Archive for February, 2009

Wigging Out

I thought about buying a wig so when I do get to go out I can have half decent looking hair without having to make an effort. And then maybe Growler can wash it without me having to be there too.

Maybe Growler could shave my head as that’s an easy style to maintain and hats are easier to wash than people.

Can you tell my efforts to recruit a mobile hairdresser have been thwarted this week?


Test Me When I’m Crashing

News of research that uses standard exercise testing on 2 consecutive days for ME patients.  Research at Pacific Fatigue Lab at the University of the Pacific in Stockton, California could shake research into ME. 

On the first day patients often perform within norms or fail but when re-tested the following day the results are unique and startling.

The test measures how much energy is being produced.

Having people pedal a stationary bicycle until they can pedal no more tells researchers how much air their lungs can take in (Ventilation Max) and therefore how much oxygen they use to produce energy (VO2 Max) at their peak level of effort. Since oxygen plays a key role in the energy production process this test effectively tells researchers how much energy is being produced.

It seems obvious to anyone with ME that repeating the test when in “post exertional malaise” will probably offer very different results to the initial test pushing you to exhaustion.  But amazingly this has not been looked at until now (bold added by me):

 Their results are both profound and disturbing. About half of the ME/CFS patients they’ve tested do, in fact, ‘fail’ or significantly under perform in the first single exercise test – they cannot generate normal amounts of energy even when they’re ‘rested’. It’s the rest of the patients that are so intriguing, though. When you give these patients a second test a day later many of them will fail as well–and fail spectacularly.

The amount of impairment the Lab see’s can be astonishing – some patients suffer as much as a 50% drop in their ability to produce energy the next day. Ms. Stevens spoke of a twenty-something man whose next day exercise tests were worse that those of a normal 85 year old.

These kind of results have never been seen in any other kind of patient group. They are revolutionary findings and what’s even better is that research students are fascinated and want to find out more.

It doesn’t matter if she/he has heart failure or end-stage kidney disease – again and again researchers have shown that the human body – even in extremely poor health – has an amazing ability to quickly return to a baseline level of energy. That is until now.

But it’s not just that chronic fatigue syndrome (ME/CFS) patients are failing these tests, it’s also the unique way they’re failing them that’s raising eyebrows.

… suggests that something has gone awry in the basic physiological processes the body uses to produce energy in this disease.

Also the equipment and testing used is standard stuff so the research could be replicated around the world fairly easily.

Some ME patients have been using the centre to prove their incapacity when it comes to work in order to make successful insurance claims. 

Sounds to me like a test that proves something siginficantly abnormal in physiology that could be used as a test for ME/CFS.

Admittedly it wouldn’t be a great test for patients because the level of illness and debility triggered by testing to exhaustion and then retesting to exhaustion whilst in crash could be significant and long lasting.  But it proves something quantifiable and tangibly physical then sign me up now!

Many thanks to Michelle for featuring this story on her blog

Not Enough Proper Rest?

Reading Jo’s blog yesterday I’ve been thinking that I don’t really get enough proper rest. I mean real rest without a lot of stimulation.

It’s something I’ve been saying I will improve on for at least a year now yet it never seems to stick.

putting your feet up

I don’t count myself as a boom and bust person.  I pace fairly instinctively now but not as rigidly as “proper” pacing.  I tried after my diagnosis to do pacing by a strict baseline and just couldn’t get to grips with it all.  I also tried to implement a routine of rest and activity structured throught the day.  It drove me crazy.  Trying to stick to a schedule and rigid pacing was more frustrating than anything else!

I admit I feel a bit of a failure because I don’t pace in a clinical sense.

But I’ve heard a lot about how proper rest is important to recovery and feel a fraud and a failure for not prioritising it better.

The problem I have is getting into the routine of taking regular rest breaks through the day.  I forget to stop, forget to rest. 

flyman and me from above

I tried setting myself regular times each day to rest but that doesn’t seem to work for me.  My morning through to after lunch routine varies by how well I feel and how well I sleep (or don’t).  As for the afternoon I make excuses I suppose.  It seems I can’t find the right time that suits me to just stop and rest.

Sometimes I think it would help if I had a place I could go physically that marked rest time.  But it’s probably just another excuse.

I’ve bought a watch with vibrating alerts to remind me to rest. I’ve got worry/prayer beads to give me a structured way to relax and meditate.  I’ve bought relaxing music to play to help me rest.  I’ve sworn I will start to do daily meditation time after time.

