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bittersweet and evocative
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 Posted: Thu Jul 30, 2009 5:10 pm
Hello!
Sorry for the delays in replying - school and pain have been wearing me down quite a bit. I don't have much time to write now so I'll make this brief.
1)I'm coping, but barely. Pain is just getting too much, and to top it off, I had a turn the other day at school, and bruised all down my back, tail bone, and broke two fingers. Making it quite hard to type! >< I'm not in hospital currently but am getting ready to head up to Auckland to a pain clinic there. It's a stretch, but I hope that they may know something I haven't already tried to help things improve, or even just to stabilise.
2) Feelings wise, I'm not too certain, really. I keep going up and down in dramatic changes, between happy and then I feel like I'm in a dark hole, unable to reach anyone else. Do you ever get like that? I'm trying really hard to get on with things and just enjoy myself, but at the moment, the thought of being in pain for the rest of my life is something I can't accept.
3) I agree with your response to the acupuncture suggestion. The times I've had it, it's only given me more pain than when I started. After my lumbar puncture experiences, I can completely understand why you objected to the treatment of putting those needles into your spine. It think I would have said the same! I can't imagine what it's like for you to know that you won't be going back to work - is there any way you could continue doing something from home? Sorry, I don't know what you used to do, so if it was something incredibly physical, I'm sorry if I offended you with my suggestion. 'Quality of life' is something that really annoys me. I mean, we're in constant agonising pain, and people wonder why we may be unhappy. In order for me to be referred to this new pain clinic, I had to fill in ten million forms, all of which I've done many times before. And NOTHING has changed since then. So their inability to look at my file, is highly frustrating. Every time I am forced to record down how my conditions have affected my life only makes me feel worse, and less hopeful, seeing that there hasn't been improvements. Really, could they be any less sensitive if they came up to me and asked if anything at all was going right in my life?
Anyway, I have to go and finish some of my English homework before I go and tutor for the afternoon. Just what I feel like doing...lol sorry for the rants!! I hope you're having a good day, and hopefully we'll chat soon!!
Oh, and Kira,I think it's so cool that you're reading the posts in this thread!! That's exactly what I hoped would happen - so that others could start learning what it really means to have chronic pain and to understand how conditions can affect every aspect of life. I know that Madralyn, would be so grateful if she knew what an effort you were going to to further understand what she's going through. And your presence here is support already!! Just having another person posting with me, Boldie, Madralyn, and our other fellow posters, is HUGE. Welcome, once again!! xx
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Posted: Thu Jul 30, 2009 5:57 pm
HOLA PEOPLE!!!! *Waves Hi*
I'm back from the future!!!!! =)
(im serious! when i left i did some serious time traveling! i';m barely getting over the jetlag and i've been home for almsot a week)
i hope every one is doing well. =)
bittersweet and evocative, i'll pray they find something to help you! =)
oh man there's so much to catch up here on gaia.
leaving the country gave me a lot of time to think, and be myself for once and not have to worry anything.
it kinda made me realize waht i want to do in life. it's weird waht two weeks in another country can do to you.
If any one gets the oppurtunity to travel with the organization People To People do it, its a greate way to travel the world.
I went to china and on the streets in beijing i saw a man with no hands, it's hard to imagine but it gave me shock for 2 days, begging for money. no one would look or help him.
idk but it was amazing, i don't want to sound like i'm bragging. so i'll end here.
how's every one? =)
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Posted: Fri Jul 31, 2009 4:43 pm
Ailsa, I don't know what it's like to have RSD, but I can imagine it's extremely painful. Everyday, every waking second.
I read on this website the 4 main symptoms of RSD:Quote: There are FOUR Main Symptoms/Criteria of CRPS: 1) Constant chronic burning pain (includes allodynia - extreme sensitivity to touch, sound, and vibration) 2) Inflammation (this can affect the appearance of the skin, bruising, mottling, etc.) 3) Spasms-in blood vessels and muscles of the extremities 4) Insomnia/Emotional Disturbance (includes the major changes to the limbic system such as short-term memory problems, concentration difficulties, etc.)
