So, I was on Twitter, and this odd little hashtag was popping up everywhere - #NaNoWriMo. I had no idea what it meant, but lots of my friends seemed to be excited about it! lol. Anyway, I tried to get more information about it, but the official website was over-capacity and wouldn't load. It seems the basic idea is that you write a 50 000 word novel (about anything you like!) in 30 days (ending November 30). I think it sounds kinda fun! Although, the longest thing I have previously ever written was around 8000 words, and with my current health and levels of brain fog I fear I am being overly optimistic! There is no harm in trying, though, is there?
When I eventually got the website to load, I found that my town was listed as being involved in the event. Seems weird that I found out about it from my friends in the USA and UK - local publicist fails! So, after getting some more info, I am now about to embark on the biggest brainfog challenge I have attempted since getting sick! I just need to think of an awesome story... (I am also wondering if use of dictation software is allowed to compensate for my illness.... typing this post is killing my hands already!)
~Adrielle =)
Tuesday, November 2, 2010
Saturday, October 23, 2010
Icing, Severum Babies, and Surviving Home Alone!
Well, today my whole family went out to an orchid club thing. I was meant to go too, but a whole day of being out and about is wayyyyyyyyy beyond me health-wise at the moment. I stayed home alone and did other fun stuff, though =).
I am proud because I tidied my room, and had a shower one after the other without passing out or getting too sick, and only almost clicked out one knuckle (tends to happen when I shampoo my hair!) It was hard, but I am glad that I did it! hehe. I was limping pretty bad by the end, though, lol! Legs didn't want to walk or support my body :P. I had some chocolate tarts and rested for a while before strapping up my very dodgy joints and heating up some pasta for lunch. The pasta dish was heavy and hard for me to get in and out of the fridge, but I did it! =D I had drinks stockpiled, so I wouldn't have to pour them (coz my arms and hands hate doing that; it's difficult, painful and I end up making a mess!), so then all I had to do was go sit outside in the sun and enjoy my pasta (and some extra chocolate tarts for desert, lol!) I only nearly fell over in the kitchen once =D.
After lunch, I fed the baby severums. Chomp (their dad) bit me :S. He has pretty sharp teeth - he easily got through my skin! He doesn't understand that I am giving his babies dinner; he is worried because I am going near them, and might hurt them. I feel bad for upsetting him, but there is no other food source small enough for them to eat in that tank, and I can't let the babies starve! The babies were very happy with their lunch - chasing it and gobbling! So cute! When they eat, you can see their little transparent tummies turn orange from the brine shrimp!
<-- The two Chomp bites on my wrist!
Anyways, after that I had a rest for a while, then made some icingy decorations for our Halloween brownies! I had seriously underestimated how much energy it would take to make them! I was planning on making a few more things, but before very long I ended up at the point where I was shaking uncontrollably, having heart problems and nearly fainting. I figured I should really lie down before I fell down - especially since no one else was home to come and save me!
I really like how my little icing decorations turned out, though =D. I made tiny pumpkins and little gravestones! They are drying on a tray in the kitchen. Kneading, dying and rolling the icing took A LOT of energy! I had to keep stopping and having breaks and taking deep breaths, lol! (And I confess, I ate some of the extra icing off-cuts... mmm =D - It was almond icing, which is pretty much the same as marzipan - smells delicious! Tastes even better! It reminds me of Christmas too, because it's what I use on the Christmas cake =D).
So since stumbling into bed and taking my afternoon dose of morphine, I haven't yet been able to get up again, lol! I am here with all my pillows (and I have many!) supporting my body so I can lie and type on my laptop =D. I have drinks, but no snacks... and I feel a little hungry after writing all that stuff about icing and chocolate tarts and pasta... My family should be home soon - and it's almost dinner time, so I shouldn't starve to death! hehe
~Adrielle =)
I am proud because I tidied my room, and had a shower one after the other without passing out or getting too sick, and only almost clicked out one knuckle (tends to happen when I shampoo my hair!) It was hard, but I am glad that I did it! hehe. I was limping pretty bad by the end, though, lol! Legs didn't want to walk or support my body :P. I had some chocolate tarts and rested for a while before strapping up my very dodgy joints and heating up some pasta for lunch. The pasta dish was heavy and hard for me to get in and out of the fridge, but I did it! =D I had drinks stockpiled, so I wouldn't have to pour them (coz my arms and hands hate doing that; it's difficult, painful and I end up making a mess!), so then all I had to do was go sit outside in the sun and enjoy my pasta (and some extra chocolate tarts for desert, lol!) I only nearly fell over in the kitchen once =D.
