It's been a very long haul since the last time I felt able to write a post. My life seems to have been taken over by a very exhausting and largely unnecessary situation which is not easy to blog about.
I would love nothing more than to tell all, and share how difficult things can be for PWME who also work, but I'm scared that blogging about it may compromise myself and my situation at the moment. It REALLY doesn't need any more complicating!
So, I think I'm on safer ground telling you how my health is being affected by the 8 month ordeal (so far!) that I find myself staggering through - utterly mentally, emotionally and physically exhausted-!
A lot of added stress is being placed upon me by a boss and a situation, despite advice from medical practitioners, and the situation just goes on. I have been left striving to continue to do my job, giving 100% as I always do. This has not only halted my recovery from the ME/CFS crash that happened a year ago, but has reversed it somewhat.
My body has been less mobile, more painful and on the whole plain old 'doddery-er' than at any time I've been at work. I often drag my legs, stumble, lose balance, shake and can have very painful muscle spasms to contend with, whilst trying to maintain myself and my work persona.
My heart rate has been all over the place, and light and sound sensitivity have threatened to put me on my back more than once. The heavy dragging emptiness of the fatigue (many elephants worth!) is sometimes overwhelming, but me and the herd, we fight on!
Mentally and cognitively the challenges are ELEPHANT SIZED too! I am having to try to keep 'he said this' and 'she said that' all in my head and talk about them with some kind of fake confidence. I am trying to keep written records of key conversations but even committing them to paper is an ordeal that leaves 'elephant footprints' on my brain.....destroying it for the rest of the day!
Face to face meetings about contracts and grievances are horribly difficult to be in. Not only is there the stressful situation, but I am having to keep attention, understand and think through points with little or no support from others. I am under pressure to be able to respond with correct, meaningful words and facts in a confident and positive way. Not always possible for me, and certainly not easy even on the best of days!
My emotions are all over the place-am i able to cope for the next minute, hour, day or week? Is my energy going to hold out for this meeting, or this phone call? How long can i continue to go on like this before i am totally wiped and back on full time sick leave again? Is this what would make some people happy? Endlessly being kept in the dark is also taking an emotional toll.
Please forgive the indulgent 'offloading' that just got in the way of what could have been an informative and interesting post! Maybe when my body, heart and head can relax a little more I'll be able to create one!
Showing posts with label relapse. Show all posts
Showing posts with label relapse. Show all posts
Wednesday, 17 November 2010
Monday, 13 September 2010
Doh!
Ok, time I came clean about why I'm feeling a bit down at the moment.
Most of my 10 years of elephant carrying has been fairly predictable. After an initial year spent bed/housebound I made it back to a level of functioning which allowed me to work, and even attempt a degree course (which I was unable to finish I'm afraid!).
I mostly poddled along day to day, coping with my symptoms and limitations as best I could. These were at times quite debilitating, but occasionally I managed periods of relative wellness, (it's ALL relative isn't it?) at one point I even managed a trip to Mongolia and rode horses for days on end!
At some point in each of the last 10 years I have had a relapse, crash, setback, whatever you call it, it's the same old beast! These crashes have always been debilitating, disabling, difficult to manage, mood-shattering, and above all scary. Who's to say how long you'll be feeling this way, and what happens to family life, work and all those other commitments whilst you are unable to contribute? Your daily energy, health and resilience reduced to a fraction of what it was just weeks before.
These relapses have meant I needed months off work, only able to return when I felt it was possible. Work were always understanding, and some semblance of a normal life (whatever that is?) could be resumed. This last 'crash' has been quite different however and has opened up a whole new set of worries for me.
In October last year I had an accident, and a week or so after that my latest relapse started to kick in. My injuries made it hard to lie or sit down, so in the initial period after the accident I was not able to rest as I would have been doing normally. As I write this and read it back I am beginning to see how stupid I was to be surprised I had a relapse..... injury then no rest...."Doh!"
Still, I had an initial month off work and a 'managed' phased return to work was agreed and started. Yes, I know it makes no sense NOW! Just a month off for a ME/CFS crash! I thought that the slow and steady return to work was going to be the best option and I stand by that...... but I should have been healthier and taken more time to recover before trying it!
Since December's return to working just two part mornings a week, I have strived to do as many hours as I can. I have spent each week pushing myself to up my hours and return to a full working week as I have always done. It has been nearly a whole year since this ME/CFS relapse started and although I have had some good days, it shows no signs of lifting and allowing me to settle back into my limited but fairly stable existence. I can manage working part time, but it is eating up my energy, and my life out of work is suffering to the point that it often becomes extinct!!!
I pushed myself constantly over this last year, and I can't help but wonder that if I'd not done so, would I have managed to return to work better and more fully than now? I don't know, but I DO KNOW how sick I feel almost all the time of late. Whether I'm at work or at home.
So now for the honest and heart-on-my-sleeve bit........ I am inevitably starting to ask myself difficult questions. Is this it for me now? Is this level of health/sickness my new 'norm'? Can I return to how I was this time last year, and manage to work as before?
