Only a few hours remain til the official start of Invisible Illness Awareness Week and the group of conferences sponsored by Rest Ministries, ChronicBabe, et al. . . Please take a moment to look at the schedule of speakers and mark off the ones you must hear live, as well as those you will listen to via Blog Talk Radio's archives. This is a wonderful opportunity for everyone to be able to "attend" a top-notch conference about living with illness. There is no charge and you don't have to leave your home (heck, you don't even have to change out of your pj's if you don't want to!) to be part of this event. Simply click on the link above for Invisible Illness Awareness Week and you will be directed to the home page. Follow the instructions for listening to the interviews, and take some time to read the blog posts and other information available.
See ya there!
Sunday, September 13, 2009
Wednesday, September 9, 2009
Patients For A Moment is up at Getting Closer To Myself
I just wanted to let everyone know that the latest edition of the blog carnival Patients For A Moment is now up over at Getting Closer to Myself. I want to thank Leslie for her hard work in hosting and putting together this edition of the carnival, as well as for including my post in it! Please take some time to head over and read some great writing!
Monday, September 7, 2009
Pitting One Illness Against Another
As I read the blogs of so many people affected by chronic illness, invisible or not, I find that although we all have so much in common, there seems to be a faction that tries to pit one illness against another. It's almost as though some people feel the need to claim that their situation, pain, symptoms, etc.. are worse than others and therefore more important.
The truth is we can all learn from one another and be a support to one another. I hate to see nasty infighting wasting peoples valuable energy. Why does it have to be a constant battle of who is more miserable? It seems to me that there is plenty of misery to go around.
The blogs (and people) I am drawn to are the ones who are passionate about helping themselves and others. While it is certainly admirable to raise awareness and even funds for medical research about your illness, you mustn't lose sight of the larger picture. Numbers vary, but there are at least 76.5 million people in the US suffering from chronic pain alone. If we band together we are much more likely to be heard by the mainstream and to bring about change that will affect all of our lives in a positive way.
In one way I am lucky, if you could call it that, because I suffer from multiple illnesses, so I am pretty much accepted by most groups. But if you have one illness or twenty, it is still frustrating, scary, painful and life-altering.
As we head into Chronic Illness Awareness Week and National Pain Awareness Month, let's try to put aside our differences and focus on all we share in common. We all would like for people to understand us better and what we live with on a daily basis. We all would like to see better health care that helps to prevent illness instead of just putting a band aid on a huge problem. We would all like to be treated with respect and dignity and to raise awareness. If we focus on the things we all share in common, we can accomplish so much good, and whether that good involves a "cure" for my particular illness or not, that's a legacy I want to be part of!
The truth is we can all learn from one another and be a support to one another. I hate to see nasty infighting wasting peoples valuable energy. Why does it have to be a constant battle of who is more miserable? It seems to me that there is plenty of misery to go around.
The blogs (and people) I am drawn to are the ones who are passionate about helping themselves and others. While it is certainly admirable to raise awareness and even funds for medical research about your illness, you mustn't lose sight of the larger picture. Numbers vary, but there are at least 76.5 million people in the US suffering from chronic pain alone. If we band together we are much more likely to be heard by the mainstream and to bring about change that will affect all of our lives in a positive way.
In one way I am lucky, if you could call it that, because I suffer from multiple illnesses, so I am pretty much accepted by most groups. But if you have one illness or twenty, it is still frustrating, scary, painful and life-altering.
As we head into Chronic Illness Awareness Week and National Pain Awareness Month, let's try to put aside our differences and focus on all we share in common. We all would like for people to understand us better and what we live with on a daily basis. We all would like to see better health care that helps to prevent illness instead of just putting a band aid on a huge problem. We would all like to be treated with respect and dignity and to raise awareness. If we focus on the things we all share in common, we can accomplish so much good, and whether that good involves a "cure" for my particular illness or not, that's a legacy I want to be part of!
