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 Posted: Sat May 16, 2009 9:44 pm
 I'd like to start this very first thread out with a poem. It is called "Rainbow of Hope" by Stacey Yount.
RAINBOW OF HOPE
I sit staring out my window again
Stuck in this room
By an illness that won’t let me free
I look out at the rain
And feel
Blue with sadness for
All that was, is and never will be
Red with frustration and anger
Hating the pain and endless days
Green with envy
Because everyone’s life has moved on
While I am stopped here since that fateful day
Yellow with fear
That this is the way
It will always be
Then he calls
Come look out this window
And I see
A rainbow stretched across the sky
The colors transform
Into Hope
(Submitted by: Stacey Yount 2009, butyoudontlooksick.com)
When a person is being diagnosed for the first time, I feel a person starts thinking, "Why me"? "What have I done"? There is a real grieving period that follows a real loss, a loss of a healthy organ or a loss of a healthy body and this can be very painful. As most of you know- pain has a way of showing itself on your face. It doesn't need an announcement that it is here.
But in any form of pain, (chronic or not--but mostly chronic), there has to be a wonderful way to express your emotions. Sometimes when you're not feeling well, it's hard to talk about it, or hard to express to your friends and family exactly how you feel. But more importantly it's good to have an outlet for your feelings....Perhaps you can keep a daily journal, or now-a-days, because we're in the age of computers, keeping a blog on living with chronic pain. Getting these feelings out in a direct way is very positive and can help you when you look back, even from a month ago, and see how you are progressing or .... regressing.
I think even if you are not religious, there has to be a greater "being" out there for you. I call them angels, and perhaps we all look somewhere for some type of guidance, and a general well-being. I believe there are angels all around us guiding us, supporting us and watching over our very own steps. Sometimes, taking our first steps is the hardest when dealing with chronic pain. After that first diagnosis, you are about to take on that very FIRST step into depression, into anxiety, and self-doubt. I know it's hard to live life to the fullest with any disability. Many things get in our way, such as suicidal thoughts, depression, anxiety, the "not-knowing", "Where do I go from here?", "What's going to happen to my kids", etc.
I was diagnosed with severe chronic pain of the lumbar, along with degeneration of many discs, and arthritis from the neck down to the tailbone. June 11, 2009 will be the second anniversary of my first back surgery where the neurosurgeon scraped away bulging and ruptured discs and made my nerve root canal larger. January 23, 2009 is when I had my second back surgery, where the neurosurgeon added screws to fuse to my vertebrae, as well as, AGAIN made my nerve root canal larger. I went through these steps and I wanted to share with you how true these steps were and are to most people-especially myself. They just sort of came naturally, but I was amazed at how accurate they all were.
1.)Denial and Isolation= At first, I tended to deny the loss has taken place, and withdrew from my friends, family, co-workers, and social contacts. (This stage may last anywhere from a few weeks to several months, depending on each individuals grieving style.) For me after the second surgery, I couldn't believe how much pain I was still in. I thought once everything "healed" up inside, I would be fine, which led me right into anger, because the pain didn't lessen. In fact, it got worse.
2.)Anger=Though after the reality sets in, you might become very angry, even furious with your pain. I know I was. Most of us, too, will become angry with ourselves for even shakily letting the event take place. Why did I listen to my neurosurgeon? He PROMISED me I would feel better and I don't.
3.)Making Deals with God=This is where I started to make bargains with God; all in hopes that...well, you know I would get better. I noticed I was starting to lose all self-respect. (I didn't care though.) Yep..it is at this time that I became so unattractive pleading with God to please (please..PLEASE) take this away from me. This is also called a "blind stage" where a person tends to take the blame, mistakenly believing that "they" did something wrong and another chance will miraculously cure the problem. All I managed to do was strip myself of my pride, self-respect and dignity, leaving me to feel humiliated and rejected and in the same place as I was. oh, argh!
4.)Depression=I started to feel numb and felt like I was turning into a "zombie". (My husband couldn't take this stage, believe me.) Lately my anger and sadness may still be there, but remains hidden and masquerades as a depressed state. And then I was barricading myself in my home. In order to break the cycle, I needed to reach Stage 5, unbeknownst to me.
5.)Acceptance=Finally it's over! The anger has encouragingly passed, the sadness has soon tapered off, the depression has lifted and I see reality and it feels great. I will survive! The doctor is trying something new--not the only-too-familiar epidural spinal injections, but SI injections, (meaning Sacral Iliac) injections. Since, significantly, this is where my pain is, I can't tell you what relief and hope I intend to feel around the sciatica nerve. To finally get rid of this EVERYDAY intense pain in my legs, lower lumbar and groin/hips area.... What joy ! What a relief! I will let everyone know the progress of what happens to me, step by step.
