Sunday, 10 October 2010

my days...

i suppose to the out side world my life must look boring and lonely, i spend most days at home, on my own as the family is at work.

i cant clean my own home or cook a meal on my own so what do i do all day!!

well i spend a lot of time on my computer talking to other people in the same boat who are ill and disabled by M.E, i laugh and joke and sympathies with this cyber friends who probably know more about how i feel than any one else. for me its safe to tell them how i feel and whats going on because they understand im not just moaning im stating fact.

the fact is that i have never felt well or not in pain for the last 3 years, my family dont want to here that every day, who would, it gets you down. but the need to tell someone is there and so my cyber friends who are all suffering the same understand when i say i feel crap, im stating a fact, not moaning and groaning but just saying how it is. i dont want to make people feel sorry for me or feel guilty cos i dont tell then. thats not the point it just helps me to tell someone who gets how i feel.

some days are spent crafting making cards for family and friends. i make jewelery for my daughter and as gifts. a couple of days are spent with my carer with whom i have a great laugh and get to go off out something i can not do on my own. i see my parents and get to spend time with them something that i would not have done if things had been different, but most of all i spend time with my dog, whi is my constant companion. and my wonderful family.

Sunday, 3 October 2010

all the fun of the fair

just recently i have been riding the M.E roller coaster with ups and downs following each other in quick and dramatic ways.

M.E is the illness that just keeps giving when you think nothing else could be thrown into the mix of symptoms that you deal with a new and confusing one turns up, leaving you wondering if its the M.E or if something else is going wrong!!

a week ago i had 24 hours where i could not sit or stand up with out severe pain in my head , nausea dizziness and a total drain of colour leaving me feeling as if i was about to collapse. this disappeared as quickly as it came leaving me feeling as i normally do im pain, and generally knackered,

so up and down i go.

Thursday, 23 September 2010


there are days like monday when i wonder if existing is living, i could not manage to sit or stand up as every time i did, my head felt like it would explode with the pain, i felt sick and dizzy, and to top it off a feeling of being completely drained of all energy.

yes i did feel sorry for myself, and no this did not help, but i suppose you need to put it into context. i have now been chronically ill for 3 years with no sign of recovery. i have deteriorated steadily from the initial onset and now am classified as severe as i am at about 10-15% on the ability scale.

3 years ago i had a full time job, a social life, i was studying at uni part time to complete my degree, my life seemed set i knew where i was going, i had plans!!!

all of that was taken away by the m.e and the fibromyalgia. but its not only my life that has had to change so had my family's,and friends though i have to say i have very few pre m.e friends left as a side effect of becoming chronically ill is dropping off the social circuit as you become unable to participate.

so the question is, is living the same as having a life?

now each day is much the same, dominated by pain and a myriad of complex symptoms causing unremitting and excruciating fatigue. the only change that i have is the fluctuation between which symptoms are taking the front seat on which day.

i now have to choose between physical health(well trying not to become worse!) or my mental health which is screaming for activity and social interaction.and the knowledge that to do something to help keep me sane will only cause a downturn in my physical health and i will be punished for the fun i have.

not only now do i have to deal with being ill but the realization that i now need help and the independence that i so cherished now is a distant memory, in some ways im lucky as social services have put that help into place to support me as best as possible so that some of the strain can be lifted off of my family. but being 42 and having a carer does not seem right, its some thing the old and disable have then i remember that im disabled, i cant not work, walk, clean my home, cook a meal. drive,shop go out with out help and on bad days personal hygiene becomes a challenge.

so yes im living i exist but who would choose my life!!

Thursday, 24 June 2010

im back!!

i havent posted for a while as things have been a we bit hetic here! first of all i have not been to good and seem to have developed an issue with staying upright as yesterday i met the floor rather to quickly for my liking both pride and body bruised but nothing broken.

my baby daughter is now 18 and i definitely was not ready for that so have been busy with pressies and party's to celebrate the huge event.i also decided the weekend before the celebration's to hold a bbq with vee for all out m.e friends that could come. it was great to see every one and chat to them all. but i really need to remember to plan my time slightly better!

i also got to meet one of my penpals who also has m.e for the first time when she and her partner came up for a visit and i have to say they were as lovely as i had hoped and we had a great weekend.

so as you can see i have been a little bit busy and have worn myself out ever so slightly though i have to say since i have been put back on citalopram as a nuroreceptor blocker it has helped a hopefully things will improve a bit as the pain is slightly more controlled.

well its time for a snooze and with luck tomorrow ill bring you all up to date on my recent holiday adventure on my scooter!!

Tuesday, 18 May 2010

card making and new people

who would have thought that winning a competition on foggy friends for some card making stuff would have developed into a whole new hobby that has changed my days.

i now read card making magazines like they are going out of fashion, egaly look at different papers and glittery bits thinking about what i could make next. today i went to my first craft class and oh what fun, i met new people who didnt judge or look at me funny, i was just another person who loved and enjoyed making cards. i chatted and laughed and played with the sticky bits. it was lovely to feel normal.


this is the sort of thing i now spend my days making


the challenge of making and completing a card gives me a sense of satisfaction that i used to get from cleaning the house or going to work, things i used to take for granted but since becoming ill have changed dramatically. i never exspeted a new hobby to help so much the only problem is that its addictive!


Monday, 10 May 2010

M.E awareness day

May the 12th is M.E and Fibromyalgia awareness day, Unlike many of the illnesses that you have herd of that ask for money into research and have big charities to raise awareness, M.E and Fibromyalgia are the poor relations. their are not the charities raising funds to help us, to find and answer to our our plight.

the M.E Association helps and trys to further the research into this disease that affects over 250,000 people in England alone. 5% of those will be totally bed bound needing constant care, 25% of those affected are considered to be severe and needing help to do daily tasks such as dressing washing or cooking, im sad to say that i fall in to this category.

the severity of M.E is often discussed in percentages this is cos we use these to gage how much energy (for want of a better explanation), we have in comparison to a healthy person who is at 100%.

imagine that your energy is no longer on tap but that each time you use some like a battery you have less left to use, and each time you recharge that battery because you have completely depleted it it take less charge so you have less energy each time.

each day i wake up i have 15% of the energy that you have the problem is if i use all of it on that day tomorrow i will have less. so i can never use all my energy in one day i have to save some of it for just in case. if i over spend then i cant recharge sleep does not make me better as i wake each day as tired as the day before, on top of this you will have numerous other symptoms caused by your body's lack of of energy, such as dizziness on standing, IBS, poor temperature control, pain and i dont mean the odd ache that you are used too, i mean constant gnawing stabbing pain that leaves you short of breath.

the sad thing about M.E is that there is no treatment, and so very little research into its cause, for a long time its been considered to be a cognitive illness that, can only be treated by CBT and GET. even those these have proved to be ineffective and in the case of GET actually making us worse. M.E has since been shown to be a physical illness, however the cause, and treatment have not yet been discovered.

so we are left untreated as the poor relations of the nhs, we are given palliative care and left to it half of us believed, half of us ignored.

so the 12th of May is M.E awareness day if you read this you have helped by just looking and listening.

