Home

It is sooooo good to be home. I'm sitting up in bed as I write this, looking out at the beautiful green fields and the sparkling water of the ocean in the distance.

The drive down from Sydney took nearly twelve hours and I needed to stay at a friends place for a few days in order to recuperate enough to look after myself.

I drove the extra half hour to here on Tuesday afternoon and have had to spent most of my time in bed.


A glorious Aussie Sunset outside my bedroom window.

I've had a myriad of adverse symptoms since getting back to Australia, nothing new, just all at once. My health has certainly deteriorated since my time at the beech but for now I am content to just be.

I find myself thinking of my daughter and granddaughters often, sometimes I have a little "missing you" weep, more often I smile as I remember a funny incident or a loving hug.

I must get strong again, I so love to travel!!!!!!

Hi again

Hi, I am in Sydney again after spending a few wonderful days down at the beach with my sister.

I was able to catch up with some old friends, went to Church on the Sunday, and sat on the beach and soaked up the fresh sea air.


"Pig Face" growing wild in the sand dunes.

I see my dentist tomorrow to finalise some treatment then will drive down to Melbourne on thursday if I am well enough.

Still in Sydney

Today is the tenth day I have been back in Australia and I am still in Sydney, staying with my sister. Most of this time I have spent in bed resting.

I went back to the Dr. yesterday afternoon and all my test results came back OK. My blood pressure, which was very low when I saw him last week, is also good now. I have been slowly increasing my B12 injection amount each morning and can definitely feel the difference. I have more energy and less nausea and dizziness.

The weather here is glorious! Oh to have the money to run away from every Winter. I have taken some beautiful photos of the spring flowers around my sisters home.


The Magnolia tree at the front of the house is in full bloom.


The Wisteria vine in the back garden.

This afternoon my sister and I will be driving down to "The Beach". I'm so looking forward to catching up with the friends I made there as well as just siting on the beach. Nothing I have found compares with the peace and fresh air of the coast.

The drive will take about two and a half hours.

Update

It's been a few days since I arrived here and all in all I am doing OK. My health has been a bit up and down, some days feeling not so bad and other days, like today, needing to stay in bed.

I saw the local Dr for a check up and he sent me for blood tests, and two ultra sounds. The first ultra sound for the front of my neck to check my Carotid Artery. The second one for the back of my neck, where on the left side, a row of Lymph Nodes are raised. I see him next week for all the results.

I have been able to order a vial of my B12 and gave myself an injection this morning. I started with half the usual dose and plan to work back up slowly.

I have to give Qantas a great big plug here. They were fantastic! I couldn't believe the difference from the last time I travelled with them, just over two years ago. I was treated with kindness and respect the whole time. They even wheeled me and my luggage out of the airport in Sydney and got me settled into a Taxi before saying goodbye. Wow, what great service.

Was the trip worth it? Even though I'm stil recovering, it sure was!!!!

Made it

I've made it to Sydney. Feel totally washed out even though the trip went really well.

Need to rest.

On my way

We drove over the Bunker Hill Bridge in Boston to get to the airport. I've never seen a bridge quite like it. Looking up at the sky through the cables was beautiful.


Bunker Hill Bridge, Boston

I'm now sitting waiting for my luggage to be checked in and to get a boarding pass. The electronic check-in isn't an option as I have a suitcase with me and it needs to be checked in all the way through to Sydney. My daughter is waiting in the incredibly slow line while I sit and watch as I'm sure I wouldn't be able to stand that long.

I asked for wheelchair assistance when I arrived here about 15mins ago but so far none has come.

Hmmmm, I hope it isn't going to be a difficult trip. Talk later.

Difficult Days

The past few days have been very difficult. I have been struggling with blinding headaches and haven't been able to get much sleep at night. Yesterday afternoon I decided to have a "detox" bath in the hope it would help to calm my system down. 

I managed to get out of the bath and lie down. I then went on oxygen but it didn't seem to help much and I went into full on "Crash" mode. I was feeling so ill, my blood pressure plummeted, my heart was pounding and I couldn't move. As I lay there weeping it felt like my body was shutting down on me. Eventually it settled and I was able to get off to sleep and actually slept through the whole night.

Today it feels like the crisis is over. I am doing better than yesterday and the headaches have stopped, which is a great relief. However I don't have much time to regain my strength before the trip home. It is only three days till I start my long journey back to Australia. 

I'm in the Apartment on my own today, as my granddaughters are back at school and my daughter is at work. I have spent the day resting but I still feel exhausted and have very little energy. My health isn't as good as it was when I arrived and I must admit, I am getting a bit nervous about the travelling.