So.... Just by reading this, though, I hope you feel rejuvenated and upbeat. There is a rainbow at the end, I do promise that. Now, I want to make this clear that you WILL have bad days. I guarantee this, as well. But if your mind and your body are on that uphill swing, you're halfway there. Your feelings just have to be sorted out.
And not entirely will you ALL go through these steps. But it sure does help knowing there's a hand reaching to pull you up.
Each week, I would like to help each and every one of you who comes forth. I really invite you to contribute YOUR OWN stories, regardless of your "condition". I will listen, I will offer strength to you, and if you want your posts to be confidential, then by all means, PM me. I'm here for you....
Reach out, because if I see a hand reaching, I'm grabbing it !
Now please remember, I am NOT a doctor. I am a patient who has underwent these series of steps, and I, on behalf of Dreamed Integrity, want to help other people. Godspeed to each and every one of you.....
   
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Posted: Sun May 17, 2009 9:57 am
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Posted: Sat May 30, 2009 10:36 am
This thread is NOW open.......
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Posted: Fri Jun 19, 2009 3:43 pm
I've carried an angry dragon within me for over 7 years now; a chronic neurological pain syndrome that now controls my entire body. It is called Reflex Sympathetic Dystrophy known as other things most commonly Complex Regional Pain Syndrome. Unfortunately, for me, there isn't much that can be done at this point except to take medication that helps the nerves to calm down and to control the unbelievable burning pain it causes.
It's taken me a long, long time to come to terms with my health. The stages of grief aren't something we always complete and never do again; as life continues we continue to heal and grow that's what I've had to do and unfortunately it took a bout of thyroid cancer twice actually, for me to see how to live again and use the gifts that God has given me.
My husband and children have learned that this illness does not only affect me but all of us in some way. That saddens me but they have been wonderful, learning how to live and be happy in new ways and keeping things as "normal" as possible.
My husband and 3 children are an inspiration to me, each in their own way and the deep friendships I've made with some very special people (they know who they are) have showed me the path back to optimism, to feeling self worth and opening my heart to others who've seen difficulty in their lives.
I'll have to come back and tell you more but for now, thank you for this thread for supporting me when I had trouble standing.
Madralyn
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bittersweet and evocative
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Posted: Sat Jun 20, 2009 11:36 pm
Hey
Yay! I get to be one of the first posters on this thread!! Ok..moving on
I'm Ailsa. Although I'm only 17, I have been living with chronic pain for now 4 years, 2 months. That's 36,630 hours, approximately, that I have been in pain. It's really hard, and I'm still in step 4, in depression, but step 1 certainly has set up its quarters in my life. Which is why I'm here. For the first time, I can be surrounded by people who understand what it means to have a 'bad day'. It's an amazing feeling to know that there is someone somewhere who can read this and know what I'm talking about. Past the usual 'oh, I know what you mean'. But actually understanding.
Sorry if I sound really annoyed. I'm not - just letting everything out. Please don't think me rude! heart I'm currently waiting on more diagnosis' that may explain why I've lost nearly all of my vision, so it would be awesome to be around people who know what it's like being in the waiting game!
I hope you are having a fantastic day, and I'm really sorry for the length of this comment. I was planning on it being short...lol I failed there! I'd love to talk to anyone, though, so please message me!
Oh, and Boldie - thank you so much for setting up this thread and for moderating it. I'm sure that not only I am sitting her, thanking you, and thinking how amazing and inspirational you are as a person and as a fellow gaian living with chronic pain. xx
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Posted: Sun Jun 21, 2009 10:51 am
bittersweet and evocative Hey
Yay! I get to be one of the first posters on this thread!! Ok..moving onI'm Ailsa. Although I'm only 17, I have been living with chronic pain for now 4 years, 2 months. That's 36,630 hours, approximately, that I have been in pain. It's really hard, and I'm still in step 4, in depression, but step 1 certainly has set up its quarters in my life. Which is why I'm here. For the first time, I can be surrounded by people who understand what it means to have a 'bad day'. It's an amazing feeling to know that there is someone somewhere who can read this and know what I'm talking about. Past the usual 'oh, I know what you mean'. But actually understanding.
Sorry if I sound really annoyed. I'm not - just letting everything out. Please don't think me rude! heart I'm currently waiting on more diagnosis' that may explain why I've lost nearly all of my vision, so it would be awesome to be around people who know what it's like being in the waiting game!