M.E destroys lives in the same way as any other long term illness such as MS, and is as devastating to the sufferers and families as cancer.

Monday, 3 May 2010

my birthday

on friday i was 42 and 2 years into this awful illness, the day its self was fantastic i got cards and pressies off family and friends my favorite white chocolate cake and we went out for the day.

my mum and dad came with paul and i on our day out with dad driving first we popped in to a big garden center to have a look around where i spend some of my birthday money on bits for making cards. then we went to the tent factory to look at a new awning for our caravan that we had seen at the show earlier in the year and had been reading about online. we gpt the awning in burgundy to match the exterior stripe on the van. i cant wait to use it!

then we went off to anglsey house and gardens which is a national trust place. we had lunch in the restaurant and wandered through the gardens with me on my scooter enjoying the sunshine and the surroundings. when we got to the house we found out that the only was round the house was on foot as there were lots of steps and stairs through out the building (even though it says accessible in the book!)so i made the silly in retrospect decision to walk around with my stick. the house itself is fantastic with so much open to the public to see fantastic works of art and tapestry, pieces of furniture that in them selves were pieces of art as well as an absolutely aww inspirering library and collection of clocks that fascinated the small boy in my husband and dad.

i managed to whole house with some difficulty but a will of steel got me round and back to my scooter to continue the tour of the garden. i made myself stay awake on the car journey home as i knew that i would be worse if i slept in the car. when i got home we had cake and tea, after my parents left the kids asked if we could watch a film and like a fool i said yes (in my head i said sod it is my birthday i can do what i want) so we watched Avatar and ordered chinese takeway. all seemed good i thought i needed a bit of help to get up to bed but no more than i have needed before. i should have listened to my hubby who kept asking me if i was ok and suggesting i rest!

but as alway i knew better!

i was going to win i was going to have my day and enjoy it m.e was not going to stop me oo what a fool!

my midnight i was starting to realise my mistake as my body was so tired it could not rest or sleep the meds i took made no difference and the pain in my back and hip was starting to scream at me to the point when no matter what i could not ignore it.

by saturday morning i was so ill i stuggled to get up and move and was back in bed by lunch as my body shut down totally exhausted. i woke to eat and drink then slept again disturbed by the pain as i moved on sunday pain was a constant companion and not that dull companion that is often there the one you practice to ignore but the noisy screaming in your face im here companion that was making me catch my breath as i moved and unsure if i could sit of stand or lay.

today is monday an im still suffering the aftermath of going out for a day and ignoring the m.e,
one day i might realize i cant run from it or hide not even for a day as special day as it will find me and catchup me delivering its own peculiar form of punishment.

i feel a bit like a naughty child who knows that they will be told off and in trouble for what they do but they have to do it any way no matter the consequences, that how i felt on friday but today im wondering if the punishment fits the crime!

yes i had an absolutely wonderful day i did every thing i wanted to do but it was not extraordinary nor was is exceptionally risky or dangerous so why i have been punished for three whole days for less than 12 hours fun. and no i have not recovered yet i suspect i will have a week of punishment before i am back to my useual broken self.

M.E is a cruel and unusual punishment that is not just or fair in its interpretation of what is to much.

Wednesday, 21 April 2010

facing the ugly truth

it seems to me that without realizing to be able to continue we lie to ourselves, we tell ourselves daily that this life we lead is fine and nothing is wrong. i am pleased and feel happy with my self over what i achieve blithely ignoring the stuff that sits undone because i cant do it. we adjust and accept how things are and tell our selves that its fine, it becomes normal that i no longer go anywhere without another adult.

gradually Paul has taken over the role of house wife and carer only we dont talk about it. in our little cocoon we are doing fine life is normal and we have no problems that we are no dealing with;

then a stranger comes into our home and with a few simple questions the truth hits us, its not normal for a 41 year old to need help to dress in the morning and to wash. its not normal that my husband is doing 99% of all the jobs in the house while i sit and watch to tired to help. or that i got to bed before hubby goes to work at 7.30 so that im safe. and when the question is asked about what do i do outside of the home independently. the hard truth is nothing. facing the truth is more than we need and so much more that i can cope with.

when this stranger tells you that your husband now spends over 12 hours a week caring for you and that if you were on your own you would have to have someone come in to the house to help. and that help is only for the basic needs cleanliness or your person and food. they dont count the fact that he does all the washing, cleaning of the house and cooking. they talked about having someone come in so he could have time off from having to look after me. when did i stop being his equal his wife, to being an extra job and more work that he needs rest from.

the truth of this and having to think about it is not something i can cope with so i think the ugly truth can remain buried under a thin layer of lies that allow us to cope laugh and smile as the reality is to sad and scary to have to think about.

so i choose to hide from the ugly truth and live with in the web of lies i construct as it is these that keep me going each day, its believing that i help and do something other than add to my wonderful hubby's problems. i just hope that web we constructed that allows us to hide is not damaged to much and wont take to long to rebuild so that we can hide again f4rom that horrible ugly truth, M.E

Sunday, 18 April 2010

my M.E story so far..

I thought I would share my journey with you all. Looking back at it now it has been a bit of a roller coaster ride that does not seem to be finishing yet!

I have always needed more sleep than most people I know and been susceptible to every infection going. I always put this down to my asthma and the high levels of prednisolone that I was frequently taking to control it.

By May of 2008, I had started to fall apart. I was sleeping 14 hours a day and struggling to hold down my job as a HLTA (Higher Level Teaching Assistant), as well as going to Uni where I was doing a degree in educational studies. I was also caring for my family. I had flue at the beginning of April and never picked up (you know the real flue that leaves you in bed and a total wreck). By the end of May, I was a nightmare to live with - I snapped at everyone, had a permanent sore throat and lost my voice. I was frequently in tears thinking I was going mad as everything seemed so out of control (being a bit of a control freak this was not good).