I know, Ailsa, about that hole you were talking about. It is actually comforting to me some days, because I don't talk to anyone, I just want to be left alone. I thought, and may still think, it's called depression. Yeah, and I will never be able to work again. I was a manager over the frozen dept. @ Wal-Mart Neighborhood Market, and it was a very physical job. Most days, I would come home arounf 2:30 (I worked 5-2), and by 3:30, I was out for the night. Just completely exhausted. My husband was frustrated by that, but you gotta look if you start work @ 5 am what time does a person actually wake up? See, I don't think he thought about that. It's not that I'm depressed about losing my position, because as of July 19th, I did. It was 6 months from the time I left. I've been at that job just short of 5 years. That in itself was an
accomplishment for me, because I started in 2004 and had this pain ever since. Actually the pain started coming 2 months prior to me being hired on, so the entire 5 years or so--at least 4 of them, I worked with the pain. I'm sure by seeing my hunched back and walking very slow, gave my managers the idea that yes, she's hurting, better send her home again early. They were great people there. Very understanding, and I socialized every day with new people. (customers) That's something I miss now, because I don't interact with that many people any more. But that "hole" gets very lonely sometimes, too. Don't ever worry about offending me. You can't. Not when you're speaking of my job, or my pain. nope. It's nothing that you said, that I haven't thought of before. I can't work period. Even at a desk job, because the sitting gets to me. I have to keep walking around alittle and can't sit in one place for any length of time. Or stand, or stoop, or bend, or pivot, or anything.
New subject PLEASE !!!!!!!!!!!!! grrrrrrrrrrrrrrrrr
I think it's absolutely wonderful that I and you have been seeing more members in this thread and actually reading what we've been saying. It's terrible to have to say this, but AS 8b, AND Kira, if you see Madralyn in pain all the time, imagine the rest of us. It's the same. Honest. Just maybe in different forms, or different ways of pain. I don't get the burning feeling, however, I get sharp stabs. It's really a catch 22. Well, I'm going to end this, but thank you to every one out there who is lending "us" their support. God bless.........
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Posted: Fri Jul 31, 2009 4:56 pm
By the way.... I guess I just wanted to add, that regardless of ANYONE'S pain, whether it's Madralyn, Ailsa, or me, or anyone else, isn't it funny that while we're still going through all this pain EVERYDAY, we are generally STILL very pleasant to people? I mean, we may be going through depression or dark holes, severe pain, or can barely walk, but yet we're still ALWAYS pleasant to other people. THAT'S what this is all about. Just people understanding, giving us hope and support, and in return, we hope to display a positive outlook and smile through the pain. It's not meant to sound like YOU-HOO, LOOK AT US, WE'RE SMILING THROUGH OUR PAIN.....!!!!!!!! but it's because you or you or you or you took 3 seconds and stopped and asked us how we're doing today. And if anything else, I want to say on behalf of the "chronic pain people", THANK YOU to those who DO take those 3 seconds to ask us. To really listen, and see the pain through our eyes and to reach out and hold that person's hand. Gawd! You just don't KNOW what that means to us. Okay,... Now I AM going to go, for fear of crying over my keyboard. THANK YOU!!!!!!!!!!!!!!! 
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Kira-fightingdreamer Crew
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Posted: Sat Aug 01, 2009 7:00 pm
Ah, not really sure what to say. I just hope that today is one of the better days, for everyone... Anyway. I don't really know about all of you. I know that this guild is a nice source of inspiration and personally, this thread here is why I think I'm starting to come back on Gaia more. But anyway, before I get completely off topic, I tend to find motivational inspiration from music. Uh... This song here has personally been getting me through my own set of issues here in my life but at the same time it made me think of you all, Madralyn, Boldie, Ailsa (name. if misspelled. I'm sooo sorry..). So.. If I properly do the link here, I hope you guys will click on it. And.. not be insulted or anything, because.. it really is a nice song. Ahh... I apologize ahead of time if it does insult anyone or.. if you just plain hate it because it's not your taste of music. HERE
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Posted: Mon Aug 03, 2009 9:04 am
I hope every one isw doing great.
just on quickly then on my way to find a job. ahahha
have a good day and hope there's no pain/
much love.
as8b
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bittersweet and evocative
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Posted: Tue Aug 04, 2009 1:12 am
Boldie, unfortunately for myself and other RSD sufferers, those symptoms are all too real and they never give us a moment's break. For me, my leg physically kicks out all the time and I get the most horrified looks from those around me. I've managed to kick a few teachers, and even when I explain that I have no control over it, and that I can't even tell when it's about to happen, they think I've done it purposely to be funny. Granted, my friends do find it funny, but for me, it's just embarrassing and draws more unwanted attention towards me and my weird medical conditions. The majority of my year group know me by one of the following two names: coma girl, or seizure girl. Not Ailsa. Never Ailsa.