After lunch, I fed the baby severums. Chomp (their dad) bit me :S. He has pretty sharp teeth - he easily got through my skin! He doesn't understand that I am giving his babies dinner; he is worried because I am going near them, and might hurt them. I feel bad for upsetting him, but there is no other food source small enough for them to eat in that tank, and I can't let the babies starve! The babies were very happy with their lunch - chasing it and gobbling! So cute! When they eat, you can see their little transparent tummies turn orange from the brine shrimp! 
<-- The two Chomp bites on my wrist!
Anyways, after that I had a rest for a while, then made some icingy decorations for our Halloween brownies! I had seriously underestimated how much energy it would take to make them! I was planning on making a few more things, but before very long I ended up at the point where I was shaking uncontrollably, having heart problems and nearly fainting. I figured I should really lie down before I fell down - especially since no one else was home to come and save me!
I really like how my little icing decorations turned out, though =D. I made tiny pumpkins and little gravestones! They are drying on a tray in the kitchen. Kneading, dying and rolling the icing took A LOT of energy! I had to keep stopping and having breaks and taking deep breaths, lol! (And I confess, I ate some of the extra icing off-cuts... mmm =D - It was almond icing, which is pretty much the same as marzipan - smells delicious! Tastes even better! It reminds me of Christmas too, because it's what I use on the Christmas cake =D). So since stumbling into bed and taking my afternoon dose of morphine, I haven't yet been able to get up again, lol! I am here with all my pillows (and I have many!) supporting my body so I can lie and type on my laptop =D. I have drinks, but no snacks... and I feel a little hungry after writing all that stuff about icing and chocolate tarts and pasta... My family should be home soon - and it's almost dinner time, so I shouldn't starve to death! hehe
~Adrielle =)
Tuesday, October 19, 2010
Really Busy Day
Well, today was a pretty busy day for me. I woke up too stiff and sore to move (as usual), and took my morphine tablets. They take a while to kick in, but once they do, I can get out of bed =). Mum brought me breakfast in bed because we were in a rush (because I had a morning doctor's appointment). Anywayz, in the rush, I forgot to take all nine of my other morning tablets. This is kinda bad for a lot of reasons, but it is most bad because the later in the day I take them, the more the prednisone seems to keep me awake at night :S. I am therefore (not) looking forward to a sleepless night of feeling dead tired, sick and playing Bejewelled 2 for iPad! :P On the plus side, for some odd reason, I tend to get higher scores when I play it in the early hours of the morning. Perhaps I can beat Fritzie69 and Sinistergoat's amazingly high scores tonight/tomorrow morning! hehe
Anyway, my doctor's visit went well. We had to go to the chemist before the doctor to pick up my iron needle prescription. As usual, the doctor was running late, so Kecap, Elle and I went next door to the bakery for a coffee. It was nice, but I wasn't having a great day fatigue-wise and it was kinda hard to sit. I had to lean on the table, and my elbows are sore, so that was a bit painful. It was even harder to sit in the doctor's waiting room; I kept almost falling asleep!
The doctor is sending me to a cardiologist now, because I finally remembered to tell her about the odd heart pounding feeling I keep getting. It has been happening on and off for ages, but the last few months, it has been happening daily, and is getting scary. My doctor seemed pretty concerned, and I have to confess, I'm a bit worried. I don't want to have yet another thing wrong with me, on top of Ehlers-Danlos, dislocating, painful and swollen joints, ME/CFS, asthma, depression, and who knows what else.