My fantastic GP did depression scales and told me that I was not mad but probably ill and signed me off work for a fortnight and ordered loads of blood tests which was to be the first of many.

I went back to work still very tired and soon was worse than before. I struggled on till July having days off to sleep. The pain in my legs and back I put down to sciatica and I tried to work through it. Work kept asking me questions and asking what they could do to help! The only problem was they didn't really sound like they wanted to help. What they really wanted was the old me back who did everything and never complained and always smiled, something that had disappeared by this point. I didn't know how to help myself and started to feel very threatened and insecure at work. This was made worse by the fact that every time I came back to work after being off I had to have return to work interviews where my attendance was discussed. I remember feeling threatened as all the management team sat there and wanted to know why it was only at 50%! If I had known the answer then I would have given up trying to fight. I was moved out of the year group I had been working with and where I felt secure in order to support a failing teacher (which was a joke as I could not even support myself).

The GP referred me to and ENT specialist and to a Dr from the medical team. A the end of July, he started suggesting that maybe it was PVFS. Loads more blood tests showed my LFT (liver function tests) had gone through the roof because of the amount of paracetamol I was taking to try and control my temperature as well as the pain in my legs and back (although I never exceeded the stated dose).

The ENT Dr said I had visible muscle weakness in my vocal cords and discharged me. The medical Dr told me I had CFS and that it will take at least two years for any improvement. He suggested I made some major life changes as the job I had would only cause me more issues as you are at constant risk of infection. At this point I was still hoping that the 6 weeks summer holiday would be enough rest for me to recover!

While all this is happening, my calcium levels dropped and I found a breast lump at the beginning of September. By October, I was in hospital having them removed, (they were benign). The surgery knocked me down even further and by now the fatigue was such that I was sleeping 18 hours a day and finding it hard to do even the basic things like bath and dress. The amazing thing though was the discomfort from the surgery was nothing in comparison to the back and hip pain. This is when I started to really worry.

By the end of November, I find I cannot walk without using the furniture in the house and have increasing pain in my legs whenever I do walk or stand. On standing, the pain was also around the abdominal muscles. The weakness caused by the fatigue and the pain slows my walk to a shuffle and I have a permanent tremor that is exacerbated by exercise.

Over Christmas, I ended up using crutches to get about and collapsed after a short trip to Morrison's with the parents. The collapse was caused by sheer exhaustion. The muscle pain and weakness now affects my arms and a load more tests are being done. I am referred to a neurologist and the M.E clinic.

Work started to threaten me with disciplinary action as I have not returned to work and I am still handing in sick notes. They referred me to occupational health but they use this as a threat. I started to worry as I’m still at Uni but in order to continue, I need permission from work and my GP as the Uni are starting to get a bit concerned about my ability to continue due to my illness.

I wake up in the night having had the most vivid nightmares and can be so hot I can’t bare the duvet on me even if it's below zero outside and the heating is off! if I am having a really bad night, the IBS kicks in as well. Oh the joy of it. Makes me wonder if it would be easier to have my bed in the bathroom!

After my visit to occupational health and the medical assessment, work backed off. They gave me permission to carry on at Uni as did my GP and the M.E consultant who felt that this would be a good thing for my mental health. I started to use a mobility scooter if I go out and can sit to help prepare dinner. I went to university one day a fortnight and was prepared for the three days it took to recover. The struggle and the fight I had with the Uni to complete my degree was worth is and I graduated with a 2:1 in July 09.

In the July of 09, work informed me that they would be seeking to dismiss me on the grounds of ill health which they have still yet to do. Between then and now, I have had to learn about the benefit system and endure medicals and people questioning me as to the severity of my illness and the reality of it. The difficulty with the system is that the reviews and questions are constant! I hate the way they make you feel guilty for asking for help! My latest struggle is with trying to apply for my ill health pension. I can’t say I hold out much hope but I won’t give up!

Friends have disappeared and new ones have taken their place although I still find myself grieving for what I have lost. For the most part, I accept my life for what it is - severely restricted. I am still undergoing tests and new problems seem to occur every month, I am now glucose intolerant and take diabetes medication, I have hypothyroidism, and recently my liver has started to mess about again so am off for more investigations!

Yesterday I went back to see the M.E consultant and he was surprised by my deterioration over the last two years. Not all of it due to the M.E, as the diagnosis of fibromyalgia has also now been confirmed. I have to say that I feel lucky in some respects because all of the Dr's that I have seen have been fantastic. None have dismissed me, any new symptom is checked out and not just put down to M.E. and most of this is because I have a fantastic GP.

I have learnt to manage my illness to some extent though I can’t say that I pace effectively all the time as life and pacing don't necessarily go hand in hand. Sometimes I choose life and take the payback although it does make me grumpy!

What I do know is that I would not have managed any of this without the love and support of my family. I am lucky that I have a fantastic husband who has never once made me feel bad. The constant company of my dog Google is something I’m forever thankful for and now on good days, we go out on excursions together, both of riding on my mobility scooter!

Saturday, 17 April 2010

a lovely day

this morning the sun was shining, and i woke up feeling like i do on one of my better days so i new an adventure was in the offing, it was time for an outing.

so off i went with google on my scooter and josh came to...

we went to the park for google to run around, barking like a nutter, he spent 10 minute's busily clearing the park of all the birds and then another 10 minute's checking all the smells (you know the ones that only dogs are interested in) till he came back and looked to me for a ride, so we went over the bridge swerving through the slarllem gates, through the cycleways lined with daffodils towards tesco, with google bounding around at top speed checking all the smells and busily adding as many of his own as possible so that all the other dogs would know that google had been here. we said hello to all the other dogs we met on our way (google hiding behind my legs if he did not like the look of them obviously the red setter looked very dodgy!)

finally he had had enough running and decided he wanted to ride. he climbed onto the scooter sitting between my legs his head lolling on my foot as his ears flapped as we whizzed along his pink tongue hanging out and a huge grin on his face. google loves nothing better than and run and ride. he laid and snoozed with josh while i did a quick rampage around tescos and covered the scooter in shopping (im really not sure if you are suposed to hang shopping bags off the head rest ). fully loaded we sped home watching the battery lights disappear with fingers crossed we made it. as we pull up outside our house google climbs off carrying his lead to the door as he yaps excitedly at the door to let Paul know he is home. another adventure complete now its time to sleep in the sun and dream of the next one!

going out with google and spending time with my family is something i love.

Tuesday, 13 April 2010

who am i now?

