My hospital/specialist visit.
I saw my specialist on Monday, who was not of much help. I've been put on a new medication for my back spasms, but I can only take it at night. She won't help with the rest of my pain, my insomnia, or sleep pattern. Apparently it could take over a year for this sleep regime and sleep hygeine to begin to work. I really don't believe much, if anything of what doctors tell me. They've lied to me enough for me to lose faith in them completely.
I got given another dose of vitamin D supplement, it's a liquid oily thing, which tastes horrid. The last time I had it I nearly threw up in my specialist's office, she told me to stop being silly. That was last May/June. I'm meant to have it every winter now. I have many deficiencies and abnormalities, but this is the only one being taken care of!
My specialist gave me the prescriptions I needed, but dated one incorrectly, so the pharmacy couldn't fill it yesterday. Mum went to another local compounding pharmacy who have been filling my various prescriptions since I was 13, and they filled it. It just has to arrive. I'm going to try my new pain medication tonight, and see if it helps me sleep at all. I really hope it does!!!
After I saw my specialist I had to go to pathology to get my vitamin D, iron stores, TSH and more tested. I had to lie down with my legs elevated during the blood test and for 15-20mins after, as I get very faint, dizzy and light-headed with any procedure involving needles and the like.
Then the mean pathologist came in, and laughed.
So I said: "Yeah, it's hilarious, me being this sick, isn't it?" (very sarcastically)
He replies: "Oh, sorry, it's just funny seeing you upside down from this point of view."
Uh-huh. Whatever.
Last time he told me I had to watch my blood test, wasn't allowed to lie down, and it was "all in my head" that I get faint from blood tests, the sight of blood and needles, etc. Afterwards, as it was nearing 5pm, he sent me out into the corridor to wait for my father, even though I was faint, seeing stars and had ringing in my ears. I reported him!! We also reported him when I was 7. He scared the hell out of me then. He said that if I didn't drink 3L of water he'd have to stick me 10 times with a needle. (The hospital policy is a maximum of 3 attempts, unless the patient requests another nurse/pathologist.) I was already frightened of needles, but he made it 100x worse! I now know his name, so I can go to pathology and say: "Anyone at all, except ..."
That's about it for my health/doctor update! I don't expect comments, so don't worry!
Take care. xoxo
Showing posts with label specialist. Show all posts
Showing posts with label specialist. Show all posts
Wednesday, July 21, 2010
Saturday, July 10, 2010
Braces
Braces:
I got my braces on last week, on Tuesday afternoon. And it didn't hurt... For a few hours. Then it was absolutely agonising. And it still is. The orthodontist and assistants are all really nice, and they explain what they're going to do before they do it, and they warn me if something might be painful! This is all new for me, my last orthodontist thought braces were a "pain-free" procedure, but it would be hard to eat steak for the first week. She obviously never had braces, or met people with different pain thresholds!
I'm on Panadeine Forte for the pain, which, as bloody always, does almost nothing. On the upside, it means I can open my mouth enough to eat rice, but apart from coconut rice, I'm basically living off jelly, ice cream, and anything soft that doesn't require chewing. I take Mersyndol before bed and when I wake at 3am, because it's supposed to help you sleep. It didn't when I last had braces, and it isn't this time! Still, it means the Panadeine Forte will last longer, because I don't know how long I'll be in pain.
The pain is keeping me awake at night. I've been waking at 3am every single night since I got these braces, and today, I haven't got back to sleep yet. And I have to get up at 12.45pm for maths tutoring. I'm really not looking forward to it; it's hard for me to concentrate at the best of times, but when I'm in overwhelming pain, calculus is infinitely more difficult. I haven't been able to revise at all. The first week of the holidays I was too exhausted and busy, and this week I've been in too much pain and too sleep deprived. I really hope I can remember the basics of antidifferentiation and integration, I really don't want to waste my tutor's time revising. I feel guilty that I couldn't revise, and that I'm taking up my tutor's weekends every week...
I'm considering going to the hospital if the pain keeps up much longer. It isn't often that pain brings me to tears, but this is. On a daily basis. Also, decent pain relief (like morphine) helps you sleep, apparently. It didn't when I was 9, but, who knows? I just want to be pain free for one entire day!!!
