Home again

I left Melbourne at 8:00 this morning and arrived home at 8:00 tonight. The day was beautiful and the drive enjoyable but I can already feel a "crash" coming on. My heart feels like it has a brick stuck to it and my breathing is laboured. I've had a quick shower and must get into bed and go on oxygen.

I've just checked my email and have received an email from American Airlines. Great!

NO, it has a form attached which I have to get my Dr. to fill in. The Dr. I went to Melbourne to see. I have just driven the 1,800klm round trip to get him to fill in all my other forms and now this comes.

I could cry, maybe I'll crawl into bed and have a good old howl.

A glorious day driving

I slept well last night and left just after eight this morning. The weather has been fabulous. I can hardly believe it is winter!

I'm nearly half way and have stopped at Holbrook. This little country town is famous for it's submarines.

A 1/5 scale model of a B11 Submarine.

My car is dwarfed by the decommisioned Submarine, HMAS Otway, which sits proudly in the middle of a park four hours drive from the nearest ocean!

I enjoyed my peanut butter sandwich I made for lunch and am on my way again.

Hire a Van

And a free man!

Yay! I have a solution to the removalist problem. A friend has offered to hire a van, drive it up to the beach, load it and drive it back down.

He will unload it at my unit for me to come home to after my trip. The cost of the van and the petrol will be around $900, which is pretty much the bond amount from the beach house. 

It means that I will have to drive back home tomorrow to get everything sorted out in time.

It's early to bed for me tonight and hopefully an early morning start.

Injections

This morning I faxed four forms to Qantas Special Handling, had three scripts filled at the local Chemist and sent another script in the mail to be made up by a Compounding Pharmacy in Sydney.

This afternoon I dropped off five sharps containers of used syringes at the local needle exchange centre.

I use a syringe like these every day to inject Vitamin B12 into my stomach.

Doctors visit

Wow, I made it to the Drs.

My appointment went very well. He was pleased with me and I was pleased with him. Not only did he recommend a new treatment to help with the pain and neurological symptoms, he patiently signed and stamped all my travel forms. I'm very grateful to be a patient of his.

While I was sitting waiting to see him a lovely friend, who I haven't seen since I moved to the beach, unexpectedly called in just to say hello. Good friends make all the difference!!!

I drove back here after the Drs visit, laid down in bed and went on oxygen for about three hours. Then I drove to have a look at the unit I will be moving back to after my trip to the States.

A winter sunset at the unit.

Neurological Exhaustion

I experienced more pain in the night and woke this morning with typical P.E.N.E. (Post Exertional Neurological Exhaustion). Or to put it more simply, I am in "crash" mode. Crash mode is when the Mac Truck and the Mad Elephant have paid me a visit.

My body was jerking and I felt ten times heavier, my head was fuzzy and hurting. I was short of breath, weepy, and exhausted. I needed help to get out of bed to get to the toilet and have spent the day in bed on oxygen.

Slowly, as the day has gone on, I've progressed through the worst of the symptoms. The jerking and spasms have stopped and my head is clearer. 

Hopefully tomorrow will be better. It needs to be, I've got to get to my Drs appointment.

Thank you to those who sent me well wishes. Very much appreciated!

Well done Mark!

Photo from The UK Telegraph



Proud of our Aussie boy!

I'm feeling really ill, so will post later.

Melbourne

I arrived at 9:00pm. The drive was 900 klms (560 miles) and took eleven and a half hours. Phew!!!

I stopped regularly for short breaks and was on oxygen while driving for an hour or two at a time. Although I enjoyed the drive, the last hour and a half amounted to a lot of sensory overload.

You won't believe what I'm doing now? After all the driving today, I'm watching the F1 Grand Prix.

I follow Mark Webber and just couldn't miss the race as he was starting on poll.

On the road again

I left home at 9:30 this morning. I wanted to leave earlier but had woken two or three times in the night with pain, so I slept in.

The drive has been very peaceful so far. I have driven past dairy farms, sheep farms, cattle farms, crop farms and even a wind farm!

