this is a question that i often ask why me? why my life?
the problem is there are no answers. i have no idea if this is a punishment for something that i did in my past that i cant even remember. i would hate to think that im being punished for something i dont know about cos if i did then fine i deserve what ever but if not then why me what did i do to end up like this!
but more to the point what did my family do to have to suffer alongside me to watch my pain and my forgetfulness, to have to share my broken half life existence.
why my life? why was i stopped just as i was getting it together and heading out to a worthwhile career that would have helped my family financially.
why am i now living a strange half existence on the edge of the life not fully able to participate any longer. im broken but no one seems to know how to fix me there are no new parts, or magic pills, they cant even say that in time it will change they dont know!
i hate feeling so useless and dependent, the fear of being left behind as i cant keep up is more than i can bare some days, i was an independent strong woman with a direction in life and goals, now thats all a distant dream one that i can no longer participate in or hope to take part in.
why me? why M.E? why?
Tuesday 24 November 2009
Wednesday 18 November 2009
payback
payback is one of the most cruel aspects of this illness any time you do anything thats off routine even if you have prepared for it you are punished by an exacerbation of symptoms this does not happen the next day but 2 days later and will last as long as it pleases so every bit of fun that you have is payed for twice over!
as you will know from my blog i went out on sat and had a great time, but what you dont know it how much prep went in to going and what the payment for having fun has been.
to prepare for my fab night out the week before i restricted my activities and stayed in no outings on my scooter! no trying to do more than i should i paced my activities carefully and included more rest periods in my week (rest in pacing means doing nothing not tv no reading no noise just laying down doing nothing) and doing that allowed me to stay up passed my bed time (7pm ish) to spend time with friends having lots of fun.
how ever even though i had been good and saved up my energy for the outing i still used more than i had so here comes the payback, it did not start till Sunday evening and by then i was finding it hard to follow a conversation. the pain that i have had doubled and the fatigue was such that i could not sleep! this may sound strange that i was so tired i could not sleep but this is common with m.e and until you realize that it takes energy to sleep and i have none left at all its a hard thing to get your head round. monday i spent the day in a daze and by lunch time was in bed again unable to cope. by tea time i took a sleeping pill in the hope that i would at least get some sleep even if its chemically induced but it took another 6 hours for that to happen during which point i got so confused i could not remember where my hubby was or hole a conversation with my mum when she rang. i woke on tuesday morning feeling like i had a god almighty hangover and spent the morning sat in my chair staring out in to space thank goodness for the internet as by lunch i was feeling sorry for my self and i needed company which is not easy when you are stuck indoors and everyone is at work. so foggies to the rescue! the tesco man came they are so good and he unloaded it all for me into the kitchen separating the frozen and fridge from the rest. it took me 2 hours to put the shopping away which i had no quite finished when hubby got up and found me asleep on the sofa!
so here i am wednesday and other than the pain i have my brain back and am back at status quo
i tried to describe the fatigue to my gp once and its sort of like trying to walk through a swimming pool full of treacle with lead weights attached to your limbs and a rope tied to your waist that is pulling you backwards, ans trying to think is like driving on one of those very foggy mornings where you cant see the road and there are no lights in front of you to follow as you crawl along unsure or where you are or how much further you have to go!
the pain when i tried to explain that is difficult as i have tow types the all encompassing ache that you get after you have done some sort of different exercise is there all the time it is deep in the bone constant it doe not come is waves but floods my my body like the cold does on a winter day. but for me it is accompanied by something that is harder to deal with i have sharp searing pains in my neck shoulders ribs lower back and hips that feel like i have been stung hundreds of times in the same spot when i stand hot searing pain shoots up my legs like fireworks spraying out into the night sky. leaving me gasping the pain causes my muscles to spasm restricting movement and causing more pain.
these are my companions on the days of payback and these are the things that pacing is supposed to help with, if you get it right there should be no change in your symptoms they should remain constant and yes they do the only problem is how do you cope with getting up at 8am sitting in your chair knowing that you can go on the computer for a couple of hours, maybe dust the lounge and help prepare the veg and thats it till you got to bed at 7pm every day, if you have a bath then you wont be able to help with dinner, every thing becomes a trade off. this does not allow for fun or the trips to the dr or just going out to be part of the world, no it allows you live on the edge never part of it watching everyone else running around while your life grounds to a halt.
so every now and then no matter what the cost i decide to live, to go out and be part of the real world and sod the payback!!!
as you will know from my blog i went out on sat and had a great time, but what you dont know it how much prep went in to going and what the payment for having fun has been.