The weather here is still beautiful, the sun is shining and the breeze is cool. At times like this it is the simple things which lift my spirits and help me to get through the day.

Lazy days

The past few days have been quiet and peaceful. The weather has been so stunning I've been able to enjoy being outside, either lazying away at the pool or having picnics near the woods.

Our little picnics have been so peaceful and rejuvenating to us all. We just throw our blanket down under the pine trees and relax for an hour or two.

The view is so calming. I just love to feel the soft breeze on my face and hear the birds chirping.

I took this photo while looking up into the branches of the pine tree.

A couple of days ago a little chipmunk was scurrying around in the pool area munching away on some dropped cookie crumbs.

Yesterday I found these gorgeous petunias which had been planted in the car park at some local shops.

PEM & Payback

Yesterday I had a PEM day (Post Exertional Malaise) and spent most of it in bed in crash mode. Today has been a little better and I was able to spend the afternoon in the lounge room on the recliner watching a couple of movies.

I know the PEM is a direct result of doing too much on my extended birthday, but I think I would do it all again! It is often said that there are "no free lunches" with ME and payback is certainly a very real part of it.  

On a brighter side, I thought it might be nice to show you some of the things my Granddaughters and I have been doing while I've been here. Because of my limited ability to get around, the only place we can go if I am feeling well enough is to the pool. Apart from that we occupy our days with crafts and sewing. Cushion making, card making, origami, crocheting, baking, writing poems and home decorating.

Some of the cards we have made.

Our home decorating.

Cushions for their beds and yes, Shirley is still with me!

More Butterflies.

Birthday Madness

I'm having a fabulous time with my Birthday this year.

Because I was actually born in New Zealand, I looked up the time for Auckland a couple of days ago and it was already the 14th!

My Daughter and Granddaughters gave me presents and we went for a lovely drive into the country.

We had lunch at this quaint little cafe.

This lovely old house is now a gift shop called "The Black Swan".

That night I got an email from Australia saying it had just clocked over to the 14th, so, "Happy Birthday". Later that night the email continued ..."Your Southern Hemisphere birthday went well. We are having gluten free ham steaks with tomato and cheese. No cheese for you". "Most of us only have a local birthday but yours seems to be global".

It was still the 14th here so I had my Birthday all over again today.

I got woken this morning with breakfast in bed and my Granddaughters had decorated the house just for me.

This has been my longest Birthday ever and so much fun!

Seasons

My days here are passing like the seasons. One day it is hot and sunny with Summer in full swing. The next day I find a leaf on the ground, the first of the thousands to come. Autumn, or Fall as it is known here, is silently creeping up on me.

On the way to the pool I found this beautiful White Hybiscus in full bloom.

The colours of Autumn and the first of the many leaves that will fall.


My health has been as changeable as the seasons. I'm not exactly sure how the B12 is effecting my body. Some days are spent in bed, others relaxing down by the pool. I've crashed and recovered, lowered the dose and taken a Detox bath.

Today I am on my own and though the weather is lovely outside I chose to stay inside quietly resting. There are days when I long for the energy and vitality to climb mountains and run along the seashore. Other days, like today, I am content to just be.

As the saying goes, "Life is beautiful".

B12 Finally Arrived

The shipping of these two little vials has been a huge issue for me. Each 5ml vial contains B12 as a Hydroxycobalamin concentrate of 10mg/ml. The whole package only weighed 0.28 grams, was sent by DHL "Express Flyer" at a cost of Aussie $93.95 and should have only taken three days.

They were sent from Melbourne, Australia on July 24th (Aussie time) and I didn't get them until today, August 2nd (US time), nearly ten days later.

It seemed to be taking so long, I was beginning to think that maybe Tom Hanks and Wilson had my package with them on some deserted Island in the Pacific.

The ice had long melted and although I'm not sure of the integrity of the B12 now, I immediately gave myself a 0.2ml injection in the stomach.

Stabilised

After seeking advice from a local Wallgreens Pharmacist I started on a 2,000mcg B12 tablet.

I experienced a couple of ups and downs but seem to be doing OK now, although nowhere near as good as when I am giving myself the B12 injection daily.


I seem to have stabilised over the last two days and even went to a BBQ at the pool this evening.

It was great fun just lying back on the deck chair watching everyone enjoying themselves.

No sign of my B12 vials. Not very impressed with DHL at this point in time.

Slowly Winding Down

Like a windup toy slowly winding down,
Waiting for my B12 to come around,
Without it I am tired and bed bound.

After so much careful planning before I left Australia, I had to set off with only enough B12 to last me for about half the time I would be here. A combination of factors conspired against me... Australia Post delaying the delivery of the script to the Compounding Pharmacy, the Pharmacy not making it up straight away and finally, a Public Holiday the day before my flight.