Sleep routine:
I'm still going to bed each night between 10.30pm and 11.30pm, and I am generally asleep by midnight. I always wake at 3am, regardless of what time I got up the previous day, whether I napped, or anything else that's sleep-hygeine related. This week, it's been the pain waking me, but before that, it was a new pattern. I just hope it changes again soon. My younger brother goes back to school on Monday, so I'll be able to go to bed at 10.30pm every night and get to sleep sooner, because it will be quiet, finally. Mum has promised. I figure if I stick to a night time routine, the day time sleep will lessen - my need for it, that is, so eventually I can get up earlier. Some days I'm in bed until 4pm simply because I can't get up. I really need more sleep, at night, in order to do well this year, and to get back to school and Orientation. I'm trying my hardest, but my body is trying it's hardest to make sure I don't sleep! M.E. is the most confusing, frustrating and misunderstood illness!!
Reunion:
I have a one-year reunion for my high school coming up in about a fortnight. I've pretty much got my outfit, but I need a bag, as mentioned in a previous post, and I might get a new pair of Chucks. One day I'll be able to fit into adult's shoes. I'd wear flats, but I can only fit into one kind, that is sold at one store in one season, and last time I went, they had a size 2 (I've grown out of mine) and a size 6. Not helpful. But at least I'm relatively cheap to buy for when it comes to clothing; I fit kid's shoes a lot of the time, especially if they're runners.
I'm hoping the pain will subside enough for me to go and look for a bag and maybe get some Chucks. I know my size, and the colours I like, so it's not too energy-consuming to buy them. I'm excited about the reunion; I haven't really seen anyone since my November exams last year, and then it was only a few girls. If I'm still in pain by the reunion, which I shouldn't be, I'll eat some rice beforehand, because I doubt they'll be serving jelly, lol!!
Unfortunately, I'm seeing my specialist earlier that week, so I'll be tired from the constant battle for meds or a treatment that isn't SSRIs. I just refuse SSRIs and Melatonin; they don't work, they never have, and they won't now!
Thanks for reading, and I love reading your comments and seeing your feedback. LMK if the last post was too long, okay?
I got my braces on last week, on Tuesday afternoon. And it didn't hurt... For a few hours. Then it was absolutely agonising. And it still is. The orthodontist and assistants are all really nice, and they explain what they're going to do before they do it, and they warn me if something might be painful! This is all new for me, my last orthodontist thought braces were a "pain-free" procedure, but it would be hard to eat steak for the first week. She obviously never had braces, or met people with different pain thresholds!
I'm on Panadeine Forte for the pain, which, as bloody always, does almost nothing. On the upside, it means I can open my mouth enough to eat rice, but apart from coconut rice, I'm basically living off jelly, ice cream, and anything soft that doesn't require chewing. I take Mersyndol before bed and when I wake at 3am, because it's supposed to help you sleep. It didn't when I last had braces, and it isn't this time! Still, it means the Panadeine Forte will last longer, because I don't know how long I'll be in pain.
The pain is keeping me awake at night. I've been waking at 3am every single night since I got these braces, and today, I haven't got back to sleep yet. And I have to get up at 12.45pm for maths tutoring. I'm really not looking forward to it; it's hard for me to concentrate at the best of times, but when I'm in overwhelming pain, calculus is infinitely more difficult. I haven't been able to revise at all. The first week of the holidays I was too exhausted and busy, and this week I've been in too much pain and too sleep deprived. I really hope I can remember the basics of antidifferentiation and integration, I really don't want to waste my tutor's time revising. I feel guilty that I couldn't revise, and that I'm taking up my tutor's weekends every week...
I'm considering going to the hospital if the pain keeps up much longer. It isn't often that pain brings me to tears, but this is. On a daily basis. Also, decent pain relief (like morphine) helps you sleep, apparently. It didn't when I was 9, but, who knows? I just want to be pain free for one entire day!!!