to prepare for my fab night out the week before i restricted my activities and stayed in no outings on my scooter! no trying to do more than i should i paced my activities carefully and included more rest periods in my week (rest in pacing means doing nothing not tv no reading no noise just laying down doing nothing) and doing that allowed me to stay up passed my bed time (7pm ish) to spend time with friends having lots of fun.
how ever even though i had been good and saved up my energy for the outing i still used more than i had so here comes the payback, it did not start till Sunday evening and by then i was finding it hard to follow a conversation. the pain that i have had doubled and the fatigue was such that i could not sleep! this may sound strange that i was so tired i could not sleep but this is common with m.e and until you realize that it takes energy to sleep and i have none left at all its a hard thing to get your head round. monday i spent the day in a daze and by lunch time was in bed again unable to cope. by tea time i took a sleeping pill in the hope that i would at least get some sleep even if its chemically induced but it took another 6 hours for that to happen during which point i got so confused i could not remember where my hubby was or hole a conversation with my mum when she rang. i woke on tuesday morning feeling like i had a god almighty hangover and spent the morning sat in my chair staring out in to space thank goodness for the internet as by lunch i was feeling sorry for my self and i needed company which is not easy when you are stuck indoors and everyone is at work. so foggies to the rescue! the tesco man came they are so good and he unloaded it all for me into the kitchen separating the frozen and fridge from the rest. it took me 2 hours to put the shopping away which i had no quite finished when hubby got up and found me asleep on the sofa!
so here i am wednesday and other than the pain i have my brain back and am back at status quo
i tried to describe the fatigue to my gp once and its sort of like trying to walk through a swimming pool full of treacle with lead weights attached to your limbs and a rope tied to your waist that is pulling you backwards, ans trying to think is like driving on one of those very foggy mornings where you cant see the road and there are no lights in front of you to follow as you crawl along unsure or where you are or how much further you have to go!
the pain when i tried to explain that is difficult as i have tow types the all encompassing ache that you get after you have done some sort of different exercise is there all the time it is deep in the bone constant it doe not come is waves but floods my my body like the cold does on a winter day. but for me it is accompanied by something that is harder to deal with i have sharp searing pains in my neck shoulders ribs lower back and hips that feel like i have been stung hundreds of times in the same spot when i stand hot searing pain shoots up my legs like fireworks spraying out into the night sky. leaving me gasping the pain causes my muscles to spasm restricting movement and causing more pain.
these are my companions on the days of payback and these are the things that pacing is supposed to help with, if you get it right there should be no change in your symptoms they should remain constant and yes they do the only problem is how do you cope with getting up at 8am sitting in your chair knowing that you can go on the computer for a couple of hours, maybe dust the lounge and help prepare the veg and thats it till you got to bed at 7pm every day, if you have a bath then you wont be able to help with dinner, every thing becomes a trade off. this does not allow for fun or the trips to the dr or just going out to be part of the world, no it allows you live on the edge never part of it watching everyone else running around while your life grounds to a halt.
so every now and then no matter what the cost i decide to live, to go out and be part of the real world and sod the payback!!!
Sunday 15 November 2009
i went out like a grown up!
last night for the first time in months i went out in the evening for a meal, a grown meal at a grown up time with adults. it was fantastic to spend time with my friends and my husband i had an amazing meal, and would recommend going to Chesters in market deeping to any one living near by.
i was able to stop till the end not having to make excuses to leave early, thanks to the pain killers and a fab husband i only needed my stick as well so it really helped my self esteem and cos everyone knows me no one asked how i was feeling or what i was getting up now days thay just all welcomed me as though they spoke to me every day making me feel normal.
this morning im tired and a bit shakey i hurt a bit but i know it will get worse but it will be worth every moment because last night made me feel like part of the world again.
i laughed and giggled with my friends i felt like my old self for just a few hours no one made me feel ill or looked at me as though i was broken, and yes i paced all week i rested being carefull not to do to much yesterday i got up late, and then went back to bed in the afternoon to rest again, yes i had pain but none of that mattered because last night i felt normal for a few hours!
i was able to stop till the end not having to make excuses to leave early, thanks to the pain killers and a fab husband i only needed my stick as well so it really helped my self esteem and cos everyone knows me no one asked how i was feeling or what i was getting up now days thay just all welcomed me as though they spoke to me every day making me feel normal.
this morning im tired and a bit shakey i hurt a bit but i know it will get worse but it will be worth every moment because last night made me feel like part of the world again.
i laughed and giggled with my friends i felt like my old self for just a few hours no one made me feel ill or looked at me as though i was broken, and yes i paced all week i rested being carefull not to do to much yesterday i got up late, and then went back to bed in the afternoon to rest again, yes i had pain but none of that mattered because last night i felt normal for a few hours!
