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 Posted: Fri Sep 04, 2009 1:41 pm
Ailsa,
I've had to go back to page 11, so things may have changed some forgive me if I regress...
The word NORMAL should be cast out from the English language. Meaning that "normal" is a standard in which society uses to characterize how something should be without taking in to account all the variables that might exist. I actually was really wrapped up in not being NORMAL for a very long time and still catch myself comparing me to other mom's when I drop off the kids for school. Thoughts like "if I was NORMAL then I could wear clothes like that because I could wear whatever I want or if I was NORMAL I wouldn't have this walker and could play kickball with the kids. Stuff like this only makes us angry at something we simply cannot contro and for me learning to accept what I have control over and letting go of the things I do not has seriously helped me a great deal.
I spoke to a friend about this and I really liked her explanation as she tends to look at the medical side of things..."That most of society cannot fit neatly into this "normal" category and shouldn't try to. Normal should be replaced with "average" meaning an aggregate of results from the sample. Normal carries the emotional connotation of "right" or "correct" which is doubly misleading. For example, my average body temperature is 96.4, so when I am running 99 I'm SICK. But not according to "normal". So, I always have to teach my caregivers that my *average* is lower than the statistical median, and I need to be treated more aggressively when I present with what, to them, is a "only slightly" elevated temp."
I'm glad you made it through exams stress always tends to make my CRPS worse, and the experience at University - WOW how awesome is that!! I'm excited for you!!
The darker days are not yet behind you and please, use the time you have with your phsyc. and tell them how you feel - all of it. It's really hard I know, I've done it and I know it's not easy but I'm telling you it all gets easier to bare when the darkness isn't holding you in it's grasp. Live for each and everyday, not for what you cannot do but, for what you can. You are an amazing young woman with artistic gifts galore! Use those gifts that God has gifted you with to enrich your life and that which you cannot do will slowly become less meaningful. I know this seems impossible but, as someone fighting this fight I can tell you that when I stopped reaching for all I could not do and started holding on to what I could, life started meaning something more. My children and my husband hung on to me and I'll keep holding on to you. They but barriers in my way when they see me overextending myself and sometimes they let me go and I find out the hard way. But life is so much more than the opportunities that we think we've already lost, I didn't believe it a few years ago, but now I've begun to dream again. You have so much to offer this world and it won't be easy but in time you will see how to manage your health and what you want to do. It is possible, I promise you.
Boldie, I'm so glad that the medications are making a difference in your quality of life even if not in the pain. When I came out of my depression, life seemed better and although I hurt like hell, somehow I could deal with it better. I'll always be here for you, you know.
Kira, Yes you can mention me. I'd love to read it when you are done.
As for me the first week of school has left me spent and I'm not even the student eek Much of it I think is related to getting up at 5:30 am and going to bed after 9. I take a nap but as of today, Friday, I crashed. I came home from dropping my son off at school and slept until an hour ago! I still feel exhausted and know that this afternoon I must pick up and run again. Thank goodness it's Friday, we can take it easy after dinner tonight!
I thought about something I saw this morning as the tv was talking about the H1N1 virus and how people who try to push through it have the worst complications. I think that's true for all of us who neglect ourselves so that we can plow through and try to get everything done. I personally have a problem with this and continue to struggle with exactly how to balance that which needs to be done with that which I can handle doing. It's like I don't do enough or I do so much that I can't do anything for days. A good example is this week but, I didn't account for the summer sniffles which have made their way through the house and to me. I plowed through and although I kept my pain in check I didn't rest enough.
I don't know about you but I'm always looking for tips and such in this area and I'm not finding much of anything. Maybe Boldie, could we start a tips section?
I've got 20 minutes before I need to pick up my children, so I'm signing off. Hugs to Wolf, Auntie Social and anyone else I've missed I'm sorry....I hope you all have a spectacular weekend!
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Posted: Fri Sep 04, 2009 5:58 pm
Quote: I don't know about you but I'm always looking for tips and such in this area and I'm not finding much of anything. Maybe Boldie, could we start a tips section?
