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!
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 |
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! |
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 =)