Monday, January 31, 2011

My Day & More Tests!

   Well, today I had a horrible pain day. All my joints were extra loose and kept going to dislocate on me, and I was so sore I could hardly get around. I spent most of the day lying in bed! I didn't get to leave the house. Tomorrow, I have to go and have a full body three phase bone scan done. I am a bit nervous about it! I have had this type of scan done before on my knees and feet, but never on my whole body before. I am so stiff and sore, I am worried about having to lie still for half an hour to have the scans done. I was hoping that we might be able to go out for lunch in between my scans, but everyone is on diets, so mum said no :(. I feel sad about that, but we can have lunch at the shopping centre, though. I have to have a heap of blood tests this week too, but I don't think I will have the energy to do both on the same day, so they will have to wait. 
   I am being tested for pretty much anything and everything that could possibly be causing my joints to swell and hurt the way they do. In a way, I really want them to find something that they can fix, but at the same time, I am scared that they will find something bad, or something that they can't fix, or nothing at all (which will make me feel crazy!) 
   Anyway, I'm sure it will be ok. 

~Adrielle =) 

Friday, January 28, 2011

Crane Building!

I went to sleep last night with a terrible headache that mersyndol, panadol and morphine wouldn't touch. I woke up with the shadow of that incredibly evil headache still haunting me, and therefore was forced to sleep most of the day away! I am now awake, though, and I am hard at work!

So, what am I doing right now... 

I am researching and planning how to build a crane! 
Picture  borrowed from

No, not the bird type, the machinery lifty type!

Image borrowed from

I'm not crazy, it's all in the name of art! It is part of my assignment for the 3D art and animation course I am doing through AIE :) 

Although it is less exciting, I am not actually building the crane in real life, either. Instead, I have to make it in 3DsMax (some very fancy 3D modelling, animation and rendering software), and save and send the file to my teachers so that my work can be graded (along with the rest of my little factory!)

You may have seen my crusher and furnace that I made this week - the crane is to go along with those two machines, and a conveyor belt (when I manage to get the conveyor belt tutorial working! Emails have been sent!)

Anywayz, now you know what I am doing! 

~Adrielle =) 

Monday, January 24, 2011

Well, today was a lazy day =). I was having a kinda bad pain day, and was really tired, so I stayed home and relaxed. (I did do three minutes of aerobics and two minutes of arm strengthening exercises on Wii Fit Plus, though! - That is an achievement for me with ME/CFS, EDS and FM!) I am really pleased that I have been losing some of the weight that I put on while I was on prednisone!

Also today, I tidied up my PC hard drives. I am currently in the process of creating bootable recovery disks for them, in case anything happens to my computer. I remember years ago when my whole hard drive was only 13.5GBs of data... now I have more than 30GB in photos and artwork alone! I think I am going to go through a lot of disks! 

Anyway, since my day has been pretty uneventful, I don't have a lot to write! 

~Adrielle =)

Friday, January 21, 2011

Bloggy Clean Up!

Well, I just went through and put labels on all of my blog posts! lol!  I also made sure that they were all written in large font. (I have trouble reading small writing, especially when I am tired!) =D

~Adrielle =)

Monday, January 17, 2011

Riled by the Sellers of Fake Cures

Vultures who sell alleged "cures" for illnesses such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia make  me so mad. Having an illness that is invisible and incurable for years can make you pretty desperate; desperate enough to try anything that promises a cure! These vultures seemingly have no limits to the manipulation they will use in order to sell their alleged remedies. We are told that we should have open minds to alternative therapies. We should be willing to try things that might make us better - or don't we want to get better?

The proponents of these alleged "cures" always seem to have loads of "real" testimonials from people whom they have miraculously "cured". These testimonials can convince a vulnerable, sick and desperate patient to give it ago (often against their usually better judgement). After all, if all of those people has such miraculous success, so might they! These fake "cures" are generally expensive, and they often require lengthy time frames to see their "effects" (although I found one "cure" that apparently worked in just one week!). But you'd be willing to pay anything if it meant that you would be cured, right? It would be worth every penny! The problem with these "cures" is that they don't actually cure. 