Coping Tips - Chronic Pain
They also have these sights: Overcoming Pain
How to Cope with Pain
You don't look sick-The Spoon Theory
and this one.... National Pain Foundation
I'm sure I could maybe make that a separate thread within Hug Soft, Love Strong. I don't know.... Is this what you were talking about?
Please PM me, or let me in here. Thanks.
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Posted: Fri Sep 04, 2009 6:18 pm
Ailsa, I'm so glad you got those exams done, and have lived through them. (You know what I mean.) I've been thinking about you, and have been feeling really guilty, because I haven't been here when I should have been. Truth of the matter is, I got involved with another guild that I've been a member in for 2 years, and they're doing this "give-away" thing, and I sorta cut my time in half. And I haven't been feeling the greatest, so, there's another strike against me. My husband and I FINALLY made up, so I don't have that extra stress on my shoulders. YEA! In fact, everytime he comes into the room that I'm in, he bends over and gives me a kiss. Now that's training on my part, ladies and gentlemen, for those who are married. LOL ROFL
Anyway, Ailsa, I'm very, very sorry for leaving you on the ships' "plank", so-to-speak. I didn't mean to, but right now, life is a little busy for me, and can you EVEN imagine me working through all of this? OMG. There's no way. That's why, for Madralyn, I really admire her, because she has children, and each child, I'm sure, has to go here or there, and she has to drive them here or there. Know what I mean? Getting in the car. Getting out of the car. Good Lord. Not to mention the idiots she has to pay attention to out on the road. Stress, stress, stress...... AAA UUU GGG HHH !!!!!!!!! You're a very, VERY good MOM, Madralyn.
Well, that's all I have time to say. My lumbar is hurting like a bit** today, and I'm trying to control it without using "extra" medicine.
BUT HEY! HERE'S SOME REALLY GREAT NEWS..... THE NEW ANTI-DEPRESSION PILL THE DOCTOR JUST PUT ME ON, IS WORKING !!!!!!!!!!!! YEA!!!!!!!!!!!!
Even Rick (my husband) has noticed. WOW! It must be working. And, yeah, I do feel better emotionally. At least, I'm not crying every frickin' second of the day. I think everything just overwhelmed me, and I took turning 45 really hard. It's not easy waking up and then realizing, OMG, I've just turned another year, and that's another year of this pain. *tilts head, at least, that's how I looked at it. I'm okay though, emotionally now. *whew........ Well, that's all the time I can spare right now. Everyone PLEASE take care of yourself. And that's YOU, TOO Lindsy! OK? No more falling down.......
Okay, I'll talk to ya's later. All my love, boldie
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Posted: Fri Sep 04, 2009 11:57 pm
I'm currently writing this in a Word document and will then paste it into a reply, because there's no way that I'm going to be able to remember what everyone has said by the time I click the reply button. Hopefully I'll get all the Hexadecimal and BB Codes right ><.
Madralyn, I'm going to begin with the easier points in your comment, before I move onto those which will be more challenging for me to answer/write about. I agree with you completely in regards to your opinion on the word "normal". Every day I think about the things I can't do and think "Well, if I was a normal teenager, I would be out there doing that." And those thoughts are what get to me some days, when I'm already feeling down. I find that I have the same trouble with you when comparing MY normal pain levels against someone else's. When I say that my pain is around an 8/10 (and don't even get me started on the stupidity of having to rank pain levels!), people look at me skeptically and tell me that can't be possible, as I'm walking around or doing physio. I try to explain that that is a normal amount of pain for me, and I've grown used to having to still do things when my pain is that high, but then I get labelled as an over exaggerator, or told that it's "all in my head." I am so over that!!
