* I've changed the blog address from www.sarahsworld.me back to the original (badly chosen, but I'm stuck with it) address of www.kiwikchat.blogspot.com .

This means that some links to older posts and old links from other sites don't work. :(

Sunday, December 11, 2011

Survey Results for 'What's in a name?'

I'd like to say a big thank you to everyone who filled out the survey.

What's in a name?   http://www.zoomerang.com/Survey/WEB22DS4Y6CYFQ

If you didn't fill it out it's not too late to do so.  I've decided to keep it open for a year (it expires on 11/12/2012) as I think it will take time and energy for it to reach the broader M.E. community.

It can be found here.  Please take the time to fill it out and pass it on.

The results (after one month):

1. Which name do you prefer for me/cfs?

Myalgic Encephalomyelitis, M.E.                                                           73%
Chronic Fatigue Syndrome, C.F.S.                                                         0%
Chronic Fatigue and Immune Dysfunction Syndrome, C.F.I.D.S,           8%
Post Viral Fatigue Syndrome, P.V.F.S.                                                   0%
Post-Exertional Neuroimmune Exhaustion, P.E.N.E.                              4%
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, M.E./C.F.S.      8%      
Other,                                                                                                      4%
No Opinion,                                                                                             4%

So there we have it, most people who filled out the survey want this illness to be known as M.E. and none of us want it to be known as just C.F.S.

2. A few of the other Name Suggestions.

- totally broken syndrome!
- TPTP, Too pooped to pop disease.
- Neurological polysymptomatic disaster.


3. Thanks to everyone who trusted me with your contact details for any future M.E. related surveys, I promise not to spam you.  (I don't actually know how to spam, so really you are safe.)

4. Comments.

There were so many very poignant comments from people who suffer from or know someone who suffers from M.E. that it makes me more determined to try and make a difference.  Thank you for taking the time and energy to comment.

A few of the comments,


- I would like to eliminate the word fatigue from the name


- M.E. is the only name that adequately, respectfully acknowledges the severity and physiological reality of this severe multi-system, neuroimmune disease.  Get rid of 'Chronic Fatigue Syndrome' completely.  It is offensive and its trivialising of this disease is damaging us terribly.


- If we can't get doctors to change from calling it CFS then we have an uphill battle. The press and the general public will use the name that doctors use not what the sufferers and carers call it.  Doctors have a high credibility in society, while the sufferers are trivialised by those who misperceive what the condition involves.


- my friend was devastated by ME and he wasn't one of the worst ones











Friday, December 2, 2011

Where I admit to being thoroughly spoilt



Every morning I get breakfast in bed. 

Never mind that this is because my body doesn’t work and I look and feel like a hung-over junkie in the morning, I still feel decadent when my hot breakfast is brought in.

I am lucky and very grateful to have so much support from my family.

***

This morning it was Large Dad’s turn to bring me breakfast.

Me: Hmm that looks great.

Large Dad: I hope so, I think it turned out okay.  

He wanders over to offer his finger to my fresh water turtle.  Dexter, named after the tv serial killer, snaps with intent at the proffered finger. Something is not right.

Me: Are your pants on inside out?

Large Dad looks down, he is wearing short board shorts (evidence that Mum didn’t see him get dressed this morning) and they look a bit funny.  I think I can see a frayed seam.

Large Dad: no I don’t think so.

He turns towards me.

Me: Umm, I can see your undies. (giggling)

There is a large vertical rip, down the side of his outer thigh from the bottom hem to the top hem. 

I can see a lot of hairy leg and at the very top, faded blue rio undies. 

Large Dad: OOps.

He looks serious for a moment considering the ripped shorts.

Large Dad: I guess I’ll have to throw these out?

Me: Yes, definitely, don’t even think about keeping them.  (sheesh)

It reminds me of the time my physics teacher split his pants and tried to staple them back together. I start to giggle harder. 

Then something about the way Large Dad is standing makes me suspicious, 

Me: Have you been anywhere this morning?

Large Dad: No, not really, only Bunnings.

***



NB: Bunnings is a really really big hardware store.  







Saturday, November 26, 2011

Introducing the lovely Dr R.


So a few blogs ago, Mum and I went to see a truly lovely rheumatologist, Dr R.  

He was so lovely in fact, that afterwards we forgot to obsess over the health advice and instead we spent the drive home trying to work out where men like him come from.  Which planet? And how do you spot them in a younger form? 

