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bittersweet and evocative
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 Posted: Fri Jun 26, 2009 10:01 pm
AuntieSocial - your aunt has helped me more than I can put down in words!! She has been amazing. When I was diagnosed with a chronic illness, and told my long term prognosis, I truly believed my life ended there. At the age of 13, I thought my life was over. Now, at 17, I'm slowly getting to a point where I can believe that I can move on and live alongside pain. I know it won't be smooth sailing, but Madralyn has set an invaluable example to me - you can have chronic pain and STILL have a life. I cannot even begin to explain how different I am, and how different I feel, now that I have seen a living example of this lesson. You have right reason to be proud of you Aunt, and I, too, think she copes magnificently. I know I haven't had the pleasure of spending time with her in person, but even through talking with her here I see how well she gets on with everything, and how she doesn't let the pain take over. That is something I am going to endeavor to learn how to do that because it's such a reassurance that you can get on with life properly!
Anyway, I have to go, but it's awesome to have you here in the thread!! Thanks for stopping by xox
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Posted: Sat Jun 27, 2009 12:05 pm
that's what i love! she is such a great tool to society and everyone! =)
Keep Fight always! =)
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Posted: Sat Jun 27, 2009 6:18 pm
I am also not one with chronic pain but my mother Madralyn does. Her dragon she talks about is RSD/CRPS. When I was in 5th grade, I design a website with help from Madralyn to help family’s understand this syndrome. Even though Madralyn’s chronic pain will never give her a chance to live life the way she wants. We can always live her life with her. To her and all the people with Chronic pain Never Give Up! 
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Posted: Sat Jun 27, 2009 9:17 pm
Inuyasha Guardian I am also not one with chronic pain but my mother Madralyn does. Her dragon she talks about is RSD/CRPS. When I was in 5th grade, I design a website with help from Madralyn to help family’s understand this syndrome. Even though Madralyn’s chronic pain will never give her a chance to live life the way she wants. We can always live her life with her. To her and all the people with Chronic pain Never Give Up!
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Posted: Sat Jun 27, 2009 9:21 pm
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Posted: Sat Jun 27, 2009 9:44 pm
Aisla,
I'm sorry you feel so alone in a house of many. (Although, I don't feel this so much now there was a time I felt this way.) When you feel this pang of pain, write. Write to us, here or in private, anything is welcome and you shall not be judged. We respect one another, those with illness/pain and those who support us. I've told many people that although I was diagnosed with RSD, my entire family is affected even though I'm the one afflicted. There is no way for this not to be true. Each of us has to go through those steps of grief and we must communicate to keep the family bonds strong.
Christine's site, But You Don't Look Sick, is a wonderful online magazine for all people who have invisible illnesses. The Spoon Theory has been quite helpful for me in the past when trying to explain what it's like to live with chronic illness. Maybe it would be useful for you to share with friends and/or family? There's so much on her site now that I would say to take it slow, but maybe you can find some support within her personal essays.
Balancing our reality within the "normal" guidelines of the world, is a constant struggle for me, too Aisla. I struggle with it everyday. It's probably the one thing my family and I argue about the most, especially my husband. I have piles of work that I can't ever seem to get accomplished. It gets worse as my pain cycles worsen and then slowly I try to overcome all that I haven't been able to do. I see Mom's that can do everything with their kids and I can't figure out how I can ever get to be good enough and what I'm doing that's letting my kid's down. When I get to really beating myself up, it's usually one of my daughters or my son, now that he's older, who gives me strength. I regroup and try to balance things out again.
Attitude, Boldie and Aisla, I have to talk to you about this one. 2 years ago, I couldn't find motivation nearly at all and when my pain was at it's worst I couldn't find ways to cope. That's when I began working with a doctor who has helped me learn that one of the side effects of chronic pain how to do the things, my mind knew I should do but the essence of me couldn't figure out how to do. Now when I feel the irritablity come out, I try to take a "mommy time out," go out to the garden with my dog, read or sometimes it's just about taking a nap. On their part, my family recognizes when these times are happening and I hope, really hope that they know the difference between pain irritability.
Shutting yourself out from the world only helps for a short while; then we start stuffing the pain and ugliness inside of us. This only makes depression worsen and takes us deeper in. You must, must try to talk even if only to a journal, I have stuffed painful things for over 30 years; it's been such a different life emotionally the past 2. I feel like a huge weight has been lifted even though I just was diagnosed with full body rsd and must re-accept that it's never, ever, ever going to go away. I have to go through the steps again all of them...those stages of grief that Boldie put up there.
So that's where I am now, taking another look at my life and really worrying about the future on some days and others I remember to put it where it belongs, in God's hands.
Aisla, You are a wonderful young woman and I'm honored you and I have formed such a friendship. We are world's apart literally but a rare disease brings us together - odd as it may seem, it's true. When you don't feel strong, we will hold you up, but remember you've already done the same for so many...look at all you have done so far with your cancer awareness campaign!