Sleep routine:
I'm still going to bed each night between 10.30pm and 11.30pm, and I am generally asleep by midnight. I always wake at 3am, regardless of what time I got up the previous day, whether I napped, or anything else that's sleep-hygeine related. This week, it's been the pain waking me, but before that, it was a new pattern. I just hope it changes again soon. My younger brother goes back to school on Monday, so I'll be able to go to bed at 10.30pm every night and get to sleep sooner, because it will be quiet, finally. Mum has promised. I figure if I stick to a night time routine, the day time sleep will lessen - my need for it, that is, so eventually I can get up earlier. Some days I'm in bed until 4pm simply because I can't get up. I really need more sleep, at night, in order to do well this year, and to get back to school and Orientation. I'm trying my hardest, but my body is trying it's hardest to make sure I don't sleep! M.E. is the most confusing, frustrating and misunderstood illness!!
Reunion:
I have a one-year reunion for my high school coming up in about a fortnight. I've pretty much got my outfit, but I need a bag, as mentioned in a previous post, and I might get a new pair of Chucks. One day I'll be able to fit into adult's shoes. I'd wear flats, but I can only fit into one kind, that is sold at one store in one season, and last time I went, they had a size 2 (I've grown out of mine) and a size 6. Not helpful. But at least I'm relatively cheap to buy for when it comes to clothing; I fit kid's shoes a lot of the time, especially if they're runners.
I'm hoping the pain will subside enough for me to go and look for a bag and maybe get some Chucks. I know my size, and the colours I like, so it's not too energy-consuming to buy them. I'm excited about the reunion; I haven't really seen anyone since my November exams last year, and then it was only a few girls. If I'm still in pain by the reunion, which I shouldn't be, I'll eat some rice beforehand, because I doubt they'll be serving jelly, lol!!
Unfortunately, I'm seeing my specialist earlier that week, so I'll be tired from the constant battle for meds or a treatment that isn't SSRIs. I just refuse SSRIs and Melatonin; they don't work, they never have, and they won't now!
Thanks for reading, and I love reading your comments and seeing your feedback. LMK if the last post was too long, okay?
Tuesday, June 1, 2010
Doctor's appointments & a long-kept secret
Doctor's appointments:
I never liked going to the doctor, even before I was diagnosed with M.E. But now, I absolutely hate it. There's the waiting room, for starters. At the G.P's, it's always so noisy, plus there's a tv on in the background showing inane daytime shows, or children's programs, depending on the time. And the people. I'm sure it's partially my sensitivity to stimuli, but the people are so noisy!! Some even shout, because they can't hear well. It's obviously not their fault, I'm just trying to give examples of the different types of noise. These noises bounce around inside my head ad nauseam, and I develop a headache and nausea after about 10mins in the waiting room. I'm always told my G.P. is running "on time" but, really, no one wants to admit that 99% of the time, there's a 30 minute wait. So that's 30 minutes of hell, and I haven't even seen my G.P. yet!
When I get in to see my G.P., things are generally fine. My G.P. is nice and understanding, but is reluctant to do much, as everyone says my specialist is practically God when it comes to M.E. I can tell you, she isn't. If she was, she would've helped me improve, not offered me Melatonin and AD's from the age of 13, to no effect. She still keeps asking if I want to try another SSRI! I hate the side effects, but worst of all, they never work!
When I see my specialist, I have to take a written list of my worst/newest symptoms and all the medications I'm on, because the records aren't electronic. They're one huge paper file bursting at the seams. And my specialist can never remember what she's prescribed me, at what dose, or when. I'm the one with the memory problems, and I'M meant to remember every time?! Then there's the requisite fight to try new treatments. The only one she's accepted was LDN. At the dose she put me on, it was just plain Naltrexone, with the added bonus of zillions of side effects. It's exhausting seeing any doctor, starting from getting up and dressing to fighting for medications like Ondansetron so I can eat and drink.
Good news!
My specialist retracted her order to all G.P's to "never prescribe anything to Alex, leave it all up to me." That was a nice idea, except for the part where she goes overseas with no warning, leaving me with no prescriptions, so I can't study, sit exams or go to school! This happened with my Year 11 exams. I was too sick to sit them, so I was passed based on my SACs and mid-year exams. I'm glad my real school is so accomodating. (By that, I mean, not distance education. They're okay, but my school is more on top of things and organised.)
