* 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, February 26, 2011

10 Fringe benefits of me/cfs.

I'm having a philosophical day today and wanted to share some of the fringe benefits I've spotted while having me/cfs.  They may seem trivial but hey they are all we've got!

1. Skin care.  I don't think my skin has ever been this good, after years of abuse in the sun, salt and wind it is finally getting a break.  In theory we should all have milky white A-list skin after a couple of years inside.  Be careful though it might be a good idea to ask for a Vit D test next time you get some bloodwork done.

2. Traffic Jams.  I can't remember the last time I was in one, except for doctor trips I don't go far.  One stress less, on the down side I don't get to sing tunelessly to the car radio anymore.  Maybe I need a shower radio...

3.  Expert knowledge of day time tv without the guilt.  I can now watch daytime tv without feeling like I should be doing something else, because more often than not I can't do anything else.

4. Writing a blog.  Seriously I would never have gotten around to it without the forced rest and isolation caused by me/cfs. (this may be a negative if I am boring you with my blogs..if that's the case... bugger off)

5. Time with family, I am getting serious quality time with my folks, which after years away is something precious to me and not to be taken for granted. (ask me again in 6 months)

6. Patience, lets face it there is no choice but to be patient patients!

7. Doctor surgery magazines, I haven't bought a magazine in ages as my local GP's office has great mags.

8. Books, same with guilt free tv, now I can read as much as I want/can without that nagging, should be doing something else, feeling.

9. Great nails, this might not go for everyone else, but for the first time in my life I have been able to grow my nails.  I think because my work was so hands on they were always weak and I bit them.  Now with so much time on my hands ('scuse the pun) I've finally quit.

10. The world is waiting.  That's right folks there is a spot in the world waiting for you to get better and fill, no matter how long that takes.  I know this because every now and again I poke my head out and have a look, yep the world is still out there.

What are your 'fringe benefits' unique to having a chronic illness?

Thursday, February 17, 2011

Looking out for ME. The Break Up. Moving Home.

Sometimes you have to prioritise yourself and have a good hard look at what changes need to be made.   Simple advice but some that I had a hard time following.  Recently however life gave me the push I needed.

Some major life changes I've made in the last few weeks:

- I left my job due to ME/CFS
- My job was also my home, so I have moved back in with my parents.
- Did I mention moving back in with my parents
- Splitting up with my boyfriend of almost 7 years.  We lived and worked together 24/7 so it felt like twice as long!

I was very scared to make these changes and resisted them for a long time but in the end I had to look out for myself.  Even though it is hard to do this while sick, it was doubly important for my mental and physical health.   I believe that stress is a major negative for anyone with a chronic illness.

How these changes helped my health in immediately:

My boss has been really understanding about me/cfs but eventually it became obvious that I was unable to contribute and worse, that I had stopped getting better.   I thought I would feel 'cast adrift' and useless without work but instead of feeling lost, I felt relieved.  I was unaware of the tonnes of guilt I carried on a daily basis.  Guilt about lots of things; not being able to change the bedding, clean the fridge, do the lines, maintain a lookout, or cook dinner etc...  So having that pressure lifted was huge for my general well being.  

The second surprise was how splitting with my boyfriend felt so right.  I didn't want to hurt him and that held me back initially but when it's not right, it's not right.  I feel like a huge weight has been lifted, the relationship stress that had bogged me down is suddenly gone.   There is a lot I miss, but as cliche as this sounds, I hope we can be friends.

Moving back in with my parents wasn't something I was ever planning to do but has actually worked out really well, so far. 

Best things about moving home: (in no particular order)
- I have my own space in the form of a granny flat, which is absolutely huge compared to my old cabin onboard.  
- I have a wardrobe, yep a full size wardrobe just for me. 
- I can stack things when storing them, without worrying about them spontaneously falling and breaking, the house doesn't move.
- A queen sized bed to myself, which I can walk all the way around.
- Spending time with my parents and knowing that I will be around for their birthdays
- Mum making, yummy home cooked food specially for me and my fussy me/cfs diet.
- Dad helping me move in and totally getting my new energy limitations.
- Hanging out with my Bro who visits to keep me company when he can.
- Not missing birthdays or holidays!
- Lots of horizontal surfaces for crashing on.
- Reconnecting with old friends.
- I have a library card, and I intend to use it!
- Sitting on the beach watching surfers knowing I will get back out there one day.