AuntieSocial 8b, You treat me as a real woman, a friend when most put my illness in front of me and don't allow me to help them because I'm hurting too bad or whatever. You don't second guess my judgments and you understand when I can't talk. Thank you, thank you for what you said, you are an amazing young woman. I'm not giving you that title, quite yet wink I love you.
My daughter, the child who has supported me and first got me to connect with the outside world to share RSD and began to taught me how to find my fight; your encouragement when I had to be in the chair the first time and when I don't want to use it now; your welcoming me into school, even when it's Mom and that tends to be uncomfortable at times. I love you, thank you for posting here. Your an unbelievable asset to society and the heart and soul you carry gives you such compassion that I know you will make a difference in the lives of all that you meet.
Boldie, I can't leave tonight without saying THANK YOU. I knew your concept for "Hugs Soft, Love Strong" was a good one, but I never could have imagined the gifts it would bestow to everyone involved. Thank you for working during the worst of pain and pushing through when I couldn't. You are an amazing person and a very special friend.
Madralyn
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bittersweet and evocative
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Posted: Sun Jun 28, 2009 12:43 am
Wow, Madralyn I don't know where to start. That post has left me in tears, yet I can't work out if they're tears of sadness, relief or love. I think it's a mix of all three.
I find it so hard to tell myself that shutting myself off from the world isn't the best way to cope, because it's been the essence of the last 4 years of my life. Up until I started writing here, I rarely spoke about what it was really like for me. I'd reply with the usual, "yeah, I'm doing fine. Sore, but coping," when inside I was screaming for someone to realise that I wasn't coping. For someone to see that the pain was consuming the Ailsa that they once knew, and had transformed her into this beast, full of anger and rage. When I think about who I was before my diagnosis, I would never have contemplated that I'd turn into someone who couldn't share with the world how I was feeling, or not being able to control my anger towards even those I love. Yet that's what I've become. I'm not going to lie, because here is the very place I should be able to speak about this. I have tried many things to cope with the pain, the grief, the self loathing. For the past 3 years I have regularly self harmed, to gain some control over my life, and to put ME in some control of my pain, which every day spirals further out of my reach, and takes over another aspect of my life. I'm really sorry if someone reading this is disgusted or disappointed in my judgement and decision. I know that that isn't the best way to deal with things, but there are days when I nothing else works. I'm ready to give up, and am so over my foot and my CRPS that I'll do anything to help me get through the rest of the day. I have lost so many friends and people who I thought would understand my reasoning, so I withdrew into myself, I stopped talking about it. On the outside I looked in control, my friends believed I had changed my ways, and found another outlet to my pain. True, I don't do it as often any more, as after my family found out, I had to change. But there are still moments when I long to do it. Long to have that control once again. Now, I compose music. A lot of it. I write songs, and then also instrumental pieces to help let out my frustration and pain in a healthier medium.
I hope, Madralyn, that there will come a day when I can find the motivation to get on with everything like I used to. I barely recognise the girl I was back in 2005. Some for the better. Most for the worse. I turn to you for inspiration, and thank you so much for giving me the hope that there may come a day when I can smile again whole heartedly. At the moment, it's an effort to get up each morning and find the energy to go to school. There are days when that's past me. Thankfully most teachers get that and give me space when I need it, but some just don't seem to realise and put pressure on me that I can cope with. It's as if I need to hang a sign around my neck that says, "yes I have CRPS. Yes I'm in pain. No, I can't deal with you right now." But even when I try to tell them, my words fall on death ears. Madralyn, Boldie, why does God make it so difficult for us? That sounds so selfish when I read it, but it's what's on my heart and mind at the moment. It's hard enough to deal with the pain, but then no one seems to understand what we're going through on top of it. I can't cope with the two together. For me, everyone puts it down to 'being a teenager'. It allows them to get on with their own lives, and ignore what I'm going through. It seems as if it gives them one last thing to worry about, if they can convince themselves that my mood swings is down to being a teenager, if they believe themselves that I'll grow out of it, they don't have to worry about any long side effects I'll suffer. Well, long term it's going to be. And that's something I can't even try to comprehend at that moment. I want to believe it's going to end soon. That I'll wake up. Please, let me wake up.
I really liked The Spoon Theory. I think I'm going to give that link to a couple of friends so they can read it, and it may help them understand a little better what it's like for me, without me having to try and find the words to do so. I'm worried about referring my family to anything because I don't want them to think me ungrateful and that I believe they don't care. Because that's not it. It's just too hard to try and explain that to them, when part of me thinks they would rather not know, and believe I had it under control and that I thought everyone understood me enough. Does that make sense? Sorry - I'm rambling now. It's a sunday night and I'm tired, so it's more difficult than usual to get out a proper sentence!