But I digress and am sure that you would prefer to know what he said about me/cfs.

The main points were:

1. Vit B12 injections

These actually contain cyanide so don’t have too many, you can give yourself cyanide poisoning.  Oops, I hadn't heard that one before. 


(update - it only has cyanide in it if the name is cyanocobalamin, the one I prefer is called Hydroxocobalamin or Neo B12)

2. For neck pain:

He prescribed neck strengthening exercises (youtube), heat pack and slowly sitting up in bed with cushions rather than trying to make the leap from the bed to the recliner.

I guess this is my first brush with the dreaded deconditioning associated with M.E.

3. Codeine can make headaches worse.  

For some people (me) codeine is not tolerated well and you can become addicted. For me it actually causes more headaches from withdrawals. I was only taking 2-4 panadol forte a day but have since managed to cut back to one once a fortnight.  Seems I was caught in a headache/codeine spiral. 

4. Rituximab should only be used for ME/CFS in a clinical trial setting.
 
Dr R was totally up to date with the latest rituximab treatment research done in Norway and while he stated that he wouldn’t prescribe it for me/cfs he was quite encouraging about my wanting to take part in a clinical trial (if there was one).  That said, he also mentioned that even for people with Rheumatoid Arthritis, it doesn’t help everyone. 

Generally his comments about Rituximab for ME/CFS were optimistic yet cautious and he was clear that he wouldn’t recommend it unless in a clinical trial. 

5. In regards to GET:

“When your body is ready to get better it will slowly let you do more, until then all you can do is maintain it in the best state you can. Wait until it’s ready to let you improve.”

This was so nice to hear this as most doctors still suggest that I can gradually increase my exercise regime. However while in the middle of a slow decline, I found exercising really didn’t help.  I had to first find my baseline (it was hiding under the bed) and eliminate crashes.  I have painfully learnt that nothing and no one is worth a crash.  It's a very thin baseline but it does let me do some things which is better than nothing.

So I am to keep up my pilates régime, spreadsheet records and proceed with caution, waiting until my body lets me do more.

Finally after a long, thorough, unhurried appointment, I thanked Dr R and told him that he was the most informed and helpful doctor for me/cfs I had visited.

His reply was a bit sad:

I would never want to be known as a Chronic Fatigue Specialist because I have no help to give, no treatment to offer.  

So no magic cures, no promises and no list of supplements. 

Still it is comforting to know that I am not missing any tricks.

Sometimes just being listened to, taken seriously, understood and reassured is better than a prescription.



Disclaimer: the above is not meant to be taken as medical advice and you should discuss all health decisions with your doctor.

Saturday, November 19, 2011

Renovations

Dear Readers,

I am in the process of renovating this blog page and you may notice some changes over the next few weeks.   So far all I done is change the Blog Title from 'Cooking and sailing through life with me/cfs' to 'Sarah's World'. I am unable to cook or sail anymore so it's not really relevant to what I write about.

Please have patience, I'm not net-savvy and it's going to be a bit slow.

Hopefully by the time I am finished, this will be a better place to visit.

Cheers Sarah.

Update, 16th December - What was I thinking? Weeks this is going to take me months.

Tuesday, November 15, 2011

Second hand goods


Mmmm, my mouth is watering in anticipation as I try to make a decision and choose one chocolate from the chocolate box held out in front of me.  My Grandad is visiting (to help care for me) from NZ and, as always, has brought some handcrafted chocolates with him. Eventually I choose what looks like a solid dark chocolate and take a teeny bite.

Yuk!

Me: Oh mum, you have to try this one.  

I pass her the chocolate.

She looks at me suspiciously and bites into it.  Her face screws up. Her eyes widen. Double Yuk.  

Mum: gross, what the hell was that.

We look down at the box for clues but the flavour guide has been left in the kitchen.  Unwilling to waste what's left Mum tries to put the chocolate back in with the uneaten side up but it is lopsided.


A little later :

Mum comes into my room grinning. 

Mum: Large Dad ate it, he didn’t notice it was second hand and he liked it.

We giggle and Mum slaps her knee. 

Me: what flavor was it?

Mum:  Bluff Oyster with cinnamon. 

Friday, November 11, 2011

What's in a name?

I overheard something today at the doctors which got me thinking.  (Yes I was getting an IV, no I wasn't in the same bed as the one Large Dad sat on.)

Nurse: So how are you going, how are your legs?

