Health update:
It's been a while since I've blogged about how things are going, so I figured I'd write an update, for those who are interested.
I stopped the Lyrica quite a while ago, maybe 5 days after I started taking it. It wasn't helping, at all, and the side effects were annoying. I'm now on MS Contin, which didn't help at 1 tablet a day, helped a little at 2 tablets a day, and one day I had unbelievable pain, I couldn't move, so I tried a third. And my pain just disappeared. I did feel a little disoriented/spacey, but anything is worth it if I'm pain free! I also slept very deeply for the first 3hrs that night. So I need to contact my doctor [consultant physician] again, (we're working out the right dose, increasing in the smallest increments possible as necessary) and let him know that 3 tablets a day, spread out from when I first get up until late evening is enough to kill pain.
Sleep hygeine/getting up at the same time each day:
I'm still getting up at 1pm each day, because my sleep pattern hasn't adjusted yet, and I've had to get up at different times the past week (9am, 11am, etc.) so I think my body is just really confused as to when it's meant to sleep! I'll move it back to 12.45pm or 12.30pm as soon as I've adjusted to the change. It's really difficult, because my meds that are supposed to keep me awake don't work well enough anymore. I've never taken them daily, because I've never had enough, but now I'm just so desperately in need of sleep that I could fall asleep if I lay down, even for a minute. So I can't lie down, unless my pain is really bad, enough that I can't sit up or move.
I doubt I'll ever be able to get up at 9am every day. I know I'll have to get up early some days for school in November and next year, but it's different; if you're getting up at 9am when you're at home, there is nothing to do. I'm too sick and sleepy/exhausted to study, which leaves watching tv or going on the internet. They're all nice things, but from 9am-11pm? No thanks. Even if you add in reading, writing and tidying my room, I'd be so tired that I'd need a nap. But I'm not allowed to nap. I think on weekends I should be allowed to sleep in, until midday at the latest, but eventually I'd hope to get up by 11am.
Weird. Why am I more awake some days than others?
I seem to be more awake and alert when I know I have to do something/be somewhere. For instance, yesterday I got up at 1pm, took my meds, made my bed, got dressed, etc. and was sleepy the whole day. Today, I had maths tutoring, and I got up at 12.45pm, was a little awake and alert before my meds, and am still quite awake now, after 9pm. It's the same with school, (except the 6.30am starts) I only struggle with breakfast, because I'm not hungry in the mornings, but if I don't eat a lot, I'll be starving in the middle of my first class. I am allowed to eat in class, but it's awkward... Like I'm drawing more attention to myself. So I eat a big breakfast (usually curry and rice, or spaghetti bolognese, or something filling) and then am so stressed by school that I can usually only manage a bit of rice or a sandwich with some water for the rest of the day. Then I get home, and am de-stressed, and immediately starving!
Pain:
My pain has got worse; I read in the paper that it's been the wettest year since the drought began, and it's a colder, more bitter winter than last year. This explains my pain. But now my knees seize up, and my ankles hurt terribly, and I get awful rheumatism-like pain in my limbs. The joints are the worst. I really hate leaving the house now, because as soon as I do, it's instant pain. And the pain doesn't go away until I'm really warm and have taken enough painkillers. A lot of nights it keeps me awake. Thankfully we got an inverted heater/cooler installed in my room, and we got a grant to cover part of it, (as I can't regulate my body temperature) so now I can warm up my room and stay warmer. My new quilt is also super warm, and all of these things help with the pain. Heat packs are great, too.
Does anyone else get this sort of pain, or have tips to minimise or cope with it?
Sleep...
My sleep hasn't figured itself out yet. Some nights I sleep okay, other nights I'm awake until 6am, then wake hourly, not to mention when my younger brother gets up and gets ready for school. That's usually from 7.30am-8.40am. If I could sleep from 11pm, it'd be fine. But I can't, and I need more sleep than I ever have: 10-12hrs a night, just to minimise my pain and so that I'm not sleepy all day. I just hope my sleep will improve before my exams!
Well, that's about it! If there are any other things you'd like to know about, comment, and I'll respond. Thanks for reading! Alex. xoxo
Showing posts with label sleep. Show all posts
Showing posts with label sleep. Show all posts
Sunday, August 29, 2010
Tuesday, June 29, 2010
Holidays!
Holidays!
Yep, it's finally the holidays!! Friday was my last day of the school term, and I was up until midnight finishing my homework on Thursday, after having tutoring at 6.30pm. Tutoring was alright, but calculus is just getting more and more difficult. I hope I'll be able to study next week, so I don't forget everything, but above all, I hope I can do well on my exams and remaining SACs. We covered Integration that week. I didn't like it much! I am seeing a friend on Saturday, we're going to see Twilight. I should really rent the other movies so I'm not totally lost! I can't wait to get out of the house, but my main concern is that I'll be so exhausted I won't be able to enjoy it. I've been doing too much these past few weeks. I also need to find a blazer. I saw some in a magazine that were by Living Doll, and I'm hoping there's a place nearby that stocks the brand, as well as blazers that aren't necessarily floral. I just want something plain!
The past week:
The past week has been pretty busy; on Monday I found out that I definitely need braces. Again. I saw the orthodontist (not the one who did my last set of braces) and I need them on my top set of teeth. I'm having them done on the 6th of July. It would be awful if my teeth moved again! So I need to get Panadeine Forte from my doctor for that, because it's always really painful getting braces put on or having the wires changed. But this orthodontist is nice, so that's one good thing. I had to have an x-ray that same day, and then I had an appointment in the evening.
On Wednesday I had my personal training session, and went to Officeworks afterwards to pick up some things for a school project. (For my younger brother.) I also got another notebook, identical to the one I currently use as a diary because I figure I'll go through it in the next few months, and I really like the design.