I hope you guys are having a better day than myself, and Madralyn, you shall have something in the mail by thursday my time. I just have to get to the post office, but as I'm not at school on thursday I think I'll head there before I go off to the hospital. Love to you all and God bless. Thank you for giving me hope, love, support, and a place to talk. xox
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Posted: Sun Jun 28, 2009 11:28 am
Ailsa, what can a person do, but just sit there and listen? That's the least we can all do. You're in another state, Madralyn, Angel, Leah.... You're all in a different state, and it's not like we can just walk 2 blocks and as soon as you see me (us) from the looks on our faces, that you automatically give us a hug. I would love for that to happen. No questions asked, just hug. Because a hug can do soooo much for a person. It says: I care about you, I love you, I'll always be there for you, cry as long as you want on my shoulder, etc.... And I can't do that because you're miles away from me. Who knows? I always thought Tulsa as my home, but what if, just what if I were to move closer to one of you? Would you take me in? Would you be there for me? Those words you've said to me--are they real? Did you really mean what you said? That's what's going on in my head today. The pain is so much greater when I'm under stress. And I haven't been feeling in "tip-top" condition lately. It's enough just signing on to the guild. This thread has its ups and downs. It's public. Anyone can read it, and I hope to God, that whoever is reading this, gains strength for themselves, and uses that strength to help others. Chronic pain is a bit**. It doesn't care whether or not you're the queen of the prom one day, and have the most beautiful hair in the world. It doesn't care if you're 129 lbs, or 200 lbs. It gets you. It seeps inside you like this alien virus--only you're the only one who feels it. Yeah, it might show signs on your face, but really, you're the only one who feels it. And by sharing our stories with other chronic pain people, it only strengthens us even more. It's like the devil fighting with God. You think the devil's got such a grip on you, and then God shines His love down and that's usually at a point where you just can't hack it anymore, and suicide is the only thing on your mind. I'm sure I'm not alone. And maybe, perhaps, it's just the depression talking. I'm not sure. But I am sure of one thing and one thing only. "Invisible" chronic pain is a bit**.
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Posted: Sun Jun 28, 2009 1:44 pm
I am always here for anyone who needs an open ear to just let out any emotion. =)
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Posted: Sun Jun 28, 2009 1:50 pm
AuntieSocial 8B I am always here for anyone who needs an open ear to just let out any emotion. =)
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Posted: Sun Jun 28, 2009 10:14 pm
Hey Boldie! Right now we're kinda cramped, me, the hubby, and four cats, living in four 10x10 rooms, but there is **ALWAYS** room for you! Even if I have to put you on the inflatable guest bed in the middle of the mess. And shortly it will all be sorted out again and we'll actually have a guest room back!
My heart, my home, my LIFE is always open to you!!
Hugglez!!
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Posted: Sun Jun 28, 2009 10:41 pm
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bittersweet and evocative
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Posted: Mon Jun 29, 2009 12:04 am
Oh Boldie, I wish I could hug you right now. First things first: "Would you take me in? Would you be there for me? Those words you've said to me--are they real? Did you really mean what you said?" YES I would take you in. And of course I mean what I said. All the words I have written here in this thread and to you, Madralyn and everyone else, has been true. Boldie, it is all true.You have given me so much inspiration and I am so so blessed that I have met you. Truly. You are an amazing and strong woman, who sets an example to the rest of us here. You have shown me how you can have chronic pain and still live. And I agree. Chronic illness is a bit**. It takes over someone's life, and invades every space of their mind and body. And you're right, it is like the devil fighting against God. But do you know what else? God wins. Remember that as you fight this battle. And you are not alone. Miles apart, I am still going through this with you and want to see you get better. I know these seem just like simple words right now of no consequence but believe me when I say this: you are not alone, and I would do anything if it would make you feel better, or take away some of your pain. Anything.
I know what it's like to have depression speaking through you. It's my daily battle to try and get my own voice to defeat that of my depression and suicidal thoughts. There are always days when you feel like wanting to end everything, and I cannot be one to preach against these thoughts as I suffer from them daily, but I want you to know that I am praying for you and I believe that you can win this fight. I know you can, Boldie.
I'm sending you lots of love and thoughts. In God's love and mine too, Ailsa xox
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Posted: Tue Jun 30, 2009 1:48 pm
Protector of Dragons Hey Boldie! Right now we're kinda cramped, me, the hubby, and four cats, living in four 10x10 rooms, but there is **ALWAYS** room for you! Even if I have to put you on the inflatable guest bed in the middle of the mess. And shortly it will all be sorted out again and we'll actually have a guest room back!
My heart, my home, my LIFE is always open to you!!
Hugglez!!
Quote: "My LIFE is always open to you"
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Posted: Tue Jun 30, 2009 1:52 pm
AuntieSocial 8B I am always here for anyone who needs an open ear to just let out any emotion. =)
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