I hope you are having a fantastic day, and I'm really sorry for the length of this comment. I was planning on it being short...lol I failed there! I'd love to talk to anyone, though, so please message me! Oh, and Boldie - thank you so much for setting up this thread and for moderating it. I'm sure that not only I am sitting her, thanking you, and thinking how amazing and inspirational you are as a person and as a fellow gaian living with chronic pain. xx
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Posted: Sun Jun 21, 2009 9:15 pm
Madralyn I've carried an angry dragon within me for over 7 years now; a chronic neurological pain syndrome that now controls my entire body. It is called Reflex Sympathetic Dystrophy known as other things most commonly Complex Regional Pain Syndrome. Unfortunately, for me, there isn't much that can be done at this point except to take medication that helps the nerves to calm down and to control the unbelievable burning pain it causes.
It's taken me a long, long time to come to terms with my health. The stages of grief aren't something we always complete and never do again; as life continues we continue to heal and grow that's what I've had to do and unfortunately it took a bout of thyroid cancer twice actually, for me to see how to live again and use the gifts that God has given me.
My husband and children have learned that this illness does not only affect me but all of us in some way. That saddens me but they have been wonderful, learning how to live and be happy in new ways and keeping things as "normal" as possible.
My husband and 3 children are an inspiration to me, each in their own way and the deep friendships I've made with some very special people (they know who they are) have showed me the path back to optimism, to feeling self worth and opening my heart to others who've seen difficulty in their lives.
I'll have to come back and tell you more but for now, thank you for this thread for supporting me when I had trouble standing.
Madralyn Madralyn, thank you so much for gearing up the courage to actually speak about your illness. I'm proud of you, and you know I'm ALWAYS here for you when you're about to "lean".
I know it takes a special person to survive what God has dealt them, but for OTHER people to survive pain that is so much worse than my pain, I proudly stand up and clap and whoop and holler. I say: :
..... and keep on doing what you've been doing. It takes great nerve and great confidence to reveal to everyone else what is wrong with you and it takes even a bigger heart to help those who cannot help themselves. People like this not only deserve some sort of medal, but a big round of applause.... and Madralyn, I applaud you for standing up and believing in yourself and being proud of who you are! I know I'm very proud of you. For even just having the courage to get out of bed each and every morning and help get your children off to school and your husband off to work. God bless you, and may you ALWAYS keep up your wonderful, inspiring attitude. You are a role model for all of us to be. I will always support, love, honor and cherish the friendship we have together. I know you inspire me to the "tippy tops of the mountains." You help me gain strength to carry on, after listening to what you go through on a daily basis, on the phone. 
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Posted: Mon Jun 22, 2009 12:03 am
Back again!
Thank you so much for your quick reply. There's no need to thank me for posting here - it's such a comforting feeling to know there's others out there who are going through something similar to me. Here where I live (New Zealand) there aren't many cases of CRPS/RSD. About 50. If I'm lucky. And I've never met any of them. Although I live in the main city, the only person with this condition is about 70, who developed it after getting arthritis. I looked into it, but he wasn't interested in talking to a teenager, as he believed that it was all down to age as to why he developed it. It's really hard to believe there's other people suffering from my condition, when I'm so isolated and separated from anyone who may understand. It's taken a long time, but I'm slowly realising this as an opportunity to teach those in my county, and my city, what it means to live with chronic pain, and I do believe that God has put me through this for a purpose. I have yet to find out what this is, though. I've been praying about it for weeks, and will keep going, until I learn how I can turn this situation into something positive. All I seem to have accomplished so far is to ruin friendships, destroy my family's happiness, and waste countless hours sitting in my darkened room, wishing I was anyone but me.
That seems like such a selfish thing to write, when I know deep down there are people who are going through so much worse, but I feel like if i can't write that down on paper here, surrounded by people who are the most likely to understand where I'm coming from, then where else can I go?
I am so thankful for Madralyn, and the support she has shown me. Up until I talked to her, I believed my life was over. Once diagnosed, I thought that my life were to whittle away until there was nothing left. Most days it still does feel like that, and unfortunately the majority of those days I wish it would just end, but thanks to Madralyn, I have moments when I believe I can carry on. I can learn how to live with pain, and make a life. I can't begin to comprehend how I plan to get a job, get married, have kids, when there are days when I'm so sore I cannot move, but I have to hope there will be a day when I can, or else I won't have the strength to go on. I worry every day that my friends are going to leave me, because I'm too much to deal with. That my pain will get the better of me, and I'll lash out by accident, and lose the friends who I've fought so hard to stay up with. I feel my family slipping away from me, and I'm half convinced they would much rather my condition to either leave, or if that's not possible, for me to go away with it instead. Part of me says to leave, and then they won't have to deal with me and my mood swings, and my pain any longer. I only wish I could leave that, too.