My most recent blood tests showed that my white cell count was too high - indicative of severe and acute infection. The only thing is, I am no sicker than usual. No infection anywhere that I'm aware of! On top of the last lot of blood tests that showed inflammation and necrosis, I would like to know what is going on in my body and causing these results... My iron was also still too low. I start another course of needles next week. I have also gone down to 25 of prednisone this week... with some trepidation. Hopefully I won't go crazy this time, like I did when I went from 35 to 30... lol! That was SCARY!
I hope the rheumatological expert I am getting sent to in Melbourne can give me some answers, too. Apparently she solves cases that other doctors can't, and knows about odd and rare conditions. I got told today that I "suffer from many medical conditions, most of them unusual" :P - seriously, that is on my cardiologist referral letter! lol
After the doctor, we went to the chemist. I wanted to get an elbow support to try to stop my elbow from dislocating so often. It REALLY hurts! And it never gets a chance to heal - it just clicks in and out multiple times a day, whenever I lean on it, and is permanently swollen. The support I got seems alright - it offers support and keeps the area warm, but I don't know that it will really stop the dislocations. I hope it will! So far today, it has only half clicked out once. Supports are wickedly expensive.
Then we had to go to Coles. I was in my wheelchair, but it is still so tiring for me, and it was a much bigger shop than I thought it would be. I was freezing the whole time in there! When we came home from the doctors, I couldn't rest that much because we had lunch outside straight away. It was a bit hard to sit out there, but I really like our new outdoor area! The morphine definitely makes it possible for me to sit up for longer periods of time. I came inside for a sleep straight after lunch.
After resting for a bit, I came out into the kitchen on my way to sit in the lounge for a while. I have a really comfy reclining chair that I can sit in and play on my laptop without using much energy (and the chair is PURPLE =D). Anyway, while in the kitchen, I noticed that the axolotl tank had sprung a leak! Not a massive gashing one, but there was water coming out, and it was scary! Luckily, the tank was still under warranty, so we could get a free replacement, but my poor axols didn't like having to relocate to a bucket for the afternoon!
I was too tired and sick to empty the tank, and my brain wouldn't think straight. I was at the "forget what you are saying while still saying it" stage, and my family didn't understand that. I guess it is a hard symptom to explain, and is probably just really bad brain fog. Anyway, I had to bargain with Elle and Kecap to get them to take care of calling the aquarium shop and emptying the tank while I went back to bed to sleep =( (yeah, I lead a great life). Feeling like that always makes me super depressed. It is just such a helpless and worthless feeling to not be able to communicate effectively, because it feels like people will think there's something wrong with me, or I'm really stupid. It would be nice if other people sort of understood, and it would be nicer if I could prevent it from happening!
When I woke up later on, I was reminded (by not being able to move) that I had forgotten my morphine =(. And it was close to dinner time, so I had to get up before it had fully started working. I had to sit outside before it had fully started working. Not fun. Tomorrow, I am definitely going to rest more and look after myself. No forgetting medication, no getting so tired I can't remember my sentences. It just really sucks. By dessert I was feeling a bit better =D (the morphine had kicked in!) So I ate ice cream with Elle and watched the turtles. Then I had to come in and feed all the fish (as a result of my earlier bargaining). It was hard, but I did it :).
In other news, our little canaries are nesting! It is very cute =D. We have never had baby canaries before, but these two seem to think they would like to start a family! Also, the severum babies have started swimming today! It is very exciting for us, and very tiring for the poor severum parents - they have to keep picking up stray babies in their mouths and spitting them back into the little ship statue that is their nest, and there are hundreds of babies going in all directions! We gave them some more food tonight, because it looks like it would be tiring! Our angelfish babies went to the aquarium shop to be sold today, too. I miss them =(. We kept two. I am still deciding what to name the little guy I kept. He looks like his dad, and is so cute! 