Anyway, my specialist gave permission to my G.P. to prescribe most of the meds I'm on. And Ondansetron is no longer a problem! I just got another script for 10 wafers from my G.P. last week! I'm so happy, now it means I'll be able to go out with a friend to see a movie in July!! I've known this friend since I was a baby (well, our parents knew each other) but she's always there for me, and hospitals don't weird her out. Which is so nice. Basically, she's obsessed with Twilight, and I thought I'd see it with her. (I've never seen it, I don't like the look of it, but anything to get out of the house and see a friend! It's also a fundraiser, so other chronically ill adolescents will be there!) It also makes study and tutoring easier if I haven't slept much. So that's a weight off my mind.
Insomnia...
As you can see from the time stamp, it's quite late/early, depending on how you look at it! But I managed to sleep somewhere between 1am and 3am. So I'm working with some sleep. My sleep "pattern" has changed again: I go to bed between 11.30pm and 1am, wake every hour, then finally wake at 6am/7am and can't sleep again until midday. It may sound manageable, but it takes me an hour+ to get to sleep, so most nights I've had 4hrs sleep, or 5hrs broken sleep. My body can't function on such little sleep anymore, so there's no point in me getting up; I've tried. I just get a terrible headache, feel dizzy/sick and must promptly retreat to bed! I hope this will change soon.
I've stopped "clock watching" as I know it's detrimental to sleep, but so many sleep clinicians told me to keep a sleep diary. And you have to "clock watch" to keep one. (You record when you eat, have caffeine, take your meds, go to bed, sleep, wake, and get up.) I hated it, but after so many years of filling them in, you get used to it.
The reason I'm so desperate to be able to sleep, virtually uninterrupted between 11pm/midnight and 6.45am/7am is that I need to be able to function for school days that start at 8.30am. And that's not possible at the moment.
I want to return to a real school more that anything, because they handle the forms for everything, and ensure I receive my work and have it in on time. Which is the polar opposite of distance education, in my experience. It's nice to be able to work whenever you want, but losing all social contact and support just isn't worth it.
One day at a time.
I'm trying to learn to take my life one day at a time. But I've never done it before, so I'm finding it really difficult. Particularly when I'm awake late at night, and I can't stop thinking about my life: "What happens if I can't graduate from high school or go to uni?" "I'm never going to be able to support myself, and a pension won't even cover costs of living." "I just want to be normal. I want doctors to admit they don't know. I want apologies for the hell they've put me through." ... Those are some of my thoughts at about 3am, or whenever I start worrying. My whole life has been about my future: getting a great score in Year 12, going to the best and closest uni to study Arts, majoring in Latin or German, then studying Law.
A secret:
I need routine, and I need structure more than the average person. This is due to my ASD, specifically Asperger's Syndrome. This is my secret. I've got much better at social interactions, etc. but I still have a compulsive need to know exactly what is happening, and when. If my routine changes, I panic. Please don't stereotype me. You wouldn't be able to pick it if you met me. I just seem shy. The reason I've improved? My mum. She'd go through role plays of how to act in different situations, acclimatised me to sand and the colour white, (I used to tantrum whenever I saw/touched these things) and taught me how to cope with crowds, loud noises, and physical contact. I've overcome most of these things, but I still hate sand. Although, now, I probably just look like an (awfully pale) teenage girl who hates getting sand on her clothes. (I'm too sick to swim when we go to the beach.)
Does anyone watch "The Big Bang Theory"? I think Sheldon displays many traits of high functioning autism (HFA) or Asperger's Syndrome, part of the Autism Spectrum Disorder. (ASD) I'm definitely not that weird, but I am constantly angry. I talked to my psychologist about it, and, as always, doctors/psychologists don't believe me when I say I have Asperger's Syndrome. They do a double-take, and say "Who diagnosed you?" It was an expert in the area when I was 2 or 3. I don't tell many people because I don't want to be thought of as a freak. But I just got sick of keeping it quiet.
If people don't like me as I am, tough.
Anger...