Thursday 12 November 2009
burocracy
it makes me so cross the hassle that the government put its ill and disabled voter through to get the help that they need.
it has taken a year to get disability living allowance this is because for some reason .M.E on its own is not enough of a reason you have to be so severly affected that you cant walk or look after yourself at all to qualify.
not only do thay need your statement but also from your GP and any other medical professional that you come into contact with to help prove your case and even then they can turn you down for not answering a question right or getting the date wrong. (baring in mind that those that fill these forms in are ill)
then when your pay stops you have to apply for ESA this is not only and inadequate benefit on which to support your family but also infuriatingly difficult to get. you are made to feel like you are waisting there time and are scum. you are treated as though you are an idiot and as though you have deliberately made yourself ill. the worst bit is the medical a medical that i hasten to add take no notice of your diagnosis or any medical reports you take in. they dont care about what you cant do and are only interested in what you can do and not what the effect may have on you. if you are lucky you might get a Dr that speaks english and maybe even understand a little of what you say but dont bet on it. then after the medical that makes you feel dirty and as though you are lying you have to wait for them to decide if you can have the benefit thats purpose is to help those that are to ill to go to work. your gp may be signing you off work as unfit your consultant may say that you are not fit to work. but that does not mean that you will get this benefit!!
it was determined that i was fit to attend what they call work focused interviews that are designed to get you back to work. i am still employed by my place of work and am on the long term sick, occupational health have determined that i will not be fit to work and may never be able to return to work again. but still i have to go and sit to some woman ask me what is stopping me from going to work as i sit in my wheel chair unable to walk, to cook a meal completely for my self, clean my house, and i look at her and say my health. after attending one of those meeting it take me a week to recover.
apparently having M.E and being unable to walk does not qualify me for a blue badge either as according to there rules m.e in its self is not a reason to require a blue badge no matter how sever the ilness has on your mobility.
eventually the DLA decide that i am unable to mobalize and therefor need high mobility and that the inability to cook a meal on my own means that i require low level care. because the DLA has given me high mobility i can now have the blue badge that i was already turned down for!
the best thing is that the benefit agency's do not talk to each other so one can decide that yes you are significantly disabled and the other may decide that you are fit for work!!
this is not where i intended to be i was planning on doing my teacher training and working, i had a job i had a social life i had self respect that has all disappeared due to this illness and the way that the benefit agency's treat you.
it has taken a year to get disability living allowance this is because for some reason .M.E on its own is not enough of a reason you have to be so severly affected that you cant walk or look after yourself at all to qualify.
not only do thay need your statement but also from your GP and any other medical professional that you come into contact with to help prove your case and even then they can turn you down for not answering a question right or getting the date wrong. (baring in mind that those that fill these forms in are ill)
then when your pay stops you have to apply for ESA this is not only and inadequate benefit on which to support your family but also infuriatingly difficult to get. you are made to feel like you are waisting there time and are scum. you are treated as though you are an idiot and as though you have deliberately made yourself ill. the worst bit is the medical a medical that i hasten to add take no notice of your diagnosis or any medical reports you take in. they dont care about what you cant do and are only interested in what you can do and not what the effect may have on you. if you are lucky you might get a Dr that speaks english and maybe even understand a little of what you say but dont bet on it. then after the medical that makes you feel dirty and as though you are lying you have to wait for them to decide if you can have the benefit thats purpose is to help those that are to ill to go to work. your gp may be signing you off work as unfit your consultant may say that you are not fit to work. but that does not mean that you will get this benefit!!
it was determined that i was fit to attend what they call work focused interviews that are designed to get you back to work. i am still employed by my place of work and am on the long term sick, occupational health have determined that i will not be fit to work and may never be able to return to work again. but still i have to go and sit to some woman ask me what is stopping me from going to work as i sit in my wheel chair unable to walk, to cook a meal completely for my self, clean my house, and i look at her and say my health. after attending one of those meeting it take me a week to recover.
apparently having M.E and being unable to walk does not qualify me for a blue badge either as according to there rules m.e in its self is not a reason to require a blue badge no matter how sever the ilness has on your mobility.
eventually the DLA decide that i am unable to mobalize and therefor need high mobility and that the inability to cook a meal on my own means that i require low level care. because the DLA has given me high mobility i can now have the blue badge that i was already turned down for!
the best thing is that the benefit agency's do not talk to each other so one can decide that yes you are significantly disabled and the other may decide that you are fit for work!!
this is not where i intended to be i was planning on doing my teacher training and working, i had a job i had a social life i had self respect that has all disappeared due to this illness and the way that the benefit agency's treat you.
