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.