In my opinion, preying on the desperation of the sick is just disgusting. A simple google search yielded a few prime examples of these "cures". If they were not so despicable, the insanity of these alleged cures would make me giggle! For example, one such "cure", calling itself the "Fibromyalgia Diet" alleges that it can cure brain fog in a single week, and that it is a "reliable Fibromyalgia treatment". It also claims that it can cure your "depression", "despair" and "sadness and tears". Hmm, I read a little further to discover all of the things that the Fibromyalgia Diet promises you:

* "No pain and no need of pain killers"
* "No stiffness but easy and flexible movement"
* "No depression but joy and radiance"
* "No fatigue but gain energy"
* "No headaches any more"
* "Improved memory"
* "You study better for your exams"
* "Improved concentration"
* "You are back to work and full of value - you get financial stability, you can afford your dream holidays etc."

Wow- it must be some diet! I mean, who can argue with "joy", "radiance" and "dream holidays"!? All you have to do is purchase their e-book for $27.50! Oh, and you must "want" to recover (in other words, if it doesn't cure you/let you afford your dream holidays, you didn't "want" to be cured). I don't doubt that changes to diet can improve Fibromyalgia symptoms, but unfortunately I do not believe that it is a cure.

A second fake cure that I discovered in my travels is the protocol. According to this protocol, illness is caused by a combination of "birth trauma", "toxins, vaccination, medications and a lack of body contact", "poor dietary choices and nutritional deficiency". Apparently, these cause "congestion of the ducts and vessels of circulation and elimination". On top of this, "most serious health problems come from difficult relationships between people". So it seems that, according to this protocol, every illness is caused by pretty much everything. Alrighty then! After establishing everything as the root causes of illness, the protocol purports that Chronic Fatigue Syndrome can be cured by a combination of the following:

* Diet (avoiding "Foods that Kill", and including "Foods that Heal" and "Fats that Heal") 
* Body cleansing
* Physical activity (they list mini-trampoline jumping, rowing, walking, jogging, aerobics, dancing, gymnastics and weight lifting... Does anyone see a problem with this as a "cure" for Chronic Fatigue Syndrome?)
* Sweating (they suggest "exercise with a lot of clothes" - yes, this "cure" is beginning to sound like "How to kill a patient with Chronic Fatigue Syndrome in five easy steps!") 
* Psychotherapy and spiritual therapy

One approach that I tried was naturopathy (pretty much because my mother insisted, and paid for the "treatment"). In my experience, naturopaths are a bunch of very friendly people who like to sell you lots and lots of pills and potions. None of the alleged remedies that they sold to me worked, in fact, some of them gave me additional symptoms and made me sicker. I tried naturopathy three times with three different "practitioners". After all, several family friends swore that they could cure me (because they had heard about people who had been cured by it).

The naturopaths that I went to were generally convinced that I was secretly allergic to gluten (among other things - despite the fact that I had been medically tested for such allergies). In the vain hope that it might make me better, I agreed to go on a gluten and lactose free diet for several months. Mum prepares all of my food anyway, so I didn't really have to do anything. I didn't think it would work, but I was willing to give it a go, for mum. I got sicker. 

The naturopath then decided that my sickness was due to my liver failing (despite my medical liver function tests, enzyme tests etc. coming back as perfectly normal!) So they sold me and mum "liver cleanser". I was told by one to drink what I can only describe as mud. I was given probiotics, and all kinds of supplements. One of the naturopaths that I went to kept insisting that I should stop all of my conventional medical treatments (which were working), and try more of their potions and pills (which weren't working). Insanity.

