Tuesday, September 20, 2011

Trip to the City!

Well, on Sunday, my family and I had to travel 400kms by car to the city for specialist appointments. It is a long way to sit cramped in a car (especially with fatigue and very sore joints and muscles), and takes about four hours. The trip was justified, though, as I was going to see an expert consulting physician who works with people who have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. I was first diagnosed as having this in my last year of high school, around seven years ago (although, I was diagnosed as having idiopathic chronic fatigue at age 11, then recovered until a bout of similar symptoms at age 14 led to a diagnosis of post-viral syndrome. Apart from chronic respiratory infections and dislocating joints, I had a few good years until age 18, when my 'chronic fatigue' symptoms once again returned).  It has taken me a long time to find a specialist who deals with Chronic Fatigue Syndrome, and I was hoping intensely that he might be able to help me!
A picture from a truck stop on the way - there were parrots somewhere in the tree - but I can't find them in the photo - maybe they flew away just as I took it? I don't know... the gumtrees are nice, anyway!


Because of my illness, I am not able to complete the trip to and from the city in a single day, so we stayed with relatives for a couple of days so that I could rest. Luckily, I was having a few 'good' days illness-wise, and the car trip didn't knock me around as much as it sometimes does. I was even able to sit up and sip tea and chat with relatives, which was awesome!!! On Monday, I even had the energy to style my hair (although I was lying in bed most of the day! It just makes me feel a little more human to feel like I look a bit presentable - even if I am lying in bed). 


 I also did some drawings, including one of my Fibroduck! =)

Fibroduck also joined me for dessert, which was really nice rice custard pudding made by my Nana! =D

Anyway, Tuesday was my specialist appointment. We drove into the city nice and early because we didn't really know where we were going. We saw some horse police! (Lol - we don't have those where we live!)

We found the place pretty easily, but there wasn't really anywhere (legal) to park near it, so we went and parked in a car-park next to some gardens for a while. There were lots of birds and cats there! Watching them (and chatting to friends on my iPad) helped to calm the slight nerves that I was feeling about the impending doctor's appointment. I am always a little worried about telling my story to new people face to face, and about whether doctors are going to be nice/caring/accepting of my oddness and sense of humor or not! 

Here are some pictures of the palm tree that we parked next to =D 


 When it was almost my appointment time, dad drove and dropped mum and I off. It was a very no-frills building - no real signs or receptionist or anything - just a back room that had chairs in it - so we sat and waited. I was impressed, though - there was a heater, and CHAIRS WITH ARMS!!! Lol! (It sounds like a little thing, but I get so sore sitting for any length of time in a chair without arms to lean on!) The doctor was running a bit late, but the time seemed to go pretty fast. Mum and I read through a National Geographic magazine from 1989... They have definitely gotten nicer since then - in terms of layout and pictures! After a while, it was my turn =D 


The appointment went really well - and the doctor was really nice and caring and DID get my sense of humor =D. I made him grin and laugh, hehe! He was very thorough, and did blood pressure and pulse rate checks, and skin checks and things - which apparently showed that I have nervous system problems and that my heart rate and blood pressure can't cope with standing. He says I might need a tilt table test - which sounds intriguing! The doctor had nice art on his walls! He drew detailed diagrams and explained ME/CFS and fibromyalgia in great detail to mum and I, and gave us the picture he drew to take home. (I told mum that it should go on the fridge. From the look on her face, I don't think she agreed! LOL!)


Anyway, the doctor seemed to know a lot about ME/CFS, and he seemed confident that there are things that can be done to make me better. He suggested that I start taking lots of salt tablets to help with the pulse rate issues, and that I continue to use hydrolite icy poles (they really help on bad days!) He also prescribed vitamin B12 injections, which should help to boost my energy levels, and an extra pain-killer which helps to block pain signals caused by fibromyalgia. He is putting me on amphetamines to try to boost my energy in the daytime, and which will hopefully help me to get a more normal sleep/wake day/night cycle happening, and has referred me to an exercise physiologist in the city who works with people with ME/CFS to try to help them overcome the disease and increase their energy levels. (He kept warning me that I need professional help with the exercise part of my recovery - too much or the wrong kind of exercise is very bad). Apparently the exercise physiologists can use Skype to work with me - which means that I won't have to keep traveling to the city all the time - which is awesome! 

