* 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. :(

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.