Mr Eastern European: A liddle bit achy, not so bad, not so good.

Nurse: cluck cluck (yes she actually clucked) But overall how are you doing?  Is your health generally alright?

Mr Eastern European: sigh, I suppose so..

Nurse: Do you have any other problems?

Mr Eastern European: yes my wife.

Me: cough cough

Nurse: Anything apart from your wife?

Mr Eastern European: No.

He was serious, the cliched response in this case was true.  He then went on to talk about his wife's Alzheimer's and how looking after her was getting to be more than he could cope with.  


Alzheimer's disease, I shuddered.  It feels like it is something that might actually happen to me, not just to other people.

I pondered this for a while.  Everyone gets a bit absent minded at times but we know that Alzheimer's disease is so much more than that.  Everyone also gets a bit fatigued at times so why is me/cfs so misunderstood?

One answer is that Alzheimer's has been well branded.  It has one name that has come to represent the devastating complexity of the disease not just one of the symptoms. Would something called Chronic Absent Mindedness Syndrome or (C.A.M.S) be as well known?

The naming of me/cfs is one of those topics that can easily lead me into a rant and I don't want to bore you, as I'm sure you've heard it all before and probably have your own opinion on the subject.  So I've decided to be proactive for a change and ask for your help.

Can you please take the time to fill out a little survey?

It's really short (4 questions).

Click the link below and have your say.

What's in a Name?

Results from this survey will be displayed here on the 11th of December 2011 and also sent to me/cfs organisations and researchers around the world.




Below is the full link, in case you want to cut, paste and share :)

http://www.zoomerang.com/Survey/WEB22DS4Y6CYFQ



Thanking you in kind anticipation.
















Friday, November 4, 2011

The important stuff you find out at the doctors.


I hesitate for a moment looking dubiously at the scales.  I haven’t weighed myself in months, it’s not that I avoid it, it's just that it never occurs to me.  

Now I’m worried,  I think of all the chocolate I’ve been eating.

Exhaling slowly, I step up.  61.7kgs.

I can’t believe it, I weigh the same as always.

Pfft exercise schmexercise.

I can keep eating chocolate. Excellent.


******

Next we head over to the wall mounted measuring tape. 

I know at 26, it is assumed that I have stopped growing but last time I was measured, I had a pleasant surprise. It appeared that I had grown to the proud height of 174cm. 

Which put me 2cms ahead of Mum and ended one of the great family debates. (in my opinion anyway).

Down comes the measuring tape thingy.

172.6cm

Oh dear I’ve shrunk 1.4cm.

I remember the short friendly nurse who measured me at 174cm. 

Looking up at the doctor, something clicks into place and it's not just the measuring tape retracting.  This is what happens when someone taller than you does the measuring.

I believe it’s called accuracy.


Wednesday, November 2, 2011

It’s 4.30 am and I’m learning.

I’m learning (against my will) about the many different morning bird noises.  I've given up on trying to sleep.

I’ve had a major fail in the sleeping department.

I take full responsability, I threw my sleep hygiene out the window and sat up late typing up my list of symptoms, medications and updating my medical history. Pages of information that would put most people to sleep.

My mind is whirring and I can't seem to meditate it away.

 Today I'm off to see a rheumatologist. Lets call him Dr R.  It’s an appointment I’ve had for about 3 weeks and initially I wasn't keen, really what can another doctor do except tell me I have me/cfs and need to rest.

That was before the rituximab paper was published.  I now am incredibly excited to  have an appointment to see someone who knows about rituximab and actually prescribes it to people for, another auto-immune disease, rheumatoid arthritis (RA).

Dr R. was involved in the introduction of ritixumab into Australia for the treatment of RA.  So for him (I dare to hope) it’s not just another medication but actually something he believes in.

Despite all this, I know deep in my soul that he is not going to whip it out from under his desk and plug me in. 

I know it's not going to happen, but my heart won't stop hoping.

So it's no wonder my mind has been spinning out of control all night long and I found myself wondering what if...   and if  ….and ….. then…. I’d….. they’d….and we’d…. and that would be great.

The best nights sleep I never had.

Tuesday, October 25, 2011

Cockroaches, Dancing and Rituximab

I am so excited right now that if I wasn’t bedbound, I would be bouncing about my room dancing.

Since I am bedbound the best I can do is the occasional flail on my back, ‘the dead roach dance’.  Not to be confused with ‘the live roach dance’ which is only ever done in the presence of an actual live cockroach.

