I have spent my morning poddling about the house, not really doing much and sitting down LOTS! I kept thinking that after lunch I would go out and check on Merlin our carriage pony.
Mmm, I should have known that that elephant of mine would make his presence felt, and weigh me down -he has! My body feels so heavy and my legs are sore, I really need to be horizontal
My 'pony check', followed by a cuppa with my friend looks much less likely from where i am just now -horizontal on the bed!
Boy it's frustrating when my diary gets rearranged..... by a bloody elephant!
Anyone know of any elephant weight-loss programs? :o)
Showing posts with label pacing. Show all posts
Showing posts with label pacing. Show all posts
Wednesday, 8 December 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'!
Monday, 30 August 2010
My Brain Scares Me Sometimes!
I'm missing my holidays, yes I have only worked 2 days per week over the summer, but I've had possibly the most stressful 6 weeks ever!
There have been work stresses which have meant late evening phone calls, conversations which need brain power and concentration in spade loads. Exhausting!
My husband has been doing fencing, making gates etc, for his pigs. This has meant I (and it has to be me because he doesn't drive) have spent many hours going here and there on some errand or another. Buying, sourcing, fetching and carrying bolts, wire, screws, wood, hay, pig food etc etc etc....the list seems endless! Exhausting!
Looking after the pony and carriage, meeting the farrier etc. Being taxi driver for Ben to go back and forth to work at the stable, and his riding lessons. Exhausting!
Trying to cope with family life over the summer, demands v pacing/resting. Need I say more, I know you're all nodding sagely.
Organised a 16th birthday for my son, which I don't begrudge the guy at all, but it's.... wait for it......... Exhausting!
Looking at it all it's little wonder I'm as frazzled as I am, it's a formidable and daunting list. All this mixed in with a hubby who, at times, is a good way short of being understanding, and the general day to day activities that I normally manage.
I think I've done fairly well to still be upright by now!
It is all very stressful, and I feel that stress bodily and mentally, but mostly cognitively. I can forget within a nano-second what I was doing or saying. This is OK when it's something like "which load of washing was I putting in the machine?" But when it's something a bit more important (not that clean clothes aren't important you understand!) such as, when driving, which pedal is the brake? Boy it sometimes scares the pants off me!
That particular lapse has only happened once, just yesterday, and I'm still reeling from the feeling of panic. Having to check in my mirror then take both feet off the pedals and re-evaluate what I was asking them to do. The possible consequences are too much to think about. In fact most things are just now!
These cognitive challenges are a whole post on their own, but the point of this one, I think, is to tie my concrete-headedness in with the difficult times of late. Much as I try not to admit it, I can't handle stress like I used to, and it's getting worse.
There are some difficult times ahead, my son starts college and later this week there is a meeting at work that I would much rather never needed to happen. I am seriously wondering how much longer I will be able to sustain the upright version of me.....!
I hope I can, it's a much better version than the pyjama'd and horizontal one that threatens to rear her 'ugly' head!
I hope, oh faithful and determined reader, that our respective 'worlds' are kind to us this week, and our brains can keep up!!!!!!
There have been work stresses which have meant late evening phone calls, conversations which need brain power and concentration in spade loads. Exhausting!
My husband has been doing fencing, making gates etc, for his pigs. This has meant I (and it has to be me because he doesn't drive) have spent many hours going here and there on some errand or another. Buying, sourcing, fetching and carrying bolts, wire, screws, wood, hay, pig food etc etc etc....the list seems endless! Exhausting!
Looking after the pony and carriage, meeting the farrier etc. Being taxi driver for Ben to go back and forth to work at the stable, and his riding lessons. Exhausting!
Trying to cope with family life over the summer, demands v pacing/resting. Need I say more, I know you're all nodding sagely.
Organised a 16th birthday for my son, which I don't begrudge the guy at all, but it's.... wait for it......... Exhausting!
Looking at it all it's little wonder I'm as frazzled as I am, it's a formidable and daunting list. All this mixed in with a hubby who, at times, is a good way short of being understanding, and the general day to day activities that I normally manage.
I think I've done fairly well to still be upright by now!
It is all very stressful, and I feel that stress bodily and mentally, but mostly cognitively. I can forget within a nano-second what I was doing or saying. This is OK when it's something like "which load of washing was I putting in the machine?" But when it's something a bit more important (not that clean clothes aren't important you understand!) such as, when driving, which pedal is the brake? Boy it sometimes scares the pants off me!
That particular lapse has only happened once, just yesterday, and I'm still reeling from the feeling of panic. Having to check in my mirror then take both feet off the pedals and re-evaluate what I was asking them to do. The possible consequences are too much to think about. In fact most things are just now!
