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.