Anyway, feeling rather sick, sore, headachey and super-fatigued now - probably because it has been such a big day for me. The horrible thing is, days like this take lots of days to get over, so I have that to look forward to. It gets so annoying, because there are so many things that I want to do! I hope tomorrow is less activity intense. I can only really handle short trips/activities with sleeps in-between (and even then, I suffer afterwards!). Today didn't have enough sleeps, and the trips/activities were too long! ~Adrielle =)
Saturday, October 16, 2010
The picture I am currently working on =)
Well, this month's theme for the Puzzle Pirates' portrait background contest is "Winter". I decided to do a scene with some seasonal decorations, and festive firs! What began as the picture you see on the left (drawn on iPad!), has slowly evolved!I have now decided to try to use seasonal trinkets from the game as decorations on my festive fir trees =).
My drawing later evolved into this:
I usually colour and texture my drawings using Photoshop.
Anyways, now the picture looks like this:
Doing all of this gave me a great opportunity to practice drawing things I haven't ever drawn before, and to use tools I haven't used that often =D. It's fun!
At the moment, I'm not too happy with the candy canes. Might redraw them!
~Adrielle =)
Friday, September 17, 2010
My Hair, and Prizes!
Well, today was a pretty good (although very tiring) day =D. I relaxed for most of the morning, because I knew that I had a hair appointment in the afternoon (yes! I got my hair done for the first time in years!!!) I took some before and after shots of what my hair looks like. Please excuse my very very tired face! lol
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| Before... |
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| After 1 |
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| After 2 |
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| After 3 |
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| My New Mouse Pad! |
~Adrielle =)
Thursday, September 16, 2010
30 Things About My Invisible Illness You May Not Know =)
So, I decided to do the Invisible Illness Awareness Week blog!
1. The illnesses I live with are: ME/CFS, Ehlers-Danlos Syndrome, depression, and a suspected unknown rheumatoid condition. (The main/most debilitating one is ME/CFS).
2. I was diagnosed with ME/CFS in the year: 2004, when I was 18 years old and in my last year of high school. A few months later in that same year, I was also diagnosed with depression - this pretty much came about due to of all the changes that I had been forced to make to my life, because I now had ME/CFS (as well as the depressing symptoms and nature of the illness itself!)
I have also recently been diagnosed with Ehlers-Danlos Syndrome (only in the last month), and I am waiting for a diagnosis to explain why my joints have decided to swell as well as hurt all over, and affect the inflammation markers in my blood (my doctor suspects a rheumatological condition of some sort). I am seeing a specialist in November.
3. But I had symptoms since: I first got sick with the symptoms that would eventually be diagnosed as ME/CFS in early 2004. The symptoms came on suddenly, and I thought I was getting a flu or an infection of some sort. I was lucky in that my doctor had been seeing me for years, and knew that something was wrong. It took many months, and many second and third opinions before I ended up with a conclusive diagnosis. However, I know how lucky I am to have been diagnosed so quickly - I've heard that in many cases, it can take years to get answers.
As for the Ehlers-Danlos Syndrome, I have always been super flexible, and prone to injury. I first started spontaneously dislocating joints when I was 11 years old, when I dislocated and broke my kneecap (by just sitting down on a trampoline :S). Since then, my dislocations have become more and more frequent, and now occur in most of the joints of my body. I even dislocate bones in my sleep, which is scary! I was diagnosed with "flat feet" and scoliosis of the spine in high school, and had a collapsed lung in 2001 (I have read that these can be more common in people with EDS, but I am new to this diagnosis - I could be jumping to conclusions!)
4. The biggest adjustment I’ve had to make is: Changing my entire lifestyle! I used to be a very active person. I trained in acrobatics and circus skills every day after school, kept up with my studies, did singing, palates, yoga, dancing, drama, talent quests, shopping, and made art and craft in my spare time. After getting sick, I was finding it almost impossible to do any training at all. I was missing so much, and no one seemed to understand (it was hard for me to understand what was happening to me, as well). I felt lazy, because I was used to doing so much, and suddenly all I could do was sleep and zombie around the place. I have to say, though, that it has become a lot easier to deal with the limitations of ME/CFS with time. I have found new (sitting-in-a-chair-type) hobbies to replace my old active ones! I still very much miss my old life, but I have adjusted to my new life, and it has a lot of awesomeness too.