My experience with homeopathy was very similar, but to a lesser extent. I only had to buy three or four different kinds of pills from him. It did not cure me, and I stopped going. Anyway, the last fake cure I am going to write about is "Mickel Therapy", via a practitioner who calls herself Self Help Mate. This woman's constant untrue allegations about ME/CFS and other illnesses on the social networking site Twitter, quite frankly makes me see red. I am enraged by the things she says because I feel it is simply repulsive to blame the ill for being ill, and I believe that it is irrational to say that people who are ill "want" to be ill. I do not believe her view that "positive thinking" alone can cure ME/CFS, or Fibromyalgia (although I believe that it can improve quality of life for sufferers).

Mickel Therapy is a so-called "Talking therapy". Over 2000 patients have apparently been "cured" by this therapy on one page of their website, while over 3000 patients have been cured on another of the sites subpages! The website uses the word "accredited", and the therapy is endorsed by a doctor who calls ME/CFS "Hypothalamitis", which I can't decide whether it sounds medical, or just slightly silly. Anyway, this miraculous therapy costs "clients" 80 pounds per session, or 600 pounds for a "course of sessions". Each session lasts 75-90 minutes (which is more time than I could personally sit up and concentrate for in my current state of illness). What I see as the evil part of this alleged cure is that it blames the victim of these illnesses, making claims such as "symptoms only arise in the body to alert us that we are not being our authentic selves".

The owner of this business believes that "positive thinking" cures disease. She likes to use Twitter to tweet about her alleged cure, using the ME/CFS hashtags. She considers ME/CFS and Fibromyalgia to be "mental illnesses", and alleges that people who are sick do not "want" to heal (and people who are not cured by her therapy do not want to get better). She frequently tells seriously ill people that they are sick because they lack "self worh" and "self-esteem", accusations that have absolutely no truth whatsoever. She has also alleged that ME/CFS is an "established pattern" that sufferers have fallen into, rather than a physical illness.

I am inclined to believe that views such as these that blame the victim are a defence mechanism. After all, if you staunchly believe that people bring on their own illness, pain and suffering, and that these ailments are easily cured by altering your thinking, you know that illness can't touch you and thus you feel safe. It would be nice if this was true, but unfortunately in real life, this isn't the case. Sometimes bad things happen to good people for no apparent reason, and there isn't an easy fix.

Personally, I have tried many "alternative cures" during the course of my illness, and ill probably end up trying more (if I remain ill) in years to come. My own desperation for a cure, and my acceptance of my illness seems to run in cycles, and these vultures can be very persuasive! Although it might seem a little pessimistic, I am inclined to agree with the medical profession; there is not yet a magical cure for ME/CFS or Fibromyalgia.

The fact that there is no cure does not mean that there are no treatments or tools for managing these horrible illnesses. My treatment over the last six and a half years has focussed on alleviating or managing symptoms, and increasing coping strategies so that I can better deal with the symptoms of my illness (and the effects that being chronically ill has on my life). For me, that includes regular testing to make sure that no new medical problems are cropping up on me, pacing my activity levels and making sure that I get enough rest, light exercise (when possible), antidepressant and pain-killing medication, vitamin supplements, counselling, and support from family and friends. 

People like Self Help Mate will erroneously say that I remain ill with ME/CFS and Fibromyalgia because I do not "want" to get better. This could not be further from the truth. Unfortunately, the truth of the matter is that I am sick because I got sick - it's not my own fault, and it's not anyone else's fault either! There is no miracle cure that will fix the complex neurological conditions from which I suffer. Despite this, I am managing my illnesses, I am living an awesome life, and I haven't given up hope that one day I will get better. 