Thursday I didn't sleep very well, and was up from about 10am, watching the results of the leadership spill, and the speeches from ex PM Kevin Rudd, the new PM Julia Gillard, and deputy PM Wayne Swan. I ended up going back to bed at about 1.30pm for a nap before tutoring. (Previously mentioned.)
Friday I had another appointment, and I only got 2hrs' sleep. I also changed my bed linen (a huge task for me, one I try to do every week) washed my hair and put on a wash. I spent basically all of the weekend in bed; I feel completely wiped out, and most days it takes me an hour to sit up in bed. It's like my limbs are lead.
This week:
Today I had an appointment, as I did yesterday evening, but I don't have to do anything on Wednesday and Thursday except rest before I go out on Saturday. On Friday I'm having my hair cut, which is good, because it'll save me energy; I won't have to wash it that day! I've been going to bed between 11pm and 11.45pm for the past week or so, and it worked quite well some nights, except that I was waking every hour, but last night I went to bed at 11.45, gave up on sleep at 2am, watched tv, tried sleeping repeatedly, but was awake until about 6.30am. And I got up at 11am today, so I am feeling really sick, disoriented, dizzy and nauseous. If someone could fix my sleep, I think all my other symptoms would ease incredibly! Does anyone else feel that if they slept, their symptoms would be relieved?
The new PM...
I think it's a good thing that the Labor party has a new leader; after several disasters, for which Kevin Rudd took most, if not all of the blame, they needed a change of image. I also think that Julia Gillard would be able to defeat Tony Abbot more easily than Kevin Rudd, but it's still very early to be making predictions. But I do think that by changing leaders they have distanced themselves somewhat from the various disasters that have happened, and are also promising change. I am interested to see what sort of role Kevin Rudd will take on in the new Government, and am also wondering when he will change his Twitter account. It still has the title "PM" in it. Speaking of Twitter, there are some really funny (fake) politician's accounts out there. I can't wait for the election, but I really hope that it doesn't come too close to my exams!
That's it...
I guess that's all I can really think of at the moment. I haven't got a lot to say, but if I were feeling better, I would write more about the change of leadership. I'm still writing in my diary nearly every day, and I spend a lot of time on my iPhone. I love the "Fruit Ninja" app. It's heaps of fun, but not so good if you're trying to relax before bed! Then I just read news sites. I might try to get up at 11am or midday each day, because then I might sleep at night. I'll really need my sleep before I go to see the film, because it takes about an hour to get there, (I think, when you include picking my friend up) so I'll have to get up at about 11am. And I want to be able to enjoy myself, and eat junk food! =p
Keep the comments coming, I love to hear from any and all readers! Sorry if this was a boring post!!
Yep, it's finally the holidays!! Friday was my last day of the school term, and I was up until midnight finishing my homework on Thursday, after having tutoring at 6.30pm. Tutoring was alright, but calculus is just getting more and more difficult. I hope I'll be able to study next week, so I don't forget everything, but above all, I hope I can do well on my exams and remaining SACs. We covered Integration that week. I didn't like it much! I am seeing a friend on Saturday, we're going to see Twilight. I should really rent the other movies so I'm not totally lost! I can't wait to get out of the house, but my main concern is that I'll be so exhausted I won't be able to enjoy it. I've been doing too much these past few weeks. I also need to find a blazer. I saw some in a magazine that were by Living Doll, and I'm hoping there's a place nearby that stocks the brand, as well as blazers that aren't necessarily floral. I just want something plain!
The past week:
The past week has been pretty busy; on Monday I found out that I definitely need braces. Again. I saw the orthodontist (not the one who did my last set of braces) and I need them on my top set of teeth. I'm having them done on the 6th of July. It would be awful if my teeth moved again! So I need to get Panadeine Forte from my doctor for that, because it's always really painful getting braces put on or having the wires changed. But this orthodontist is nice, so that's one good thing. I had to have an x-ray that same day, and then I had an appointment in the evening.
On Wednesday I had my personal training session, and went to Officeworks afterwards to pick up some things for a school project. (For my younger brother.) I also got another notebook, identical to the one I currently use as a diary because I figure I'll go through it in the next few months, and I really like the design.
Thursday I didn't sleep very well, and was up from about 10am, watching the results of the leadership spill, and the speeches from ex PM Kevin Rudd, the new PM Julia Gillard, and deputy PM Wayne Swan. I ended up going back to bed at about 1.30pm for a nap before tutoring. (Previously mentioned.)
Friday I had another appointment, and I only got 2hrs' sleep. I also changed my bed linen (a huge task for me, one I try to do every week) washed my hair and put on a wash. I spent basically all of the weekend in bed; I feel completely wiped out, and most days it takes me an hour to sit up in bed. It's like my limbs are lead.
This week:
Today I had an appointment, as I did yesterday evening, but I don't have to do anything on Wednesday and Thursday except rest before I go out on Saturday. On Friday I'm having my hair cut, which is good, because it'll save me energy; I won't have to wash it that day! I've been going to bed between 11pm and 11.45pm for the past week or so, and it worked quite well some nights, except that I was waking every hour, but last night I went to bed at 11.45, gave up on sleep at 2am, watched tv, tried sleeping repeatedly, but was awake until about 6.30am. And I got up at 11am today, so I am feeling really sick, disoriented, dizzy and nauseous. If someone could fix my sleep, I think all my other symptoms would ease incredibly! Does anyone else feel that if they slept, their symptoms would be relieved?
The new PM...