Exams are tough, but I think that it's the one thing I hold onto from my old life, that being my life before CRPS and my subsequent diagnosis. I struggle through them and by my last exam I am so exhausted it will take me weeks to get back the spoons I had used to complete them, but I do it. I do it because it proves to teachers and students at my school that you can be disabled and achieve highly academically. It's insane how many people pass me side ways looks when I get top of the year in English, and I receive the award by pushing myself up on stage in my wheelchair. I thought that people weren't that shallow, but it turns out that they are. My teachers all say that I can have extensions on all assignments so that I can focus on my health before my schooling, but I very rarely take them up on this offer. I am determined to stay up with my class and complete the work beside my friends. It's a really hard situation though because I get so sore that I worry that I won't do as well as I could, so then I over spend on spoons in an effort to finish a project well. I get the good grades, but am left with a body that can't even cope with walking to the bathroom more than twice a day.
Oh Madralyn, talking with my physc. is so hard. This new one is lovely but I can't even put it in words inside my head properly - how am I meant to tell her what I truly feel? What twisted and dark thoughts fill my head? I can't even comprehend what I will do the next day, and I have stopped dreaming. That sounds so much worse once I've written it down. But it's a truth that has been inside me for months now. I have given up on the hopes of having an improved future. What sort of future will it be when I can barely hang on to each day. I think it's rather ironic that as I wrote that last sentence I originally wrote sore instead of sort. Just a side note! I promise you this - I am going to go away tonight and try and find something to hold onto. Something which I can still do, even with the pain. I've lost so much - we have all lost so much, and it just seems so unfair at times. Why us? What made God think that we were the people to go through this? Because I really don't feel like I've been chosen as a survivor. It almost feels like I was chosen to be the example for others of where you will end up if you don't believe. I never wanted to be in this position and the state that I'm in, but now I'm here, I don't know how to get out.
Boldie, I was on Oxycontin, too, but once I started on Ketamine regularly they took me off it because it was too risky to mix them together. Stupid drugs. I hate being on multiple medications because then you always have to be worried about reactions between them. Being that most of the drugs I'm on are quite new and relatively untested, they have to be super alert. Plus, there's always the danger that I'm going to fall into another coma...oh joy. So I'm really glad that your doctors told you the risks - something they didn't do for me - but I'll pray that your doctors either find something less dangerous or can at least ensure your safety heart
On a happier note, I'm glad that you and your husband have made up - things seem easier when you have a loved one by your side, not on the opposite side of the room (I mean in more a metaphorical sense, but it works in the literal, too). And Boldie, there is no need to apologise. All of my issues with my life are second to those that you are going through. Never EVER think that you have to comment here if you are too tired, or sore, or just too stressed to deal with other people's problems. Seriously. There are times when you just need to focus on yourself and take the time to recharge and get some more spoons. So don't think another second about it, ok? I've managed to stay on the "plank" - the pirates haven't pushed me over board just yet.
I'm glad that your meds are doing their thing XD And you're not alone - each birthday I just realise that it's another year gone by without a cure. Unfortunately, I need to feel this every month on the 15th (the day which I had my injury), and each April 15th (my anniversary, so to speak) I break down. That's a day when you DON'T want to be anywhere near me.
Anyway, sorry for such a long winded reply! Love to you all and God's blessings.
love, Ailsa xx
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bittersweet and evocative
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A_Wolf_Drowning_In_Blood Crew
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Posted: Sat Sep 05, 2009 10:55 am
boldie:: Okay... I'll stop falling. : D
And it's GREAT to hear that the medicine is working! YAY!
Ailsa:: It's good to see the exams are over. I was going to say something else... but I lost my train of thought... heh heh...
Madralyn:: Hugs to you too!!!