I'm sorry to hear that you won't be able to work again. I think that school is partially what keeps me sane. Without the distraction of work and having to do what every other teenage girl in my neighbourhood does, I think I would have been driven off the edge before now. I hope that God fills your heart and mind with hope and love, so that you can make it through each day without being bored senseless from not being able to work. I think this is where the internet comes in! I find it so hard to deal with things at the moment, because I'm not sleeping, and each hour that I'm awake, leaves me with less spoons to deal with the new increase of pain. It's a horrid cycle that I can't seem to escape from.
You know the hole I'm referring about? *sighs* I'm not alone. I hate depression. I think it's hard for a teenager too because there are two reactions you get from people: either that every teenager nowadays claim they are depressed and none of them actually ARE or you get the *backs away slowly* oh right, well, ummm I've got to go. If it wasn't hard enough battling with depression in itself, you have to deal with people's rude and insensitive reactions. I understand that for some people who aren't as well versed in what it's like to live with constant pain, and what it's like to wish most mornings that you hadn't woken up, the word depression can seem uncomfortable, but I just wish they could hide their distaste at least while I'm still in front of them. Even teachers do it, if I happen to mention that I'm off to my psychiatrist appointment or that I'm on anti-depressants. It sickens me the way people change the way they treat me and speak to me, as if the fact I'm depressed also means that I'm a different person, and slightly slow intellectually. And people wonder some days WHY I'm depressed.
Ok, I'm sorry for such a negative comment! I'll try and be more upbeat next time. Before I go a few more comments to make:
Kira: That song was lovely. I really liked it!! Thank you for posting it here. I find songs really help on bad days and that's been added to my emergency playlist. So thank you very much, and yes, you spelt my name right ><
as8b: As you could probably tell from the rest of this comment, today's pain is not great, but thank you for your thoughts and love! It has in fact made the pain less noticeable so I really thank you for that. I hope that you're job hunting went well!!
Boldie (again!): I need to second your thanks. It REALLY does mean so SO much that people are taking the time to read these posts here and trying to understand what it's like to be us. I agree, that it's slightly amusing that we all seem to be so pleasant and cheerful in our comments, and it's only when you read further that you see the pain and tears through our words. I try very hard to put up my positive face when talking anywhere because I think it's important that others see that it IS possible to live with chronic illnesses and still be happy, but I do think it's just as important as those same people realise that it's not always like that. That not every day it's possible to put up that front, and appear happy. Some days it's too much to even smile. So I just wanted to say a big thanks to those who are taking the time to read what we write here - it's such a pleasure being able to speak to each and every one of you, whether you be a pain sufferer yourself, an acquaintance of someone with pain, or purely interested. God bless you all xx
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Posted: Tue Aug 04, 2009 5:33 am
Thank you Ailsa for those wonderful words. Just like you, today I woke up at 4:15 a.m. because I was awoken by the pain just piercing through. No matter what position I use, the pain never subsided, so I got up. I wanted to post that song here, if that's okay with everyone else. Those are beautiful words to that song.... "Lift Me Up" by Kate Voegele...that Kira let us hear in two posts up....btw, Thank you Kira!!