Anyway the reason I am breaking out my happy dance moves, is that there is a brand new reason to hope for people with me/cfs.

A couple of oncologists, Drs. Øystein Fluge and Olav Mella, in Norway discovered a possible treatment for me/cfs.   They were treating someone who suffered from both lymphoma cancer and cfs when they noticed that her cfs symptoms had gone into remission during the treatment.

The drug they used was rituximab (seriously who choses the names for these things), commonly used for lymphoma and rheumatoid arthritis. 

The oncologists, then initiated a clinical trial of rituximab  and to cut a long story short, it worked.  Moderately to well, for 60% of the people in the trial.

If you haven’t read the study results already, then you need to READ THIS. (yes that was a shout).

There are more trials to be done before we know if rituximab really is a safe and effective treatment for me/cfs patients.  


But it's an exciting start and that's something to celebrate.








Sunday, October 23, 2011

Fidgets are good


This afternoon:

Mum: You’re much better today, well relatively

Me: I am now pretty good, but I felt pretty grumpy and sore this morning.  I didn’t think I hid it very well…

Mum: yes well you were grumpy but much more fidgety than normal, you know, you were like moving.

J


Thursday, October 20, 2011

Rugged Hope on a Bad day.

Yesterday...

I wake up at 4am, exhausted.   My mind is whirring, my body feels stretched out and ropey. It's as though my blood has been poisoned.  I want to throw up but can’t, I am sweating and my heart is racing. Every movement makes the nausea worse.

Crap, it’s only been three hours since I feel asleep. I hit play on my ipod and the soothing sounds of relaxation music start up.  One hour and four relaxation sequences later I am still no closer to falling back asleep.  Sometimes it works, sometimes it doesn’t.

The sun is now up and peeks around the edges of my curtains, this soft diffused light hurts my eyes like the bright glare of midday summer sun.  I reach for my sunglasses.

Early morning songbirds are singing outside my window and their sounds pierce and reverberate painfully in my head.  I used to love waking up to these birds.

My heart sinks,  Is it going to be a Bad day?

Mentally I try and tug my heartstrings back up into their usual cheerful position but I suspect that today is one of those days, which are just meant to be endured.

Curling into a ball in bed, I try not to think of how far away I am from being a normal person.  My eyes prickle.

I pull my eyemask down, put in my bright orange ear plugs with my headphones on top and I tuck my feet up against the hot water bottle. 

I try not to think, I don’t want to hear my thoughts. 

Instead I press play, listen and start to drift away as the words of an audio book gently distract me.  I do my best to imagine the scenes described and feel myself getting lost in the story, leaving my sad and sorry body far behind.

That's my day.  It’s been like this for months and will be like this for many months more which may, I understand, stretch into years.

Last thing at night I smile and tell myself, ‘It’s okay hun tomorrow will be a little better’

And I believe it. 


Funny thing, this hope.  









Saturday, October 15, 2011

Large Dad and the Kayak


Last week Large Dad and Mum wandered into Anaconda to look at kayaks. 

Mum:  What about this blue one, it looks about right.

Large Dad: Yeah that’s what I want but maybe a bit bigger, this one is a little small.

Spotty Adolescent Sales Assistant: They don’t come in any size up. I think you will find it’s bigger than it looks, one size fits all.

Large Dad: the opening looks a bit tight to me.

S.A.Sales.Assistant: They are meant to be snug why don’t you hop in and have a go.

Large Dad: No, I don’t think so.

S.A.S.A.:  I’m sure you will be fine, go on, give it a go (maybe he works on commission?)

Large Dad: righty oh

He squats down and slides awkwardly into the opening. 

It IS a tight fit. The kayak seems to open up to accommodate his bulk as his hands press down on the edges.

Then he is in position he leans back and releases his grip.

The kayak sighs and closes tightly around his tummy and thighs.  Eyes bulging he looks up at Mum.

Mum is backing away, her eyes are watering and her shoulders are quivering.

Large Dad: I’m STUCK

Spotty Adolescent Sales Assistant: Stay right here, I’ll go and get some help.

Large Dad: sure. (rolls eyes)

Loud Speaker: We need all available floor staff to assist in the watersports department.  All available floor staff to the water sports department thank you.



Four athletic sporty men come to help Large Dad who is sitting on the floor with the bright blue kayak tight around his waist.  There is a big grin on his face, he is happy to have proven his point.