I think it's a good thing that the Labor party has a new leader; after several disasters, for which Kevin Rudd took most, if not all of the blame, they needed a change of image. I also think that Julia Gillard would be able to defeat Tony Abbot more easily than Kevin Rudd, but it's still very early to be making predictions. But I do think that by changing leaders they have distanced themselves somewhat from the various disasters that have happened, and are also promising change. I am interested to see what sort of role Kevin Rudd will take on in the new Government, and am also wondering when he will change his Twitter account. It still has the title "PM" in it. Speaking of Twitter, there are some really funny (fake) politician's accounts out there. I can't wait for the election, but I really hope that it doesn't come too close to my exams!
That's it...
I guess that's all I can really think of at the moment. I haven't got a lot to say, but if I were feeling better, I would write more about the change of leadership. I'm still writing in my diary nearly every day, and I spend a lot of time on my iPhone. I love the "Fruit Ninja" app. It's heaps of fun, but not so good if you're trying to relax before bed! Then I just read news sites. I might try to get up at 11am or midday each day, because then I might sleep at night. I'll really need my sleep before I go to see the film, because it takes about an hour to get there, (I think, when you include picking my friend up) so I'll have to get up at about 11am. And I want to be able to enjoy myself, and eat junk food! =p
Keep the comments coming, I love to hear from any and all readers! Sorry if this was a boring post!!
Tuesday, June 15, 2010
Maths and other things
Another outing!
I got to go to IKEA on Saturday, as I really needed a new wardrobe and bedside table. I didn't go until 4pm, but I still needed Ondansetron; I've been getting shocking nausea, headaches, dizziness and disorientation/confusion from the LDN. (Which I have had to stop taking; I have been off it for two or three days.) I went to the cafe first, and I really love IKEA's cafe. Particularly the free refills on soft drinks! But for the past 4 days I've eaten one bowl of low fat pumpkin soup (nearly threw it up, that was a mistake) and a few spoons of coconut rice if I get starving. I wonder if I've lost weight; I know I lost a kilo last week. Anyway, I was all *sadface* because I couldn't even finish the kids' bowl of chips I'd got. But I managed a glass of Pepsi. =D It's a good thing I don't lose weight as easily as I used to, otherwise I'd be really thin by now!
Mum had already found out what aisle the wardrobe and bedside table were in, so we went to get them, then organised delivery for the next day, preferably after midday. The furniture arrived at 11am, so I got up at 10.15am, (which is when Mum warned me it would be dropped off soon) watched a bit of tv, and was going to go back to bed, but had to help with the grocery shopping, and get some take-away coconut rice. (If you're ever feeling nauseous, this seems to be quite tolerable in small amounts.) Then I went back to bed, to catch up on sleep. I'd only got 2hrs' broken sleep during the night. O.o
We're going to organise for the furniture to be assembled (hopefully) sometime this week, and then I'll post pics on Tumblr or Twitter of the new furniture. One of the wardrobe doors has a mirror on it, which is brilliant, 'cause I've only ever had one of those little mirrors designed to sit on a shelf so you can see your face. Not useful for looking at a whole outfit!
Maths...
I started Unit 4 on Sunday, having finished my calculus assignment last week, and my 70-minute SAC in the same week, as well. I'm really not sure about how I'll go, and I know for sure I got one of the short-answer questions really wrong. I guessed. Sometimes guessing pays off, sometimes it doesn't; but you had to attempt every question to show a satisfactory understanding of the topics in that SAC. Ew. Week 1 is antidifferentiation, which is pretty hard. There are also way too many rules, plus it's complicated to set out and remember what I am supposed to be writing!
I had maths tutoring on Monday, and we covered all of Week 1, then after about 2.5hrs of tutoring, I studied for another 3.5hrs, and I managed to complete the week's homework and a 20-minute practice exam. I plan to revise antidifferentiation as soon as I can sleep enough and the house is quiet. I hope I get a decent score for maths this year, I know that it wasn't this difficult in Year 11!!
I might ask some of my friends who graduated last year to study with me/share their notes before my exams. That is one slight advantage to being left behind; you can get help from others who have very recently suffered through the same subjects as you!
I hope my tutor isn't disappointed in me when I get my marks back. She's really nice, I just feel like I could do so much better if I could sleep each night, or 3 nights per week. I feel like I'm letting everyone down; I used to be able to survive on 3hrs' sleep every night when I was 13, now I can't survive on 4 or 5hrs' broken sleep. I think if I were to get 5hrs' sleep without waking, between 11pm and 4am, I would be okay. But some nights I am awake until 4am, or even 8am. And I don't sleep deeply after a whole night awake anymore.
Sleep.
I slept much better on Saturday night, only waking two or three times, and I got to sleep at around 1am, woke at 2am and 6.30am, and got up at 10.15am. Obviously I didn't get 8hrs' sleep, as I was awake from 6.30 onwards, dozing occasionally.
Sunday night I slept about the same, except I woke at 2.30am, and couldn't sleep between 7.30am and 11am as my younger brother had a friend over for a sleepover the night before, and they were quite loud. But, thankfully, they were silent when they got up at 4am or something to watch the World Cup. I had maths tutoring at midday, so I had to get up at 11am, and I took Ondansetron at 10.40am, so I would be able to get ready and eat a little without throwing up.
I slept okay last night, as well; I got to sleep at around 1.30am, woke once or twice (I don't remember when, so I musn't have been awake long) and have been awake since 6.50am. (It's nearly 10.20am.)
I've dimmed my bedside alarm clock so that it doesn't display the time; all my doctors have made me "clock watch" so I can say when I wake/sleep, etc. but that obviously increases anxiety and makes you less likely to sleep. I'm getting used to it, slowly, but I hope it helps my sleep in the long run. I honestly think, looking back at my sleep pattern, that any amount of anxiety or stress directly affects my sleep. Which is why my sleep has been getting steadily worse, along with my health, since I started Year 11, and I get worse each time a doctor lies to me, lets me down, or makes false promises and gives false hope. Ie. "I can cure you, you feel like this all because of your Idiopathic Hypersomnolence." I need to learn to let go of these things, but I've never been good at moving on, or no longer dwelling on the past, so it will be really hard. But it's affecting my health, so I must try.
