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Life Must Go On

Posted May 26 2013 5:00pm

After the previous post/rant, the situation kept on “borderline trauma”. I crashed a couple of times because of the stress, and the stress made my ME/CFS exacerbate.

I had another rant drafted, but I decided not to post it. I had enough. I hate the fact that my life is filled with stress, frustration, isolation, and struggle. I hated my life. I hated my illness. And I hated that I have no control to change it. I didn’t want to look at it. I didn’t want to think about. I went into mental shut down mode.

I report positive things for now…

My transport support was reinstated. (Nobody informed me about it, though…) I can request a passenger car and recline the seat up to 45 degree in order to avoid collapsing during the trip. However, they won’t transport my wheelchair anymore. My treating doctor’s clinic would let me use their wheelchair on arrival, so I try not to be depressed about it.

The most important thing is that I can still see the doctor who has knowledge of my conditions and “treat” them.

I finally got an email address that I can use to communicate with Anglicare, which is essential for a person with neurocognitive problem with an inconvenient and short functioning hours in a day.

I had to cancel the blood collection appointment for , because of the on-going transport problems. I was very disappointed.

Then, I found that NCNED is recruiting research participants who are severely affected by ME/CFS. I’m on their list for possible participation in July. *fingers crossed* With the severe ME/CFS research, a researcher and a GP will come to my place to collect blood and to ask questions.

Participating in a meaningful biomedical research gives me the hope and the purpose that keeps me hanging in there. I’m also very pleased that they also research on severely affected patients, because different severity feels like different illnesses. The team is confident that they will find pathological marks and cause of ME/CFS. (I’m not so optimistic about finding the cause of ME/CFS… But, I’m not the scientist. They must know better. Right?)

Earlier this month, I had an appointment with Dr GD. I was very nervous about transport arrangement, but was relieved that email communication worked well and I had my favourite driver for the trip.

As usual, Dr GD was kind with a hint of cheekiness.

I reported that I’m trying a modified version of Methylation Protocol. Modified version means I selected the supplements to suit my situation. Since the Methylation Protocol itself is work in progress, I didn’t see any harm in try my way and learn. I’m also trying Reduced Glutathion, in case Methylation Protocol doesn’t work for me. “Reduced” means more bio-available.

Conversation went smooths without needing explaining what it is. He wondered if I was consulted with Dr Myhill about it. I learnt about it on internet. I red her website as well, but I’m not her patient. With my understanding, Dr Myhill’s version has more supplements than Dr Rich Van Konynenburg’s version . Since I’m already taking most of the supplements listed, I feel it doesn’t matter who’s version I’m following. It’s more like adding the missing supplements.

I had another annual letter from Logan Hospital asking if I still want to see their specialist. If I do, I have to return the letter to them. The referral was made in 2010 for my moderately severe restriction to lung capacity. I started to think there is no point of remaining on the waiting list as it seems they won’t give me the specialist appointment.

I asked Dr GD’s opinion about it. He said I need to remain on the waiting list to see the specialist. So, I did.

My long list of prescriptions were issued without any problem. He also wrote a medical certificate for my Class 2 Compression Stockings, as it’s required to purchase them at Chemist. (I’ve already purchased them online, but I still like to do the right thing.)

I also had an appointment with a female doctor at the same clinic and had Pap Smear done. She also accepted to be my “female issue” doctor, if I need.  According to her, this is a preferable arrangement with Dr GD as he is not so keen on female issues and they share patients between them. And it saves unnecessary uncomfortableness for me.

As usual, all staff at the clinic was friendly and supportive. They keep their eyes on patients and offer help without being asked. I was surprised and grateful.

Every chronically ill patients need a doctor who understands and treats their illnesses. Every patients need to be heard by their doctors. Every patients need to be respected by their doctors.

Sadly, misunderstandings, ignorance, and stigma against ME/CFS by medical practitioners are quite bad here. (It’s probably bad all over the world…) I know how lucky I am to have Dr GD and have the transport support to be able to see him.

Physically, I’m still on exacerbation. Mentally I feel a little easier now.

===

Links to some of the information you might be interested.

National Centre for Neuroimmunology and Emerging Diseases (NCNED) 

NCNED is still recruiting severely affected patients on the Gold Coast and around Brisbane area. If you wish to participate, contact email is posted at their Facebook page. Perhaps, you could also “Like” their page to show your support…

Gold Coast centre holds up hope on chronic fatigue syndrome | Queensland Government

Gold Coast centre gives hope for chronic fatigue syndrome | Griffith News

Bid to solve chronic fatigue riddle | Sky News

Alison Hunter Memorial Foundation announces Fundraising for Flow Cytometer (Cost AUS$200,000) | Alison Hunter Memorial Foundation

Alison Hunter Memorial Foundation is still fundraising for the new Flow Cytometer for NCNED. Please spread the word so that they can purchase this critical machine for many researches planned in the future.

Methylation Protocol

Glutathione and the Methylation Cycle by Rich Von Konynenburg Ph.D | Phoenix Rising

Simplified Methylation Treatment Plan for Chronic Fatigue Syndrome (CFS) by Rich van Konynenburg, Ph.D. | Health Rising

The Methylation Protocol for ME/CFS as of August 2012: Many See Benefits | ProHealth

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