saturday, 9 January 2010

its no joke!

My forgetter's getting better,
But my rememberer is broke
To you that may seem funny
But, to me, that is no joke

For when I'm 'here' I'm wondering
If I really should be 'there'
And, when I try to think it through,
I haven't got a prayer!

Oft times I walk into a room,
Say 'what am I here for?'
I wrack my brain, but all in vain!
A zero, is my score.

At times I put something away
Where it is safe, but, Gee!
The person it is safest from
Is, generally, me!

When shopping I may see someone,
Say 'Hi' and have a chat,
Then, when the person walks away
I ask myself, 'who the heck was that?

Yes, my forgetter's getting better
While my rememberer is broke,
And it's driving me plumb crazy
And that isn't any joke.

this was sent to me as an email by ma dad it is so true at 41 my rememberer is definitely broke.
while this poem is funny and light hearted it carries a disturbing truth about M.E
and how the cognitive dysfunction that we experience is not a joke but a real and disturbing part of this terrifying neurological illness that seems to be the but of every joke and scam artist. it would appear that yet again M.E is in the news and we become the lazy, its ok to run a poll on a nation wide news papers web site to ask is M.E real or not would we do this for lupus, MS, Parkinson's or any other immune or neurological disease! just because they have not found the cause does not mean that this illness is not real and devastating to those of us that have it and to our families. HIV did not exist till they found the virus! rather then asking is it real surely the question should be what is being done to find the cause!!!

Tuesday, 5 January 2010

a day im life!

this morning when i woke up i had a headache and felt tired and wobbly, the pains that are a permanent part of my life greeted me as i moved, like fireworks going off and spreading heat through out my back and legs in burning spirals of white hot pain. my mouth feels like i have been on a binge last night but i know that i had none of the fun.

it takes me a while to wash a dress and then i get to glide down the stairs on my stair lift as i cant afford to waste my precious energy on trying to walk them. i take my time getting my breakfast, plan my activities for the day, the first pills of the day are taken its like a handful of multi colored sweets except that they taste
horrible. thats the first 12 of 32 i take daily!

i put the ingredients in the bread maker, and find what we are going to have for tea out of the freezer. this leaves me breathless and dizzy i have to rest, i put my feet up and look out the window watching the birds on the feeder. after 20 mins i start to feel more normal.

i then go back to the kitchen and start to prepare the evening meal i sit on the perch stool and chop veg a job that used to take me 10 mins at most now take me half an hour.with dinner prepared i now go back and sit down i turn on my computer and spend some time chatting online to other m.e sufferers. i watch the birds out the window and talk to google i take another 6 pills with mylunch . i lay down for a bit as i start to feel worse and what little energy i have is disappearing quickly, i sleep, the day disappears, and all of a sudden my hubby is up and its time to cook tea,

i eat with the family and take a futher 8 pills, then go to bed as i no longer have the energy to support my body although my brain still works i chat on my computer laid on my back with google laid next to me. at 10 pm i take the last 6 pills and hope that i will sleep the night through. but as normal i wake each time i move i moan and swear in my sleep as i grimace in pain, this is just an average day not a bad day.

how do i explain how i feel imagine having ran up a mountain, with lead weights on you legs and arms, having a tummy bug that turns your insides to water, the worst hangover you have ever had and you have got flue and a migraine all at the same time then add in the fear of not being able to control whats happening to you, the loneliness and sadness as everything you know and have worked for that you think defines you disappears, and know that you might never get any better!

my days though are not full of anguish they are full of light and hope as i feel pride in the small things i achieve, i am not lonely as i am never alone, but i do get frightened about what my illness is doing to my family. i see my pain in my husbands eyes, and the worry for the future im my children faces, i see fear in my parents faces as they wonder and worry about what is happening and what they can do.

i see confusion and lack of understanding in the eyes of my doctors, and here frustration in the voices of fellow sufferers that like me cant explain and dont understand why no one can help us

Sunday, 3 January 2010


well i wonder what surprises this year will hold for me and the family! will the miracle of health be returned! there is as always hope that this year will be different and better, however i have learnt over the last year if this is not the case my life will not end nor will my family fall apart but we will carry on finding laughter and tears as we travel through yet another year.

new years eve this year was great i got to spend it with my hubby and some very special friends and made it to midnight. we played poker and laughed and celebrated the new year. it was good to feel normal even if at 12.10 i had to be helped across the road and put to bed like a small child passed there bed time.

new years resolutions i have made are to enjoy what i can do and plan to have fun. to rest without guilt and take offers of help graciously. two years i have been ill and while i dont like it there have been good things that have come from this, i have a closer and stronger relationship with my hubby, my children have grown in to caring helpful individuals who are aware of others needs, i have learnt who my real friends are and what friendship means. most of all i have learnt that the word family is to be cherished and loved.

it has been a long journey to acceptance an i cant say that im at the end of my travels yet but i feel that the first mountain has been conquered and i was not alone when i reached the sumit but surrounded by my family and friends. along the way some fell and others have taken there place and each and every one has given me something to help me cope.

my life is simpler now no running from one hectic job to the next no competing in the work place or to be the perfect housewife, now i get to watch and savor the moments that i missed by being so busy that life was passing me by.

i hope that 2010 will bring more peace and acceptance by others to what m.e is and means to those that suffer and there families, that with luck the medical profession will recognize it for what it is a debilitating life altering chronic disease. the problem is not the disease but how we are treated by those with out understanding i would not wish this illness on any one, i would though appreciate it if someone could say i get it i understand what you are saying.

Friday, 1 January 2010

christmas 2009

i was dreading christmas my second with m.e i know by comparison to many that is not a lot but to me it was a stark reminder of how much things have changed. 2008 found me saying that next month i will be better and able to go back to work. during 2009 i realized that it was no more than a dream.

christmas was the time that my mobility became an issue and my illness when from being a nuisance to a serious issue and that has not changed over the last year. 2009 has seen more health issues arrive and more things to learn to cope with.

christmas was yet one more thing to learn to cope with, i had to watch my family running around doing all the stuff that i have done for years, i sat there at the table watching them carve the turkey and pull the roast veg out of the oven. and serve me. while i sat at the table doing nothing to help. the guilt was horrendous, lt was like i was letting them all down, i know that this was not the case i was proud that my daughter and husband could cook and amazing christmas dinner but was sad that i could not do that. the day was wonderful and magical just like christmas should be.