It is confession time.....
Feeling extremely stressed this morning ( another rubbish sleep, still under house arrest, feeling like something being emmitted from a pig with the squits, no sign of pain meds that actually WORK (!)….etc., etc.…) At 7.30 this morning,I did the unthinkable and ate not one but TWO shortbreads….two of the little devils and they were NOT GLUTEN FREE!!!!!
I know- you despise me, but please hang in there I am not the monster (Cookie Monster..?!) you imagine.
Or maybe, just maybe. you are reading this thinking- ‘..So she ate two biscuits, that is hardly a tragedy.’ But this is how every aspect of life has become for me. At the moment ME is the puppet master my strings so I have to be: ‘careful’, ‘sensible’ ‘think ahead’ and be ‘well paced’ . Actually this is a rather long moment.
I am slap bang, in the middle of a flare- up that started just after Christmas, and has rapidly turned me from someone who could go out a couple of times a week (by car or scooter), and got dressed every day, to someone who feels so lousy she lies in bed for the duration, and just isn’t well enough to be up- or out. This situation is a fraught one- in my journey with chronic illness there have been times when I have been really really unwell in the short term, but things have calmed down in the longer term...and there have been times where I just got worse. I have no way to know which of these this is.
Without cure, without effective treatment or pain medication, the future seems at best daunting, and one way of dealing with this, is to focus on the things we have some authorship over. This enables us to feel that we are doing all we can ...BUT to be honest folks, some days I feel like Nero doing a violin solo whilst Rome smoulders in the background. Can a couple of biscuits be all that is standing between me and good health?
How much time does one allot to ‘things I do because illness motivates me’ versus ‘living whatever is left of my life with as much moxy as I can’? This may sound like a ridiculous question as obviously it IS hard work just being this sick- it pretty much takes up the day just making sure I take my meds, have some semblance of cleaning myself ( wet wipes probably), and changing my daily PJ’s for night-time ones...not to mention eating, Dr s appointments, ordering prescriptions and dealing with the social security system….and of course catching up on the latest ME and pain research...
Would there be more benefit in just using the time and energy we use trying to make minuscule improvements, in thinking less about being ill, and more about things that give us...well, JOY ? ( spoiler alert- I just don’t know the answer). For example at present in addition to my meds, I am taking: electrolytes, burning lavender oil, having rescue remedy ( for those ‘beam me up Scotty moments), taking arnica, eating gluten free, avoiding sugar, avoiding processed food and caffeine….also keeping a daily diary of symptoms, pacing myself…. initially, I happily got on board and bought the ticket for all of these helpful things ( I have left out the mammoth list of things that I have tried that didn’t help at all.)
I am sure I would be worse without all of the above...but not THAT much worse. The frustration lies in that for SO much effort – I am still really sick.
I still read stuff about things to eat/not eat in order to be a glowing picture of good energy and health. I just cannot shake the feeling that if Science is failing us then, food folk law and esoteric cures are failing us even more: they are stealing our hope- and our cash- in return for dreams that don’t deliver.
Feeling extremely stressed this morning ( another rubbish sleep, still under house arrest, feeling like something being emmitted from a pig with the squits, no sign of pain meds that actually WORK (!)….etc., etc.…) At 7.30 this morning,I did the unthinkable and ate not one but TWO shortbreads….two of the little devils and they were NOT GLUTEN FREE!!!!!
I know- you despise me, but please hang in there I am not the monster (Cookie Monster..?!) you imagine.
Or maybe, just maybe. you are reading this thinking- ‘..So she ate two biscuits, that is hardly a tragedy.’ But this is how every aspect of life has become for me. At the moment ME is the puppet master my strings so I have to be: ‘careful’, ‘sensible’ ‘think ahead’ and be ‘well paced’ . Actually this is a rather long moment.
I am slap bang, in the middle of a flare- up that started just after Christmas, and has rapidly turned me from someone who could go out a couple of times a week (by car or scooter), and got dressed every day, to someone who feels so lousy she lies in bed for the duration, and just isn’t well enough to be up- or out. This situation is a fraught one- in my journey with chronic illness there have been times when I have been really really unwell in the short term, but things have calmed down in the longer term...and there have been times where I just got worse. I have no way to know which of these this is.
Without cure, without effective treatment or pain medication, the future seems at best daunting, and one way of dealing with this, is to focus on the things we have some authorship over. This enables us to feel that we are doing all we can ...BUT to be honest folks, some days I feel like Nero doing a violin solo whilst Rome smoulders in the background. Can a couple of biscuits be all that is standing between me and good health?
How much time does one allot to ‘things I do because illness motivates me’ versus ‘living whatever is left of my life with as much moxy as I can’? This may sound like a ridiculous question as obviously it IS hard work just being this sick- it pretty much takes up the day just making sure I take my meds, have some semblance of cleaning myself ( wet wipes probably), and changing my daily PJ’s for night-time ones...not to mention eating, Dr s appointments, ordering prescriptions and dealing with the social security system….and of course catching up on the latest ME and pain research...
Would there be more benefit in just using the time and energy we use trying to make minuscule improvements, in thinking less about being ill, and more about things that give us...well, JOY ? ( spoiler alert- I just don’t know the answer). For example at present in addition to my meds, I am taking: electrolytes, burning lavender oil, having rescue remedy ( for those ‘beam me up Scotty moments), taking arnica, eating gluten free, avoiding sugar, avoiding processed food and caffeine….also keeping a daily diary of symptoms, pacing myself…. initially, I happily got on board and bought the ticket for all of these helpful things ( I have left out the mammoth list of things that I have tried that didn’t help at all.)
I am sure I would be worse without all of the above...but not THAT much worse. The frustration lies in that for SO much effort – I am still really sick.
I still read stuff about things to eat/not eat in order to be a glowing picture of good energy and health. I just cannot shake the feeling that if Science is failing us then, food folk law and esoteric cures are failing us even more: they are stealing our hope- and our cash- in return for dreams that don’t deliver.