The scenery has been as varied as it has been beautiful. I went up and down a mountain, through lush green valleys and across miles of typical Aussie countryside.

This gorgeous water fall was in the mountain.

I stopped at Snake Gully, 5 miles from Gundagai to get a look at the famous, "Dog on the tucker box".


I'm a little over half way...must press on.

Choices

I made a choice today. I was about to fall in a heap and cry, immobilised by the enormity of the situation facing me. Instead I sat down and thought, just because my plans weren't going smoothly, it didn't mean I had to abandon them. I simply needed a little bit of help.

So I picked up the phone and asked my sister for help with the packing. A lot of sorting out got done this afternoon and my car is even packed ready for my eleven hour drive tomorrow. 

I know a lot of people with M.E. can't drive very far, if at all.


I am so very grateful that I can. I get in my car, put on an audio book, and just go!

Don't get me wrong. I'm not saying it's easy. I drive carefully, stop very frequently and usually have to have a sleep or two along the way.

Even so, when you can no longer run or even walk very far, the freedom driving gives is marvellous!

18 Days and counting...

My oh my, things are getting more and more complicated!

I've made the decision to move back to where I used to live and so now I have to get everything moved back. 

I haven't found a removalist yet. One company phoned my back this morning and the quote was $2,600. Money I just haven't got at the moment. When I moved here a year ago the removalist cost was only $990, as I was able to get a backload. Hoping and praying for something similar. Still have a lot of packing to get done.

I have an appointment with my M.E. Dr. next week. This means I'll have an eleven hour drive down to Melbourne to see him. I'll stay over for a few days and then drive back here to finalise everything.

I think that while I'm in Melbourne, I'll ask my son to sell my computer for me on eBay. I hardly use it any more as I'm mostly on the iPad. The cash will come in handy. I need a buyer QUICK.

I woke this morning, got some breakfast and ate it in bed, then fell back to sleep untill after one in the afternoon. I'm trying really hard to pace myself and not do too much at once or I'll end up in crash mode.

I could do with a few of Charlie's Oompa Loompas.

American Airlines

After I arrive in Los Angeles I have a domestic flight of approximately 5 and a half hours with American Airlines.

Whoa...what to say about American Airlines?

I phoned the airline on the 15th and had a very unsatisfactory conversation with an Asian call centre person. Not only did I have great difficulty understanding her English, she had difficulty understanding mine!

I requested Gluten Free Meals, Wheelchair Assistance, and informed her I would be travelling with a Portable Oxygen Concentrator (POC). She took down my home and mobile numbers and said a Special Assistance Person would call me back.

After waiting nine days I thought it about time I called them. I was told, by a similar sounding woman, that the system was down and would I please call back again.

I dutifully phoned back half an hour later and, wow, this Asian spoke good English! She was very polite but unfortunately knew very little. I was asked to hold while she contacted her help desk three times. The end result was that she took my phone numbers and told me that the Special Assistance Department (SAD) would give me a call A.S.A.P.

I hope the flight is better then the call centre!

I have also realised that for this leg of my journey, I need to print out more paperwork for my Dr. to fill in, sign and stamp!

1- A Physician Prescription form for Oxygen.
2- A Physician Statement form about my use of Oxygen.

I'm trying very hard not to get stressed but feel tired just thinking about it all!

This Life

In the stillness of the night, when dreams evade me
I think of my former days, of health and vitality
I wonder will they return, or are they forever gone 
Lost in this no mans land, of life without a song

My world is shrinking, to four walls and a bed
I lay here resting, when I want to run instead
I am an explorer, an adventurer I shout
Can you not see, I'm desperate to get out

I will crawl if I cannot walk, walk if I cannot run
Life beckons me, it calls for me to come
I savour the sweet moments, the sun on my face
The warmth and happiness of a child's embrace

There are no limitations, that cannot be faced
No crippling disappointments that cannot be erased
Life is for living, so I'll live with all my might
This life that comes but once, I'll live it in the light.