This road is anything but simple
Twisted like a riddle
I've seen high, and I've seen low
So loud, the voices over my doubts
Are telling me to give up
To pack up, and leave town
Even so I had to believe, Oh
Impossible means nothing to me
So can you lift me up
And turn the ashes into flames
Cause I have overcome
More than words will ever say
And I've been given hope
That there's a light on up the hall
And the day will come when the fight is won
And I think that day has just begun
Somewhere, yeah everybody starts there
You're counting on a small prayer
lost in a nightmare, yeah
But I'm here, and suddenly it's so clear
The struggle through the long years
It's hard for me to outrun my fears
But everything that's worth having
Comes with trials worth withstanding
So can you lift me up
and turn the ashes into flames
Cause I have overcome
More than words will ever say
And I've been given hope
That there's a light on up the hall
And that a day will come when the fight is won
And I think that day has just begun
Oh lift me up, Oh lift me up
Oh lift me up, Oh lift me up
Lift me up, Oh lift me up
Down and out is overrated
And I need to be elevated
Looking up is not enough, no
I would rather rise above, oh, oh, oh
So can you lift me up
and turn the ashes into flames
Cause I have overcome
More than words will ever say
And I've been given hope,
that there's a light on up the hall
And when a day will come
When the fight is won
And I think that day has just begun
oh, Just begun
Lift me up
Oh. Lift me up
Lift me up
Lift me up
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A_Wolf_Drowning_In_Blood Crew
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Posted: Wed Aug 05, 2009 5:13 am
Good Morning! I am Wolf! I'm not sure, but I guess I have chronic pain... (Sensitive to Sound) And I am blind in my left eye. There really isn't much else for me to say... but I do have pains... not caused by Chronic Pain but by broken bones... and sprained ankles... etc. Little things! And Asthma.  BELIEVE
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Posted: Wed Aug 05, 2009 11:41 pm
A_Wolf_Drowning_In_Blood: Welcome!! It's so great to see another person here. Any type of pain that is considered long term can count as a type of chronic pain, so you are more than able to call yours by that name. I hope you've been having a good day.
Now, onto my newest challenge. Yip, Boldie, I am talking about your challenge for me to try. And try I will. Basically, I have to pick a day (any day, but it has to be for the WHOLE day, and for that day, I have to pretend that I don't have RSD. It's nowhere as easy as it sounds. If it sounds easy, that is. For the past 52 months, RSD has ruled my life - my every waking moment, while I'm asleep, everything I do, and everything that I CAN'T do because of it. So, I am to live a day similar to those before I was diagnosed with RSD. Problem is, I can't even remember what it's like not to be in pain. What am I supposed to do with my day, when I'm usually traipsing off to multiple appointments, and the white hot daggers stabbing my leg care to remind me of it every second of the day. But!! I am going to do this, because I think that it is a very good assignment and may help appreciate life and living once again. So, I think I am going to take a few days to work out which day will be the best one to play make-believe. It will need to be a day when I don't have to go the hospital, or have to see my psychiatrist. My one query is, while I'm pretending I'm not sick, what should I do about my medication? Are they lollies? Really colourful and yuck tasting grains of rice? Ideas please!! ><
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bittersweet and evocative
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Posted: Thu Aug 06, 2009 8:20 am
bittersweet and evocative A_Wolf_Drowning_In_Blood: Welcome!! It's so great to see another person here. Any type of pain that is considered long term can count as a type of chronic pain, so you are more than able to call yours by that name. I hope you've been having a good day.Now, onto my newest challenge. Yip, Boldie, I am talking about your challenge for me to try. And try I will. Basically, I have to pick a day (any day, but it has to be for the WHOLE day, and for that day, I have to pretend that I don't have RSD. It's nowhere as easy as it sounds. If it sounds easy, that is. For the past 52 months, RSD has ruled my life - my every waking moment, while I'm asleep, everything I do, and everything that I CAN'T do because of it. So, I am to live a day similar to those before I was diagnosed with RSD. Problem is, I can't even remember what it's like not to be in pain. What am I supposed to do with my day, when I'm usually traipsing off to multiple appointments, and the white hot daggers stabbing my leg care to remind me of it every second of the day. But!! I am going to do this, because I think that it is a very good assignment and may help appreciate life and living once again. So, I think I am going to take a few days to work out which day will be the best one to play make-believe. It will need to be a day when I don't have to go the hospital, or have to see my psychiatrist. My one query is, while I'm pretending I'm not sick, what should I do about my medication? Are they lollies? Really colourful and yuck tasting grains of rice? Ideas please!! ><
AND TO YOU MISS WOLF****** Oh, thank you so much for sharing your pain and coming forth. May I ask how long have you been blind in your left eye? Was it from birth? Does it affect your daily life in the things you do? I just wanted to say thank you from the VERY bottom of my soul and heart that you came forward. It really does mean a lot to me. Thanks, L.YES, BELIEVE !!!!!!!!!!
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Posted: Thu Aug 06, 2009 9:46 am
bittersweet and evocative: Job search = no good. i failed! lol. i guess it's scholarship hunting now, bleh. how's life out side of pain ( i mean to ask like how's the book you are reading, or how's the video game you are playing? those kinds of things.) What do you like to do for fun?)
boldie64: HOLA!