My mini shop is doing good and I fixed my scanner!!! ...for now... stare
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Posted: Sat Sep 05, 2009 2:45 pm
bittersweet and evocative I'm currently writing this in a Word document and will then paste it into a reply, because there's no way that I'm going to be able tot remember what everyone has said by the time I click the reply button. Hopefully I'll get all the Hexadecimal and BB Codes right ><
Madralyn, I'm going to begin with the easier points in your comment, before I move onto those which will be more challenging for me to answer/write about. I agree with you completely in regards to your opinion on the word "normal". Every day I think about the things I can't do and think "Well, if I was a normal teenager, I would be out there doing that." And those thoughts are what get to me some days, when I'm already feeling down. I find that I have the same trouble with you when comparing MY normal pain levels against someone else's. When I say that my pain is around an 8/10 (and don't even get me started on the stupidity of having to rank pain levels!), people look at me skeptically and tell me that can't be possible, as I'm walking around or doing physio. I try to explain that that is a normal amount of pain for me, and I've grown used to having to still do things when my pain is that high, but then I get labelled as an over exaggerator, or told that it's "all in my head." I am so over that!!
Exams are tough, but I think that it's the one thing I hold onto from my old life, that being my life before CRPS and my subsequent diagnosis. I struggle through them and by my last exam I am so exhausted it will take me weeks to get back the spoons I had used to complete them, but I do it. I do it because it proves to teachers and students at my school that you can be disabled and achieve highly academically. It's insane how many people pass me side ways looks when I get top of the year in English, and I receive the award by pushing myself up on stage in my wheelchair. I thought that people weren't that shallow, but it turns out that they are. My teachers all say that I can have extensions on all assignments so that I can focus on my health before my schooling, but I very rarely take them up on this offer. I am determined to stay up with my class and complete the work beside my friends. It's a really hard situation though because I get so sore that I worry that I won't do as well as I could, so then I over spend on spoons in an effort to finish a project well. I get the good grades, but am left with a body that can't even cope with walking to the bathroom more than twice a day.
Oh Madralyn, talking with my physc. is so hard. This new one is lovely but I can't even put it in words inside my head properly - how am I meant to tell her what I truly feel? What twisted and dark thoughts fill my head? I can't even comprehend what I will do the next day, and I have stopped dreaming. That sounds so much worse once I've written it down. But it's a truth that has been inside me for months now. I have given up on the hopes of having an improved future. What sort of future will it be when I can barely hang on to each day. I think it's rather ironic that as I wrote that last sentence I originally wrote sore instead of sort. Just a side note! I promise you this - I am going to go away tonight and try and find something to hold onto. Something which I can still do, even with the pain. I've lost so much - we have all lost so much, and it just seems so unfair at times. Why us? What made God think that we were the people to go through this? Because I really don't feel like I've been chosen as a survivor. It almost feels like I was chosen to be the example for others of where you will end up if you don't believe. I never wanted to be in this position and the state that I'm in, but now I'm here, I don't know how to get out.
Boldie, I was on Oxycontin, too, but once I started on Ketamine regularly they took me off it because it was too risky to mix them together. Stupid drugs. I hate being on multiple medications because then you always have to be worried about reactions between them. Being that most of the drugs I'm on are quite new and relatively untested, they have to be super alert. Plus, there's always the danger that I'm going to fall into another coma...oh joy. So I'm really glad that your doctors told you the risks - something they didn't do for me - but I'll pray that your doctors either find something less dangerous or can at least ensure your safety heart
On a happier note, I'm glad that you and your husband have made up - things seem easier when you have a loved one by your side, not on the opposite side of the room (I mean in more a metaphorical sense, but it works in the literal, too). And Boldie, there is no need to apologise. All of my issues with my life are second to those that you are going through. Never EVER think that you have to comment here if you are too tired, or sore, or just too stressed to deal with other people's problems. Seriously. There are times when you just need to focus on yourself and take the time to recharge and get some more spoons. So don't think another second about it, ok? I've managed to stay on the "plank" - the pirates haven't pushed me over board just yet.
I'm glad that your meds are doing their thing XD And you're not alone - each birthday I just realise that it's another year gone by without a cure. Unfortunately, I need to feel this every month on the 15th (the day which I had my injury), and each April 15th (my anniversary, so to speak) I break down. That's a day when you DON'T want to be anywhere near me.