Ok, I'm sorry for the really long ramble! I started and didn't realise just how much I wrote! Thank you so much for giving me a place where I can write this. Xox
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bittersweet and evocative
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bittersweet and evocative
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Posted: Tue Jun 23, 2009 11:12 pm
Thank you so much for your lovely comment, boldie!! It has given me so much hope that I though was lost. I, too, have found that online friends are the ones who have accepted me for who I am, pain and all. I think the hardest thing is that teenagers are mostly fickle creatures, who swap and change friends regularly, so my illness just hurried along the process. I have found a few who are willing to sit with me through the bad days, the days when I can't get the courage or strength up to talk or do much. But then there's the rest of my year group who are not so lenient.
I am so so happy that your daughter has got in contact with you! That brought a smile to my face for the first time today, and nearly made me cry. I think it's such an example of God's love and support, that when you ask for help, she comes back into your life. I hope that your amazing grandchildren, and your daughter, can make this tough time you're going through that little bit easier. The fact your daughter is going to help out around the house, is such a blessing, as I know it will make the load you're carrying lighter. I long for my family to offer the support they once did, and hopefully that will come with time, so I can begin to understand the way you must be feeling right now, surrounded once again by all those from your past and new future who love you. I'll pray to God in thanks, tonight, for helping you in such an amazing way as this. heart
The family I have made online is a true blessing, and have helped me accept the new developments in my condition. I find it hard to comprehend that anyone would be upset at the absence of me from their lives. I try to give as much as I can, and I try to offer support when they need it, but it never seems to equate to what they have given me, or live up to the standard they require to feel better. I think it's amazing that you say I can say anything here, and will still be respected. That is definitely a new concept to think about. For the past 49 months, I have kept lots to myself, preferring to write poetry and blogs, that I keep to myself, in order not to burden others. I felt judged the times I have let lose and spoken my mind, so I have become introspective. Berating myself silently, instead of telling others about what I'm going through. I feel different to my usual self as I write these posts. Like a slightly freer, less locked away, self. (If that makes any sense!) I feel so honoured that I have found people like you who are willing to listen to my rants, and offer support when their own lives are full of hardships and pain. I have tried to devote myself to always seeking out others who need help in my life, spending my time worrying about others, so I can pretend that my own pain doesn't exist. It's easier that way. But I'm slowly accepting that easy isn't always what God plans for you. I'm sure that you and Madralyn can understand where I'm coming from. I used to believe that God chose the strong and compassionate to do his will; that he picked those people to go through hard times in order to inspire others and spread the love of God. Yet when I got ill, and then didn't get better, my view changed. I can't seem to see myself as one of those strong people. I have been told frequently that God never gives someone a challenge that they can't cope with, but I still see myself the exception to that rule. I don't feel strong enough to deal with this, and I can't see myself coming out the other side a stronger and better person. Or, as a matter of fact, the spreader of hope. Especially when I feel so hopeless and helpless inside.
Anyway, I must go - dinner time for me now. I hope that you have been having a good day, and thank you so much for letting me get this out! I think it's going to be good for me to begin to share more about what's going on inside for me. God bless, you're in my prayers, and I hope that you and your family are well. xox Ailsa xox
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Posted: Wed Jun 24, 2009 6:16 am
Ailsa,
Remember when you said that you didn't feel strong enough to help others--wait lemme get the exact quote...... "I felt judged the times I have let lose and spoken my mind, so I have become introspective. " "Introspective" is the word I was looking for..... Do you think you're still in stage 1, where you feel isolated and thereby denying what YOU need? YOU come first--Always. And you have to get that in your head. Madralyn keeps telling me all the time, when I'm not feeling good or feel tired and fatigued from carrying all this pain around. She says that "I" come first, before this guild, and before other people and before anything else that is in my life. And that's so true. You have to take care of yourself first. Let me give you an example.... I live in Oklahoma. TORNADO ALLEY OF THE WORLD. People have lost their homes, their livestock, their farms, their furniture, etc.... and on t.v., they always say, but I have my life, or my family survived this, or thank God we ALL still have our health.
People like us DON'T have our health. So, you can take away everything else, and we're still left without our health. That's why YOU come first. Because without your health,.... (imo) you don't have anything.
