* 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. :(

Monday, December 27, 2010

The sailors definition of ME/CFS

Here is what a doctor told me about ME/CFS:

Having chronic fatigue is like being in a yacht race without a keel surrounded by sand banks that you can't see.   All the other boats are racing past to windward and yet you keep going sideways instead of forwards (that keel would've come in handy). 

So you go further, pushing the boundries and then 'wham' suddenly you're stuck, crashed on a sandbank waiting and resting, hoping for the tide to change, so you can keep going, limping along without a keel.

The funny thing is you look like a normal boat, but you just can't perform like one.

I like this analogy.  Has anyone else got a good one?

Sunday, December 19, 2010

Back to work at Christmas.

Hi all hope you are having a happy holiday season!

I'd like to start by wishing fellow sufferer's some good will.  You are not alone.

I hope to connect with more like minded people and to raise awareness of ME/CFS.

I work as a cook on a sailing yacht, with my boyfriend, for a very lovely gentleman  who has been understanding of my reduced energy levels.  

Some of the energy saving tricks and changes on board:
- One course meals instead of three course meals and occasionally I serve toasted sandwiches for lunch.
- I went to bunnings hardware store and bought clear plastic covers to put over the table cloths.
-  I use a pressure cooker and use it to make easy 'impressive stew/casserole style dishes" like, lamb shanks or osso bucco. I always make double and freeze it.
-  Simpler foods eg. cold seafood or even the occasional spag bog
- Guests make their own beds, I still change the linens but only once a week, not every three days.
-   I bought a tray so I don't have to walk up and down so many stairs when setting the table, which saves energy and pain especially when my knees hurt.
- I shop online for groceries
- I even drive the boat more during manouvering and the skipper does the lines and moves the fenders.

I have heard that you have to get back all the sleep you miss in your lifetime at some stage.  Well after having Chronic fatigue since May and pacing since September, I must be close to catching up.   I hope.

I had a month off before Christmas to help get over an operation and am now back at work. I'm very tired not sure if I will be able to cope but am going to give it another couple of months.  I really want to keep my job.

Christmas was a quiet affair onboard, I bought pre-cooked lobster, oysters, trout pate, christmas pudding and custard and cooked only potatoes and sweet corn. 

It was perfect and almost effortless.

How was your Christmas, what did you do differently this year?

Take care and remember to pace.
xx Sarah