Psychologist

I have my last appointment with my local Psychologist today. I have been blessed to have been referred to a very caring and professional  young woman.

No I'm not crazy. I'm just unwell.

The Psychologist was actually my idea. I went to my local Dr. and asked to be put on a Medicare  funded "Mental Health Plan". This plan enabled me to see a Psychologist for six sessions which have all been paid for by Medicare. 

I didn't go to be told I am not really ill or that if I think differently I can cure myself. 

I went to get coping tools to help me live a better quality of life. To not be afraid of the times of debilitating pain and illness. To be able to rise above the inevitable storms and depression that come with any chronic illness.

I've learn't to "ride the wave" when life seems overwhelming. To know that tomorrow will be a new day, and that no matter how high and ferocious the wave is, it will eventually break and gently slide up the shore before receding out of my life.

Hoc quoque transibit - This too shall pass

This lovely young woman used "Scheema" based Conitive Behavioral Therapy (CBT) to help me to recognise that when under stress I was reverting back to patterns of behaviour learnt in childhood. In recognising these patterns I have been able to challenge them and choose other, more constructive ways of coping. I know this will hold me in good steed as I manoeuvre through the ups and downs of my trip.

Travel Insurance

Travel Insurance is a real nightmare. Not only is it expensive, they don't cover anything which is pre existing.

Basically I can only get coverage for any accidents, the loss of my luggage and, of course, if I die!

The online quotes range from $380 to $505. I wish it was simply a question of choosing the cheapest,  but there is so much fine print to read in the product disclosure statements.

This clause eliminates me from all coverage!

It's been a long day. I've spent time packing for my move, making phone calls, and searching on the internet for both travel insurance and a furniture removalist. Interspersed throughout the day, I have had little rests where I have sat and gone on Oxygen. Right now my head feels like it is splitting in two.

The packing is progressing slowly.

Spick and Span

Multiple Chemical Sensitivities (MCS) is a common co-morbid condition associated with M.E. For me it means that my body cannot tolerate a lot of the things I used to take for granted. Consequently, the usual array of household cleaners are no longer an option. 

This afternoon my sister did a "detox" house clean for me. She did a thorough clean using old fashioned things our Mum would have used in her youth, before the advent of the vast array of chemicals that are found in most homes today.

White Vinegar is effective for killing most mold, bacteria, and germs, due to its level of acidity. 

Eucalyptus Oil kills 99.9% of germs, dust mites in bedding and is a good natural deodoriser.

A paste made from baking soda and water is very effective when used in cleaning and scrubbing.

The house is gloriously fresh and clean without the use of harsh chemicals.

Qantas

Phoning Qantas about my upcoming trip was an adventure all in itself. That is, if you can call being transferred from one person to another an adventure.

Finally, after speaking with Qantas Special Handling, I have informed them that I...

1- Need Wheelchair Assistance.
2- Require Gluten Free meals.
3- Bring medications, including one which needs to be kept cold.
4- Will have Hypodermic Syringes with me.
5- Have a Portable Oxygen Concentrator for use on the plane.
6- Won't be travelling with any Check In baggage.

Phew, all done....not quite. 

Now I have to print out all the relevant forms from their web site, get them filled in by my Dr. and fax them back to Qantas.

1- Travel Clearance Form. This is an 8 page document consisting of 1 page for me to read, 6 pages for my Dr. to read then an additional page for my Dr. to fill in, sign and stamp.
2- Authorised Medical Support Equipment. 4 pages for me to read then tick the appropriate boxes in relation to my Oxygen Concentrator.

It was also suggested I should...

- Get a Medication Summary from my Dr.
- Have a cooler pack for the medication which needs to be kept cold.
- Bring my medications in original packaging and put them all in a clear zip lock bag.
- Carry my syringes in a hard clear plastic container with a letter from my Dr.
- Have a letter from my Dr. explaining why I will not be taking checked in luggage.

Flipstick

My fold away "FlipStick" is a godsend! I bought it the last time I was travelling to America and it was invaluable. 