5. Most people assume: I don't know - never really thought about that! I guess I sort of feel like most people whom I talk to in real-life think that I am a bit slow; most of the time I am too exhausted to participate in conversation much, and then afterwards I get embarrassed and hope that people haven't thought that I am rude or something! Literally thinking of, and forming words can be difficult for me many days, especially if I have used energy to get showered, dressed, sit through a car trip, and go out into the world (even if I am being pushed in my wheelchair!) Chatting online has the advantage of me being able to take my time and re-read what I write before posting it =D.
6. The hardest part about mornings are: Getting out of bed and walking down the hallway! My legs (and the rest of my body) seize up and hurt like crazy, and I wake up just as tired as I was when I went to bed. I also get dizzy when I first wake up, so I have to take it slow.
7. My favorite medical TV show is: Scrubs!
8. A gadget I couldn’t live without is:
Only one?! Well, I like being long and drawn out, so I'm gonna list a few. I couldn't live without:
* My iPad, because it lets me chat and tweet and Facebook to my friends from bed when I am too sick to get up or to type. It has a pink cover and lots of game apps on it too!
* My laptop, because I can sit in my comfy and supportive armchair and chat, draw, play and connect with people.
* My battery operated toothbrush, my wheelchair, my massive queen-size bed with all its extra pillows to support my joints, and my shower chair.
9. The hardest part about nights are: Getting comfortable enough to get to sleep, and not being able to sleep, even though I am SO INCREDIBLY EXHAUSTED!
10. Each day I take around 12 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Have tried so many! They have mostly been terribly expensive, and none have actually worked (in some cases, they significantly worsened my quality of life).
12. If I had to choose between an invisible illness or visible I would choose: That is a hard one. Can I choose no illness at all? lol! I would like to increase awareness of invisible illness to make it easier for myself and other sufferers, either way.
13. Regarding working and career: I have never been able to work since high school (other than as a volunteer for short stints). I have a Bachelor of Behavioural Science degree from university, but unfortunately I am too ill to actually use the qualification! At the moment, I am a volunteer online for various websites, and I also make art and craft. I am studying 3D art and animation for film, games and television via e-learn (online), but I am working through the coursework verrrrrrrrrrrrrrrrrrry slowly! I find it incredibly hard to concentrate most of the time. I would love to be able to work, but at the moment, I am unable to.
14. People would be surprised to know: Hmm... I don't know! I think I talk too much, and have run out of surprises... Ok, I fantasise about having a mobility scooter - you know, the ride on and drive around anywhere kind? I would LOVE one of those so that I could go around my street on good days, or go to the park, or go buy lunch on my own. That would be awesome =D. And I would so decorate it with glitteriness!
15. The hardest thing to accept about my new reality has been: The unpredictable nature of this illness from day to day/month to month/year to year. It is SO difficult to make plans. Also, it is really hard to pace myself and to try to remain as well as I can without overdoing it (or underdoing it) - it is hard to strike a balance of doing as much as I can/should do, and much as I want to do. Overdoing it, even by a small amount, means a lengthy and nasty recovery period, which is frustrating! Coming to terms with the total change of lifestyle that ME/CFS caused was also obviously incredibly difficult.
16. Something I never thought I could do with my illness that I did was: End up being so open about it (and about other things). I was a very quiet person before I got sick, but now I find I can just talk to people. I also am really proud of getting my high school certificate and my university degree while ill, because I know how hard it was for me with my illness =).
17. The commercials about my illness: Don't seem to exist in my country. They so should, though. Wonder who I could talk to about that...
18. Something I really miss doing since I was diagnosed is: Acrobatics, walking around shops browsing, having the focus to write poetry and essays, being able to paint and draw in real-life (I mainly draw with a computer mouse now because my hands don't like co-operating!) and having the energy to look and feel alive!
19. It was really hard to have to give up: Acrobatics. I tried so hard to keep going! I would do like an hour of training instead of two and a half, but then I would go home and vomit all night because I had overdone it. I would take the next day or two to recover, but then I would try again. I must have been crazy!