These cognitive challenges are a whole post on their own, but the point of this one, I think, is to tie my concrete-headedness in with the difficult times of late. Much as I try not to admit it, I can't handle stress like I used to, and it's getting worse.
There are some difficult times ahead, my son starts college and later this week there is a meeting at work that I would much rather never needed to happen. I am seriously wondering how much longer I will be able to sustain the upright version of me.....!
I hope I can, it's a much better version than the pyjama'd and horizontal one that threatens to rear her 'ugly' head!
I hope, oh faithful and determined reader, that our respective 'worlds' are kind to us this week, and our brains can keep up!!!!!!
Saturday, 31 July 2010
Reality check!
I love to blog about doing lovely things, as in the last post, 'I Follow Humbly'. This is unfortunately not always the reality of life however. I managed that Lark Rise trip through careful planning and taking it easy in the days leading up to it, so that I could enjoy it. Thankfully it paid off and I had a great time.
Since that trip things have conspired to bring me back to earth with a 'thump'! It is sometimes my own doing, cos I push myself to my limits (and sometimes beyond em) but this time I am largely blameless!
Work has been more than usually stressful this last couple of months, building nicely into a semi permanent 'teetering on the edge of crash' state! I find I am unable to sort a particularly knotty issue out, caused by circumstances out of my control, all getting a bit much with this illness that hates stress.
Since that trip things have conspired to bring me back to earth with a 'thump'! It is sometimes my own doing, cos I push myself to my limits (and sometimes beyond em) but this time I am largely blameless!
Work has been more than usually stressful this last couple of months, building nicely into a semi permanent 'teetering on the edge of crash' state! I find I am unable to sort a particularly knotty issue out, caused by circumstances out of my control, all getting a bit much with this illness that hates stress.
Whilst my energy levels have been worse there are the usual culprits that appear when things aren't going so well. That bone crushing, aching tiredness and weakness that can stop you in your tracks sometimes- the body that's suddenly too heavy to take another step, and a brain that might be able to do the Times crossword one minute but can't find the words I need to complete a sentence the next, (sorry, that's not strictly true-I don't think I could do the Times crossword even when well!) Hearing sensitivities, tremors, muscle spasms and brain-fuzz of the most debilitating 'I can't remember what i am supposed to be saying' kind are also here and look like they're staying!
I am prone to muscle spasms in all sorts of odd places but my lower tummy has been really troublesome just lately, with horribly painful spasms and tension in the area around my pelvic floor muscles. I just cant relax them at all, night or day. Night is worse as lying down seems to make the pain more intense...no sleep for days now! Is this just my own brand of ME/CFS or do others get similar symptoms too?
Things aren't always good in anyone's life, they're sometimes very hard, painful, lonely and frustrating but I have an unshakeable faith that things do change, and hopefully for the better.
Will someone remind me of this please, when I'm mired in pain, fatigue and a basement low mood!? It's sure to happen, not as yet as I am definitely upbeat, but, as they say, "it's not over till the fat lady sings!" (But, don't worry, I'M keeping MY mouth firmly glued shut!!!!!)
Sunday, 28 March 2010
Springiness!
What a morning! So bright and sunny here in Leicestershire. It's one of those wonderful days that I get big ideas about what I should do today.
It's one of those days I feel like the old me is just under the surface, and if I only got down to one of those energetic garden jobs I used to enjoy, she'd pop back out and the 'M.E. me' would be gone, at least for a little while.
It's a dangerous feeling that is brought on by the changing of seasons, some time at home, and a few DIY jobs that NEED attention. I'm sure i'm not the only one feeling it?
One horribly difficult word is itching it's way through my head, PACING. Is there anything harder to do? Come on, who has mastered this art? Please own up if you have, leave us a comment and I'll let the rest of the world know..... I JUST CAN'T get my head around it!
Still, the day beckons and I'll be off now, must go do something, but I'll try to follow my own advice. Which, (however I try to phrase it) sounds like a line from a 'Carry on' film!
Do it gently, and not for too long!
It's one of those days I feel like the old me is just under the surface, and if I only got down to one of those energetic garden jobs I used to enjoy, she'd pop back out and the 'M.E. me' would be gone, at least for a little while.
It's a dangerous feeling that is brought on by the changing of seasons, some time at home, and a few DIY jobs that NEED attention. I'm sure i'm not the only one feeling it?
One horribly difficult word is itching it's way through my head, PACING. Is there anything harder to do? Come on, who has mastered this art? Please own up if you have, leave us a comment and I'll let the rest of the world know..... I JUST CAN'T get my head around it!
Still, the day beckons and I'll be off now, must go do something, but I'll try to follow my own advice. Which, (however I try to phrase it) sounds like a line from a 'Carry on' film!
Do it gently, and not for too long!
Subscribe to:
Posts (Atom)