Blogging...
I'm wondering if I should keep going with my blog; I do know that some people read it, I'm just not sure if it's worth it. I feel I should post at least each week, but is there a point if no one really cares? Would I be better off just using my energy to write in my diary most days. If anyone has any opinions, tips or comments, I'm always happy to hear them!
I got to go to IKEA on Saturday, as I really needed a new wardrobe and bedside table. I didn't go until 4pm, but I still needed Ondansetron; I've been getting shocking nausea, headaches, dizziness and disorientation/confusion from the LDN. (Which I have had to stop taking; I have been off it for two or three days.) I went to the cafe first, and I really love IKEA's cafe. Particularly the free refills on soft drinks! But for the past 4 days I've eaten one bowl of low fat pumpkin soup (nearly threw it up, that was a mistake) and a few spoons of coconut rice if I get starving. I wonder if I've lost weight; I know I lost a kilo last week. Anyway, I was all *sadface* because I couldn't even finish the kids' bowl of chips I'd got. But I managed a glass of Pepsi. =D It's a good thing I don't lose weight as easily as I used to, otherwise I'd be really thin by now!
Mum had already found out what aisle the wardrobe and bedside table were in, so we went to get them, then organised delivery for the next day, preferably after midday. The furniture arrived at 11am, so I got up at 10.15am, (which is when Mum warned me it would be dropped off soon) watched a bit of tv, and was going to go back to bed, but had to help with the grocery shopping, and get some take-away coconut rice. (If you're ever feeling nauseous, this seems to be quite tolerable in small amounts.) Then I went back to bed, to catch up on sleep. I'd only got 2hrs' broken sleep during the night. O.o
We're going to organise for the furniture to be assembled (hopefully) sometime this week, and then I'll post pics on Tumblr or Twitter of the new furniture. One of the wardrobe doors has a mirror on it, which is brilliant, 'cause I've only ever had one of those little mirrors designed to sit on a shelf so you can see your face. Not useful for looking at a whole outfit!
Maths...
I started Unit 4 on Sunday, having finished my calculus assignment last week, and my 70-minute SAC in the same week, as well. I'm really not sure about how I'll go, and I know for sure I got one of the short-answer questions really wrong. I guessed. Sometimes guessing pays off, sometimes it doesn't; but you had to attempt every question to show a satisfactory understanding of the topics in that SAC. Ew. Week 1 is antidifferentiation, which is pretty hard. There are also way too many rules, plus it's complicated to set out and remember what I am supposed to be writing!
I had maths tutoring on Monday, and we covered all of Week 1, then after about 2.5hrs of tutoring, I studied for another 3.5hrs, and I managed to complete the week's homework and a 20-minute practice exam. I plan to revise antidifferentiation as soon as I can sleep enough and the house is quiet. I hope I get a decent score for maths this year, I know that it wasn't this difficult in Year 11!!
I might ask some of my friends who graduated last year to study with me/share their notes before my exams. That is one slight advantage to being left behind; you can get help from others who have very recently suffered through the same subjects as you!
I hope my tutor isn't disappointed in me when I get my marks back. She's really nice, I just feel like I could do so much better if I could sleep each night, or 3 nights per week. I feel like I'm letting everyone down; I used to be able to survive on 3hrs' sleep every night when I was 13, now I can't survive on 4 or 5hrs' broken sleep. I think if I were to get 5hrs' sleep without waking, between 11pm and 4am, I would be okay. But some nights I am awake until 4am, or even 8am. And I don't sleep deeply after a whole night awake anymore.
Sleep.
I slept much better on Saturday night, only waking two or three times, and I got to sleep at around 1am, woke at 2am and 6.30am, and got up at 10.15am. Obviously I didn't get 8hrs' sleep, as I was awake from 6.30 onwards, dozing occasionally.
Sunday night I slept about the same, except I woke at 2.30am, and couldn't sleep between 7.30am and 11am as my younger brother had a friend over for a sleepover the night before, and they were quite loud. But, thankfully, they were silent when they got up at 4am or something to watch the World Cup. I had maths tutoring at midday, so I had to get up at 11am, and I took Ondansetron at 10.40am, so I would be able to get ready and eat a little without throwing up.
I slept okay last night, as well; I got to sleep at around 1.30am, woke once or twice (I don't remember when, so I musn't have been awake long) and have been awake since 6.50am. (It's nearly 10.20am.)
I've dimmed my bedside alarm clock so that it doesn't display the time; all my doctors have made me "clock watch" so I can say when I wake/sleep, etc. but that obviously increases anxiety and makes you less likely to sleep. I'm getting used to it, slowly, but I hope it helps my sleep in the long run. I honestly think, looking back at my sleep pattern, that any amount of anxiety or stress directly affects my sleep. Which is why my sleep has been getting steadily worse, along with my health, since I started Year 11, and I get worse each time a doctor lies to me, lets me down, or makes false promises and gives false hope. Ie. "I can cure you, you feel like this all because of your Idiopathic Hypersomnolence." I need to learn to let go of these things, but I've never been good at moving on, or no longer dwelling on the past, so it will be really hard. But it's affecting my health, so I must try.
Blogging...
I'm wondering if I should keep going with my blog; I do know that some people read it, I'm just not sure if it's worth it. I feel I should post at least each week, but is there a point if no one really cares? Would I be better off just using my energy to write in my diary most days. If anyone has any opinions, tips or comments, I'm always happy to hear them!