Although he warned me that it will be a long hard road, I am now very confident that I can get better! 


The appointment took close to two hours, and was very in-depth. I was pretty tired by the end of it! Dad picked us up, and we began the long drive back home... only leaving the city after 6pm. (Although, we got to see the sun setting over the city, which was nice). 
Egg bridge!
Driving toward the Bolte Bridge
Thanks! We did! Lol!
Westgate Bridge

Heavenly rays of sunlight coming through the clouds! Lol! There was a rainbow, but I couldn't get a picture of it because it was behind us, and turned out just grey in the photo. I always think those lights on sticks look like UFOs...
Rest stop at Maccas! I had a bubblegum McFlurry! It was NICE!!!


Then we were on the road again... I love how the bridges have rainbow lights under them!


Dinner at another Maccas! How convenient that they pretty much line the highway?!
Fibroduck and crossed straws! Yarr!
Elle and my romantic dinner? LOL!
Eventually, we got home. I was so glad to be finally home, and to check that all the pets were okay. Star was massively excited to see me, and to get some worms for a late dinner! Franklin and Shelley and Moke were excited too! The fish were mostly asleep, although some of them woke up and had some dinner. 

It was pretty nice to sleep in my own bed last night, and to wake up with my cuddly furry purry cat in my arms =D 


~Adrielle =)

Wednesday, September 14, 2011

Sunshine, Spider and Turtleys!

So, I hobbled outside on crutches to have lunch in the sun =) My knee has now swollen to have four kneecap-size lumps on it... which makes it look bizarre! At least the morphine has made the pain go away =D Anyway, here are some more pictures of our babies, Franklin and Shelley, in the sunshine! 


And Shelley having a cuddle! How cute is she?!!!


Lastly, here are a couple of pictures of a teeny cute spider that was crawling on me!

Right now, Ellenya, Kecapmanis and I are back inside watching videos of Franklin and Shelley when they were babies! It is hard to believe how little they were 18 months ago!!! So gorgeous and cute! (Now they are big and gorgeous and cute!) I will try to post some of the videos later on!


~Ad =)

Happiness!

Well, this week has been pretty awesome! Although I have been too sick to leave the house (with ME/CFS, fibromyalgia and EDS), I have managed to almost finish a very pretty mermaid cross stitch, clean my room (with help from Kecap!), and sit in the sun a couple of times with my lovely little turtles! Also, I received a very special set of prizes in the mail from Puzzle Pirates - which I am over the moon about, as it included signed postcards from Cleaver and Cephalopod! (Both of them drew octopi!) I put them in frames so they don't (as lovely Iong says) crumble to dust! =D


Anyways, I am not game to move from my chair today until Kecap gets home, as my left knee is really really really unstable. It has been crunching and clicking for a couple of days now, and woke me up hurting twice last night (evil Ehlers-Danlos!) It isn't the actual knee cap that is feeling unstable, but the knee joint itself, and from experience, if that dislocates, it is very hard to get back in - and I go into shock. I don't really want that to happen when my carer is out! So, right now I am stuck in my chair - dying for a shower! LOL!


Lastly, here are some pictures of Franklin and Shelley enjoying the sunshine! They were very happy to sit on the warm brick path with their shells in the sun - lifting their little legs and luxuriating! It was incredibly cute!!!
~Ad =)

Monday, September 12, 2011

Turtles, Moke and Sunshine 2! =)

Here are some pictures I took this afternoon. Shelley and Franklin were playing in the garden, watched by a suspicious Moke. She doesn't like those turtle things! 


~Adrielle =)

Spring Has Sprung! =)

Yesterday, I went for a walk around my garden. I try to walk around the garden as often as I can - it is a little goal of mine that makes me feel a little more normal =D. Yesterday I had to use a crutch, but I managed to get some photos of some of the flowers in our garden. I love this time of year - everything is in bloom! 

An orchid near our back door:

The flower that my dad bred and named after my aunty - "Wendy Woo - Champagne and Strawberries":

Some flowers in our sideway:

Crab cactus:

Jasmine:

And my baby, Moke =D She always follows me.


~Adrielle =)