Having a crisis of 'positive thinking'!
Most of my 10 years of elephant carrying has been fairly predictable. After an initial year spent bed/housebound I made it back to a level of functioning which allowed me to work, and even attempt a degree course (which I was unable to finish I'm afraid!).
I mostly poddled along day to day, coping with my symptoms and limitations as best I could. These were at times quite debilitating, but occasionally I managed periods of relative wellness, (it's ALL relative isn't it?) at one point I even managed a trip to Mongolia and rode horses for days on end!
At some point in each of the last 10 years I have had a relapse, crash, setback, whatever you call it, it's the same old beast! These crashes have always been debilitating, disabling, difficult to manage, mood-shattering, and above all scary. Who's to say how long you'll be feeling this way, and what happens to family life, work and all those other commitments whilst you are unable to contribute? Your daily energy, health and resilience reduced to a fraction of what it was just weeks before.
These relapses have meant I needed months off work, only able to return when I felt it was possible. Work were always understanding, and some semblance of a normal life (whatever that is?) could be resumed. This last 'crash' has been quite different however and has opened up a whole new set of worries for me.
In October last year I had an accident, and a week or so after that my latest relapse started to kick in. My injuries made it hard to lie or sit down, so in the initial period after the accident I was not able to rest as I would have been doing normally. As I write this and read it back I am beginning to see how stupid I was to be surprised I had a relapse..... injury then no rest...."Doh!"
Still, I had an initial month off work and a 'managed' phased return to work was agreed and started. Yes, I know it makes no sense NOW! Just a month off for a ME/CFS crash! I thought that the slow and steady return to work was going to be the best option and I stand by that...... but I should have been healthier and taken more time to recover before trying it!
Since December's return to working just two part mornings a week, I have strived to do as many hours as I can. I have spent each week pushing myself to up my hours and return to a full working week as I have always done. It has been nearly a whole year since this ME/CFS relapse started and although I have had some good days, it shows no signs of lifting and allowing me to settle back into my limited but fairly stable existence. I can manage working part time, but it is eating up my energy, and my life out of work is suffering to the point that it often becomes extinct!!!
I pushed myself constantly over this last year, and I can't help but wonder that if I'd not done so, would I have managed to return to work better and more fully than now? I don't know, but I DO KNOW how sick I feel almost all the time of late. Whether I'm at work or at home.
So now for the honest and heart-on-my-sleeve bit........ I am inevitably starting to ask myself difficult questions. Is this it for me now? Is this level of health/sickness my new 'norm'? Can I return to how I was this time last year, and manage to work as before?
Having a crisis of 'positive thinking'!
Wednesday, 5 May 2010
"I understand...."
My elephant has lost a few pounds this morning I think, still sitting on my shoulders, but lighter than it has been for a while. The first thing to recover, when I notice I feel better, is my horrible, down in the dumps moodiness.
"Hooray!" I hear my friends cry in chorus! For, tis they who bear the brunt of my 'sharing the joys of ME/CFS!' (Otherwise commonly known as, 'moaning on' about the pain and my limitations etc!) They are a stalwart group, who's support is the best cushion I could wish for.
I am blessed with many friends who support me in many ways, some willingly and some I think who are totally unaware of what they do and how much I rely on them.
At the weekend it had been arranged that my friend, her partner and two children were coming to lunch. I was having a particularly bad time of it, and anyone else, I would have cancelled immediately. I was, if I'm honest, toying with cancelling them, but am so glad I didn't.
They arrive and slot into our home. And, after initial chats and a cuppa, my friend took over in the kitchen, cooking for 7! She even shopped for it cos she knows that's something I won't have been able to do.
She cooks, serves (waiting on me especially!), and arranges the clearing away operations. The men being 'press ganged' into kitchen tidying and dishwasher 'feeding' afterwards. Then, she scoops me up, with a caring "Let's go get you laid down somewhere." and takes me to the yurt.
She then lights the fire, makes tea, and puts up with a very tired and worn down me. We talk a little, sit quietly a little, laugh a little. She should be bottled and given out on prescription!
And then, after all this, I have to ask them to leave as I could no longer manage to be there, laying down or otherwise. Without any fuss, she tidies away the tea things, gathers up her family, and is gone. She texts me from the car ....
"Thanks for a nice afternoon, don't feel bad about needing to go to bed. I understand. Take care."
Need I say more! All that and she still thanks ME for a nice afternoon! She has no idea that single handedly she has (albeit very caringly, and gently) shaken me up and turned my black mood around, instead I am now counting my blessings with this illness.
I have such healing and comforting relationships in my life, due in no small part to ME/CFS and the elephant I carry. Ok, now I'm in serious danger of getting schmaltzy and sentimental, so I'm off!
But, if ever my friend reads this, I mean EVERY word and more! You are truly one in a million!
"Hooray!" I hear my friends cry in chorus! For, tis they who bear the brunt of my 'sharing the joys of ME/CFS!' (Otherwise commonly known as, 'moaning on' about the pain and my limitations etc!) They are a stalwart group, who's support is the best cushion I could wish for.