"I have tried to devote myself to always seeking out others who need help in my life, spending my time worrying about others, so I can pretend that my own pain doesn't exist."........ Why? Are you not as important? Do you discount your feelings, so others can feel better? But what about you, Ailsa???? You are SOOOO important to the world. You are finally opening up. You feel "freer", I think you said. Doesn't that feel good, to just let go? I told you that whatever you post in here regarding your feelings and such, that I would always respect you. Please, let yourself go alittle at a time, so you feel comfortable all the time. That means you're accepting yourself. "I" need you to feel comfortable with yourself. Because, you have many, many things to offer (despite your health) and I don't think you even realize it yet. (scenario...) When someone comes into this particular thread, and they read everything that's going on with you, me and Madralyn, they're going to see your strength and your courage and perhaps teach THEM a few things or two. A lot of people are ignorant to the fact of a chronic illness because they've never had to go through it. They've been healthy all their life. And then one day, they get news from the doctor that their health is deteriorating, and they'll remember the post that you, or I or Madralyn made, and they will fully understand it, because it's now happening to them. You are a role model for so many people. I hope I can say this, because I'm going to anyway,.... but Madralyn told me you've been writing to me in the hospital. I had NO clue. And in learning that news, I was awestruck. The fact that you're still in the hospital and you can write down "some" of your feelings. ...... My God !!!!! That's so wonderful !!! I couldn't believe it! I literally felt the strength from you coming off these pages! (I swear!)
In your last post you said (from quote) "I can't seem to see myself as one of those strong people. I have been told frequently that God never gives someone a challenge that they can't cope with, but I still see myself the exception to that rule. I don't feel strong enough to deal with this, and I can't see myself coming out the other side a stronger and better person."
Please oh please do not think this way. You are NOT the exception of the rule because you ARE strong, you WILL get slightly better. It's attitude. It may be unconscious attitude, but you still have one. I think you are already a stronger and better person, personally. You have the will. And with that will, there's so much you can do. Your mind is sharp. Sharp as a tack. Seriously.... I think what you need is a [soft, but gentle] HUG! Everyone needs a hug, and right now, I'm gonna give you a hug, because YOU DESERVE IT! [[[[ HUGZ ]]]] Did you feel it? lol Oh, I think I saw you smile, Aisla..... You are a genuine piece of God's work..... (In a good way) And God doesn't EVER make JUNK. If you want to continue to write in this thread, by ALL means, please do. No one will think less of you. In fact, they just very well might feel the strength in you. I know "I" do. Please start feeling better so you can get out of the hospital and be in your own comfy bed or chair. God bless Y O U, and you're in my prayers, as well. 
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bittersweet and evocative
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Posted: Wed Jun 24, 2009 11:15 pm
Thankfully I'm out of hospital now - I was in there for some more tests, and they've let me out until next week when I go back in to get my optic nerves tested, and then be paralysed. They're hoping that if they remove all feeling and connection between my brain and the waist down, then they will be able to do more intensive physio on my foot and leg, without creating the additional pain. Currently I can't move it at all without someone else doing it for me, and it hurts so much that all it does is make things worse and deteriorate. I'm quite nervous as my doctor's only done it twice before, but I guess someone needs to be the hamster for others to benefit later in life right?
Yeah, I spend lots of time in hospital so I figure that I might as well get on with everything while I'm there. I do lots of my school work at home, emailing the teachers my completed stuff, and getting them to call me. At the moment they also have to enlarge all of the sheets so I can read them. I look quite odd with my large A3 sheets of paper in class, but any other way I wouldn't be able to read the notes! Spending time in hospital really gives you a whole new perspective of the world. Before I was admitted for my 4 and a half month stay (unplanned, but I fell into a coma), I thought that the most important thing in life was being accepted by everyone at school, getting good grades, and living like a teenager. I pretty soon realised that wasn't all there was to life! I was in the Children's Ward at the start, so was surrounded by some of the most amazing people I have ever met, who were going through some of the worst times that I could have ever imagined. It was that that has inspired me to begin my quest for daffodils, and to raise money in the 'real' world (if you can call it that) for the Child Cancer Foundation. I have already lost my hair twice in the past 2 years, because of my medication and treatments, but I then shaved off the two inches that had taken 14 months to grow, to fundraise money. I was sponsored $1,358 NZD, which was the largest amount raised for any participant under the age of 22 surprised My hair seems to be growing back ok now, but every couple of days parts just fall out in my hands.
Boldie, the way you quoted parts of my previous message is really meaningful, because it reminds me that people are listening. That sounds really weird, but somedays you need to be reassured about that sort of things. Have you heard the song Here's My Life by Barlow Girl? It's a beautiful song, and helps me when some days seem impossible. I've put the lyrics below to give you an idea what it's about >< Once again I said my goodbyes
To those i love most.
My heart feels that familiar pain,
as I long for hope
'Cause this road is hard
when I feel so far.
And God I'm crying out tonight,
'cause I've given you my life.