20. A new hobby I have taken up since my diagnosis is: Online gaming, social networking, photography, digital art design, and beading.
21. If I could have one day of feeling normal again I would: go to a special place in the bush I used to be able to walk to, and sit there and listen to all the sounds that I used to love. I'd also take photos of it all so I couldn't forget. (Gosh! That question got me emotional!) O - and I would so go to the snow with Ellenya! And the beach, and the aquarium!
22. My illness has taught me: to be more understanding of other people, to count how many steps there are to get into places, to pace my activity (even tiny tasks), and to plan my days out based on energy.
23. Want to know a secret? One thing people say that gets under my skin is: Have you tried drinking coffee? Homeopathy/naturopathy? Why don't you just have a sleep, then go out? You can't just sit there in real life; you're lazy. You should help your mother more. When I was your age... Argh! Do you think I haven't tried? Or I want to be like this?!
24. But I love it when people: Understand, or make an effort to understand. I love it when people show that they care, try to cheer me up, and make me feel worthwhile =).
25. My favorite motto, scripture, quote that gets me through tough times is: GLUG! - Because it reminds me of my awesome friends and merry gluggers!
26. When someone is diagnosed I’d like to tell them: You're not alone! Come and hang out on Twitter if you have the energy to Tweet - there are so many awesome guys and gals on there who truly understand, and who are so amazingly supportive. Also, don't pause your life while you hope to get better - make the most of what you have while you are ill, because there is always something you can do (even if it is something very small).
27. Something that has surprised me about living with an illness is: The inner strength that I have, and the resilience. I always thought I wouldn't cope with something like this, but when actually faced with it, you can't turn away.
28. The nicest thing someone did for me when I wasn’t feeling well was: There have been so many nice things! From making me cups of tea, talking to me and just being there, sending me internet and real-life hugs, sending me cat-llamas, and making me smile and feel less alone =).
29. I’m involved with Invisible Illness Week because: I know it is really important to spread the word about these hidden illnesses; to increase understanding and acceptance in the world!
30. The fact that you read this list makes me feel: Awesome! Because I feel like I have done my part to spread the word about my invisible illnesses, and I feel like people care =D
~Adrielle =)
1. The illnesses I live with are: ME/CFS, Ehlers-Danlos Syndrome, depression, and a suspected unknown rheumatoid condition. (The main/most debilitating one is ME/CFS).
2. I was diagnosed with ME/CFS in the year: 2004, when I was 18 years old and in my last year of high school. A few months later in that same year, I was also diagnosed with depression - this pretty much came about due to of all the changes that I had been forced to make to my life, because I now had ME/CFS (as well as the depressing symptoms and nature of the illness itself!)
I have also recently been diagnosed with Ehlers-Danlos Syndrome (only in the last month), and I am waiting for a diagnosis to explain why my joints have decided to swell as well as hurt all over, and affect the inflammation markers in my blood (my doctor suspects a rheumatological condition of some sort). I am seeing a specialist in November.
3. But I had symptoms since: I first got sick with the symptoms that would eventually be diagnosed as ME/CFS in early 2004. The symptoms came on suddenly, and I thought I was getting a flu or an infection of some sort. I was lucky in that my doctor had been seeing me for years, and knew that something was wrong. It took many months, and many second and third opinions before I ended up with a conclusive diagnosis. However, I know how lucky I am to have been diagnosed so quickly - I've heard that in many cases, it can take years to get answers.
As for the Ehlers-Danlos Syndrome, I have always been super flexible, and prone to injury. I first started spontaneously dislocating joints when I was 11 years old, when I dislocated and broke my kneecap (by just sitting down on a trampoline :S). Since then, my dislocations have become more and more frequent, and now occur in most of the joints of my body. I even dislocate bones in my sleep, which is scary! I was diagnosed with "flat feet" and scoliosis of the spine in high school, and had a collapsed lung in 2001 (I have read that these can be more common in people with EDS, but I am new to this diagnosis - I could be jumping to conclusions!)