The anger is a real problem, and it's probably because I hold onto anger from doctors who denied me proper treatment when I was 12, or made me miss my Year 11 exams, or changed my sleep routine permanently when I was 14. All of this anger ends up being directed at my family. I just never feel calm; I'm constantly exhausted, and angry at the world and everything in it! I hope I'm able to calm down soon. We're starting family therapy todat, and I think that will help with the constant fights between me and my younger brother. We fight over everything, because basically everything makes me sicker or makes my symptoms worse! And it's wearing my mum out.
Great, another possible M.E. case in the family?!
I hope my brother's post-viral malaise doesn't turn into M.E. He insists on keeping up with footy training 3 nights a week, plus a match every weekend, and school sport, and P.E.! I try to explain he could end up like me if he doesn't take it easy and pace himself (something I was never told about) but he is in denial. He thinks he'll never get sick. He's got a G.P. appointment today. I hope they test for EBV; they give you a month of no activity after a diagnosis of it now! I was sent back to school as soon as I stopped showing symptoms. Grr.
Goodnight!
Seing as it's after 4.30am, I'd better try to sleep again; goodnight everyone, and I hope you're as well as you can be!
I never liked going to the doctor, even before I was diagnosed with M.E. But now, I absolutely hate it. There's the waiting room, for starters. At the G.P's, it's always so noisy, plus there's a tv on in the background showing inane daytime shows, or children's programs, depending on the time. And the people. I'm sure it's partially my sensitivity to stimuli, but the people are so noisy!! Some even shout, because they can't hear well. It's obviously not their fault, I'm just trying to give examples of the different types of noise. These noises bounce around inside my head ad nauseam, and I develop a headache and nausea after about 10mins in the waiting room. I'm always told my G.P. is running "on time" but, really, no one wants to admit that 99% of the time, there's a 30 minute wait. So that's 30 minutes of hell, and I haven't even seen my G.P. yet!
When I get in to see my G.P., things are generally fine. My G.P. is nice and understanding, but is reluctant to do much, as everyone says my specialist is practically God when it comes to M.E. I can tell you, she isn't. If she was, she would've helped me improve, not offered me Melatonin and AD's from the age of 13, to no effect. She still keeps asking if I want to try another SSRI! I hate the side effects, but worst of all, they never work!
When I see my specialist, I have to take a written list of my worst/newest symptoms and all the medications I'm on, because the records aren't electronic. They're one huge paper file bursting at the seams. And my specialist can never remember what she's prescribed me, at what dose, or when. I'm the one with the memory problems, and I'M meant to remember every time?! Then there's the requisite fight to try new treatments. The only one she's accepted was LDN. At the dose she put me on, it was just plain Naltrexone, with the added bonus of zillions of side effects. It's exhausting seeing any doctor, starting from getting up and dressing to fighting for medications like Ondansetron so I can eat and drink.
Good news!
My specialist retracted her order to all G.P's to "never prescribe anything to Alex, leave it all up to me." That was a nice idea, except for the part where she goes overseas with no warning, leaving me with no prescriptions, so I can't study, sit exams or go to school! This happened with my Year 11 exams. I was too sick to sit them, so I was passed based on my SACs and mid-year exams. I'm glad my real school is so accomodating. (By that, I mean, not distance education. They're okay, but my school is more on top of things and organised.)
Anyway, my specialist gave permission to my G.P. to prescribe most of the meds I'm on. And Ondansetron is no longer a problem! I just got another script for 10 wafers from my G.P. last week! I'm so happy, now it means I'll be able to go out with a friend to see a movie in July!! I've known this friend since I was a baby (well, our parents knew each other) but she's always there for me, and hospitals don't weird her out. Which is so nice. Basically, she's obsessed with Twilight, and I thought I'd see it with her. (I've never seen it, I don't like the look of it, but anything to get out of the house and see a friend! It's also a fundraiser, so other chronically ill adolescents will be there!) It also makes study and tutoring easier if I haven't slept much. So that's a weight off my mind.
Insomnia...