Sunday, May 23, 2010
Tumblr
Tumblr!
Yes, I've taken another step into the 21st century; I now have a Tumblr account... I've just posted an introductory post, reblogged some funny stuff, and posted some of my fave pics. I'm not sure exactly what else to do with it. It's a mini-blogging service, right? Does that mean that when I'm too tired to write a full post here, I can write a mini one there? ... I might just do that! Um, anyway, this is me on Tumblr: http://thecabbagestalk.tumblr.com/ I figured I should try it out, as a lot of people on Facebook and on Twitter have it. I like it so far, especially the background I chose for my Tumblr. =D
Side effects...
Because my specialist put me on a dose that was so high it's classified as Naltrexone, not Low Dose Naltrexone, I got one of the worst side effects possible: lethargy/fatigue/exhaustion. So that's why I've been feeling more zombie-like than usual this past week! I also had a lot of nausea and dizziness/lightheadedness. Now that I'm down to about 6mg, I should have milder nausea and less dizziness/lightheadedness. Although the nausea was shocking yesterday when I got up for tutoring; I couldn't sit up or even drink. Thankfully I had some Ondansetron!
Maths:
The next two weeks are assigned to a two week project SAC, designed to be completed in about 7.5hrs max. After that, I have a 60 minute SAC, then I start Unit 4, which begins with antidifferentiation. I had a bit of trouble with that in Year 11, although it was quite rushed when we studied it. Hopefully I'll do better this time around! I have maths tutoring today and we're going to revise the topics my teacher said would be covered in the SAC. That way I'll be fully prepared. (I hope; Mum had a look [she's my supervisor] and said it looked really long.) The next SAC (the 60 minute one) is on calculus/differentiation and circular functions, so I definitely need to revise circular functions before that week begins. I got a Very High on my last SAC, which is an A/A+, I really hope I can maintain that for my school work and SACs.
Exams are my main worry; I get panic attacks about them, and get exam "panic" - my mind can go blank from fear. It happened twice in two Year 11 maths tests. Plus it's quite scary being in a room with just the examiner watching you. And this time it won't be a teacher from my school. =( There's a morning exam, so I don't know how well I'll do on that one, as I can't function until midday, at least. The other one starts just before midday, I think, so that should be okay. I've applied to sit them at home, so that way I can lie down during my rest breaks. I hope I get a good mark; my teacher thinks I will definitely pass, which is brilliant! She actually thought I'd been a student who excelled at maths my whole life! =o
Sleep...
I slept a bit better the other night, and I seem to be able to get to sleep by 1.30am at the moment, but I wake quite regularly. Today I went to bed at midnight, fell asleep at around 1am, woke at about 2am, then 4.50am, and I'm still awake. I tried to get back to sleep, but couldn't, so I figured I'd write a blog post. I can go to school on 3 hours sleep, it's just trying to get 3 hours of unbroken sleep. I'm really worried about my sleeping pattern because I start orientation in Nov/Dec, and I need to be able to get up at 6.30am, or 6.50am at the latest. Which means I need some solid sleep, and to be able to sleep from about midnight. I know someone my age needs 9-10 hours of sleep per night, and I need more than that because of my Idiopathic Hypersomnolence, but, realistically, I haven't slept like that since I was about 10. If one thing gets sorted out this year, or changes for the better, I want it to be my sleep. (Or "sleep pattern")
I guess that's it.
Thanks for all your comments, I really appreciate every one of them, and respond to them as soon as I can; lately I'm not able to use my laptop much at all. I'll try to sleep now, seeing as it's after 6am. If you've got any tips on how to use Tumblr, how to cope with lack of sleep/side effects/illness or exam anxiety, I'd love to hear them! =) Thanks for reading!
Yes, I've taken another step into the 21st century; I now have a Tumblr account... I've just posted an introductory post, reblogged some funny stuff, and posted some of my fave pics. I'm not sure exactly what else to do with it. It's a mini-blogging service, right? Does that mean that when I'm too tired to write a full post here, I can write a mini one there? ... I might just do that! Um, anyway, this is me on Tumblr: http://thecabbagestalk.tumblr.com/ I figured I should try it out, as a lot of people on Facebook and on Twitter have it. I like it so far, especially the background I chose for my Tumblr. =D
Side effects...
Because my specialist put me on a dose that was so high it's classified as Naltrexone, not Low Dose Naltrexone, I got one of the worst side effects possible: lethargy/fatigue/exhaustion. So that's why I've been feeling more zombie-like than usual this past week! I also had a lot of nausea and dizziness/lightheadedness. Now that I'm down to about 6mg, I should have milder nausea and less dizziness/lightheadedness. Although the nausea was shocking yesterday when I got up for tutoring; I couldn't sit up or even drink. Thankfully I had some Ondansetron!
Maths:
The next two weeks are assigned to a two week project SAC, designed to be completed in about 7.5hrs max. After that, I have a 60 minute SAC, then I start Unit 4, which begins with antidifferentiation. I had a bit of trouble with that in Year 11, although it was quite rushed when we studied it. Hopefully I'll do better this time around! I have maths tutoring today and we're going to revise the topics my teacher said would be covered in the SAC. That way I'll be fully prepared. (I hope; Mum had a look [she's my supervisor] and said it looked really long.) The next SAC (the 60 minute one) is on calculus/differentiation and circular functions, so I definitely need to revise circular functions before that week begins. I got a Very High on my last SAC, which is an A/A+, I really hope I can maintain that for my school work and SACs.