Large Dad: I told the boy that it was too small for me, but he insisted. 

They each try pulling him different ways to no avail.  Large Dad tries to assist as much as possible but he can’t move much. 

They discuss calling the fire brigade but no one wants to cut up the lovely bright blue kayak.

Then Large Dad has a brainwave.  “lubricant”

Green washing detergent is squirted around the top of the opening and Dad’s stomach.

Two men hold the Kayak down and wiggle it, while another two grab Large Dad around the torso and pull. 

SQUELCH SQUELCH

Inch by inch the kayak relinquishes its grip.

THWACK

Suddenly he is free.

Everyone smiles, hands are shaken and Large Dad goes looking for Mum.

He finds her in the carpark , she looks at him and doubles over next to the car, her eyes are streaming, her shoulders shaking, she can hardly breath. 

Mum: You know your daughter has a blog ?




Thursday, October 6, 2011

An Outing part 2....what's wrong with my head.


We head for the coffee stop, parking in our second ever disability space.  My brother heads in to get the coffees.  I lay back, I can feel exhaustion creeping over me, I am getting heavier but I've had an 'outing'.  I smile and force myself to keep my eyes open, people watching.

It’s Sunday afternoon and the foreshore is packed.  Some girls about my age jog past, their long pony tails swishing rhythmically behind them and there is a quite sexy looking guy with a deep tan and sun bleached white-blonde hair rinsing off under the shower.  Three very cool retro bikes with three very cool retro girls glide by.   Skirts, bikes, no helmets and big square sunglasses, they look to me like the very definition of ‘carefree’.  (although I am irritated by the 'no helmets' I can't help it, I'm that type)

 A dark haired guy in a lime green shirt passes in front of the car, hesitates and goes to the crossing.

Oh Oh, I know him.  I wonder if he has seen me, I pause considering if I have enough energy left to say hello and then decide he probably did.

‘Hey George!’ I yell out.  (I have one of those loud voices that make people cringe when I yell)

George spins around confused and spots me, a girl in a cap, sunglasses, tank top swimming costume and longish boardies.  Mentally I congratulate myself for choosing a tank top rather than a skimpy bikini and at the same time I remember that I haven't managed either a swim or a shower  today or yesterday. Oh well.

George is an old friend from working on boats overseas.  In an instant my mind flashes images of us and other friends catching up in different cities around the world.  Swimming at a beach in Greece with a glass of wine in one hand, walking through the old city streets of Palma de Mallorca and the many Sunday afternoons mojito sessions with friends at a favourite beach front restaurant. 

I turn and sit in the car, I can’t stand for long.  We chat awkwardly for a bit.  I can feel my brain slowing down, I’m exhausted from the outing at the beach. I can barely form a coherent comment about the weather.

George: ‘You don’t have to salute me, you know’ his grin is mischievous.

Confused I wonder what he is talking about, then I realise, my hand has snuck up to my eyes and is blocking the glare off the water.  It’s 5.15pm, the sun is behind me and I am wearing sunglasses it's actually pretty dark.

Me: ‘oh it’s light sensitivity, I didn’t realise I was doing it’

I mumble through 10 minutes of conversation.  I'm vaguely aware that I’ve missed a few obvious jokes somewhere along the line. 

We organize to catch up again in a few weeks.  I don't know if I will be well enough.  I am really struggling to keep the conversation going, it feels like the clogs (you know, 'the clever clogs') in my brain have ground to a halt and I can barely follow what's going on.

I hope and pray that I haven’t lost the ability to banter.  I want to sound like myself, my old self.  The self that used to have to force herself to be quiet and count to 60 in order to give others a chance to talk. 

My words have started to come out wrong, I'm mixing them up, instead of a vocabulary I seem to have a lucky dip.  This was initially funny, but now is mostly depressing and dare I admit it, a bit worrying. 

I’m too tired to wonder what all this means.  I guess remotely at some level I know my brain doesn’t work the way it used to and that scares me but I’m too tired to process that at the moment.

Zzz zzz zz


*****

Three days later, like clockwork, on the following Wednesday, I had the feared post ‘outing’ crash.  Grey faced, with a racing heartbeat, I had a nasty bedbound seriously-ill-yucky time which (praise be to the capricious gods of me/cfs) only really lasted one and a half days.

So I don't end on too negative a note, I'd like to quickly mention that I've now had a couple of days with  a couple of hours of 'myself at full speed'.  Watch out...