One of my issues with M.E. is - POTS (Postural Orthostatic Tachycardia Syndrome) or more commonly called OI, (Orthostatic Intolerance).

Having POTS means I am unable to stand still for very long. Standing in waiting lines causes my blood pressure and heart rate to go crazy. Not only do I feel faint and nauseas at the time, the next day I'll be stuck in bed feeling much worse.

This handy little walking stick is great. It comes in it's own shoulder bag and is very light and portable.

It quickly folds out,

to become a sturdy walking stick with a comfortable grip handle.

When I'm stuck in a line or just tired, with the press of a button, it converts into a handy little seat.




This fantastic walking stick is a great help and will definitely be coming with me on my trip!

Money, money, money

Picked up my $US from the post office yesterday.

I will be needing cash for giving tips to the wheelchair assistance people at the US Airports. I have been told that $5 is an OK tip, but I try to give a little more as these people are usually very nice and have to survive on a minimum wage.

Having money for a magazine to read, some food and coffee is also a good idea. Sometimes a 2 or 3 hour wait at an airport can turn into a 9 or 10 hour one. My motto is..."Be prepared, just in case".

As soon as the plane takes off and is in cruise mode I empty my purse of any Aussie money, put it into a plastic zip lock bag, then put in the currency of the country I'm heading to. Nothing worse than having someone look at you queerly because you're trying to pay for something with the wrong money, and according to "Murphy's Law", it's bound to happen when you're at the front of a long queue!

Sunshine and Vit D

Wow, it's a great big sunny day today!

The beach beckons...

A while ago my Vit D levels were dangerously low. I was put on Vit D tablets by my M.E. Dr. and told to get out into the sun.

Nothing beats the warm sunshine on your skin, it makes much more Vit D than you can get from supplements. I love to put a natural sunscreen on my face and just lie back and soak up all the goodness.

The salt air is incredibly invigorating as well. I do deep breathing to get it right into the bottom of my lungs then force all the stale air out with a whoosh.

After reading somewhere that burying your toes in the sand helps to "earth" your body,  I also make a point of burying my toes and giving them a good wriggle. It feels great!

Detox

I had a 'Detox' bath last night and it made a big difference to the level of pain I experienced during the night. I try to have one each week. It is a very simple treatment, one which can, over time, bring a lot of improvement. 

It is recommended by Dr Sarah Myhill, a UK Dr. who specialises in treating M.E. patients, as well as by many other Drs. 

Tests done by my M.E. Dr. here in Australia showed I tested positive for Thimerosal (an Organomercury compound),  Methylmercury, and Nickel. By having a hot 20 min Epsom Salt Bath regularly I can lower the chemical load in my body by drawing toxins out through the skin. Another benefit of the bath is that it also puts Magnesium into my body. 

Along with the Detox Baths I have recently started having FIR Saunas, which are also recommended by Dr Myhill.

Just 20 mins in this portable Far Infra Red Sauna sweats out many more toxins.

Just zip it up and relax. The important thing with the sauna is to rehydrate both during and after the sauna. It is also imperative to shower immediately afterwards to wash off the toxins which have been sweated out.

Frugalitis

I've been experiencing an attack of frugal-'itis'. I'm sure many of you also priodically suffer from this, maybe you just don't recognise it. In my case it started with my shoes then moved on to my stockings.

The soles of my orthotic sandals needed to be glued back in.

The finished product! Great for travelling!

One of my special Travel Stockings needed mending.




Unfortunately I'm not rolling in money. In fact without the help of my family there is no way I could get by day to day, let alone travel. My tickets to America were "purchased" for me with a friends Frequent Flyer points and I'll be staying with my daughter while I'm away.

Check List

Even though last night was difficult, I've had a quiet and productive day today.

Most of the day I stayed in bed, but was still able to sort a few things out towards my trip.

1- Found Passport and made sure it was valid.
2- Completed the on line ESTA Visa application for America.
3- Ordered US$200 from the Post Office.
4- Gave notice to vacate here at the end of my Lease.