As you can see from the time stamp, it's quite late/early, depending on how you look at it! But I managed to sleep somewhere between 1am and 3am. So I'm working with some sleep. My sleep "pattern" has changed again: I go to bed between 11.30pm and 1am, wake every hour, then finally wake at 6am/7am and can't sleep again until midday. It may sound manageable, but it takes me an hour+ to get to sleep, so most nights I've had 4hrs sleep, or 5hrs broken sleep. My body can't function on such little sleep anymore, so there's no point in me getting up; I've tried. I just get a terrible headache, feel dizzy/sick and must promptly retreat to bed! I hope this will change soon.
I've stopped "clock watching" as I know it's detrimental to sleep, but so many sleep clinicians told me to keep a sleep diary. And you have to "clock watch" to keep one. (You record when you eat, have caffeine, take your meds, go to bed, sleep, wake, and get up.) I hated it, but after so many years of filling them in, you get used to it.
The reason I'm so desperate to be able to sleep, virtually uninterrupted between 11pm/midnight and 6.45am/7am is that I need to be able to function for school days that start at 8.30am. And that's not possible at the moment.
I want to return to a real school more that anything, because they handle the forms for everything, and ensure I receive my work and have it in on time. Which is the polar opposite of distance education, in my experience. It's nice to be able to work whenever you want, but losing all social contact and support just isn't worth it.
One day at a time.
I'm trying to learn to take my life one day at a time. But I've never done it before, so I'm finding it really difficult. Particularly when I'm awake late at night, and I can't stop thinking about my life: "What happens if I can't graduate from high school or go to uni?" "I'm never going to be able to support myself, and a pension won't even cover costs of living." "I just want to be normal. I want doctors to admit they don't know. I want apologies for the hell they've put me through." ... Those are some of my thoughts at about 3am, or whenever I start worrying. My whole life has been about my future: getting a great score in Year 12, going to the best and closest uni to study Arts, majoring in Latin or German, then studying Law.
A secret:
I need routine, and I need structure more than the average person. This is due to my ASD, specifically Asperger's Syndrome. This is my secret. I've got much better at social interactions, etc. but I still have a compulsive need to know exactly what is happening, and when. If my routine changes, I panic. Please don't stereotype me. You wouldn't be able to pick it if you met me. I just seem shy. The reason I've improved? My mum. She'd go through role plays of how to act in different situations, acclimatised me to sand and the colour white, (I used to tantrum whenever I saw/touched these things) and taught me how to cope with crowds, loud noises, and physical contact. I've overcome most of these things, but I still hate sand. Although, now, I probably just look like an (awfully pale) teenage girl who hates getting sand on her clothes. (I'm too sick to swim when we go to the beach.)
Does anyone watch "The Big Bang Theory"? I think Sheldon displays many traits of high functioning autism (HFA) or Asperger's Syndrome, part of the Autism Spectrum Disorder. (ASD) I'm definitely not that weird, but I am constantly angry. I talked to my psychologist about it, and, as always, doctors/psychologists don't believe me when I say I have Asperger's Syndrome. They do a double-take, and say "Who diagnosed you?" It was an expert in the area when I was 2 or 3. I don't tell many people because I don't want to be thought of as a freak. But I just got sick of keeping it quiet.
If people don't like me as I am, tough.
Anger...
The anger is a real problem, and it's probably because I hold onto anger from doctors who denied me proper treatment when I was 12, or made me miss my Year 11 exams, or changed my sleep routine permanently when I was 14. All of this anger ends up being directed at my family. I just never feel calm; I'm constantly exhausted, and angry at the world and everything in it! I hope I'm able to calm down soon. We're starting family therapy todat, and I think that will help with the constant fights between me and my younger brother. We fight over everything, because basically everything makes me sicker or makes my symptoms worse! And it's wearing my mum out.
Great, another possible M.E. case in the family?!
I hope my brother's post-viral malaise doesn't turn into M.E. He insists on keeping up with footy training 3 nights a week, plus a match every weekend, and school sport, and P.E.! I try to explain he could end up like me if he doesn't take it easy and pace himself (something I was never told about) but he is in denial. He thinks he'll never get sick. He's got a G.P. appointment today. I hope they test for EBV; they give you a month of no activity after a diagnosis of it now! I was sent back to school as soon as I stopped showing symptoms. Grr.