Friday, September 4, 2009
The Caregiver Role
As Invisible Illness Week approaches I find myself reflecting on the caregivers in my life. It is so easy to get caught up in my own drama, whatever is going wrong at the moment with my health, the things it causes me to miss out on, etc. . . we all know the drill. But what about the people who are there for us everyday? Do we take the time to really appreciate what they go through? I know I don't - at least not as often as I should. Chronic illness has made me selfish at times, something I don't like to admit out loud or even to myself. I tend to see how my illness affects me, while ignoring what impact it has on my loved ones and friends. I get angry when they don't understand everything the way I want them to. I expect them to always be available and willing to help. That isn't only unrealistic, it is unfair.
I happen to live with my mom. We are caregivers for one another, each one doing what we can for the other as our own health problems allow. It is all to easy for me to forget the terrible toll it takes on my mom to watch me when I am in pain, or scared and frustrated, or facing yet another painful test or procedure. She is first and foremost my mom, she loves me and wants to protect me from all bad things. That isn't possible when someone is chronically ill. As much as we might wish someone could wave a magic wand and make things all better, it isn't a reality. While I know this, and of course my mom knows it on an intellectual level, I can see the pain in her eyes when she can't "fix" things for me. Sometimes I get angry, thinking why does she need to fix this, why can't she just do what I ask of her right now and let it go. That's the selfish part of me, the one who hurts and wants her needs met NOW. But if I step back and look at my mom, I realize that my being ill has changed her. She looks older and more frail, the result of lots of worry and sleepless nights more than product of aging.
I guess what I am trying to learn, and maybe to pass on to others, is that we have to be very careful to remember that the people who care for us, who are our caregivers, are people too. They have feelings and emotions about our illness that are their own, and they have a right to those feelings. They have a limit - physically and emotionally and we must always be mindful of that limit and not push them beyond it. If we want others to respect and understand our boundaries, we have to offer that same respect and understanding back. I am trying to look at things from my mom's perspective more often. I think about how scared and frustrated SHE must feel watching me suffer and not being able to do a lot to alleviate it. I find myself in awe of her strength and love, the kindness she shows me with all the little things she does for me everyday.
Whether your caregiver is your spouse, your child, your friend or even a hired helper, you need to take a hard look at the PERSON behind the role and acknowledge their dignity, their struggles and their feelings. Put aside your own needs, even if only for a few moments, and be grateful for your caregiver. Say a prayer for them, ask God to grant them strength, peace and to bless them abundantly for the loving care they provide. You will find yourself having a much better relationship if you allow for honest communication between yourself and your caregiver. Make sure that the person who helps you gets some time and attention for themselves.
During my recent flare my mom was home with me round the clock the first week, and I finally had to order her to resume attending her senior center activities. She needed to have someplace she could go to get away from the situation for a little while. Somewhere that she could meet with her friends and talk, or just laugh and do something fun for herself. It wasn't doing her, or me for that matter, any good for her to sit around the house day and night watching me hurt. I felt better when I knew she had something good to look forward to, and I think she felt better knowing she could take a break from caring for me and just be herself, not my mom, not my caregiver, just the woman she is.
It is so easy to take our anger and frustration and hurt out on the people who are closest to us. It is easy, but so dangerous. These relationships are much too important not to nurture. Take a moment today to think about how hard your caregiver works to make things better for you, and then make sure you let that person know how much you appreciate them and all they do. A little kindness goes a long way.
I happen to live with my mom. We are caregivers for one another, each one doing what we can for the other as our own health problems allow. It is all to easy for me to forget the terrible toll it takes on my mom to watch me when I am in pain, or scared and frustrated, or facing yet another painful test or procedure. She is first and foremost my mom, she loves me and wants to protect me from all bad things. That isn't possible when someone is chronically ill. As much as we might wish someone could wave a magic wand and make things all better, it isn't a reality. While I know this, and of course my mom knows it on an intellectual level, I can see the pain in her eyes when she can't "fix" things for me. Sometimes I get angry, thinking why does she need to fix this, why can't she just do what I ask of her right now and let it go. That's the selfish part of me, the one who hurts and wants her needs met NOW. But if I step back and look at my mom, I realize that my being ill has changed her. She looks older and more frail, the result of lots of worry and sleepless nights more than product of aging.