Who am i now is one of the questions i have been asking recently. I know who i was , i was a trainee teacher/student, main carer to my children and hubby, housewife, with a busy social life and lots of friends, i was an active person who like being outdoors and loved to hike. My whole life was goal driven it was about what i was going to do and how i was going to get there and being better than last time.

All that has changed i now no longer contribute to society by working, or to the house hold fiances nor am im the main carer for my family, i am now cared for, i no longer cook and clean or have an active social life as most of the friends i had have disappeared into the wide blue yonder as i no longer participate in life like i used to.

I have however started to redefine myself as for a long time i was not sure who i was. Yes im broken but im still here. I have found new things that help me to define who i am and give me a sense of achievement, pride and allow me to feel needed. Coming on foggies helps me fulfill the needed bit by being able to offer support to others, making cards and painting gives me the sense of achievement and completing something, planting stuff in the green house gives me the pleasure of watching stuff grow.

I now find pleasure in my success's how ever minor and have pride in the small things that i achieve, i miss who i was but i like who i have become, i am more patient, i am able to take pleasure in the simple things i used to take for granted. I am not the person i was pre m.e and i don't know who i would have been if this had not happened, but the person i have become is not all bad, i do miss being able to do some of things i loved like hiking, and work, but i have learnt that these did not define who i was just as m.e does not define who i am now it just creates a few more challenges for me to overcome. In some ways my life is better i have a stronger relationship with my husband and my children as now we have to work together to achieve things. My glass is still full but its content has changed!!

Wednesday, 7 April 2010

facing reality

this is one of the hardest things i have done, i have had to sit and look at my life as it really is now to write this letter for the pension people.

the hardest thing is that just over 2 years ago i waas working full time studying for my degree, i had an active and busy family and social life. we had plans for the future i new where i was going we holidayed in the lakes and Derbyshire enjoying hiking and wandering through the hills and valleys. we were looking forward to the benefits of me becoming a teacher and the children growing up and becoming independent. my hubby and i were planning our life together and what we were going to do and where we were going to go. and then this happened

The M.E and fibromyalgia have restricted my daily activity severely to the point that with out help i cant manage.

On a daily basis I have to use specialised equipment so that I can shower such as a bath board and grab handles however even with these there are days where I need physical assistance off my husband to enable me to clean and dress. My bed has been adapted and heightened so that I can get out of it although depending on the day I still may require assistance.

I am unable to manage the stairs and have to use a stair lift so that I can get downstairs in the morning and to return up the stairs. I need to use a stick to move around the house or I will use the furniture and walls to steady myself. My chair in the lounge is also raised so that I am able to get in and out of it although there are times when i require assistance to do this. I need to sit with my legs raised or the effort of just sitting causes me to become fatigued quickly. The pain I have reduces my mobility and the speed at which I am able to move considerably it also makes it impossible for me to walk any distance(more than 10m) or stand for any amount of time (more than 5 minutes) however to walk or stand causes sever pain in my lover back hips and knees all the time this just gets worse if 1 do any amount. The pain and fatigue as well as the concentration and cognitive issues associated with these illnesses mean that I am unable to drive and need to be accompanied, when I am able to go out although this is not often. On the days where I do go out I have to use a mobility scooter or wheelchair as I am unable to walk any distance due to the pain and fatigue caused by the illnesses however the days where I manage to get out, are considered to be my better days.

Due to coordination , cognitive issues, fatigue and pain I am unable to cook for my self and this is done by my husband or children, when I try to do this I am unable to lift things in and out of the oven due to the pain and coordiantion issues, and the coordiantion issues mean that I have frequently cut my self making it unsafe for me to do this. I can no longer cope with the bills and financial side of things as I find it confusing and am often disorientated as to day and time. I no longer take telephone calls unless its to family as I tend to loose track of the conversation and cant remember what has been said. For this reason I am accompanied by a family member to all appointments, and my husband now deals with all the important day to day management of our lives and home. On a bad day am unable to even hold a conversation with a family member with out getting confused.

Due to the constraints of the illness i am not able to partake in social actives, as the fatigue, cognitive issues and pain restrict the amount of time I can be out of the house and cope with company as a simple activity such as chatting to a group of people is exhausting and confusing as the noise and interaction between other members leaves me confused and often excluded as I cant join in, because I will have lost the thread of what is going on. However such occasions are so rare as I need to be in bed in the early evening as the pain and fatigue make it difficult fo me to sopport my body and sit up.

However there are days where I am even unable to hold a conversation with my family, get dressed or showered. These days are the result of doing something that most people take for granted such as going to the a Dr's appointment, seeing family or going to the supermarket. however I will not have walked around the shop or managed to do a full weeks shopping, I will have gone on my scooter with a member of my family in attendance to assist. This simple activity will cause post exertional malaise and increase in pain stiffness and muscle spasm leaving me struggling to move or do even the basic things such as get a drink and go to the loo.

These illness have left me unable to care for myself never mind for my family, I am unable to do basic activities such as hoover, clean or cook a main meal. The inability to do these basic things means that I would be unable to go to work as I would not be able to get there or carry out any of the duties that I was responsible for before I became ill. In the time since diagnosis I have only deteriorated and have shown no sign of improvement. More and more medical issues seem to be turning up and since the initial diagnosis I have also developed hypothyroidism, glucose intolerance, gastric reflux, IBS, high cholesterol and have developed some issues with my liver and am awaiting an appointment with a liver specialist for a biopsy. I am also waiting for the referrals to rhumatology and the pain clinic.

Over a month I will have a week where I am unable to do anything and basic activities such as dressing, showering are difficult and require assitnace from my husband. There will be 5 or 6 days over the month where I am able to go out with a family member on my scooter. the rest of the time I will be house bound and some where in-between the bad days and those where I am able to go out for a hour or two on my scooter. But even on my better days I am not in a position where I would be able to work as trying to get ready and the trip to a work place would be exhausting and beyond my caperbilitys.

sitting and writing this out and facing the changes has been hard, its amazing how much we fool ourselves so we can cope with what happens. tears and tantrums have occured facing this reality is not something i can cope with on a daily basis!