Goodnight!
Seing as it's after 4.30am, I'd better try to sleep again; goodnight everyone, and I hope you're as well as you can be!
Sunday, March 21, 2010
'Alice In Wonderland'
'Alice In Wonderland'
Yesterday I finally got out of the house, & went to see 'Alice In Wonderland' with a friend I met during my August admission to hospital last year. I thought it was a great film & the special effects were amazing. Johnny Depp was brilliant as the Mad Hatter... He does mad so well! I thought the actress who played Alice did a really good job, too, although her face was a little emotionless or blank at times. I didn't see it in 3D - it gives my mum & younger brother migraines, & made me sick the last time I saw anything in 3D. It was amazing to go out with someone around my age, instead of being stuck inside, or only going out to get clothes with my mum. Hopefully I can do it again sometime soon, I know that today I'm really achey & tired.
19 today...
Today was my 19th birthday. To be honest, I don't feel any older, but I think that might be because I haven't had a chance to be a teenager. My life pretty much stopped at 13. I can't even get my learner's permit; because of the years of sleep problems/deprivation, I could fall asleep at the wheel. Then there's the part where I can't focus on Methods some days, never mind a road with multiple distractions, plus learning to drive. I think if you wait until you're 21 to try for your learner's, the whole process of getting your license is fast-tracked considerably. So I might just do that, unless I magically improve. This has been my worst birthday... ever. The last time I was this sick was when I was 14, bed-bound or hospitalised. All my friends are at uni, & I'm stuck here, doing distance education. Things suck at home, too. (I'm not going to talk about it here.) ... I don't want to get any older. There's no point. I just get older & have nothing to show for it. I've really had it with ME/CFS. I never thought I'd get this bad, again.
Presents...
I'd asked for it not to be a birthday this year, so no presents, or cake, etc. But my mum went ahead & got me an iTunes voucher, 2 really pretty pill containers (they have flowers on them, each is a different shade of blue) & a voucher for my local shopping centre, so I can spend it at any store! Oh, & a Kinder Surprise egg. I used to love those when I was little!! My brother got me an iTunes voucher, too, & they both wrote really lovely things in the cards. My father couldn't have forgotten it was my birthday, but took a sheet of A4 paper, folded it in half, wrote 'Happy Birthday' on the front, & said he knew I'd get better, because I was so determined, & that he was sorry he couldn't help. I wasn't annoyed about the fact that he could've got me a card, or a present, (I asked for a happy, argument free day, which didn't happen) it was that he didn't realise that he can help. By reducing the stress. I say it every week. I guess you can't get through to some people. My half-brother from Germany also got me a present. It's a German picture-story book. I will find the energy to figure out what it says; translating the birthday card was tiring enough! (It's got a lot of words...)
Doctor's appointment
My specialist thinks things will improve dramatically as soon as I stop stressing & stop having panic attacks. (Should that read: "being put under so much stress"?) She also thinks that my back pain will be fixed by me sitting up straight. Which is BS, although I'm trying it, purely to prove her wrong, AGAIN. That's what she said when I was 14, so I improved my posture by 15, but when I get worse, my posture gets worse. I literally do not have the strength to hold myself upright. I've exhausted all my options for pain relief, & my scoliosis is still "mild"... But I just wish someone would listen when I say "The only thing that stopped this pain was an injection of morphine when I was 9 years old. The pain disappeared for months, only to reappear the following year, & worsen as my ME/CFS worsened. Uninterrupted sleep is the only thing that helps." She laughed when I explained I was worried about being sick & dependent on the disability pension in 20 years' time. It's not funny, but she thinks it's ridiculous I should worry about my future. If I've seen all the specialists, tried all the regimes, & nothing has helped, not to mention the fact that my specialist admits she doesn't know what to do anymore, why shouldn't I worry? I'm not getting better. I wanted a life, I wanted to go to uni & study Law. Now I might just be stuck in this house forever.
Finally...
I guess that's it. A pretty depressing post, but there isn't much to my life anymore. It all gets consumed by ME/CFS. I haven't even finished last week's Methods homework, & my tutor might assign me more via Facebook to make up for the fact we couldn't have a session this weekend. I might check if Skins has loaded yet. I think it's the series final.