Did I mention...my lease is up just 3 days before I leave for the States. I could have renewed it but I had an issue with mould a few weeks ago which made me very ill.



I have loved being here, so close to the beach. I'm not sure what I'll do when I get back after the trip. Just have to cross that bridge when I come to it.

Pain!

Pain , pain go away,
Don't come back another day!

I only got about 3 hours sleep last night. My body was wracked with pain. Hips, head, legs, even my toes were aching and cramping up. On top of all that, I just couldn't get warm. My body thermostat was set at zero and no matter how much I tried, it wouldn't budge. I ended up curling under the blankets in a foetal position and waited for morning.

Tonight I'll take a half a 'Restavit' tablet, maybe that will help. Hope so. Got to get some sleep!

Mothers' Day

Today is Mothers' Day and it has been bitter sweet for me. I have felt quite well today, even though I got very little sleep last night. I just seemed to toss and turn, perhaps because I realised it would be the first time since I became a Mum that I have had a Mothers' Day without my children around me. My son is living interstate and my daughter and granddaughters in America.

My own Mum died 4 years ago, so this afternoon one of my sisters and I went to the Cemetary, to 'visit' our Mum and attend a special Mothers' Day service. It was sad and yet very comforting.

Tonight I feel quite drained emotionally but hope that I'll be feeling OK tomorrow. A well documented side of M.E. is that emotional stressors can be as debilitating as physical ones.

The days are counting down and there is still so much to organise for my trip.

Oxygen

Today is a new day, thank God for that! Yesterday was a very difficult day, but I got through it. I opened my eyes this morning and knew I was OK. I've spent the day in bed today, but just resting, not ill.

You may have noticed the nasal cannula in yesterday's photo, so I thought today I would share a photo of my portable oxygen concentrator.

Inogen One, my constant companion & friend.

The Mac Truck & The Mad Elephant

I woke up this morning and a Mac truck had run over me in the night. I couldn't move so I just lay there for a couple of hours. This illness is so frustrating!!!

I felt Ok yesterday, but today is a different story altogether. Yesterday I ambled down to the beach, today I just managed to shuffle to the loo. My body feels like it is ten times heavier, my head is splitting in two, my face looks so pale my lips have disappeared. Maybe a vampire was riding in the truck.

No smiles today, just Oxygen.

I know you don't know what I am talking about, so below is an entry from my journal for the 28th of June, 2010...

ME - Mad Elephant 

You've heard of MC, Mad Cow disease, well I've got ME, Mad Elephant. You know how an elephant never forgets, well I forget almost everything. And on some days I feel as though I'm as mad as a hatter.

I have lists for everything I do and stick it notes stuck all over the house. I tick off, when I take my morning tablets, my nighttime tablets, the tablets I take with food, when I give myself a B12 shot in the stomach, when I drink my electrolyte drinks, when I drink billions of bacteria, when I lay down and suck on oxygen for an hour, and oh, thats right, how many glasses of water I drink each day.

I know for sure I've got ME, I've been properly diagnosed by two specialists. It's ME all right. I've had what seems like dozens of tests...blood tests, urine tests, a saliva test, an orthostatic intolerance standing test, a hydrogen breath test, food allergy tests, an x-ray, an ultrasound, and even a poo test. I've been prodded and poked, I've filled in questionnaires and forked out zillions of dollars (well maybe not quite that much, but close to it).

I don't know how I got it, this Mad Elephant disease. One day I was well, just like everyone else and the next day I just barely woke up. I opened my eyes and it felt like a Mac truck had run over me. A few months before I had been in bed for weeks with Glandular Fever (Mono) but I'd gotten over it, or at least I thought I had.

I don't think I got it from eating Elephants, like you get Mad Cow from eating Cows. at least I don't think I've eaten any Elephant....maybe I have but just didn't know at the time. I have been to Africa, and come to think of it, I've been to India too. I ate some strange curries in India and in Africa I ate biltong, but I thought it was just dried Ostrich or something like that.