Friday, 2 April 2010


easter is a good time of year spring is beginning, the first green shoots can be seen as the plants wake up from there slumber the daffodils dance and the birds are singing all thats missing is the sun!

it a wonderful time of year when all of nature is renewed and given a new set of clothes to display to those watching. the hawthorn at the bottom of my garden is covered in buds as it wakes to the blackbirds building there nest, the doves are arguing and fetching bits of twig for there nest in the elder that has just started to sprout the greenest of shoots as its new leaves start to emerge to protect the doves young and hide them from view till they are ready.

its a lovely time of year if you have time to sit and watch, the problem is that all i have is time my spring preparations are taking place without me as i get to watch. hubby tidies the garden after its winter sleep and plants the summer bulbs as the spring ones are erupting all around there jewel bright colours luminous again the darkness of the earth and the bleakness of the weather. im not rebuilding my nest and decorating it like the birds but yet again i get to watch hubby clean, polish and paint to brighten up the house after the cold dark winter gradually bringing it alive and vital ready for the spring and summer. i watch on sitting in my chair while they all bustle around me chattering in excitement as the winter ends the only problem is my hibernation seems to be ongoing and have no end.

my spring has not come im still stuck in the depths of the m.e winter with no new green shoots of life appearing. my spring seems to have stalled and no new life is being breathed into my hibernating body. maybe as it gets warmer the sun will entice me out of hibernation and give me some of the freedom i so desire so that once again i can dance in the sun and feel the energy of spring running through wakening my body from its slumber cracking the ice that holds my joints an muscles so hard and firm allowing me to feel free and unhindered.

easter is a wonderful time spring is here new growth ,new life, new hope for a better year...

Tuesday, 30 March 2010

its not a good day its just a better day!

i have always thought that those special days where you feel better were good days.
but today when i was explaining what a good days was i realized that they were really only better days. a good day would be the day where i felt like i used to pre m.e and fibro.

for me a bad day means i need help to dress and it hard to make myself a sandwich a lunch time as every thing hurts and all i want to do is sleep, to hold a conversation is hard work and the thought of having a shower is just to much to cope with.

a better day means i can dress myself and shower, i can make my own lunch and maybe go out for and hour on my scooter before the pain and fatigue become to much to cope with. so could i really call it a good day.

to me it is but when i talk to others i realize that they have no concept of my life or the restrictions placed on it by this illness.

one of the biggest problems i have is that i have adjusted to my days and no longer see them as abnormal it just it how it is. i no longer feel strange using a scooter to take the dog out or to go around the supermarket, it does not feel strange that i go to bed at 6.30 pm or that i use a stair lift to go up and down the stairs.

but to the rest of the world my life is restricted it does not allow me to participate within a work place or have an active social life.i can not care for and clean my home nor cook for my family on a daily basis. but in my world this is not strange i no longer think in terms of what i cant do but rather in terms of what i managed.

so im excited if i have made a card, written a letter to a pen pal, helped prepare dinner or have taken the dog out on my scooter. its fantastic to get out into the garden and sit in the green house for 30 mins and plant some seeds. i love it when i get to go to my parents for the day and sit in there kitchen and chat or a friend pops over for an hour.

i feel proud if i manage to dust the lounge because i have managed to help but i no longer exspect to be able to clean the whole house as its not an option.

so i have better days but am hoping that one day i can again have a good day.


Tuesday, 23 March 2010

how do you cope with so much pain?

everyday i hurt, all i want to do is cry.

today my pain was confirmed and named by a dr i have as i new fibromalgia but i did not know the severity of it. every pressure point he touched sent tears streaming down my face and made me buckle at the knees.

hopefully the information he has sent to my gp and the meds he has recommended will help.

i just dont know how to deal with and cope with the pain. some days it gets to much.

Wednesday, 17 March 2010

up and down yoyo time!

i know just as every one who has ever had m.e knows that pacing is the way to control your symptoms.
however the difficulty is that to pace effectively you have to find your base line and if you are like me this means that you really cant do a lot! for my symptoms to remain at a constant level with no increase, my day would consist of a shower (sat on a bath board with a hand held shower), dressing, going downstairs on the stair lift walk to kitchen to get breakfast, return to lounge and rest for an hour, 20 mins reading/comp/tv, and hour resting, make lunch, an hour resting, 20 mins tv/comp/or craft. an hour rest. help to prepare evening meal sat on perch stool not more than 20mins, eat evening meal, go to bed rest one hour tv 30 mins rest then sleep.

at this level i have no increase in symptoms and eventually a decrease in my physical issues. but to do this sends me nutty. no wonder a lot of people with m.e get depression as well living like that is not living!

so do i do this every day, no i dont, i have a couple of days a week where i do this. the rest of the time i live a little each day. i do something that makes me feel like i am part of the world.

so i go out on my scooter, or pop to mum and dads for a bit, or watch a film, some times i make cards. these are the things that help me to carry on and stop going nutty. but they also cause me to yoyo and boom and bust a bit.

the problem is i have not worked out a way of pacing and living.

my symptoms have not reduces nor changed particularly in the 2 years since i was diagnosed what has had happened is that i have got used to it and so has my family so unless im really bad we dont notice. we expect the bad days and look forward to the good days.

i think the most difficult thing that i have to deal with is other peoples opinions and i dont mean friends and family, as it is obvious most days that im not well. the people i meet with the
most prejudiced are those that are there to supposedly help and support us they look at you on a good day and say that you are fit to work not taking into account that i only one of those a fortnight! the drs that sit there and tell me i could get better but they dont know when or how long!

what i do know is that without a computer i would have been so much worse, the computer allows me to contact and chat with other people, it helps me to find the answers to my questions. the computer allows me to live a little more than i would be able to in the real world. it is not a replacement for the life that i had but it is a crutch that helps me cope with the life i now have!

having m.e is a roller coaster ride that gives you a few highs and some incredible lows it sets you up for fall after fall both physically and emotionally. the only problem is the other on the ride with you are not experiencing all of it! up down good or bad its not going away and i still dont have any answers!

Wednesday, 10 March 2010


this morning im so excited and cant wait for the day, how silly is that im 41 soon to be 42 and im behaving like a small child!

today is so exciting because this morning i am having coffee with another person with M.E (pwme) ans his wife and im meeting someone totally new who also has m.e. the reason for this is after we had finished out pacing class a few of us felt that it would be good to keep in touch and for a sort of informal support group we talked with the OT and she asked us if we mind if she forwarded our email to others that was Vera an me. and today i get to meet the first person who was referred to us. s originally Vee was coming today but as always life happens and she now cant make it. so im excited and nervous about that but in a good way.

then this afternoon my brother is home with his wife and little boy who i havent seen in over a year so im also very excited about that. they will be arriving this afternoon which will be fab. im looking forward to hopefully spending the day with them tomorrow.

the other thing that has got me so excited it that my new bedding came yesterday my new curtians are coming today and the children started painting my bedroom for me last night for mothers day they have got a 1/4 of it done and i love it already.

im so excited today that the pain doesnt even matter lol i just hope this happy feeling and excitement can carry me over the next few days so i can enjoy the time with my family.