What I haven’t found is a way to make it stick.  A way to have permission to stop.

It’s like I’m frightened of something.  Frightened to stop.  Or afraid that I have so little time to “do” the little I can achieve that resting is somehow robbing me of opportunities.  Surely it would give me more resources to use?

I think I have to look at rest a different way.  That a 20 minute or half rest is like taking medicine.  That it’s a vital part of treatment.  And that it has to be a priority. 


Now I just have to remember to think that way and remember to stop.  This doesn’t sound like much of a plan!

I know I have the discpline so why haven’t I been able to apply it to this?

It’s difficult to motivate myself into doing nothing.


Postscript: I should clarify about pacing. I do pace every day and every week.  I pace within the energy/resources and health I have available. 

What I haven’t mastered is being able to pace from a baseline.  To only do each day what I would do even if I was at my worst. 

Having done a little reading this morning about pacing advice I am actually pretty much doing what they say but without the proper resting.  I tend to be on the internet in periods between other activities rather than resting.  So there needs to be an adjustment in the balance I think.

Here’s a few articles about pacing:

Acceptance Is Not An Easy Option

I’m feeling more positive about life and about the house/housework stuff.  Thanks to everyone who has been supportive, encouraging and shared their own experiences.  It’s helped a lot.

It’s still all quite overwhelming if I think too big, think about too much of it it one go.  But I can try.  The declutter sessions will continue until hopefully it makes things easier to keep tidy and clean.  My inlaws are staying overnight in just over a month so there will have to be a certain amount of cleaning done.  But that’s a lot of weeks.

My plan is to do a tiny amount each week backed up by Growler doing a slightly larger amount each week. Certainly trying is more rewarding than not. But at the same time I have to balance the other things I need/want to do and to do no harm.  Triggering a relapse or setting myself back is the last thing I need.

January has proven to be a very frustating month for me.  It’s been difficult now Growler is working a full time office job and he’s been busy there so preoccupied as well.  It’s a steep learning curve adjusting the balance. 

I’ve worked hard to give him gifts of being strong and self reliant – to a certain degree.  Quite rightly it’s gone unnoticed because that’s the point of not being a constant drain or constantly needy. But there are points I reach a critical mass and can’t cope alone.  It seems the tipping point has been the emotional battle with incapacity.

My frustration 2 years on from my official diagnosis of CFS (preceeded by a year of uncertainity, misinformation and denial) has hit me hard.  I found myself in a knotty ball of anger, upset, hurt and confusion. Why me? Why am I still sick? Am I too blame? Do people think I am doing things wrong? Will I ever be better? Did I do something terrible – do I deserve this?

Considering I spend 24/7 living with debility and incapacity I’m proud of how I am positive and happy most of the time.  This bubbling over of emotional and anguish are understandable.  It’s certainly not easy to reconcile having spent the last 2 and hald years almost continously sitting on the sofa or being in bed.  Meanwhile life has carried on (almost) without me and without missing me. 

Growler reminded me that I am better than I was a year ago.  I have improved.  For that I am very happy.  But I heard myself wail, “A year. A whole year of self restraint. Of being careful  to get THIS? The get this tiny, tiny improvement?  This tiny improvement that could be stripped away with one wrong move? It’s just not fair.” Growler said he’d rather take the tiny improvement than me being worse.  He’s the naturally optmistic one is our relationship.

What scares me is that I might be saying the same things in a year, 2 years, 10 years. Or that this might be the best of times and worse could still come. 

I want to be able to accept with certaintity that I have ME for life, but that remission is possible.  Just so I know what it is I am fighting. 

I want to accept ME is always going to be a factor without a suggestion that accepting that is a weakness. That accepting it means I am giving in, or fulfilling a ‘sickness role’ or choosing to fulfill ‘sickness behaviours’ or deciding to choose to be ill instead of setting myself free.

It’s made more difficult for me because my dad is a therapist and counsellour who was taught that CFS is psychological.  I think since his own daughter, happier in her life than ever before, developed the illness those ideas have been challenged and I think set aside.  Honestly I don’t know if his reluctance to talk about my illness or to accept it as long term is due to a belief in somatics with this illness or due to good old fashioned fear.  Fear for me, fear for himself, fear from a conflict in the “truths” he has learnt in his profession.

Does he not want me to accept I will always have ME because of mind over body or somatics?  Or because he’s frightened for his daughter and himself to have to face a lifetime of her incapacity? Or because he himself has had periods of extreme fatigue and maybe he’d have to hear a voice inside himself he doesn’t want to?