Kira: Hey! long time no talk! =)
A_Wolf_Drowning_In_Blood: WELCOME!! =)
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Kira-fightingdreamer Crew
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Posted: Thu Aug 06, 2009 5:02 pm
Oh dear, I'm glad that a few of you liked that song!
Ailsa, ah, I really just, don't know what to say to you. Just that, I hope Boldie's idea to find a way to make a day seem "normal" helps you out and that... I keep hoping for you. >_<
AS 8B, it has been a while! I'm sorry to hear about your luck with the job searching, I'm having the same issues where I live, though they opened up a new store right by me that I applied for so, I have hope?
For scholarships, you should totally do the duck tape prom dress one. I saw the winning dress from this year in the paper about a month ago, it looked pretty cool.
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Posted: Thu Aug 06, 2009 9:34 pm
Hey guys, thank you all for your lovely comments! That just made my day >< Firstly, Boldie. Thank you for clarifying those few points for me! Lol Boldie, I agree about the pregnancy point - that would be rather unfortunate for you AND your back!! I felt mean laughing as I read it, but I figured that as you appeared to be laughing lots yourself that it was ok >< I like your idea about imagining I'm some where else on the day when I don't have RSD. That makes a lot of sense, as it means I can twist what's happening in my day to match that of a 'normal' person. I've never liked the term normal, because really, what is normal? But for this purpose, I'm referring to it as normal, as more of a generalisation.
as8b: sorry to hear that job hunting didn't go down too well. I'm sure something will pop up soon. Are you looking for anything in particular, or just something that offers you money for your time? lol I've won a scholarship for the rest of this year, and it appears that I'm going to be given 2 for my first year of university next year, amounting to $9,000 in total. *fingers crossed* As a disabled student, university is going to be more demanding on me than other students, so I won't be able work during the semesters. Currently I'm reading the Unabridged Journals of Sylvia Plath which are AMAZING. I personally love Sylvia so reading her journals is just such an insight into her world, and I find that I can really relate to her. For fun? I usually come online and waste away hours, transporting myself into another world and life lol Other than that, I read, and on days when I'm up to it, I do cross-stitch. Unfortunately, because of my lack of eyesight at the moment, I can't do my embroidery which I'm finding really frustrating! I'm a musician so the most of my day I spend composing music, singing, playing the piano and my saxophone, and generally playing around with songs etc. lol how about yourself? What's your idea of fun? xx
Kira: Boldie's idea seems like it's going to work really well! I'm just preparing myself for it >< And thank you for hoping for me - I really appreciate it!!
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bittersweet and evocative
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Posted: Fri Aug 07, 2009 5:47 am
bittersweet and evocative Hey guys, thank you all for your lovely comments! That just made my day >< Firstly, Boldie. Thank you for clarifying those few points for me! Lol Boldie, I agree about the pregnancy point - that would be rather unfortunate for you AND your back!! I felt mean laughing as I read it, but I figured that as you appeared to be laughing lots yourself that it was ok >< I like your idea about imagining I'm some where else on the day when I don't have RSD. That makes a lot of sense, as it means I can twist what's happening in my day to match that of a 'normal' person. I've never liked the term normal, because really, what is normal? But for this purpose, I'm referring to it as normal, as more of a generalisation.as8b: sorry to hear that job hunting didn't go down too well. I'm sure something will pop up soon. Are you looking for anything in particular, or just something that offers you money for your time? lol I've won a scholarship for the rest of this year, and it appears that I'm going to be given 2 for my first year of university next year, amounting to $9,000 in total. *fingers crossed* As a disabled student, university is going to be more demanding on me than other students, so I won't be able work during the semesters. Currently I'm reading the Unabridged Journals of Sylvia Plath which are AMAZING. I personally love Sylvia so reading her journals is just such an insight into her world, and I find that I can really relate to her. For fun? I usually come online and waste away hours, transporting myself into another world and life lol Other than that, I read, and on days when I'm up to it, I do cross-stitch. Unfortunately, because of my lack of eyesight at the moment, I can't do my embroidery which I'm finding really frustrating! I'm a musician so the most of my day I spend composing music, singing, playing the piano and my saxophone, and generally playing around with songs etc. lol how about yourself? What's your idea of fun? xx Kira: Boldie's idea seems like it's going to work really well! I'm just preparing myself for it >< And thank you for hoping for me - I really appreciate it!!
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