Friday 6 November 2009
hapiness is a good nights sleep
it amazes me how we underestimate what sleep does for us. as a young adult i regularly partied through the night and functioned on no sleep of less that 4 hours for weeks at a time as a mum i was woken frequently to care for my children with night feeds and sickness not once did i feel that i was missing something vital. when i went back to work my days were filled with activity that often meant me getting up at 5.30 to do house work before i went into work, then on top of this i decided to do a degree so this again ate into the amount of time i was able to sleep as working full time studying and looking after a house and family do not leave much time for sleep especially if like me you want to do all of them to the best of your ability!
i never really noticed the lack of sleep or how tierd i was it was just part of living now and being a woman who wanted it all. eventually it took a toll on my health till i am where i am today. now i know the importance of sleep having just spent the last two months with no more that an hour at most of uninterrupted sleep due to pain what a difference on full nights sleep can do. iver the last few weeks i have been getting grumpier and more frustrated as both the pain and the tiredness take over my life its all i could think about every movent hurt, and just staying in one position hurt to the point where i could not get comfy pain killer and sleeping pills were not making a difference as a still woke up every time i or my husband moved.
all i wanted was to sleep and to have less pain i did not even want to be pain free as that seemed like an unreal dream having lived in constant pain for the last two years. in the end after asking my gp for help i go back to my consultant and use my mum (she was a nurse at the gp practice) to come with me to get them to listen and take me seriously. yesterday i was prescribed some new meds by lunchtime i could feel the muscle spasms im my back starting to release last night i took my cocktail of sleeping and pain meds and i slept for 8 long hours of uninterrupted sleep. i have woken this morning still in pain but i feel able to cope thats what the sleep has done it has given me back the ability to cope.
sleep therefor is the rout to happiness as it gives you the ability to see the positive and cope. i can cope with the pain today and tomorrow if i get to sleep at night its not much to ask is it to sleep its all i need to make me happy !!
i never really noticed the lack of sleep or how tierd i was it was just part of living now and being a woman who wanted it all. eventually it took a toll on my health till i am where i am today. now i know the importance of sleep having just spent the last two months with no more that an hour at most of uninterrupted sleep due to pain what a difference on full nights sleep can do. iver the last few weeks i have been getting grumpier and more frustrated as both the pain and the tiredness take over my life its all i could think about every movent hurt, and just staying in one position hurt to the point where i could not get comfy pain killer and sleeping pills were not making a difference as a still woke up every time i or my husband moved.
all i wanted was to sleep and to have less pain i did not even want to be pain free as that seemed like an unreal dream having lived in constant pain for the last two years. in the end after asking my gp for help i go back to my consultant and use my mum (she was a nurse at the gp practice) to come with me to get them to listen and take me seriously. yesterday i was prescribed some new meds by lunchtime i could feel the muscle spasms im my back starting to release last night i took my cocktail of sleeping and pain meds and i slept for 8 long hours of uninterrupted sleep. i have woken this morning still in pain but i feel able to cope thats what the sleep has done it has given me back the ability to cope.
sleep therefor is the rout to happiness as it gives you the ability to see the positive and cope. i can cope with the pain today and tomorrow if i get to sleep at night its not much to ask is it to sleep its all i need to make me happy !!
Monday 2 November 2009
how?
how?
this is a question and a half, how do you feel is something im asked every day how do i answer with the truth, rarely with a standard ok that tells you nothing!
how do i cope with feeling like this? i dont know im not even sure that i am coping!
how much help do i get? my family is great but medically it is as though i have dropped in to a black whole since diagnosis!
how do i tell people what wrong when they see me sat in my scooter? this is the question i avoid, m.e isnt that just like having flue! im told oh you get better from that! and you see them look at you and decide that you are lazy!
how do i spend my day? wishing it away! no i spend my day struggling to do the odd job so my family doesn't have to and chatting to others on my computer that i have never met that have the same problem and now understand me more than i do myself some days!
and how i wish i would get better.....
this is a question and a half, how do you feel is something im asked every day how do i answer with the truth, rarely with a standard ok that tells you nothing!
how do i cope with feeling like this? i dont know im not even sure that i am coping!
how much help do i get? my family is great but medically it is as though i have dropped in to a black whole since diagnosis!
how do i tell people what wrong when they see me sat in my scooter? this is the question i avoid, m.e isnt that just like having flue! im told oh you get better from that! and you see them look at you and decide that you are lazy!
how do i spend my day? wishing it away! no i spend my day struggling to do the odd job so my family doesn't have to and chatting to others on my computer that i have never met that have the same problem and now understand me more than i do myself some days!
and how i wish i would get better.....
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