Sunday, 7 March 2010

disbility in hiding

M.E/CFS and Fibromyalgia are among the diseases that create hidden disabilities. if you look at me sat in a chair i look fine no visible signs of illness the majority of the time.

but when i stand and start to walk its no longer hidden some days im quite good and only if you know me well would you see the tell tale signs but on others like today its obvious. to rise to standing is slow and labored my teeth gritted against the pain. each step is like watching a toddle learning to walk slow and fraught with danger, i wobble and stumble, the effort leaving me exhausted both mentally and physically.

most days to the out side world i cope i get up, get dressed, laugh and joke, what they dont see is what i hide not only from them but from myself deep inside hidden in a locked box is the fear that things could get worse, i no longer think in terms of getting back to normality and living a life like i used to. my ambition is to be able to keep house! something that most of us take for granted.

to day that locked box was opened for a short while as when i tried to stand this morning i could not, the pain was unbelievable even by the standards of what i normally cope with. i could not bend to dress and had to be helped by my hubby not something you really expect to have to happen when you get married and not a role that we were prepared for. the subtle change from partners in every thing to patient and carer. thank god for the stair lift or today i would have been trapped in my bed room not able to see the garden and appreciate the sun in the conservatory.

the reason that my disability is so hidden is that no one sees me, on days like this where basic things are hard i dont leave the house and visitors other than family are few. im not complaining or moaning but stating fact. i only leave the house on the days where i feel good, and even then most of the time its for very short periods.

i hide behind our front door not from choice but because the world is not designed to help me and others like me,

that doesn't mean i want everything to become accessible to me or that i feel excluded but the very fact that buildings have steps, paths have curbs, and my illness is not visible makes the world a place thats inaccessible with out help. my problem is independence and the lack of it available to me because of this god awful family are great but they like me are ignored by society at large and not helped. yes i am disabled yes i have a chronic devastating illness for which there is no cure. But unlike many other disabilities mine is ignored by many in the medical profession, in government and research. am i alone in having this illness no i share it with over 250,000 other people.

today i was reminded by my body how broken it really is. most days i can hide from this just as the rest of the world is able to ignore it. i hide so i can survive to fight another day, i hide so i can cope and help my family cope, i hide so i dont have to explain it to any one else. all of my reasons are to help me cope and carry on living.

what are your reasons for ignoring it? my disability is hidden because some people just cant be bothered to look, whats your excuse?

Saturday, 6 March 2010

what to do!

one of the hard things about having M.E is the amount of time in each day that you have to fill with
something thats not going to consume to much energy but will occupy you.

normal peoples days are taken up with work, house work, cooking and family. but my days are no longer filled with that because my body wont allow me to do these things.

finding things to do sitting down with my legs up has not been easy, for example i love to read but more than 20 minutes reading leaves me unable to concentrate on anything else for the rest of the day!

i love to paint but this has always been a hobby that i have done as and when i felt like it and not something that i can make myself do to fill the time as its something that just has to feel to happen and i tend to want to complete whatever it is and forget to rest!

i spend time on the computer but this is not something that i can spend all day every day doing though is is very easy to loose the day in chatting on line and browsing web sites, so i have been looking for things to do that i can pick up and put down as necessary so i can rest when needed with out messing up what im doing.

i have found my old cross stitch that got put in the back of the cupboard when i started studying and working full time. but this takes more concentration than you realize so like reading i cant do it for long.

i have decided to have a go at knitting again (not having done any since my kids we little) but forgot how much it makes your arms ache! although i have now got the rib of one side done!

then a competition came up on foggies the M.E website i use to win some card making stuff, never having done this before i entered and waited to see, low and behold i won a package arrived full of bits of paper and card little fabric flowers sequins and other shiny things i was drawn like a magpie to it all. this morning i have spent and hour happily cutting sticking and creating, (took me back to school and art class!) this morning has been glorious and i have completed and created cards something totally finished.

my hobbies pre M.E were more active as i like to walk and swim. i loved to cook this has not changed though more often than not i never complete a meal on my own any more. i used to read a whole novel in one go now a book lasts me weeks!

so to find something that i can complete on my own quickly and have fun doing has been so much fun this morning.

here is a pick of my creations.Photobucket


Sunday, 28 February 2010


sunday is one of the best days of the week. you get to lay in and take it slow there is no rush to anywhere or to do anything and we are all home together.

we have the traditional sunday lunch where we all sit around the table together, we talk about the week. and spend time together. this morning hubby and i baked and made a mess of the kitchen, we made choc cakes, cream and jam scones, shortbread and daibetic raspberry muffins.

we baked bread rolls for tea and roasted chicken and gamon for lunch.

sundays are fab cos they havent changed its ok to chill and so not much different to life befor M.E. its the only day that hasnt changed i get up late eat to much watch movies, and chill out.

yay for sundays

Tuesday, 23 February 2010


the problem with m.e is that every day you have to make choices, they are not the normal choices that you may make every day thay are basic bottom line choices.

do i dress or shower today are the choices that start my day. not because i am lazy or dont what to do all the things that are possible its that my body wont let me do what i want so i have to choose.

last week we went away and i choose to ignore my body to have some fun, it was food for the soul. it gave me a sence of being me the person i once was. but by making that choice i now have to payback what i owe i over spent on my energy card and now the bank is calling in the debt. to those around me it might not seem like im having to much of a problem and am coping well with the energy debt. what they dont see is the fact that i cant sleep cos i dont have enough energy to do so (yes it takes energy to sleep) the pain levels have increased and my brain is struggling to think through the fog that has invaded it.

last night i had to choose again i had the chance to go out and have fun or got to parents evening. i could not do both, once upon a time i did not have to choose i could do both i could got to work keep house study and have a social life. M.E means that every day i have to choose help clean or help cook. go out on my scooter or do the washing. this is how i have to control this illness by rationing my energy expenditure so a stay in credit, being in debt constantly will eventually rob me of what i have now. with luck staying in energy credit might might allow me to save and mean that eventually i have more energy to spend and can make more choices not less.