Exams are my main worry; I get panic attacks about them, and get exam "panic" - my mind can go blank from fear. It happened twice in two Year 11 maths tests. Plus it's quite scary being in a room with just the examiner watching you. And this time it won't be a teacher from my school. =( There's a morning exam, so I don't know how well I'll do on that one, as I can't function until midday, at least. The other one starts just before midday, I think, so that should be okay. I've applied to sit them at home, so that way I can lie down during my rest breaks. I hope I get a good mark; my teacher thinks I will definitely pass, which is brilliant! She actually thought I'd been a student who excelled at maths my whole life! =o
Sleep...
I slept a bit better the other night, and I seem to be able to get to sleep by 1.30am at the moment, but I wake quite regularly. Today I went to bed at midnight, fell asleep at around 1am, woke at about 2am, then 4.50am, and I'm still awake. I tried to get back to sleep, but couldn't, so I figured I'd write a blog post. I can go to school on 3 hours sleep, it's just trying to get 3 hours of unbroken sleep. I'm really worried about my sleeping pattern because I start orientation in Nov/Dec, and I need to be able to get up at 6.30am, or 6.50am at the latest. Which means I need some solid sleep, and to be able to sleep from about midnight. I know someone my age needs 9-10 hours of sleep per night, and I need more than that because of my Idiopathic Hypersomnolence, but, realistically, I haven't slept like that since I was about 10. If one thing gets sorted out this year, or changes for the better, I want it to be my sleep. (Or "sleep pattern")
I guess that's it.
Thanks for all your comments, I really appreciate every one of them, and respond to them as soon as I can; lately I'm not able to use my laptop much at all. I'll try to sleep now, seeing as it's after 6am. If you've got any tips on how to use Tumblr, how to cope with lack of sleep/side effects/illness or exam anxiety, I'd love to hear them! =) Thanks for reading!
Saturday, May 1, 2010
Distance Education
Good news!!!I got my work for Week 9 completed last Saturday and my work for Week 10 was finished on Thursday, so Mum was able to mail them both on Friday. I felt so much better once I'd finished my work; like I wasn't weighed under anymore. There's just so much work that it overwhelms me & makes me sicker. But I got my work back (Weeks 1-4) and I got everything right, except for one or two questions. My teacher thinks I have a "really good understanding" of all the concepts, even graphs!! So if I do that well on my SAC, I should end up with a B or an A as my mark so far. Which is brilliant, I've never been a good maths student! She's still marking the SACs for my 'class', but I should receive it soon. I use registered mail for all my distance education work & paperwork/forms; it's reliable, can't get lost, and you get a delivery receipt. I've got a SAC in 3-4 weeks, I think it's on differentiation/calculus, so I should be okay with that one. I'm just not great at using my calculator. It's a TI-89 Titanium. (If anyone has/had one and can give me some tips on how to use it, I'll be eternally grateful!!)
Sleep...
I haven't been sleeping much at all. Two hours' broken sleep some nights, 5 hours' broken sleep other nights. The longest I can stay asleep for is about an hour. So I wake hourly on a good night, but every 10mins on a bad night. Today I went to bed at about 1.20am, fell asleep around 2.15am; woke at 6.15am and 8.40am. (Haven't slept since.) That was a pretty good sleep. I just wish I could've slept 'til midday so I could have, like, 8-9 hours of sleep before maths tutoring. (Which is at 2pm.) If I could sleep for 7 hours a night, without waking, my pain would be greatly reduced, I'd be able to function and I wouldn't feel like an early onset dementia patient!! (Seriously; I forget sentences, the names of objects, where I'm going, what a key does AND what it's called... I can get to the front door, have my key in my hand and go: "I don't know what it's called or what it does. How do I get in?")
Another "specialist"
Mum did some more research & found a doctor who is about 1/2 an hour from us, and he actually TREATS pain!! With real painkillers!! Goodbye, Panadeine Forte, hello sleep and pain relief!! He also uses LDN, which is highly recommended by some overseas Twitter friends. One problem: no appointments until SEPTEMBER. I'm on the cancellation list, but as soon as I can manage a phone call, I'll ring up and explain my situation; Year 12, immense pain, sleep deprivation, exams in October/November, my need to graduate next year. Hopefully I can get an earlier appointment. Fingers crossed!! But don't worry, I'm not getting my hopes up; aside from pain relief. I'm not going to be devastated and have a relapse caused by another doctor making promises no one can keep.
Organisation...
I'm usually an organised person when it comes to schoolwork, study and homework, but it's got so much harder now I'm this ill. Plus I get panicked and stressed very easily, so once I mail something, I worry that it hasn't got there/I wrote the wrong name or address/it's been lost. So I'm an anxious person to say the least. This year, I've let things slip. The work being 7 weeks late meant I slid downhill and was constantly overwhelmed. So the necessary forms aren't being filled in on time (also because they're sent 5 weeks late) but it's not helping. Thankfully, there's email, which I can check in bed on my iPhone!! So I have some Special Provisions info for my exams in my email inbox, plus the booklet is in the mail and should arrive in time for my Wednesday appointment with my usual "specialist." I also need to change one of the exams. It starts at 9.45am or something, and I can't function until after midday. So I need aforementioned "specialist" to put in a request for a change of time. She's great with paperwork and the "typical" ME/CFS cases, but isn't good for severe cases. Also she quote: "won't think outside the box in regard to treatments." End quote. Even L-Carnitine is to risky for her. So it's Melatonin (never worked) or anti-depressants. (Never worked, made me really sick.) So, yeah. I'd better be more organised for orientation this summer and school next year!! Hope my uniform still fits; I've been eating 3 meals a day some days!!!
Formspring.me:
I got some rather abusive/offensive questions on formspring.me when I said "ask me something" on Facebook & Twitter. I have an idea of who it was, and one of the questions I didn't answer because it would give away information like my location. (Stupid idea on the internet.) So I've disabled the "anonymous" option on questions. But feel free to ask me any questions that are civil and not offensive. =)
http://www.formspring.me/thecabbagestalk
I'll blog again soon:
Thanks for your comments, they mean the world to me. It's nice to not be called a liar", "whinger" or "faker" just because I try to raise awareness about ME/CFS and actually talk/blog/tweet about it!!