I am blessed with many friends who support me in many ways, some willingly and some I think who are totally unaware of what they do and how much I rely on them.
At the weekend it had been arranged that my friend, her partner and two children were coming to lunch. I was having a particularly bad time of it, and anyone else, I would have cancelled immediately. I was, if I'm honest, toying with cancelling them, but am so glad I didn't.
They arrive and slot into our home. And, after initial chats and a cuppa, my friend took over in the kitchen, cooking for 7! She even shopped for it cos she knows that's something I won't have been able to do.
She cooks, serves (waiting on me especially!), and arranges the clearing away operations. The men being 'press ganged' into kitchen tidying and dishwasher 'feeding' afterwards. Then, she scoops me up, with a caring "Let's go get you laid down somewhere." and takes me to the yurt.
She then lights the fire, makes tea, and puts up with a very tired and worn down me. We talk a little, sit quietly a little, laugh a little. She should be bottled and given out on prescription!
And then, after all this, I have to ask them to leave as I could no longer manage to be there, laying down or otherwise. Without any fuss, she tidies away the tea things, gathers up her family, and is gone. She texts me from the car ....
"Thanks for a nice afternoon, don't feel bad about needing to go to bed. I understand. Take care."
Need I say more! All that and she still thanks ME for a nice afternoon! She has no idea that single handedly she has (albeit very caringly, and gently) shaken me up and turned my black mood around, instead I am now counting my blessings with this illness.
I have such healing and comforting relationships in my life, due in no small part to ME/CFS and the elephant I carry. Ok, now I'm in serious danger of getting schmaltzy and sentimental, so I'm off!
But, if ever my friend reads this, I mean EVERY word and more! You are truly one in a million!
Wednesday, 31 March 2010
Elephant gun!
I've been scratching about trying to find inspiration for another 'rambling blog', and here he was all the time- sitting there on my shoulders, peeking down at me and waving his trunk!
My elephant wants to be big, powerful and in control. He's never happier than when he is up there on my shoulders- looming large!
If I'm having a good patch, one where my elephant starts to shrink a little he gets upset.
Then he whispers in my ear (and the niggling little thoughts creep in)- You know the ones, the things that you would like to do to celebrate having a little more energy today! When my elephant shrinks I try incredibly hard to ignore his sneaky whispering. I put my fingers in my ears and "la, la, la, la," loudly, but it just doesn't work. I'm always falling into the trap he sets for me, overstepping my energy every time!
He does his whispering trick to get me to overdo it, to be too energetic, to enjoy the moment and let go a little. It feels great whilst I'm doing it, so liberating and I really cant remember the last time I felt like this!
Well, yes I can! It was the last time I listened to that @*##~* elephant! He knows that if I take a few steps too many, walk around that one last shop, or rake those last few leaves he will have won, and be back to his old weighty self before long.
Yesterday, and for the last few days, my elephant has been quite small, sitting there mostly bored and dejected. Once or twice he tried to show himself, jumped up and down for some attention, but it was short lived.
However after a mega day of working, driving here and there, and a meditation session (in the hardest and most upright chair imaginable!) he is back today!!!!
He is big, heavy, cumbersome and happy- smiling from flappy ear, to flappy ear! He's back in control, stomping his huge feet and trumpeting in my ringing ears, making it hard to concentrate and think, and how I hate it!
Someone buy me an elephant gun!!!!!
My elephant wants to be big, powerful and in control. He's never happier than when he is up there on my shoulders- looming large!
If I'm having a good patch, one where my elephant starts to shrink a little he gets upset.
Then he whispers in my ear (and the niggling little thoughts creep in)- You know the ones, the things that you would like to do to celebrate having a little more energy today! When my elephant shrinks I try incredibly hard to ignore his sneaky whispering. I put my fingers in my ears and "la, la, la, la," loudly, but it just doesn't work. I'm always falling into the trap he sets for me, overstepping my energy every time!
WELL BE CAREFUL ZARLA!
He does his whispering trick to get me to overdo it, to be too energetic, to enjoy the moment and let go a little. It feels great whilst I'm doing it, so liberating and I really cant remember the last time I felt like this!
Well, yes I can! It was the last time I listened to that @*##~* elephant! He knows that if I take a few steps too many, walk around that one last shop, or rake those last few leaves he will have won, and be back to his old weighty self before long.
Yesterday, and for the last few days, my elephant has been quite small, sitting there mostly bored and dejected. Once or twice he tried to show himself, jumped up and down for some attention, but it was short lived.
However after a mega day of working, driving here and there, and a meditation session (in the hardest and most upright chair imaginable!) he is back today!!!!
He is big, heavy, cumbersome and happy- smiling from flappy ear, to flappy ear! He's back in control, stomping his huge feet and trumpeting in my ringing ears, making it hard to concentrate and think, and how I hate it!
Someone buy me an elephant gun!!!!!
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