4. The biggest adjustment I’ve had to make is: Changing my entire lifestyle! I used to be a very active person. I trained in acrobatics and circus skills every day after school, kept up with my studies, did singing, palates, yoga, dancing, drama, talent quests, shopping, and made art and craft in my spare time. After getting sick, I was finding it almost impossible to do any training at all. I was missing so much, and no one seemed to understand (it was hard for me to understand what was happening to me, as well). I felt lazy, because I was used to doing so much, and suddenly all I could do was sleep and zombie around the place. I have to say, though, that it has become a lot easier to deal with the limitations of ME/CFS with time. I have found new (sitting-in-a-chair-type) hobbies to replace my old active ones! I still very much miss my old life, but I have adjusted to my new life, and it has a lot of awesomeness too.
5. Most people assume: I don't know - never really thought about that! I guess I sort of feel like most people whom I talk to in real-life think that I am a bit slow; most of the time I am too exhausted to participate in conversation much, and then afterwards I get embarrassed and hope that people haven't thought that I am rude or something! Literally thinking of, and forming words can be difficult for me many days, especially if I have used energy to get showered, dressed, sit through a car trip, and go out into the world (even if I am being pushed in my wheelchair!) Chatting online has the advantage of me being able to take my time and re-read what I write before posting it =D.
6. The hardest part about mornings are: Getting out of bed and walking down the hallway! My legs (and the rest of my body) seize up and hurt like crazy, and I wake up just as tired as I was when I went to bed. I also get dizzy when I first wake up, so I have to take it slow.
7. My favorite medical TV show is: Scrubs!
8. A gadget I couldn’t live without is:
Only one?! Well, I like being long and drawn out, so I'm gonna list a few. I couldn't live without:
* My iPad, because it lets me chat and tweet and Facebook to my friends from bed when I am too sick to get up or to type. It has a pink cover and lots of game apps on it too!
* My laptop, because I can sit in my comfy and supportive armchair and chat, draw, play and connect with people.
* My battery operated toothbrush, my wheelchair, my massive queen-size bed with all its extra pillows to support my joints, and my shower chair.
9. The hardest part about nights are: Getting comfortable enough to get to sleep, and not being able to sleep, even though I am SO INCREDIBLY EXHAUSTED!
10. Each day I take around 12 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Have tried so many! They have mostly been terribly expensive, and none have actually worked (in some cases, they significantly worsened my quality of life).
12. If I had to choose between an invisible illness or visible I would choose: That is a hard one. Can I choose no illness at all? lol! I would like to increase awareness of invisible illness to make it easier for myself and other sufferers, either way.
13. Regarding working and career: I have never been able to work since high school (other than as a volunteer for short stints). I have a Bachelor of Behavioural Science degree from university, but unfortunately I am too ill to actually use the qualification! At the moment, I am a volunteer online for various websites, and I also make art and craft. I am studying 3D art and animation for film, games and television via e-learn (online), but I am working through the coursework verrrrrrrrrrrrrrrrrrry slowly! I find it incredibly hard to concentrate most of the time. I would love to be able to work, but at the moment, I am unable to.
14. People would be surprised to know: Hmm... I don't know! I think I talk too much, and have run out of surprises... Ok, I fantasise about having a mobility scooter - you know, the ride on and drive around anywhere kind? I would LOVE one of those so that I could go around my street on good days, or go to the park, or go buy lunch on my own. That would be awesome =D. And I would so decorate it with glitteriness!
15. The hardest thing to accept about my new reality has been: The unpredictable nature of this illness from day to day/month to month/year to year. It is SO difficult to make plans. Also, it is really hard to pace myself and to try to remain as well as I can without overdoing it (or underdoing it) - it is hard to strike a balance of doing as much as I can/should do, and much as I want to do. Overdoing it, even by a small amount, means a lengthy and nasty recovery period, which is frustrating! Coming to terms with the total change of lifestyle that ME/CFS caused was also obviously incredibly difficult.