Hope you're all well, take care.
Alex. x
Sleep...
I haven't been sleeping much at all. Two hours' broken sleep some nights, 5 hours' broken sleep other nights. The longest I can stay asleep for is about an hour. So I wake hourly on a good night, but every 10mins on a bad night. Today I went to bed at about 1.20am, fell asleep around 2.15am; woke at 6.15am and 8.40am. (Haven't slept since.) That was a pretty good sleep. I just wish I could've slept 'til midday so I could have, like, 8-9 hours of sleep before maths tutoring. (Which is at 2pm.) If I could sleep for 7 hours a night, without waking, my pain would be greatly reduced, I'd be able to function and I wouldn't feel like an early onset dementia patient!! (Seriously; I forget sentences, the names of objects, where I'm going, what a key does AND what it's called... I can get to the front door, have my key in my hand and go: "I don't know what it's called or what it does. How do I get in?")
Another "specialist"
Mum did some more research & found a doctor who is about 1/2 an hour from us, and he actually TREATS pain!! With real painkillers!! Goodbye, Panadeine Forte, hello sleep and pain relief!! He also uses LDN, which is highly recommended by some overseas Twitter friends. One problem: no appointments until SEPTEMBER. I'm on the cancellation list, but as soon as I can manage a phone call, I'll ring up and explain my situation; Year 12, immense pain, sleep deprivation, exams in October/November, my need to graduate next year. Hopefully I can get an earlier appointment. Fingers crossed!! But don't worry, I'm not getting my hopes up; aside from pain relief. I'm not going to be devastated and have a relapse caused by another doctor making promises no one can keep.
Organisation...
I'm usually an organised person when it comes to schoolwork, study and homework, but it's got so much harder now I'm this ill. Plus I get panicked and stressed very easily, so once I mail something, I worry that it hasn't got there/I wrote the wrong name or address/it's been lost. So I'm an anxious person to say the least. This year, I've let things slip. The work being 7 weeks late meant I slid downhill and was constantly overwhelmed. So the necessary forms aren't being filled in on time (also because they're sent 5 weeks late) but it's not helping. Thankfully, there's email, which I can check in bed on my iPhone!! So I have some Special Provisions info for my exams in my email inbox, plus the booklet is in the mail and should arrive in time for my Wednesday appointment with my usual "specialist." I also need to change one of the exams. It starts at 9.45am or something, and I can't function until after midday. So I need aforementioned "specialist" to put in a request for a change of time. She's great with paperwork and the "typical" ME/CFS cases, but isn't good for severe cases. Also she quote: "won't think outside the box in regard to treatments." End quote. Even L-Carnitine is to risky for her. So it's Melatonin (never worked) or anti-depressants. (Never worked, made me really sick.) So, yeah. I'd better be more organised for orientation this summer and school next year!! Hope my uniform still fits; I've been eating 3 meals a day some days!!!
Formspring.me:
I got some rather abusive/offensive questions on formspring.me when I said "ask me something" on Facebook & Twitter. I have an idea of who it was, and one of the questions I didn't answer because it would give away information like my location. (Stupid idea on the internet.) So I've disabled the "anonymous" option on questions. But feel free to ask me any questions that are civil and not offensive. =)
http://www.formspring.me/thecabbagestalk
I'll blog again soon:
Thanks for your comments, they mean the world to me. It's nice to not be called a liar", "whinger" or "faker" just because I try to raise awareness about ME/CFS and actually talk/blog/tweet about it!!
Hope you're all well, take care.
Alex. x
Tuesday, March 30, 2010
iMac
YAY!! ...... Oh, crap..... Oooh, cool.
We finally have a functioning computer!! I've never had a mac before, but we've now got an iMac as the family computer; though I've been on it all night! (That's the "YAY!!") I'm so excited to have new music, but panicked that my iPod won't fully sync, it keeps saying: "The iPod "Alex's iPod" cannot be synced. The required file cannot be found." (That's the "Oh, crap.") It's, like, 1am, & I'm so stressed, annoyed & confused. I bought $110 worth of music, & not all of it may have synced. Oh, btw, it's not my pension being spent on Rammstein, Lady GaGa P!nk, blur & more, it's my Christmas & birthday iTunes vouchers. I have about $10 left, I think. I've been making a list of songs I want ever since our pc decided it wouldn't co-operate with iTunes. (It did this by taking 15mins to open iTunes, then crash when I clicked anything at all.) It was a very manipulative PC. lol!! Oh, the iMac has a WEBCAM!! (That's the "Oooh, cool" bit.) It has this thing called Photo Booth, & you can take pics using aforementioned webcam with various effects & backgrounds. It's awesome, but it also means I'll know how to look halfway decent in actual pics. Practice should make decent. (I'd rather perfect, but I'll never look perfect in a pic!!!) Seriously, I'm not photogenic. I may have to take my iPod to the store & see what the problem is. Must ask mum when she can take me. That is, if the iTunes updates don't fix the problem.
Woo-hoo!!
I read in the paper (well, the newspaper's site on my mobile) that 'The Simpsons' vocab has entered ours. But the "woo-hoo!" part is that I'm finally over my virus, my second in three weeks, & should receive info from my distance education teacher soon about how many 'send' exercises & reviews I must complete. I really hope I can stay in Methods this year, & graduate next year, I really don't want to get worse. I slept rather well last night, luckily. I got 4hrs' sleep without waking! Then the iMac was installed yesterday afternoon, & I spent all evening up until now, pretty much, on the iMac, buying music, making playlists & generally having as much fun as I can possibly have, being me. Also, with the thing about posture supposedly improving my pain levels; it's not. It's so much worse!! But I'm gonna keep going, to either improve, or prove my specialist wrong. I love doing that. *evil grin*
Goodnight...