But I'm tired and im missing what's behind,
So once more here's my life.Anyway, how have you been feeling? I hope that you've been having a good day and that your pain is behaving itself! Lol I totally understand when you say that people like us DON'T have our health. That always frustrates me when people say 'Oh you should be so grateful for what you've got - you're alive, you're healthy, you're well.' Most of the time none of those feel too real. One of my favourite songs goes, I still have my health, at least that's what they tell me. If wellness is this what in heck's name is sickness That for me hits hard because I have often pondered that thought. I know things could be worse, but the other side of the coin is that things could be much better, you know? Your comment has left me thinking a lot as I have never considered putting myself above everything. I'm not claiming that I am a selfless person - I could never say that I am or have ever been completely selfless - but I just have never thought that I come before everyone else. I have always found someone or something to occupy my time with, when I could be focusing on my own life. Part of it I know is distraction method, helping me disassociate myself from the world. Some days that's all that keeps me going - being able to live elsewhere and convince myself that the person called Ailsa whose in so much pain is not actually me, but an acquaintance. It's hard to explain what the feeling is actually like, but I think the best word to describe it is relief. Or comfort, almost. A sense that it's all been a bad dream, and that you're in fact a successful, chronic pain-free woman. I used to believe that my illness would cure itself and that would be me one day, but I've abandoned that idea now. I realise that to get through I need to be more realistic. I'm now aiming for having something which slightly resembles a life, while still in pain. Is that even possible?!
I really hope that you're right when you say that one day someone will "get news from their doctor that their health is deteriorating, and they'll remember the post that you, or I or Madralyn made, and they will fully understand it, because it's now happening to them." That would make some of what I've gone through, as well as yourself and Madralyn, worthwhile. To know that we've helped someone else cope with bad news, or fully understand what someone they know is going through. I think that to properly see where we're coming from as we write in this thread to one another, you need to have personally felt the pain, and experienced the life that we live, but I think it's just as important that people who are living around someone who has chronic pain should speak to or read about someone's experiences with pain. Until you hear from the person themselves, you have no idea what it's like, or how their life has been altered because of a freak accident, a diagnosis, or constant pain. I hope that I can be a part of this education, per say, or this revealing of what a life with chronic pain is like. I've struggled due to the lack of people near me who have CRPS/RSD or any chronic pain condition, and I want to help others not have to go through the same feeling of isolation as myself. Which is why I'm beginning to open up and share what's going on in my conflicted, confused head. I hope there comes a time when someone here in the Gaian world discovers this thread, reads our posts, and realises they are not alone in their struggle.
Thank you so much for the hugs. And I did smile heart Just as you predicted! I'm sending you some MASSIVE hugs back to you!! It's so nice to be back home, my own bed, and my own room! Plus food that's not repeated every two weeks. I know the entire menu for breakfast, lunch and dinner off by heart, as I've gone through it about 9 or 10 times now. At least! In addition my cats are at home, and I miss them so so much when I'm away. Lucky for me, in the children's ward they have the SPCA bring in animals each week. Cookie the dog comes every Wednesday morning - she does tricks for you and you're allowed to have her sit on your bed whee They brought kittens in one tuesday which were ADORABLE and I got to have one sleep on my knee for the majority of the morning. Then there were the rabbits, and the police brought in some of their puppies which were in the process of being trained. They were great...until one of them started barking obsessively at me. I had no idea why, either, until one of the officers saw that I was on a Ketamine drip, and he informed me that the dogs were trained to sniff that out, being an illegal drug here in NZ without a prescription. What a fun morning that was!
Here's a little picture to emphasise the hugs that are coming your way! Oh and a picture of my cats <3  My cat is Dolores, who is the one under the other cat. The cat on top is her twin sister, my sister's cat, Millie. I've had them since I was 2. Sorry the image is so big!! O.o I'm sending you lots of hugs, Boldie. To let you know I'm thinking of you, to thank you for ALL the hugs attached with your last comment, and also the picture is just so cute! lol slightly childish, but we need some cartoons once in awhile ><
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Posted: Thu Jun 25, 2009 3:29 am
Ailsa,
I'm so glad that you're home in your OWN bed, and in your OWN surroundings. That's truly a blessing to hear that! What do your parents think about what you're going through? Do you have other siblings? You asked about me........ Well..... lol..... I've gotten about 5 hours between the last 48 hours due to the pain. I try to take naps, but somehow, they're just not coming to me. I'm fatigued, but that doesn't seem to matter to my body at this time. In fact, yesterday, I totally forgot to take ALL my pain meds for in the morning. Now I know why I was hurting more yesterday than all the other days. And I've seem to have developed a limp in my gait. Everytime I step on my right foot/leg, I get this sharp, shooting pain in my lower lumbar. Hmmm, that's something new. Now my left leg is fatigued because I've been putting all my weight on that leg for a little bit. I'm almost out of one of my pain meds, which I've called in--it's a heavy narcotic (I think schedule 2), so hopefully it'll be ready to be picked up VERY soon. I have 12 left. Not good. I've been trying to rest throughout the day, but sleeping seems to be not an option for me. I don't know why. Maybe because the pain is so blasted much. lol My attitude (according to my husband) lately, sucks. He hates it when I get like this--all closed up, and don't want to talk about it, and when some of our friends come over, I just leave the room, don't say anything, and go into the bedroom or come into the computer room. I don't want to talk about how I feel, and KEEP REPEATING myself, when someone else new comes along. I have a cute little quote about that. Lemme see if I can find that........ and now I just found another quote about you--and hopefully it'll give you a little chuckle concerning your hair.