Saturday, 20 February 2010


this last week i have been away in the caravan with hubby and google. we went to sandringham. the caravan site was clean and tidy and set in the woods surrounded by pine trees. staying in the caravan makes life easy and give me energy to do other things mainly due to the confined nature of the caravan and a bit due to the need to have fun!
as you can see from pic not far from bed to food lol. any way while a holiday may not be the best idea in the physical sense as i tend to come home physically knackered its does wonders for my head.
getting out and seeing new things makes life worthwhile and reminds me that there is still such a lot i can do.

sandringham was beautiful full of wild life i watched the rabbits from the caravan window and the chaffinches in the trees, i saw the deer in the woods and had one gallop alongside us as i was out exploring. the noise it made as it thundered past was amazing. i watched the grey squirrel digging for his winter store in the clearing and i watched the snow fall from inside the warmth and safety of the caravan.

i managed to explore the woods on my scooter probably doing everything it tells you not to in the manual. but it gave me the chance to walk! like i used to in among nature and off the roads.
ofter each trip i would get back stiff and sore but smiling from ear to ear it was just so good to be out even if it was freezing and i had 2 pairs of gloves on and a blanket over my knees!

some times you jst have to say sod the consequences and go for it i know that this week will be hard and ill suffer for all the fun that i had but hay i did it i went out and had a holiday okay i had to go to bed at 7pm like normal but i wasnt cut off in my bedroom like at home i was still there in the same room part of it.

i know i have over done it and spent more energy than i had but hay it wouldnt be a holiday if you didnt overspend!

i loved it and it will give me something to think about and remember on those days where it can get a bit dark.

one last pic of one very tired dog after a day running in the woods.
i know how he feels......

Sunday, 14 February 2010


today my hubby had me in fits of giggles over his valentine messeage on facebook. it just reminded me of how much i love him and how lucky i am. then my brother rang from usa and i got to here jack saying hi aunty rachel and telling me i live in england which was great but not sure that he doesnt think i live with grandma and grandad as they live in england too.

the kids have packed there bags and are sorting there food, the roast is in the oven, and the house is clean it is now one of those lovely sunday afternoons where you have got nothing you really have to rush about and do.

google is snoring in his bed next to my chair and paul is playing on his laptop discovering how to play the guitar.

mind you i must say the day did not start out this way it took me a while to realise i was hurting so much because i had not taken my tablets and then realise that i was feeling sick cos i had not eaten oh the joy of a foggy day.

i have emailed someone that i hope will become a new friend and wriiten my second letter to a new pen pal. now i have time to contemplate the day and find that actually all things considered it is a good one.

if i can laugh at my troubles they are not troubles any more, so tena ladies to the ready ready for a week of smiles and giggles....

Thursday, 11 February 2010

happy days

over the last week i have generally been feeling happier, which is great cos this helps me to cope with all the crap that comes from living with M.E and fibromayalgia.

i had a lovely afternoon out on sunday when i went across the road to our friends for sunday lunch
we had a great meal and lots of giggles which makes for a good day. and for a change although i had a lte night for me i did not have to much payback on wednesday my dad picked me up and we popped out to get the few bits i needed like bird seed and stamps. then went back to mum and dads for lunch where i had a lovley time chatting about every thing and anything. then today bam im back on the floor i was feeling so ill that i took myself to the gp only to be told that i have a sinus infection no wonder i have had a permanent cold since xmas!.

the house is full of excitement as the children prepare for there outward bound adventure holiday in wales. they both get the chance to try some exciting activities such as rock climbing abseiling, canoing and coast stearing. they will be gone for 5 days it will be strange with out them but hubby and i are making the most of it and escaping in the caravan so we both can rest and make the most of the time.

google is better and back to his mad self running around with his toys and sleeping his way through the day and night. mind you he seems to be giving the cat a wide birth so i guess he was not to impressed with getting an infection from the cat bite!

its only just over a month now when i get to see my brother and his wife and jack i cant wait to see them all and to spend some time with them. i must try and rest before they come so i can enjoy spending time with them. i love getting to talk to jack on the phone and see the photos on line. with luck i hope that i will be fit enough to go and see them next year and spend some time in usa with them.

i have got such a lot going on and so much to look forward to i cant wait for it all.

Saturday, 6 February 2010

freedom=mobility scooter

one of the hardest things to adapt to with this disease has been the lack of mobility, that fatigue and cognitive dysfunction has taken away my independence and freedom by making it difficult to drive so that i no longer feel safe.

not only did it take my freedom by stopping me from driving but a lack of balance and the post exertional malaise and pain in my joints took away walking or using a bike.

so to enable me to have some of my life back i had to make a hard decision and realize that the crutches or walking stick were not enough, i thought about a wheel chair but realize that this would mean having to surrender what bit of independence i had left. a wheel chair would put me under the control of another person this was not an option i could deal with i still needed some control.

so i borrowed a mobility scooter from shop mobility and was amazed at the freedom, i was able to get around the whole shop on my own and not collapse into a heap after. using the scooter was like passing my driving test and going out on my own for the first time. it gave me part of my life back.

it helped me to make the decision that a mobility scooter was a way to move forward and it didnt take away from me but enabled me to get some of me back.

choosing a scooter though was complicated. i wanted one that could do it all but cost me nothing.
then we found the deal that gave me the best of both worlds a large class three scooter that would give me the ability to go from home to my parents or the next village, it would enable me to take my dog out for a walk and to go out with hubby on his bike. we also got a small shopper scooter
that goes in and out the car and lets me wizz around the supermarket and shops.

the only problem is they dont make any noise so im permanently on stealth mode which can be fun but also means that people dont hear or notice me.

at first i was very aware that i was only 40 and sat on a mobility scooter after all they were for old people. but soon i stopped thinking about that and started to enjoy my regained freedom. if only every thing could be as easy to overcome with this illness. it has not taken away the difficulty or lessened the mobility problems but far form disabling me having a mobility scooter has enabled me to still have some life.

once i had come to terms with the fact that mobility aids were a way of enabling me to carry on
i got in touch with adult social care and had an OT assessment i now have grab rails next to the loo allowing me to be more independent, i have raised poo seats unglamorous yes they are but then its not very glamorous having to ask for help to get off the loo! i have a bath board that allows me to sit in the bath and use a hand shower to clean myself rather than having to be hauled out of the bath and slipping and falling in the shower. these aids have given me my dignity back an have enabled my independence.

i also have now got a stair lift which has turned my house into a bungalow making it all accessible all day every day which may seem strange to you but for me to go up the stairs is a major event that consist of me hauling myself up each step one at a time halfway up the stairs the tears would be running down my face as my husband had to half pull half drag me to help me get to the top.