I tried not to stress too much about it and just devised a plan B. First thing in the morning on the day I was to fly out of Sydney, I phoned the Pharmacy and arranged for the 4 vials I had ordered to be sent down to Melbourne. 

Next I organised a friend in Melbourne to have 2 of the vials sent over to me before I would need them. Unfortunately plan B has now turned into no plan at all.

They were sent a little late but I wasn't too concerned. I am now though, for although they went express with DHL, in a Styrofoam esky with an ice pack, they are being held up in LA. 

Over the past couple of days many emails and paperwork has been sent. Photocopies of everything including my Passport. The latest email says it may be another 2-4 working days before the are cleared and sent on.

So much for "Express", I was told it would take three days and I was even worried about it taking that long! The ice would have long melted by now and the potency of the vials compromised.

I have been without any B12 for over a week now and I feel as though each day I am slipping further and further down. The last two days have been "bed days".

My daughter took me to a local Pharmacy this evening and I talked with the Pharmacist but could only buy tablets which are a different type of B12 and have a significantly lower potency.

I won't be able to take any until the morning as they would likely keep me awake all night.

Swimming in the Rain

I took my Granddaughters to the pool again today. While we were there it started raining. As other families madly rushed off home, I moved our things and sat under the table with the beach umbrella.

I remembered the girls saying that nobody ever lets them swim in the rain and how cool it must be. Sure enough, they were ecstatic that they didn't have to get out of the water.

I smiled to myself earlier this evening when I heard one of them telling their Mum, how great it was that she could feel the rain hitting her feet when she was doing a handstand in the water.

Wow, the simple things in life can bring us so much joy.

The birds Of The Air

It's been a few days since I've posted, mainly because I've been resting and just taking it easy. 

I penned a little saying a while ago which I keep in my wallet...

"The birds of the air
Have not a care
And neither do I."

Somedays I say it to myself because I really don't have any cares, other days I say it because I am struggling to just get through the day. Lately it has been a mixture of both, but all in all I am doing well.

I took this photo a couple of years ago when I lived in Melbourne. This guy would visit me nearly every day, strut across my front lawn and come right up to my window and knock on it with his beak.

Many days he was my only companion and I appreciated his visits such a lot. Much to the disgust of the neighbours, I would throw out a handful of wild bird seed which he would immediately devour.

Hmmm, I guess I should make a confession here. Sometimes he would bring his whole flock and I would be feeding 30 or 40 cockatoos at a time, so maybe the neighbours weren't so bad after all.

Tired But Wired

Last night I was feeling "Tired But Wired". My body was exhausted but my brain was running at full speed ahead. I should have realised that something wasn't quite right when I was still on line, joining a new ME/CFS Forum, searching the Web and playing games on my iPad at midnight. When I finally went to bed it was well after one.

I was still tossing and turning at 2am when it dawned on me that I might not have taken my dinner time tablets. Sure enough, when I got up and checked, I hadn't taken them.

I used to get Tired But Wired a lot. In fact it was a very common occurrence for me in the first few years of the illness. Now I take Rivotril (Klonopin), Lexapro and Melatonin every night. This combination reduces my brain activity and helps me gently drift off to sleep, although I do still wake a few times during the night.

Dr. Paul R. Cheney, M.D., Ph.D., a prominent ME/CFS Dr. and an advocate for the use of Klonopin says, "...many patients report feeling exhausted, yet also strangely "wired." The "wired" feeling is the slight shift towards seizure that occurs as a result of the excitatory neurotoxicity".
http://www.prohealth.com/lirbrary/showarticle.cfm?libid=8021

My neurons were firing in overdrive last night.

Spoon Theory

Perhaps you have heard of "String Theory". It emerged in the 1980s as a new mathematical model of theoretical physics. It showed how all the particles, and all of the forms of energy in the universe, could be constructed by hypothetical one-dimensional "strings".

"Spoon Theory" was first termed by Christine Miserandino, a young woman suffering from Lupus. The full story can be found at www.butyoudontlooksick.com where Christine tells how she first used it to explain the limitations of her illness to a friend.

While Spoon Theory may not be as intellectually stimulating as String Theory, I was to able use it this morning to explain to my Granddaughters that I needed to prioritise what I would do today. Aged at just 8 and 11, they not only grasped the concept fully, they eagerly embraced it.

I told them that each spoon represented energy in the form of activities or tasks. Before I got ill, I had about 100 spoons to use each day, just like they do. Now that I am not well, I usually have only 15 or at most 20 spoons each day.

Today I only had 6 spoons and so I needed to very carefully plan how I would use them.

