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.