this is hard to write-hard because its about the real me, not the alternate me that comes across in my blog.
sometimes this me comes across in my 'warm blankets' blog-but slightly-not in a nitty gritty way.
well, because of the campaign started by
broken of britain in response to the cuts brought about by our government i thought i would write this and write it as if none of you know about my problems.
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i was diagnosed with M.E/CFS early in 2005 after a year of assorted illnesses-infections etc.
i was lucky enough, after being fobbed off many times with 'oh you have flu', to see a different doctor, who after listening to my horrendously long list of ailments/problems, suggested i had M.E.
he had worked with the consultant who fought to have M.E recognised as a serious, long term illness and so was very supportive.
he sent me for the blood tests that would rule out any other illness, sent me to an M.E specialist at a local hospital whose confirmation allowed me to attend a specialist self help group for six months.
from the beginning i was not able to work-imagine having flu or a very bad cold all of the time...then add a few more problems...problems that never go away, just vary from day to day, hour to hour...
~poor short term memory.
~poor concentration...the wonderful brain fog!
~headaches which range from mild to severe migraine.
~constant tiredness-not the 'its been a long day i am a bit tired' type but a constant dragging tiredness that does not go away even with a nights sleep.
~every morning waking as if you have had no sleep-even when you have.
~every action making the tiredness worse...even having conversations with people and being in a group makes me so tired.
~periods of insomnia broken with periods of almost constant sleep.
~difficulty finding the right words and problems organising thoughts... often i end up having to describe the item i am trying to find words for or will lose my words in the middle of sentences.
~poor temperature control, sweating, dizziness and difficulties with balance, my spatial awareness is affected so i had to give up driving-an activity i loved.
~sensitivity to bright lights, noise and odours...just lately the smell of cooked food has been making me very nauseous and so been living on raw vegetables and bread rolls. of course i cannot expect swampy to do the same to still keep feeling nauseous.
~painful glands in my armpits and neck.
~weakness
~anxiety
...there is more...of course
of course any other illness i have makes it worse.
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for a year or so i thought i had been getting worse, much worse.
i started to have pains in my arms, legs, hands, feet, all of my joints~ that i never had before, pains that meant walking had become more exhausting and painful and at nights i couldn't sleep for the pain and would lay moving a hot water bottle from limb to limb.
when the pain finally made me cry i went to see my doctor and described it as feeling as if the pain came from deep inside my bones and joints and spread outwards and the soles of my feet as if they had been repeatedly hit with a stick.
off i went for blood test after an examination and was duly diagnosed with
fibromyalgia-some doctors lump M.E and fibro as one problem, mine regards it as two problems with some overlap.
as well as the pains i have mentioned i am much more sensitive to pain-even the smallest knock or bump causes me pain-even, believe it or not, scratching myself-how silly does that sound?!
every day is a struggle, some days more than others.
i feel in a catch 22 situation sometimes for i need to keep my blood sugar levels down and cholesterol low and this is hard to achieve without exercise.
as you know my exercise is a walk with swmapy and flynt on the days i can manage it.but even then everything hurts.
the other day swampy took me to hobbycraft-every hole and bump we drove over jarred me so much and getting out of pretty pagan as my first foot touched the ground the sharp, shooting pain that exploded out of my foot hurt so much i couldn't move...
even lifting a kettle hurts...
some days even holding a book hurts...
some days even talking takes too much effort...
the days i cannot even go for a short walk are the days i do not have the energy to get dressed properly and so spend the days in my 'comfy' trousers-really pyjama trousers i use for everyday wear.
my feet hurt so badly i wear my birkenstocks 99% of the time and have done throughout the winter with warm socks.
but you know i do things, of course i do, as do the millions of other unwell folk out there~i read, crochet when i can hold a hook and yarn, blog, even go 'camping' in pretty pagan occasionally~oh i dream of the days where it seemed we were off camping every weekend during the good weather!
of course i do things, if i didn't i would go insane or at least revisit the depressions of the past~are we expected to sit like immovable lumps day after day?
~*~*~*~
so where am i going with this?
this is just me~through various forums and from friends i am aware of the problems than many, many people live with daily~not only through their illness but in living in general and its for these people i am writing this today.
my problems just give you a taster, so to speak, of what people live with.
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many people face problems with money and hate crimes because of their illness/disability.
both M.E and fibro are essentially 'invisible' illnesses as are many other conditions and many of those have found, people can be cruel in what they say and yes, even think we are liars.
much
blame can be directed towards the media, who in appalling reporting, classes those people who are ill/disabled with the general unemployed and describe all of those unemployed as 'benefit scrounging scum'-how charming- not the be confused with very good
blog of the same name.
so here we have a society where all unemployed are lumped under one mean banner~but yes there are scroungers out there, i remember too well a tv interview with a young, unemployed lad, who left school with no qualifications, who constantly refused work because he considered he was too good for the jobs on offer and wanted more money to work.
our society, with the help of the media and our government has created a culture where people who are disabled and have genuine health problems are ashamed and scared of being labeled as scroungers and so do not talk about their problems.
now those who suffer disabilities and long term chronic illness have to face the fact that the government, in order to save money, are cutting essential benefits left right and center and making the medicals more difficult for people, ignoring the reports of individuals own gp and specialists, changing the boundaries to make these people 'fit for work'.
how long do they think people with a long term chronic condition will be able to hold down a job if they have been passed 'fit for work' by the unqualified people they use to conduct medicals?
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it makes the heart sink that this is happening
when the likes of bank managers are awarded multi-million pound bonus, that companies avoid paying tax and are not chased for it by the government~vodaphone for example was 'let off' paying £6 billion in tax while the government are cutting £7 billion in benefits to the sick,even george osbourne is indulging in tax avoidance~
38 Degrees
our government does not think in human terms when coming up with their plans.
in fact i think they are on another planet all together when we hear this now tired saying...
'we are all in this together'
no we are not all in this together!
will those mp's~i am looking at you now messers cameron and clegg~suffer the way the poorest in society will in this land of high prices, increased fares on public transport, pay freezes and rising unemployment.
can you imagine them each week, feverishly sitting down to work out how to budget their money for the week/month?
do you think they sit there and decide which bill not to pay in favour of paying their rent/mortgage? or not to pay for essential prescriptions in favour of food or cutting down on food in order to pay their prescription charges~no they do not.
we are all in this together~what utter bunkum
how do they think these folk, any folk who are unemployed or on low wages, will be able to maintain their homes and pay the bills-do they forget that whatever your condition, working or not, everyone (unless you are homeless) has to pay bills such as water, gas, electric, telephone (if you have one), tv licence, buy food, petrol and in many cases pay mortgage, rent and council tax.
~*~*~*~
i have a hope deep inside of me that the winter solstice of 2012 will be a turning of a page, that this is the time when society will turn away from greed and unkindness and start to heal both itself and the world...its a better idea than Armageddon isn't it?
...i have to say because of all of the problems i have this has taken me four days to complete!