16. Something I never thought I could do with my illness that I did was: End up being so open about it (and about other things). I was a very quiet person before I got sick, but now I find I can just talk to people. I also am really proud of getting my high school certificate and my university degree while ill, because I know how hard it was for me with my illness =).
17. The commercials about my illness: Don't seem to exist in my country. They so should, though. Wonder who I could talk to about that...
18. Something I really miss doing since I was diagnosed is: Acrobatics, walking around shops browsing, having the focus to write poetry and essays, being able to paint and draw in real-life (I mainly draw with a computer mouse now because my hands don't like co-operating!) and having the energy to look and feel alive!
19. It was really hard to have to give up: Acrobatics. I tried so hard to keep going! I would do like an hour of training instead of two and a half, but then I would go home and vomit all night because I had overdone it. I would take the next day or two to recover, but then I would try again. I must have been crazy!
20. A new hobby I have taken up since my diagnosis is: Online gaming, social networking, photography, digital art design, and beading.
21. If I could have one day of feeling normal again I would: go to a special place in the bush I used to be able to walk to, and sit there and listen to all the sounds that I used to love. I'd also take photos of it all so I couldn't forget. (Gosh! That question got me emotional!) O - and I would so go to the snow with Ellenya! And the beach, and the aquarium!
22. My illness has taught me: to be more understanding of other people, to count how many steps there are to get into places, to pace my activity (even tiny tasks), and to plan my days out based on energy.
23. Want to know a secret? One thing people say that gets under my skin is: Have you tried drinking coffee? Homeopathy/naturopathy? Why don't you just have a sleep, then go out? You can't just sit there in real life; you're lazy. You should help your mother more. When I was your age... Argh! Do you think I haven't tried? Or I want to be like this?!
24. But I love it when people: Understand, or make an effort to understand. I love it when people show that they care, try to cheer me up, and make me feel worthwhile =).
25. My favorite motto, scripture, quote that gets me through tough times is: GLUG! - Because it reminds me of my awesome friends and merry gluggers!
26. When someone is diagnosed I’d like to tell them: You're not alone! Come and hang out on Twitter if you have the energy to Tweet - there are so many awesome guys and gals on there who truly understand, and who are so amazingly supportive. Also, don't pause your life while you hope to get better - make the most of what you have while you are ill, because there is always something you can do (even if it is something very small).
27. Something that has surprised me about living with an illness is: The inner strength that I have, and the resilience. I always thought I wouldn't cope with something like this, but when actually faced with it, you can't turn away.
28. The nicest thing someone did for me when I wasn’t feeling well was: There have been so many nice things! From making me cups of tea, talking to me and just being there, sending me internet and real-life hugs, sending me cat-llamas, and making me smile and feel less alone =).
29. I’m involved with Invisible Illness Week because: I know it is really important to spread the word about these hidden illnesses; to increase understanding and acceptance in the world!
30. The fact that you read this list makes me feel: Awesome! Because I feel like I have done my part to spread the word about my invisible illnesses, and I feel like people care =D
~Adrielle =)
Wednesday, September 15, 2010
War Wounds from Iron Needles & More!
Well, for the last six weeks, I have been having iron injections - one every Tuesday. My iron was very low, and iron in tablet form makes me really sick, so I can't take them. Yesterdays iron needle didn't hurt too much, but every week my bruise gets bigger, more spread out, and more multi-coloured... lol! It is about the size of my hand at the moment, which is kinda nasty. It seems to be taking forever to fade as well.
As to the cause of my swelling and pain, it is still sort of unknown. Although I have Ehlers-Danlos SyndromeME/CFS (which cause seriously nasty joint, muscle and nerve pain in themselves!), my doctor suspects that this new type of pain I am feeling (for about a year now, gradually worsening) is caused by a separate an unknown rheumatological condition (she even mentioned some kind of widespread viral arthritis at one stage). It affects pretty much every joint in my entire body, and my blood test markers have been showing a marked gradual increase in inflammation (and necrosis?!) over a period of months. All I know is - I am REALLY glad I tried the prednisone tablets, because the amount of relief they have given me has given me hope that I won't be so decrepit forever! lol
~Adrielle =)
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