the only thing that i really hate about all of the things that i now have to enable me to live to the best of my ability is the appearance of the said aids. for some reason they are all ugly reminding me of hospital or old peoples homes. there must be a way of making some of this equipment attractive as well as practicle.

i dont want disability equipment i want enabling equipment

Thursday, 4 February 2010

happy... sad... always in pain

i think one of the hardest things about m.e is that no matter how you feel it is still there.
i some times wonder if the diference between a good day and a bad day is more to do with how you feel rather than the symptoms being less or more.

when im feeling very happy the symptoms are still there and over take me by the end of the day, but my spirit keeps me going finding the funny side of the stumbles and the wrong words, laughing at my fogetfulness.

on a bad day i wake up with that overwhelming feeling of defeat and loss the pain is there like always but on those days i rage against it, i get cross when i stumble and upset when i forget stuff.

then there are the days where im neither happy or sad. where the pain is there but i cope. i stumble but aceept it as part of life. i dont notice what i have forgotten.
and i try to move forward.

although some of my symptoms come and go my mood afects how i cope, i supose that this is normal.

to day is a normal day not happy, not sad, just here.

every day i wake up with pain in my back shoulders neck and hips as the day goes on it spreads to my knees and wrists and hands. i wake up feeling like i have not slept and by time i go to bed my body is so physically tired i struggle to support my self.
my nose is so cold as are my feet that they hurt like i have just come in out the snow and stuck them on a radiator to warm up to quick. my stomach cramps and then emptys multiple times till the meds kick in. the headache is there that i no longer notice it like that chip in the furnature has always been there. my throat is sore and so dry that i keep drinking and even wake in the night for a drink.

even with all this i still have days where im happy and sad it does not mean that im feeling better just coping with the day or not.

the visitors...

every day google and i are visited by our feathered friends. at 9.00 am the sparrow family comes all 6 of them they hustle and bustle about flitting from one feeder to another chirping away while one sits in the hawthorn watching alert for an intruder in there breakfast ritual. they swap place always one watching while the others feed they are not to good a sharing and squabble over the best bits. i know what they are watching for that 4 legged monster that sleeps on the conservatory roof called a cat grizabella watches through half closed eyes waiting for them to make a mistake and stop looking but they dont, and soon they have finished an fly off in to the trees at the bottom of the garden to preen and chat

at 11.00 Mr robin pops in for a bit of light refreshment he is a jolly litte fellow that shares a pleasant song while he still on the tray nibbling at the seeds and suet telling all those listening the news of the day. as he leaves the hoodies of the bird world arrive the gang of hooligans with there messy feathers and constant argument over who is the boss the starlings raid the the bird table jostling for position arguing so much that they dont see danger arrive in the stealthy form of mac the ginger cat, they leave with a squawk and flap furiously to escape the eager amber eyes and the ever ready claws as he contemplates his pray.

all is quiet for a while then but as mac leaves and wanders off the queen of the garden arrives to check her kingdom the thrush stands on top of the bird table tall and regal showing off her speckles for all to see. she gently hops down to where the food is and picks at it only taking the best bits. she does not stop long but here presence brings Mr and Mrs black bird her loyal subjects to attendance as she leaves they are given permission to carry on one sits on the chair while the other feeds watching for imminent danger. they swap and Mr black bird in his smart tux watches over his wife. Mrs black bird is res pendant in dark brown Velvet with black accessories unlike her husband who is wearing all the gold in the family showing his wealth in the colour of his beak.

at 3pm the great tit and the sparrows return for afternoon tea. a more civilised affair and a party the black birds stay sometimes and occasionally the special guests appear skipping through the air excited at being invited, the long tailed tits dance from one feeder to the next. the two lovers return as well for a brief moment they sit together on the top of the bird table is their beautiful pale grey and mauve gowns showing their commitment to each other with the rings around the necks the doves coe and watch the dance of the long tailed tits the chatter of the sparrows then take there leave as Mr robin pops by for the last time today just checking that all is ok and he had not missed any thing important.

all the time while this is going on the dunocks hop around picking up and tidying up the seed that the others drop quietly and invisibly doing there jobs. occasionally if she is feeling safe little miss jenny wren will flit in for a brief visit but you have to be watching as her shyness soon takes over and her bravery crumbles as she rushes back to the hide in the bushes again.

google and i spend a lot of the day watching the birds in our garden enjoying there presence and sharing in there song.

Tuesday, 2 February 2010

google poorly...

this week has been very hard not because of my M.E. but because my constant companion the holder of my sanity of those days where life is just to hard is ill. on sunday evening i noticed he was struggling to get up the stairs in our usual race that he wins as i find him laid on my bed with his tail wagging and eyes shining looking at me at though to say 'ware you been ive been waiting for you!'

as i checked his legs i notices a swelling on his back leg and a small bite mark. we went to sleep as i had told him that maybe all he needed was rest. but when i got up in the morning his leg was so swollen you could not say where his foot started. i rang the vets and got him an appt planning on taking him on my scooter all the way to deeping the furthest i have been in months. but was unable to find the keys for the garage. thankfully i have a fantastic neighbor and friend who took us.

the vet said google had a temp and an infection in his leg most probably caused by a cat bite, he had 2 injection straight away and was given two lots of antibiotics and an anti inflammatory. and one of those horrible collars that look like a lamp shade. i had to take him back on wednesday with a promise that if he got any worse i would bring him straight back.

he has taken his meds like the fantastic boy he is and the swelling is nearly gone but it obviously still hurts as every now and then he yelps,

google being ill raised so many feelings that i was not sure i could cope. it totally wiped me out. the fear of loosing my constant companion was real, i could taste the grief and sadness. it may seem dramatic and silly but he is my salvation my companion, he asks nothing from me but give me every thing. i am never alone while he is with me. im so glad the meds are working.

today google got a get well card from one of my foggy friends where i posted that he was ill and had 20 people sending him hugs and get well messages. to you this might seem sad, a bunch of people that have nothing better to do, but to me it showed how much those of us that are house bound by illness have come to rely on our pets. we have done what all the animal trainers not do we have made our animals into people with human attributes thought and feeling. they partake in our on line conversations, as we share them with others that are also sat behind closed doors forgotten by the world and cut off from normality.

without google im not sure i would have made it this far my family are great and they love and care for me with out condition. but google is different he is just completely love and understanding.

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