Since that first night the same Mac truck has visited me again, quite a few times actually, why he targets me I don't know? Sometimes it happens in the daytime but most often it's at night. I lay down, close my eyes and eventually drift off to sleep. In the morning or sometimes in the middle of the night, I open my eyes and I just know he's been back again. I can hardly move. 

He's a sadist, this Mac truck driver. He drives his truck at full speed and makes a B line for me. After He knocks me down, he stops the truck and casually walks back to where I'm lying on the side of the road. My eyes are open but I'm in shock, he looks down at me then turns and walks back to his truck. From behind his seat he gets out a blanket and carries it over to where I'm lying. 

Oh what a relief I think, but no, as the blanket touches me I realize that it's made of some kind of soft lead. It's so heavy it settles over me like a deadweight and I can't move. As if to make sure I can't, he searches around in the grass beside the road and finds a house brick which he promptly lays on my chest.

"I'll go get help", he says, walks back to the truck and drives off, but help never comes. I lay there waiting, but it never comes. It just never comes.

There are days when inwardly I rage and stampede like the Mad Elephant that has taken over my body, but it does me no good. I am who I am and I have what I have.

I long for the days when I could do what I wanted, whenever I wanted, but this Mad Elephant has me now and it just won't let me!      

32 Days to D day!

It's only 32 days until I depart from Sydney Airport. You might be wondering what all the fuss is about? Because I am not like a "normal" person there are so many "extra" things to organise and prepare.

The first thing is I decided that I wouldn't be taking any check in luggage with me this time. I just can't handle it and want to be as self sufficient as possible. This means I have to be very specific with my hand luggage packing. Basically, I'll only be taking the absolute minimum.

Even so, I am on oxygen so my Portable Oxygen Concentrator has to travel with me. This involves phoning the airlines and informing them I will be taking it on the planes (Qantas and AA). Printing out numerous forms for my Dr to fill in both for the Australian authorities and the American ones.

The good thing is I will be staying with family in America. This means I can beg, borrow or buy what I need when I'm there.

What a fabulous day!

I woke this morning feeling quite well. The sun was shining, the birds singing and I could hear the roar of the waves in the distance. I rested up in bed for the morning then just couldn't resist the pull of the ocean.

Early afternoon I walked down to the beach. WOW, is it really Winter?

I love this spot, I'm almost there. I can hear the waves and smell to salt in the air.

I paddled in the water, dug my feet into the sand and did some deep breathing before ambling home again.

Hi there...

While I may be new to blogging I am not new to travelling. However after being diagnosed with M.E. (Myalgic Encephalomyelitis) I thought my travelling days were over. Not so!!!

Here at home I live a very sedate and orderly life, I have to, in order to survive this illness and retain my sanity. It isn't easy living with M.E. (just ask anyone who has been diagnosed with it). While travelling can be unpredictable, frustrating and exhausting at the best of times. It can be an absolute nightmare for some, including the elderly, the disabled and the unwell.

However, with careful planning and preperation I am hoping that my three months away will not only be bearable but enjoyable as well.

What exactly is M.E.?

M.E. is Myalgic Encephalomyelitis, but depending on which country you live in it is sometimes called...CFS (Chronic Fatigue Syndrome), CFIDS (Chronic Fatigue Immune Dysfunction Syndrome), PVFS (Post-Viral Fatigue Syndrome) and ME/CFS, amongst others.

The World Health Organisation (WHO), classifies it as a Neuro Immune Desease. It effects many different parts of the body and leaves the patient with numerous health issues including...

Debilitating fatigue, brain fog, mental and physical exhaustion, poor short term memory, widespread joint and body pain, unrefreshing sleep, orthostatic intolerance (POTS or NMH), dizzyness, nausea, inability to properly control body temperature (sweats and chills), headaches, IBS symptoms, post-exertional malaise, cardiac and respiratory problems, tender lymph nodes, the list goes on...

If you like you can look up "Chronic Fatigue Syndrome" on Wikipedia for a full run down on the disease.