I guess what I am trying to learn, and maybe to pass on to others, is that we have to be very careful to remember that the people who care for us, who are our caregivers, are people too. They have feelings and emotions about our illness that are their own, and they have a right to those feelings. They have a limit - physically and emotionally and we must always be mindful of that limit and not push them beyond it. If we want others to respect and understand our boundaries, we have to offer that same respect and understanding back. I am trying to look at things from my mom's perspective more often. I think about how scared and frustrated SHE must feel watching me suffer and not being able to do a lot to alleviate it. I find myself in awe of her strength and love, the kindness she shows me with all the little things she does for me everyday.
Whether your caregiver is your spouse, your child, your friend or even a hired helper, you need to take a hard look at the PERSON behind the role and acknowledge their dignity, their struggles and their feelings. Put aside your own needs, even if only for a few moments, and be grateful for your caregiver. Say a prayer for them, ask God to grant them strength, peace and to bless them abundantly for the loving care they provide. You will find yourself having a much better relationship if you allow for honest communication between yourself and your caregiver. Make sure that the person who helps you gets some time and attention for themselves.
During my recent flare my mom was home with me round the clock the first week, and I finally had to order her to resume attending her senior center activities. She needed to have someplace she could go to get away from the situation for a little while. Somewhere that she could meet with her friends and talk, or just laugh and do something fun for herself. It wasn't doing her, or me for that matter, any good for her to sit around the house day and night watching me hurt. I felt better when I knew she had something good to look forward to, and I think she felt better knowing she could take a break from caring for me and just be herself, not my mom, not my caregiver, just the woman she is.
It is so easy to take our anger and frustration and hurt out on the people who are closest to us. It is easy, but so dangerous. These relationships are much too important not to nurture. Take a moment today to think about how hard your caregiver works to make things better for you, and then make sure you let that person know how much you appreciate them and all they do. A little kindness goes a long way.
Tuesday, September 1, 2009
I won!
I am a voracious reader, and my recent flare has given me a chance to indulge this pastime even more than usual. I love many genre's, but am huge fan of the Classics, especially of Jane Austen. I have read and re-read her works, watched the BBC's mini-series on Pride & Prejudice too many times to speak of, and have enjoyed biographies and books written about the characters and stories Jane Austen created. I came across a wonderful site by another blogger, who shares both my love of reading and of all things Austen. Her blog is called The Written Word and I encourage you to check it out. The blogs owner, Stephanie, had a contest going linked to an interview she had done with author Laurie Viera Rigler, who wrote Confessions of a Jane Austen Addict as well as Rude Awakenings of a Jane Austen Addict. I entered and was lucky enough to be selected as one of three winners who will receive a copy of each book! This was just the pick-me-up I needed while feeling so awful physically! I want to thank Stephanie as well to encourage others to check out her site and the 2 books written by Laurie Viera Rigler.
Tuesday, August 25, 2009
September is Pain Awareness Month
I have blogged about my own experience of living with pain, both chronic and acute. Now I am asking you to do something to help me and the 76.5 million other Americans who live in pain. Please support the American Pain Foundations Power Over Pain Action Network in raising awareness and helping to dispel myths surrounding pain and the treatment of it. To find out more about what you can do, as well as to learn more about the organization, please go to Conquering Pain Together to get all the details on what you can do to help. There is an easy to use on-line petition you can sign, as well as a wonderful list of 10 things you can do in 10 minutes. Thank you in advance for your helps and attention in this most important matter.
Monday, August 24, 2009
Looking for Suggestions
Okay, so I am still in pain, and except for trips to the restroom I am pretty much bed-bound at the moment. I am watching TV and DVD's, I have been reading (as much as I can concentrate with the pain), praying and getting on-line very briefly. I have a puzzle book which I am going to give a try for a change of pace. I am wondering what all of you do when you are sick, in a flare or in pain to occupy your time and to try to take focus off what hurts? Thanks in advance for your suggestions!
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