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myladypiper's Journal
Created on 2006-06-22 10:09:09 (#10507854), last updated 2006-10-06
4 comments received, 1 comment posted
Basic Account [Gift]
2 Journal Entries, 0 Tags, 1 Memory, 0 Virtual Gifts, 4 Userpics
Basic Info| Name: | myladypiper |
|---|---|
| Birthdate: | 1982-11-01 |
| Location: | Perth, Western Australia, Australia |
BioThis is heavy-going, please feel free to ignore it. Carpe Diem.
I have Fibro-myalgia, a skeletal muscular pain disorder that means i live in pain. It feels like my joints are all turning to mush inside me and despite the drugs it hurts abominably. I spend most of my time being flat, stuck laying on my back staring at the ceiling.
I collapsed in June 2003, first my right knee went, then my left, then my lower back collapsed, and from then until christmas 2003 all my joints went one by one, and then I was diagnosed. I have one of the worst cases recorded, and I can't walk or move beyond a little arm and head movement -which i gained last year (05) from the self control and management of pain course at Sir Charles Gairdener Hospital- before that i was a vegetable stuck in my own head- and since this year I can over-dose a little bit to gain control over my body and get up and do stuff, but it is risky. The Drs call it 'shaving' going without, at some point taking 1 and a half pills instead of 2, and putting up with extra pain, so that later on you can use the saved up tablets to have a day/some time on your feet. This means i get to have a life! Only little bits and in Little increments, but life all the same!
Last year i realised i was detaching from the world, not letting people see me; like an old person, or a sick and dying person. So I made a concious decision to go out and try to at least call people or make friends in the country. I found the White Dwarf Book shop and then the Fantastic Planet book shop, and from thence Swancon, and from that, the SCA! I have found the SCA to be an amazing group full of wonderful people; a real family of choice. Even when I first joined and knew no-one, going to an event was a feeling akin to coming home; where everyone loves you for who you are, warts and all.
At present I am getting sicker while waiting for my pension, without which pension-card treatment is withheld from me. Centrelink are happily stalling and arguing and discriminating against my disease, and any number of other things which include waiting for me to die and thus get out of their hair. Bitter? ...Who me??
I have Fibro-myalgia, a skeletal muscular pain disorder that means i live in pain. It feels like my joints are all turning to mush inside me and despite the drugs it hurts abominably. I spend most of my time being flat, stuck laying on my back staring at the ceiling.
I collapsed in June 2003, first my right knee went, then my left, then my lower back collapsed, and from then until christmas 2003 all my joints went one by one, and then I was diagnosed. I have one of the worst cases recorded, and I can't walk or move beyond a little arm and head movement -which i gained last year (05) from the self control and management of pain course at Sir Charles Gairdener Hospital- before that i was a vegetable stuck in my own head- and since this year I can over-dose a little bit to gain control over my body and get up and do stuff, but it is risky. The Drs call it 'shaving' going without, at some point taking 1 and a half pills instead of 2, and putting up with extra pain, so that later on you can use the saved up tablets to have a day/some time on your feet. This means i get to have a life! Only little bits and in Little increments, but life all the same!
Last year i realised i was detaching from the world, not letting people see me; like an old person, or a sick and dying person. So I made a concious decision to go out and try to at least call people or make friends in the country. I found the White Dwarf Book shop and then the Fantastic Planet book shop, and from thence Swancon, and from that, the SCA! I have found the SCA to be an amazing group full of wonderful people; a real family of choice. Even when I first joined and knew no-one, going to an event was a feeling akin to coming home; where everyone loves you for who you are, warts and all.
At present I am getting sicker while waiting for my pension, without which pension-card treatment is withheld from me. Centrelink are happily stalling and arguing and discriminating against my disease, and any number of other things which include waiting for me to die and thus get out of their hair. Bitter? ...Who me??
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