Well, it's about 1.10am now, so I should check on the progress of the iTunes downloads, & go to bed. Rest my aching bones & all that. =p Also, I'm seriously devastated about Skins. A whole new cast for series 5?! But the site says series 4 is available on DVD; I'm hoping they mean worldwide, but it's unlikely. As ever, I live in hope! Goodnight. =)
We finally have a functioning computer!! I've never had a mac before, but we've now got an iMac as the family computer; though I've been on it all night! (That's the "YAY!!") I'm so excited to have new music, but panicked that my iPod won't fully sync, it keeps saying: "The iPod "Alex's iPod" cannot be synced. The required file cannot be found." (That's the "Oh, crap.") It's, like, 1am, & I'm so stressed, annoyed & confused. I bought $110 worth of music, & not all of it may have synced. Oh, btw, it's not my pension being spent on Rammstein, Lady GaGa P!nk, blur & more, it's my Christmas & birthday iTunes vouchers. I have about $10 left, I think. I've been making a list of songs I want ever since our pc decided it wouldn't co-operate with iTunes. (It did this by taking 15mins to open iTunes, then crash when I clicked anything at all.) It was a very manipulative PC. lol!! Oh, the iMac has a WEBCAM!! (That's the "Oooh, cool" bit.) It has this thing called Photo Booth, & you can take pics using aforementioned webcam with various effects & backgrounds. It's awesome, but it also means I'll know how to look halfway decent in actual pics. Practice should make decent. (I'd rather perfect, but I'll never look perfect in a pic!!!) Seriously, I'm not photogenic. I may have to take my iPod to the store & see what the problem is. Must ask mum when she can take me. That is, if the iTunes updates don't fix the problem.
Woo-hoo!!
I read in the paper (well, the newspaper's site on my mobile) that 'The Simpsons' vocab has entered ours. But the "woo-hoo!" part is that I'm finally over my virus, my second in three weeks, & should receive info from my distance education teacher soon about how many 'send' exercises & reviews I must complete. I really hope I can stay in Methods this year, & graduate next year, I really don't want to get worse. I slept rather well last night, luckily. I got 4hrs' sleep without waking! Then the iMac was installed yesterday afternoon, & I spent all evening up until now, pretty much, on the iMac, buying music, making playlists & generally having as much fun as I can possibly have, being me. Also, with the thing about posture supposedly improving my pain levels; it's not. It's so much worse!! But I'm gonna keep going, to either improve, or prove my specialist wrong. I love doing that. *evil grin*
Goodnight...
Well, it's about 1.10am now, so I should check on the progress of the iTunes downloads, & go to bed. Rest my aching bones & all that. =p Also, I'm seriously devastated about Skins. A whole new cast for series 5?! But the site says series 4 is available on DVD; I'm hoping they mean worldwide, but it's unlikely. As ever, I live in hope! Goodnight. =)
Saturday, March 6, 2010
Colds.
A cold after a few hours out...
After I went shopping I managed to catch a cold/virus. I've been sick all week, with chills, a fever, sore throat, no appetite & loads of aches & pains. I did a bit of my Methods homework, but I'm finding it really difficult. I'll ask my tutor to go through it again on Monday. I figure I'll be completely exhausted for a while afterwards, but I just can't afford it. If only I'd got this bug on the holidays!
Methods & the future...
I'm finding Methods more difficult every week. I really hope I can get okay grades, but it's a struggle to just do the homework. I'm not sure how I'm meant to return to school again next year, for two subjects, but I try not to think about that. I need to get through Year 12. It's not like I got ME/CFS after high school, or after uni. Right now, I have no qualifications. That's hard to live with, especially with all my friends now at uni.
Exhaustion & stress...
I'm incredibly stressed, & that doesn't help, but it's scary to contemplate being stuck in bed & the same house for the rest of your life. I still don't sleep well. I found a letter from my GP saying that at age 11 I was complaining of getting to sleep at around 11pm - 12am & waking at 3am, staying awake for a few hours. So that's at least 8 years' worth of sleep disturbances. I can't imagine what it's done to my memory, etc. I just hope it's reversible. I don't want to get any worse... Anyway, I'm too tired to write any more, so I guess that's it. =\
After I went shopping I managed to catch a cold/virus. I've been sick all week, with chills, a fever, sore throat, no appetite & loads of aches & pains. I did a bit of my Methods homework, but I'm finding it really difficult. I'll ask my tutor to go through it again on Monday. I figure I'll be completely exhausted for a while afterwards, but I just can't afford it. If only I'd got this bug on the holidays!
Methods & the future...
I'm finding Methods more difficult every week. I really hope I can get okay grades, but it's a struggle to just do the homework. I'm not sure how I'm meant to return to school again next year, for two subjects, but I try not to think about that. I need to get through Year 12. It's not like I got ME/CFS after high school, or after uni. Right now, I have no qualifications. That's hard to live with, especially with all my friends now at uni.
Exhaustion & stress...
I'm incredibly stressed, & that doesn't help, but it's scary to contemplate being stuck in bed & the same house for the rest of your life. I still don't sleep well. I found a letter from my GP saying that at age 11 I was complaining of getting to sleep at around 11pm - 12am & waking at 3am, staying awake for a few hours. So that's at least 8 years' worth of sleep disturbances. I can't imagine what it's done to my memory, etc. I just hope it's reversible. I don't want to get any worse... Anyway, I'm too tired to write any more, so I guess that's it. =\
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