Yesterday I finally got out of the house, & went to see 'Alice In Wonderland' with a friend I met during my August admission to hospital last year. I thought it was a great film & the special effects were amazing. Johnny Depp was brilliant as the Mad Hatter... He does mad so well! I thought the actress who played Alice did a really good job, too, although her face was a little emotionless or blank at times. I didn't see it in 3D - it gives my mum & younger brother migraines, & made me sick the last time I saw anything in 3D. It was amazing to go out with someone around my age, instead of being stuck inside, or only going out to get clothes with my mum. Hopefully I can do it again sometime soon, I know that today I'm really achey & tired.
19 today...
Today was my 19th birthday. To be honest, I don't feel any older, but I think that might be because I haven't had a chance to be a teenager. My life pretty much stopped at 13. I can't even get my learner's permit; because of the years of sleep problems/deprivation, I could fall asleep at the wheel. Then there's the part where I can't focus on Methods some days, never mind a road with multiple distractions, plus learning to drive. I think if you wait until you're 21 to try for your learner's, the whole process of getting your license is fast-tracked considerably. So I might just do that, unless I magically improve. This has been my worst birthday... ever. The last time I was this sick was when I was 14, bed-bound or hospitalised. All my friends are at uni, & I'm stuck here, doing distance education. Things suck at home, too. (I'm not going to talk about it here.) ... I don't want to get any older. There's no point. I just get older & have nothing to show for it. I've really had it with ME/CFS. I never thought I'd get this bad, again.
Presents...
I'd asked for it not to be a birthday this year, so no presents, or cake, etc. But my mum went ahead & got me an iTunes voucher, 2 really pretty pill containers (they have flowers on them, each is a different shade of blue) & a voucher for my local shopping centre, so I can spend it at any store! Oh, & a Kinder Surprise egg. I used to love those when I was little!! My brother got me an iTunes voucher, too, & they both wrote really lovely things in the cards. My father couldn't have forgotten it was my birthday, but took a sheet of A4 paper, folded it in half, wrote 'Happy Birthday' on the front, & said he knew I'd get better, because I was so determined, & that he was sorry he couldn't help. I wasn't annoyed about the fact that he could've got me a card, or a present, (I asked for a happy, argument free day, which didn't happen) it was that he didn't realise that he can help. By reducing the stress. I say it every week. I guess you can't get through to some people. My half-brother from Germany also got me a present. It's a German picture-story book. I will find the energy to figure out what it says; translating the birthday card was tiring enough! (It's got a lot of words...)
Doctor's appointment
My specialist thinks things will improve dramatically as soon as I stop stressing & stop having panic attacks. (Should that read: "being put under so much stress"?) She also thinks that my back pain will be fixed by me sitting up straight. Which is BS, although I'm trying it, purely to prove her wrong, AGAIN. That's what she said when I was 14, so I improved my posture by 15, but when I get worse, my posture gets worse. I literally do not have the strength to hold myself upright. I've exhausted all my options for pain relief, & my scoliosis is still "mild"... But I just wish someone would listen when I say "The only thing that stopped this pain was an injection of morphine when I was 9 years old. The pain disappeared for months, only to reappear the following year, & worsen as my ME/CFS worsened. Uninterrupted sleep is the only thing that helps." She laughed when I explained I was worried about being sick & dependent on the disability pension in 20 years' time. It's not funny, but she thinks it's ridiculous I should worry about my future. If I've seen all the specialists, tried all the regimes, & nothing has helped, not to mention the fact that my specialist admits she doesn't know what to do anymore, why shouldn't I worry? I'm not getting better. I wanted a life, I wanted to go to uni & study Law. Now I might just be stuck in this house forever.
Finally...
I guess that's it. A pretty depressing post, but there isn't much to my life anymore. It all gets consumed by ME/CFS. I haven't even finished last week's Methods homework, & my tutor might assign me more via Facebook to make up for the fact we couldn't have a session this weekend. I might check if Skins has loaded yet. I think it's the series final.
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