My youngest Granddaughter rushed into the kitchen and came back with theses 6 spoons.

Together we decided that the 6 spoons would be used as follows...

1 spoon = making breakfast. 
3 spoons = going to the pool (1- walking there, 1- being at the pool, 1- walking back home).
1 spoon = PEM.
1 spoon = having a shower.

I started the day feeling very tired and unwell, yet with realistic planning was able to get lots of rest and take my Granddaughters to the pool. All in all we had a lovely day.

Crash

Unfortunately the PEM turned into a "Crash". I've had a lot of neurological symptoms. Brain fog, constant headaches and uncontrollable body spasms and jerking. I'm so tired, so very tired.

I had a Detox bath and gave myself a B12 injection, took an antihistamine and headache tablets and sipped my electrolyte drink.

I've been in a darkened room on oxygen, with the air purifier on high. Apart from that all I can do is wait it out.

I took this photo at the "Butterfly Place" in Westford, Massachusetts a couple of years ago.

My Chrysalis
The darkness holds me gently in its soft healing hands
The silence enfolds me like the infinite grains of sand
On the shore of my life this day is to me
But one little grain of sand by the sea

Curled up in bed like a caterpillar sleeping
Encased in my chrysalis silently weeping
The tears rolling down my face gently fall
As I lay here and grieve the futility of it all

At other times I quietly accept the day
Yet all the time I'm longing to be far away
I dream of the days when I could run 
Dance and skip and play in the sun

Tomorrow will be a new day I know it is true
I await the day when all will be made new
And I emerge as a butterfly and uncurl my wings
How joyously then my heart will sing.

PEM and PER

Post Exertional Malaise (PEM) is a hallmark symptom of M.E. and unfortunately it kicked in today. What it basically means is I overdid it yesterday and have been living with the outcomes today. I didn't sleep very well last night and had a number of neurological symptoms this morning with milder ones throughout the day.

The way I have learnt to deal with PEM is to have Pre Emptive Rest (PER) and Post Exertional Rest (PER). Unfortunately I didn't have any Pre Emptive Rest the day before yesterday and so today I just had to have lots of Post Exertional Rest. I stayed inside all day and needed to lay down in bed a few times.

My Granddaughter took and edited this photo. I'm very proud of her!

On a positive note, I've noticed my pain levels have dropped dramatically since being here. Waking up in the night with pain is the exception rather than the rule. I think it must have something to do with the warmer weather, although I was still waking with pain in Summer back home. Perhaps it is also the barometric pressure or humidity?

Whatever the reason, it is a welcome relief.

Happy 4th of July

Independence Day, commonly known as the Fourth of July, is a federal holiday here in the United States.  It commemorates the adoption of the Declaration of Independence on July 4, 1776, declaring independence from the Kingdom of Great Britain. 

I found this great photo on the web. At the moment it sounds like thunder outside, there are fireworks going off everywhere! 

We had our own little celebration with sparklers and flags outside on the lawn.

Flower Show

I took my camera with me this morning so I could show you the beautiful flowers in the gardens around the pool. Although I recognise a lot of them, I don't know all their names.

Clean Air

Good clean air is a big issue with me. I have experienced a number of "Crashes" which I have been able to directly attribute to impure air of one kind or another.

I run the unit, which I ordered on Amazon after arriving here, with it sitting on the floor on top of the box it came in.

After only having the Air Purifier on for about a week and a half, I opened up it up to look at the first of the filters, the large particle and dust filter. I was amazed at how much dust it had collected. I am running it in a double bed size master bedroom.

The room is vacuumed regularly with a good vacuum and yet just look at the filter. It should be all black. I washed and dried it then put it back in the unit.

After seeing how well it is working, I decided to add it to my Amazon widget.

Hampton Beach

Yesterday we drove to Hampton Beach to see the Master Sand Sculpting Competition. It took about an hour to get there and the sculptures were absolutely beautiful.

First place went to this sculpture entitled "Continuum", by Carl D. Jara from Ohio.

This one entitled "Chaos & Order", by Karen Fralich from Canada was my favourite.

Unfortunately after the serenity of the beach I left in Australia, this beach was a nightmare! It wasn't just the wall to wall people that got to me. The day was hot and windy, the sand grey and gritty and the water felt like ice.

By the time we left for home I was feeling quite frazzled and some neurological symptoms had started to kick in. Fortunately, I had my Oxygenator in the car, so was able to go on oxygen for the drive home. 

Today I spent the morning in bed, drifting in and out of sleep. The rest of the day I have been resting on the recliner in the lounge and am feeling quite OK now.

PS -  My Flipstick came in handy, I used it to sit on a few times and even walked down onto the sand with it.