Quote: I have already lost my hair twice in the past 2 years, because of my medication and treatments
Hopefully you smiled on that little quote. I know I sure did. lol
Getting back to you, Ailsa, do you know of this website?
A Necessary Read for When You Can't Do Anything Else....
I think you'll find most things in that "magazine" very interesting. I know I sure did. That's how I learned of the steps a person goes through when they've been diagnosed with a disease. I refer back to it quite often. Actually, TO ANYONE who's reading these posts, a person can find that site worthwhile to go to; even if they're healthy. It gives them an insight to people with an "invisible chronic disease". And I think that's what makes ignorant people talk, say, judge, or whatever to the chronically ill people. They are all too often misinformed and judge way too quickly to another person, because they don't understand. Let me know if you sign up for the "magazine", and let me know what you think. I think I usually get 2 episodes a week from them; very informing.
Well, I'm so glad that you're out of the hospital at this time and can love on those cute little girls you have. I know when I was in the hospital for tests, my husband brought up a picture of Dakota (Coda), so I could see her on that table you have over you when you eat, etc. I felt she was there with me in spirit.
(She's 1/2 pug and 1/2 cocker spaniel)
Well, that's about all I have to say for now. I'm so pleased, though, you found (or rather Madralyn let you know about) this thread I made. Maybe more people will "come out" and share their experiences with us. Ailsa, you are an incredibly brave person. I hope the next few days/weeks to come, you live with minimal pain. God bless.... (Sorry about the size of the text after the URL. I can't seem to get it back to the size I wanted. I did it because of your eyesight, but now I can't get it back without it printing the words "size, etc....) Sorry.........
P.S. Maybe to help get your mind off everything, you'd like to try a few "fun and games" ??? It's in this guild, just look for the topic. (I'm also in charge of that) There, I think, are some neat games to play. Have fun!
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bittersweet and evocative
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Posted: Thu Jun 25, 2009 11:00 pm
Thank you so much for enlarging the size! That made it a lot easier to read ><
You're puppy is so cute!!! She looks so adorable! And Dakota is such a lovely name, too! heart
In response to your first question, I have an older sister who has just turned 20. She currently still lives at home, as the university is really near us, and as she's studying full time she can't afford to live in a flat as of yet. We tend to get on most days, but it always seems to be when I'm having an off day, she is tired or has little patience, so things get a little tense. My parents both work full time and are really busy, so there are days when I think my illnesses and medical happenings are a bit too much to deal with. I think they know that I don't want it to be this way, but sometimes it feels like they think I'm content with the way things are, and I'm not motivated to get better. This is not true at all. Pain gets in the way of me getting better - not my lack of willpower and longing. On the whole, I think it's just gone on for too long. With each doctor's visit, we get given a longer recovery time (the last one said gently that that recovery time will be the length of my life), and we get a worse diagnosis. At the beginning, we could cope with this as a family, but now I feel like such a burden and a challenge, so I tend to withdraw into myself, and not bring up my conditions or any medical related topics if I can avoid it. I know how tiresome it must be for them to take me to all my appointments, but some days it's like they think that I don't realise how much of a strain I put on them, or they think that I'm not grateful for what they do. I tell them as much as I can, but my words fall on death ears. It seems they would prefer to go by their own opinions and judge me based on their own thoughts.
