Thursday, May 26, 2011

Winter (and Carpet) is Coming!

Winter is coming, and my joints disapprove! The osteoarthritis in my hips has been especially painful the last few days, although I managed to leave the house yesterday afternoon in my wheelchair. It was the first time I had been well enough to leave the house in over a week, and I was dying to get out, so I went with mum and Ellenya to look at carpet!

The carpet that is currently on our floors is 17 years old, and is in desperate need of replacement. It was once soft and pale cream with flecks of pink. It is now flat and hard, and has become more of a grey-brown colour, with stains pretty much everywhere! We used a nice chocolate and pale pink rug in the lounge to cover the stains, and to make the room look nicer until we could save up for the new carpet, but now the bank balance has almost reached our goal, we are looking for replacement carpet. It is more exciting than it sounds, really!

Unfortunately, our short shopping trip revealed that most colours don't seem to be in fashion at our local carpet shops. They had an abundance of brown, beige and grey... and not much else! Ideally, a pale pink would match our house - but the only carpet that they had in that colour was "discontinued". Some of the carpets felt like weaved wire - all coarse and scratchy and hard - not the kind of thing you would want to walk around on in bare feet! So, we didn't commit to buying any new carpet yet. Mum is going to look at some other shops in the next town over. Hopefully she will find a nice soft carpet that's a prettier colour!

Although our trip wasn't very successful, I felt incredibly happy at being able to get out of the house! I saw different sights, smelled different smells (although the abattoir scent wasn't what I would call 'pleasant'), and met different people! It is awesome to go out - I guess leaving the house is something that people take for granted until it becomes a rare novelty! After visiting two carpet shops, I was exhausted and sick. I slept in the car while Mum and Ellenya went to the supermarket, then I came home and slept in bed until dinner time! Today I feel okay again... well - okay by my standards! I was even able to shower, so today is a good day!

Despite winter making my joints extra achy, it is a pretty time of year. This morning, there was a thick fog over our valley. 
Moke decided it wasn't really cat weather, but she would look at the fog through to wire door. 
The fog has lifted now, but it is still overcast outside. I can see pretty yellow autumn leaves on the vines out the window. It looks wintery and cold out there! I am glad we have heaters and blankets, and that I am warm in my armchair inside!

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Monday, May 23, 2011

Franklin and Shelley's New Accommodation!

Last week, Franklin and Shelley got a new tank stand for their tank! (They had previously been living on a table).
Playing on the carpet while their tank was cleaned and relocated!
Moving the old table out, and the new stand in - and cleaning the tank!
The new stand!
Shelley and Franklin seemed to approve =D 
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Some Pics From the Last Few Weeks!

Here are some pictures from the last couple of weeks =) 

Dad's Birthday:
Random Artwork:
And some pics of Moke =)
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Thursday, May 19, 2011

Pirates of the Caribbean!

Today, we went to the movies to see Pirates of the Caribbean: On Stranger Tides! I love the Pirates of the Caribbean movies! We got into Gold Class (where the seats are reclining), and there were only six people in the whole cinema! Oh, and the movie was 3D!!! It was awesome! I had an ice-cream sundae and hot chocolate, and some peanut M&Ms and raspberry lemonade, and my Fibroduck came with me! 
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Wednesday, May 18, 2011

ME/CFS and Fibromyalgia Awareness Day Pictures!

I have had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for many years now, and I was diagnosed with Fibromyalgia last year (although, I have probably had that for a long time too! I always just assumed that my pain was from ME/CFS!) Blogger was down when I originally tried to share my photos from awareness day - so here they are! Better late than never!

I was pretty sick on the 12th of May, and could barely get out of bed. I tried to help raise awareness by tweeting and retweeting, and by posting information and links on Facebook. On the 13th of May, I felt a little better (better enough to walk around my house and sit in my armchair, anyway!), and was able to take some pictures of my Fibroduck! I figured that it was still May 12 over the other side of the world, so my pictures still count! 
Fibroduck with some orchids!
With my newest walking stick!

Siting in the little handle that helps me to get up and down the step in our loungeroom.
Sailing in Ellenya's shippie wind chime!
With my Shelley!
On my armchair! (It is a recliner, and now has a massage pad fitted to it!)
Visiting the fishies!
On the carpet!
On my mousepad! (Yes, it is a sketchbook, but regular mousepads aren't as good!)
Getting warm in front of the heater!
Getting WiiFit!
On my keyboard!
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Tuesday, May 10, 2011

Test Results!

Well, I got some blood results back today. There were pages and pages and pages of results! I  got my own print out to read through. The abnormal results were mainly markers for inflammation.

Abnormal results:
  • C-Reactive Protein (CRP) was up from 33 mg/L on 29/7/10 to 37 mg/L on 3/5/11
  • Alkaline phosphatase (ALP) was 115 U/L (a normal result is described as being 20-105)
  • Erythrocyte Sedimentation Rate (ESR) was moderately elevated (56 mm/hr) (Normal is less than 20).
  • Serum complement C3 was 2.72 g/L (normal is .79-1.77)
  • Serum compliment C4 was 0.48 g/L (normal is 0.16-0.38)
I have to wait until I see my specialist next month to get an interpretation of what these results really mean, but it seems like something is going on! 