So, now I am blogging from a comfy recliner chair in the living room in the comfort of my pj's and even though it is midday I feel zero stress.

Look out for yourselves, you owe it to your health!

What major changes have you made for yourself since getting ill?

Friday, February 4, 2011

What's the opposite of a sea change?

I was hoping for a couple of months before leaving this beautiful boat which has been my home, workplace and shelter for the last few years.  However life has other plans for me.

My boyfriend has a family member who is very ill, and has been given weeks to live after an inspiring four year battle with cancer.  An absolutely, amazing, awe inspiring person who has remained positive and strong throughout.  It puts having me/cfs into perspective and I think me/cfs is tough. 

So my boyfriend has decided it's time to leave now, which I understand, but can't help feeling disappointed.   We had just made the plan to get the boat back to Europe, over the next few months. It would have been a lovely end, see friends, find new crew for the boat and say goodbye properly to guests who have been on and off over the years.

It's not my decision to make, as the weaker party I have to reconcile myself to this fact.  Previously I've been able to stay onboard and work for the both of us while my boyfriend travelled home to visit his family.    I am so frustrated that I can't hold it together for us this time.  It feels wrong to have sailed the boat half way around the world to Australia and leave it here when it really belongs in Europe and we had told our boss we would take it the whole way round.

Well that's life.  Out of control and unpredictable. 

Looking back I am grateful that I got to meet so many fabulous interesting people and travel to exotic places all while getting paid.  I am now good at sailing, cooking, entertaining and unblocking boat toilets.   Mostly though I just feel lucky to have worked for my boss, who has done so much above and beyond what I expected an employer to do.  No regrets.

Now looking forward, I need to get busy clearing years worth of my stuff off the boat...it definitely won't fit in the bag had when I joined overseas.  I have souvenirs from all over the world scattered in nooks and crannies. Not to mention a number of cookbooks, camera gear, clothes and even a wakeboard.  Yep, I have been accumulating.

Finally as I contemplate 'swallowing the anchor' and moving ashore I realise I am going to miss this yacht.  It's carried me through fun times and also a lot of scary times and I have to admit I have loved being onboard.

Signing out, maybe for the last time, from my dinky cabin.


Tuesday, February 1, 2011

Trying to find a work/health balance.

Prioritising my health.

Its been a chaotic few weeks, my mood and symptoms have been up and down like a yo-yo in a retro yo-yo competition.

This cruising season is drawing to an end, and we are waiting for the cyclone season to blow itself out so we can go north.  Hopes and prayers to those awaiting the affects of cyclone Yasi.

So as one season ends, the plans for the next season begin.  After many discussions about the various options including, the Pacific, the Med or even sailing to Africa, I've come to realise that I'm not really physically able to do any of the options.

It's time to face facts.  I'm not getting better working on board.  Truth be told I might be getting worse.  New stomach pains, persistent headaches and neck pains have all been recently added to the mixed bag of symptoms that make up ME/CFS

I've been able to manage so far, hobbling along using the great facilities available to yachties in Australia, like ordering food online, floating docks, plentiful car parking and helpful service people who speak the same language. 

My partner in crime, my lovely boyfriend, has shouldered a lot of my work and has managed surprisingly well.  After several years on board he has finally learnt where I store all the food, and can find the refills by himself.  Impressive I know.  Seriously he has been great.  However I know that overseas, he will be less available to help as unfamiliar ports,customs, and repairs in foreign languages all take up more of his time.

Which brings me back to the simple fact, I am not getting better on board.  So I am prioritising my health and hoping that rest and less physical work will help me get better.

Now we are working on a time and place that will suit everyone for a change of crew.  I am hoping for a few months to get it all sorted. 

Fingers crossed xxx

How about you? What life changing decisions have you had to face once diagnosed with ME/CFS or other Spoonie illness?