I very much like the bald head quote!!! It was really cute and made me laugh <3
I had heard about that website before, but hadn't yet had the opportunity to go on it. I just took a look and it looks really good! I've signed up to their email mailing list <3 I think that you make a VERY good point that "anyone who's reading these posts" should go to the website. It puts everything pretty simply, so that if you experience chronic illness any time in your life, yourself or through a loved one, you have a strong understanding of what it's like for those involved. I think that there's a significant difference between seeing someone who's living with chronic pain, to UNDERSTANDING what that person is going through. I was having this conversation with my sister a few nights ago, as she was saying that she thought that living with me gave her the same understanding of what it's like for someone who has chronic pain, as another person who's experienced it themselves. I had to disagree with that one. It certainly helps to see the strain the pain (...did I just rhyme?!) puts on someone, but I don't think that gives you the same knowledge as a fellow pain sufferer. There's a line between recognition and a full understanding. However, on saying this, I think that checking out a website, like butyoudon'tlooksick, is really valuable as you can learn about multiple people's experiences, giving you an idea of what it's like for all those people who have an invisible chronic illness, and who have to learn how to live alongside the pain. I think that that's one of the biggest challenges I've faced, and am still facing: trying to rearrange my life, so that I can continue doing all the things I love, without my foot getting aggravated. Some things, like playing my saxophone, are definitely a mission and a half, but one step at a time, as they say.
That pain that you were describing in your lower lumbar, is what I get in my right leg, also. I have a very noticeable limp as I walk, and I almost seem to hop, as I can't put more than about 5% of all my weight through that right leg before I get too sore to move. My left leg HATES it. It has a very bad temper also, and likes to collapse on me at the moment, which certainly doesn't make mobility any easier!!
You say that you're attitude sucks lately, according to your husband? You're allowed to have a sucky attitude! You said to me not that many days ago, that "I" am the most important and that it was fine that there were days, weeks at a time, that I was upset, and annoyed at the pain. Well, Boldie, it's time for me to tell you the same message! You are ALLOWED to have a bad attitude during times of bad pain. You are ALLOWED to to out of the room, and isolate yourself. If that's what helps you get through the pain, then do it. If going on the computer, and not having to talk about how you feel, then go. I know more than many how shutting yourself up CAN help get through some of the hardest times. I know it's not the easiest option for those around you, but once again, it is YOU who you need to look out for, so you should follow your own instinct, and feelings. It takes awhile, and I think those around me are still in the 'learning' stage, but there will come a time when people will realise why you leave without saying anything. They will understand that it is because it helps you, and it is what allows you the next time to enjoy yourself, or helps you cope with the next 24 hours. I pray that that time will come sooner rather than later for you. God will speak to those who socialise with you, and reassure them it's nothing to do with THEM, but to do with YOU.
And I love the quote about repeating yourself when asked how you are. It's so so true!! Some days it would be so much easier if people just pretended that I wasn't ill, and acted around me just as they would around our other friends. It's important that they know the truth about I feel, but when I say "I don't want to talk about it," or something along those lines, it would be so much better if they did as I asked and didn't push it. When I'm about to break, I can't even to begin to say how I feel. My psychologist knows this!! I've just started working with her, as I didn't connect very well with my past ones, but it seems to be going well so far. She gets me a lot more than her proceeders (is that the right word?! It's been a long day!), and so I'm hopeful that we'll be able to actually work together. I've been praying about that for months now, so I think that God has helped me find someone suitable and that He's happy for me to work with.
Well, I'll let you go now, but I hope you've been having a great day! Thanks for the chat, and can't wait to hear back from you whee
xox Ailsa xox
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Posted: Fri Jun 26, 2009 6:47 pm
I do not have cronic pain myself. But some one very near and dear to me does. Her name is Madralyn, for those of you who did not know she is my aunt. She has been battling her dragon for over seven years, and right when that dragon thinks he's taking her down, she whips out another magical embloom of some sort that keeps her fighting.
That woman has gotten me through so much stuff, looking back i don't think i would have ever made it through tough times. I do feel bad when i complain to her about my stupid little teenage problems cause i forget that she has RSD. But i do not feel sorry, I'm their for support. Just like My unlce and cousins. She does not show to the world that she has it, but she does not hide it. If some one has a question she is there to answer it to the best of her ability.
She's a kind gentle woman that is a force to be reckon with. I'm one of the few people who has seen her in pain and it hurts to see her in pain. I have learned many things from Madralyn.
I think she is the only adult i know that will not talk to me and treat me like a child. I remeber one thing she told about people with cronic pain "Never say 'but you look soo go'"she explained " when people who have cronic pain are feeling better they might go out to the store or to dinner. and when they tell their friends or collegues or who ever about their pain they come up with that statement and someimes sadly they will not beleive them."
I have learned to say "I'm glad you are doing good today"
I may not feel her physical pain, but I can see that she is in pain somedays.
I talk to her mostly over the phone, (i don't have a car to drive, couple cities over but still =)), and some days you can tell when she's tired or when she's in pain. It sucks! =(
But I'm soo gald that she never gave up or will give up cause without her I will forsurely go insane in the membrane.
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