Anyway, sorry for such a long winded reply! Love to you all and God's blessings.
love, Ailsa xx
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Posted: Sun Sep 06, 2009 12:28 pm
Hi every one, sorry i'm not on much this weekend. I prcrastinated waay to long iwth a book and i have a test on tuesday so the internet is pretty much nonexistant. i'm such a dumb buttt for watiting too loong.
I scanned quickly over everyone's posts though.
I hope ever one is doing better today, there's always tomarrow and the next day.
I will talk to you guys once my book is complete.
adios,
AS 8b
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Posted: Tue Sep 08, 2009 1:19 am
Hey guys, Sorry that I haven't been around in a few days. Things have been getting a bit much so I've been laying low for a bit. How has everyone been doing? Sending my love out to each and every one of you
xx Ailsa xx
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bittersweet and evocative
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A_Wolf_Drowning_In_Blood Crew
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Posted: Thu Sep 10, 2009 2:47 pm
All righty.. computer is being slow and glitchy... And unfortuanatly my patients has run out with it. So, there will be not big fancy loving post today D:
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Posted: Fri Sep 11, 2009 2:14 am
Wolf, I hope your computer sorts itself out!! I hate it when mine screws up >< I'll be thinking of you! How is everyone else doing? Did you have a good end to your week?
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bittersweet and evocative
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A_Wolf_Drowning_In_Blood Crew
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Posted: Fri Sep 11, 2009 5:48 pm
Ailsa, well, it's still being a pain!!! (The computer, that is)
Today I went to the doctors for a physical, and I got two shots D: I hate shots... they're not so painful anymore, just annoying. And I had to pee in a cup! I HATE doing that... its akward! And then I got a finger p***k D:
When I walk into the waiting room to, well... wait, I have to fill out this questionaire. Now, I have to do that every time, and it's all the same questions! The one that really bothers me is, "Have you been depressed or unhappy in the past 3 days?" I'm emo, for Pete's Sake!!! And I hate having to answer that question! Both me and my doctor know my reasons! Sheesh....
Aw! The cutest thing just happaned! Okay, I have 12 dogs, and my room/computer is on the top floor. Well, each dog has their own doggie bed, and all of a sudden, 11 of them all came running upstairs into my room with their beds!!! How cute! Now, Biscuit, the smallest, yelped once from the bottom of the stairs, and Mountain came down to help him with his bed! AWWWW! SO CUTE AND SO SWEET!!! Animals are amazing and make me laugh and smile biggrin
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Posted: Fri Sep 11, 2009 6:24 pm
hello every one, i hope that you are doing well. i hope the pain i not too strong to day.
Wolf that's and adorable story! =)
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bittersweet and evocative
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Posted: Sat Sep 12, 2009 1:37 am
Wolf, did I read that right?! 12 dogs!! That's insane! You live on a farm-like premises don't you? I still can't get over the fact someone owns that many animals >< and that is so incredibly cute that they brought their beds up to be with you. Animals really do work miracles. When I was in hospital in the Children's Ward, every Wednesday a labrador called Cookie, and a couple of rabbits would come and visit. It was the highlight of the week, because it was as close to my cats I could get, in a weird, substitutional way.
Anyway, I had an amazing conversation with Madralyn this evening, which has cheered me up a lot, so I'm off to waste away the time before I go to bed, and hopefully go to sleep! I really hope that everyone here has had a good day, and I'll be praying for the same thing.
xx love Ailsa xx
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Posted: Sat Sep 12, 2009 9:29 am
Ailsa:: Yes! You did read that right!!! I do live on a farm, 200 acres. (Mostly woods... 3/4 woods...)
Aw, I've heard about the animals that come to visit at hospitals. I want to certify one of my doggies... but I'm too lazy.
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A_Wolf_Drowning_In_Blood Crew
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Posted: Sat Sep 12, 2009 6:36 pm
AILSA!!! I GOT THE LETTER TODAY! It has made my day!! i feel special! i love the braclet! i'm wearing it!!!! =) i hope you are doing ohkay. and i hope your french teacher lightens up!
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Reply