~Adrielle =) 

Sunday, January 16, 2011


    So this week has been pretty awesome. After being largely housebound (unless my mum or sister pushed me around in a wheelchair) for years now, I finally got a mobility scooter! It is not just a scooter, it is my independence! I can now go pretty much wherever I want! I can choose a direction and just go there under my own steam! I can go to the milk bar and buy ice cream just because I feel like it! It is the MOST AMAZING feeling! 
     I had been on the waiting list to see an occupational therapist to be assessed for my needs (to see if I qualified for financial assistance to get a scooter) for around a year now, and have heard absolutely nothing. The hospital are always advertising the job of occupational therapist online, which makes me wonder if our area actually has one at all! Anyway, my luck suddenly changed when mum saw an add for scooters on super sale in the local newspaper! My parents offered to finance me, with the agreement of I pay them back $300 a fortnight until my debt is paid (I reckon I can afford to pay a little more this pay, though - and for my own piece of mind I'd like to pay them back as soon as I possibly can!) The scooter cost $2500. I'm hoping to wipe off $500 this week =). 
    So I got my lovely scooter!!! It is shiny blue, with a glittery finish, and handles hills and curbs and rough ground with ease! At first, I wasn't the world's best driver... but I am getting better! The speed dial is marked by a turtle at one side, and a rabbit at the other. At first, I had it on turtle for most of the time, but I am having fun cruising on rabbit some of the time now! (Although I try to go slow enough for Ellenya to keep up - she is walking to get fit, and its nice to have someone to talk to!)
    The first day I had my lovely new scooter, it was raining really heavily all day. I was so disappointed! I so wanted to drive it around. I really wanted to play with it, so I practised driving it around in the small space under cover in the garage! hehe! Ellenya came out with me and was playing with my manual wheelchair... Mobility aid racing ftw! (She won... lol! I was too scared to go too fast at first!)
    The next day was sunny, and I got to go for a real drive! We went all the way to the milk bar down the road, and bought ice cream and lemonade! It was so amazing! I felt so free and independent! The only bad thing about the day was that in my excitement, I forgot to wear sunscreen! (Luckily I was wearing a hat, a shirt with sleeves and long pants - I ended up pretty burnt on my arms though! The most burnt I've been in my whole life! I am usually kinda paranoid about the sun!)
     It is really ergonomically designed - the seat is very comfortable and has sturdy arm rests - and I can reach the handle bars to steer (and the little button that makes it go, which is on the handle bars) while resting my elbows on the arm rest! If I take my hand off the button, the brakes engage, and the scooter stops, and it has rear stabilisers to stop if from tipping backwards on hills (I live in a hilly area, so that's good!). The whole scooter breaks apart into pieces that fit into mum's car boot, so we can take it places! It's sturdy enough to get up little steps and to go across rough ground, and the battery is only half a bar down after three days of use! (Apparently it can go for 40kms! If only my energy would last that long! lol!)
    I am planning on getting a personalized pink and/or purple mini number plate for the back (like the kind you get from gift shops), and maybe some stickers to pretty it up even more! I have a pirate flag on the front! Yarr! =D 
    I love the way my cute blue scooter looks, and I love being able to get around on it so easily! Most of all, I love the way it makes me feel - like I can go places without other people having to put themselves out and take me! I feel a bit more like a real adult person now =) 

~Adrielle =)

Monday, January 10, 2011

All Finished =D

I finished my picture and entered =D

~Adrielle =D 

Sunday, January 9, 2011

What I'm Working On 2

An update of what I am working on! (I'm almost done! Just need to colour it in! - click image for larger version =))

~Adrielle =)

What I'm Working On

Yesterday, I tried to sew. I thought my hands could cope with it... but apparently I was wrong! lol! My right index finger is really rebelling today. I woke up in the middle of the night in agony, and it was twice the size it should be, and wouldn't bend! I was pretty sad this morning coz I don't know how long it will be before I can sew again, and I really want to finish the project I started!

I was cheered up, though, when I stumbled across this contest on the Puzzle Pirates forums! Here is what I have come up with so far:

I am a bit too tired to work on it any more for the moment, but I have until February 1st to get it finished and to enter the contest. I am confident that I can get it done and posted before the deadline! =D

~Adrielle =)