I don’t know the answers and I can only speculate because he won’t talk to me openly about it.  But I do know that this seems to cloud my own thoughts.

The way I have survived, coped and prospered this last 2 years is acceptance whilst maintaining hope

Sometimes I question if that’s good enough to make a recovery.  That if my attitude was “I’m going to beat this whatever it takes” I’d be well again by now.  Is acceptance and living within limitations a way to self perpetuate my sickness behaviour?

I believe my illness is organic and physical.  I do wonder if programming the mind can alter autonomic disfunction but I’m not willing to gamble the health I do have to find out.  But it’s a nag in the back of my mind like a hundred other questions and uncertainties with this condition.

I see acceptance whilst maintaining hope as a powerfully positive way to move forward with this illness.  That little by little it is possible to make a recovery just like Charles Shepherd describes in his book.  But as someone who likes a quick fix and is aching to get back to living a full life a magic bullet is a tantalising prospect.  Is the fight with ME a quiet long fight? Or is it one where you gamble your body with a quick mind over body fix?

When I finally saw a GP who was good enough to recognise and brave enough to suggest to me that I may have Chronic Fatigue Syndrome one of my first reactions to Growler was “I am going to fight this with everything I have and I am going to beat it”.

I wonder if I have let myself down? 

When did I stop believing I would fight it and beat it? 

I remember the (awful) Occupational Health woman at my old workplace saying “you can beat this” and rolling my eyes because she just didn’t understand.  Because months earlier I’d realised you can’t fight ME/CFS like you fight a cold.  You can’t fight against it, push past it, beat it down.  Because it’s in your cells messing everything up, misfiring signals from your brain, robbing you of energy and function.

I think of the not-so-great GP I saw when my ME was mild and I was heading back to work to *push through that last bit of tiredness*. I asked how long should I wait to come back if I didn’t improve?  How long would feeling this tired not be normal for? 

She said as winter was coming it could take 6 months to be back to normal, but “certainly if you’re still this tired in a year we’d want to be referring you to a specialist.  Not that it would do you much good.  To be honest they’ll just give you a graded exercise programme to do and that’s really for people who’ve given up.  People who’ve taken to their beds and given up.  But you seem a sensible with a good head on your shoulders so I doubt that will happen to you.”

It strikes me now that in her eyes I’m probably one of those who have “given up”.  Rather than what I really am – one of those people who was never told what was really wrong with me (I assume to not infect my mind with negative illness behaviours) and was sent back to work without understanding what I was dealing with.  One of those people sent off misinformed and misdiagnosed to run myself properly into the ground until I was more sick than I’d ever been in my life.  One of those people who would need certainly more than 2 years to get back to the level of function I had sitting in her office that day.

And I wonder why I’m so angry?

If she understood acceptance of limitations with this illness then I’m sure I wouldn’t be so ill today.  I might even be living a semi normal life as I was making a good recovery back then in Autumn 2006. 

But one thing I suppose this must prove to me is that accepting your limitations doesn’t make you more ill.  Because that doctor sent me back to work with the belief that I would gradually improve.  I wasn’t even trying to attain crazy levels of fitness – I was just approaching each day knowing I would get stronger and stronger.  Knowing that the worse was behind me and keen to get back to my life.  Despite those beliefs I got sicker and sicker until a few months later I was worse than ever.

I do believe that it’s possible when people give up that they can go downhill.   You can stop fighting a fatal illness and let go and die.  That I believe.  But acceptance isn’t the same as giving up.  And fighting isn’t just about carrying on like everything is normal.  Some of the most courageous and fierce battles are the ones we don’t reall see or hear, that take months and years of quietly getting on with it.

I choose to accept my illness and my limitations but to maintain hope.  I choose to fight my illness in a quiet way and that fight is with me every hour of every day.  I want to feel assured in those choices every minute of every day.

Just because my illness doesn’t fit with someone’s view of what illness is, or my fight doesn’t look like the kind of fight they know or my acceptance is something they’ve only seen as surrender before – that doesn’t make me wrong or foolish or weak.   In many ways they are fortunate not to have known the pain I know or to have been forced to see the world the way that I do.

My acceptance is not an easy option.  It’s a fight in itself.  I could do with those who think otherwise to try to understand that than to push against it.  Because, frankly, my life is hard enough.


Push It 11 Sep 2011

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