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Thursday, May 5, 2011

May is Ehlers-Danlos Syndrome Awareness Month!

May is Ehlers-Danlos Syndrome (EDS) awareness month. For those of you who don’t already know, I was diagnosed with EDS late last year after a lifetime of chronic illness. Therefore, I am dedicating this blog post to raising awareness about this elusive condition!

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is a group of inherited connective tissue disorders marked by extremely loose joints, hyperelastic skin that bruises easily, and easily damaged blood vessels. The condition is considered rare, and is thought to affect 1 in every 5000 people. 

There are six major types of Ehlers-Danlos Syndrome, all of which are caused by a variety of gene mutations that cause problems with the synthesis of collagen. The type of EDS that I have is called Hypermobility type, or type 3. You can learn more about the types of EDS here
Collagen is a protein which acts as the body’s glue, adding to the strength and elasticity of connective tissue. It is a substance which provides strength and structure to skin, ligaments, muscles, blood vessels and internal organs. Depending on the individual gene mutation that a person with EDS has, the severity of the syndrome can vary from mild to life-threatening. 


Faulty or reduced amounts of collagen lead to the symptoms associated with EDS. Symptoms vary widely with type, and can include:

  • Loose unstable joints that are prone to sprain, dislocation, subluxation and hyperextension ("double-jointedness"); extreme flexibility**
  • Flat feet**
  • Highly flexible fingers and toes; arachnodactyly** 
  • Scoliosis of spine**
  • Joint pain without inflammation**
  • Myalgia and arthralgia**
  • Early onset osteoarthritis**
  • Low muscle tone and muscle weakness**
  • Unexplained pins and needles or numbness in extremeties**
  • Difficulty regulating own body temperature**
  • Easily bruised skin**
  • Very soft and velvety skin which may be stretchy, and is often translucent, with blue veins clearly visible on limbs and particularly hands**
  • Easy scarring
  • Stretch marks**
  • Poor or abnormal wound healing
  • Cardiac problems, such as dysautonomia typically accompanied by valvular heart disease (such as mitral valve prolapse)
  • Fragile blood vessels with tendency towards aneurysm
  • Fatigue which can be debilitating**
  • High and narrow palate, resulting in dental crowding
  • Vulnerability to chest and sinus infections**
  • Severe mouth ulcers (due to tissue fragility and vulnerability to infection)**

[** = I have them!]


Diagnosis of EDS often takes years, due to the rarity of the disorder, lack of awareness among medical practitioners, and symptom cross-over with other conditions. Some types of EDS can be identified through genetic testing, skin biopsies and other tests. The diagnosis of Hypermobility type, however, requires clinical observation, a review of the patient’s medical history, scores on the Beighton scale for hypermobility, and assessment of family history (as well as the ruling out of other similar conditions).

I was not diagnosed as having EDS until I was 25 years old, despite having lived with recurrent joint dislocations, easy bruising, and chronic infections for most of my life. The disorder had been “suspected” since I was 11 and first started frequently dislocating joints, but my diagnosis was confirmed by a GP and then a rheumatologist when my symptoms increased in severity. Not knowing that I had EDS was difficult, especially when I was going through school. I seemed to catch every bug that was going around, and I was tired all the time (although I tried very hard to hide it!). I thought that I was just unfit compared to everyone else, and that I had an unusually weak immune system. People used to comment about my visible veins and my alien-like flexible fingers. They would ask if I was being abused because of the bruises I would get (especially on my legs), which was embarrassing. I was called a hypochondriac by some family members, friends, class-mates, teachers and trainers – and they even had me believing that I was weak or crazy for a time. Now that I have a formal diagnosis, I feel like I finally have an answer to why I am like I am. I feel validated, instead of inferior or crazy!

The early diagnosis of Ehlers-Danlos Syndrome is important – especially in identifying life-threatening symptoms such as those present in vascular-type EDS. I believe that health care professionals need to be made aware of this condition so that they might be able to better recognise signs and symptoms that could lead to an earlier diagnosis and treatment for people with EDS. For me, a diagnosis meant that I could learn more about the condition and find ways to help with the management of my symptoms. It also meant that I could be tested for possible heart problems (luckily I just have a fast pulse rate, low blood pressure and a "trivial regurgitation" – which conjures up an interesting image of a spewing heart in my mind...)

Treatment and Prognosis

There is no cure for EDS. Treatment is supportive, focusing on evaluating and treating the individual patient’s symptoms. Personally, I now rely heavily on prescription pain-killers and mobility aids (such as a motorised scooter, wheelchair, walking sticks and crutches).  I also have a co-morbid diagnosis of ME/CFS and Fibromyalgia, and I require a full-time carer. I am largely housebound, and during symptom flares, I spend most of my time in bed. 

Luckily, I live in a day and age where computers, my iPad and the Internet are freely available to me! This means that when I am stuck at home or in bed, I am still able to connect with the outside world. Dictation software means that even when my hands are too sore or fatigued to type, I can dictate messages! Although, this technology has its limitations, and it is vital that I read through what it thinks I have said before clicking post... 

People with EDS generally have a normal lifespan and intelligence. (Although, people with vascular type EDS are at significant risk of major rupture of organs and blood vessels, and therefore have a high risk of sudden death). 


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