CFS Journey

19th July, 2013

This update has been a long time coming. So much has happened in the last year, and miraculously I am still here, even if only just.

In July 2012 after frequent heart arrhythmia’s and near total collapse, I was flown by air ambulance from my parents town up the coast to a major hospital here in Sydney, to where I have now moved.

[My view from the plane.]

Small Town Hospital Nightmare

In my parents small town, I was going to ER frequently (where many staff were absolutely horrible) with extreme weakness, palpitations and near inability to move, the lowest energy, shaking, stiff muscles and very difficult to even breathe (heavy/struggling breathing due to extremely low energy). They not only did nothing, they belittled me and/or ignored me and sent me home each time. Only when a specialist took me in via my GP did I get past the ER. Once I was sent home and I literally couldn’t move (was paralyzed basically), could barely breathe, and was shaking tremendously – they forced me out the back door in a wheelchair. When I got home my uncle had to rush over to carry me from the car into the house, where I shook violently for hours, struggling to hold onto my life. I used my usual life saving methods to get through it, as always including a big cortisone boost, and every drug or supplement I knew that helped me in any way to get more stable.

One Month in a Major Hospital

I was so thankful the specialist – got me in and flown to Sydney. It was an extremely hard trip. I was admitted to Royal North Shore hospital in Sydney by one of my old Gastroenterologists, who is one of the loveliest and kindest people I have ever met that works in medicine. I am and always will be so very greatful to him.

I was in for almost 4 weeks. They ran many tests, but unfortunately could not find any further answers to my worsening. The tests I feel were very standard and not looked in the right place. No ones fault really, but for my problem as my current wonderful GP says.. someone is definitely missing something with me. They need to look in more specific areas, outside the box. (e.g. my current GP 2012/13 onward found some genetic abnormalities no hospital ever has). CFS and related conditions are all about some very skewed biochemistry that does NOT have any standard tests yet in mainstream medicine, unfortunately for us.

By the end of the stay some of the staff were not treating me very nicely, because most of the tests were coming back relatively normal. So the talk amongst themselves was not helpful for me at all being in there, and made me very sad. Extremely common for CFS patients unfortunately (see voices from the shadows preview on the Video’s page). cfsjourney.org/videos

Life Saving Discoveries

In hospital I was contacting all sorts of people in the health world, and going over my notes to try work things out. Here I also got back onto high dose vitamin C, which is I would say, one of the ONLY reasons I am still here. With my level and type of CFS, the body is in a state of severe oxidative stress. High dose C not only combats that, but helps nearly every aspect of the human body. I actually picked up a bit soon after getting back on this. I was taking 20 grams a day at the time. I also developed my own elemental formula drink (as the medical ones contained so much pure sugar as maltodextrin or glucose, and severely increased low grade infections in my body). This drink contains non sugar carbs and the essential amino acids. So I could finally get more protein into my body, as I could not tolerate protein foods at all at this time. Despite the slight stabilization, no answers were found, so a gradual decline still continued.

The Lodges

I moved from hospital to stay at a lodge nearby. It was nice enough, and good to be out of the hospital environment. I kept on with the various treatments of my own I was trying.. and got slightly more stable to a degree because of them. I was there for about 3 months, before moving to a different lodge, which was also very nice (North Sydney).

These places were a respite after the hospital traumas. Met lots of interesting people, and helped a few along the way. Always a rewarding thing at any stage of life!

Moving In

Decided to stay in Sydney and therefore looked for a place over the next couple of months near my brother. Stayed with a good family friend while looking after leaving the lodge, and moved into my own place with my awesome old family friend Kev, end of April 2013. It’s been so nice in one way to be finally away from all the commotion of intense medical settings, or places which weren’t my own. It is at least.. a calm in the massive storm.

Chris.

Click for My Story: | Part 1 | Part 2: 7 Weeks in Hospital | Part 3: Heart & ER | Part 4: Hospital Again – No Answers | Part 5: Long overdue update! 2012-2017