No one can truly feel someone else's feelings or pain. One of the hardest parts of being in physical (and I am sure other types of pain too) is that you feel very alone sometimes. There are times when I just look at the people around me bustling about, always busy, getting so much done ... and I just feel like none of them know what pain I am struggling to control every single day. I know that I am probably wrong. MANY people carry around alot of pain every day and EVERY person has something weather physical pain, or emotional pain, or stress, or memories from a bad past ... everyone on the planet has something in their life that can cripple them if they let it. But, when physical pain stops me from sleeping or from being able to work outside of my home, or even eat many times ... I begin to feel like I am alone and no one understands how it feels. Many of you who ready this blog do suffer from daily physical pain and illness - and it is comforting to have friends who understand when I say that I had to cancel another appointment, that I couldn't sleep because I had to breath through the pain .. it feels good to know that I am not just crazy - but that there are others who know how I feel to some degree.
For those of you without chronic physically pain, sometimes the sweetest thing you can do for your loved one who is in pain is to try hard to understand how we feel. My husband is great at this - he often asks me specific questions about what my pain feels like (often I can't describe it!) and he does his best to understand. Last October we both got the swine flu and were super sick with temps at 104. Thankfully he was sicker first and then when he started to be able to get around I got sicker - so we took care of each other. One of the main symptoms of the swine flu was a super sore chest and the pain was almost identical to the pain I get with paricarditis. Also, the flu brought aches and fatigue - exactly what I feel on bad days. My sweet husband who always wants to eat had a day when he didn't want to eat or drink much of anything - and that is how I spend probably 75% of my days nausea being a almost constant feeling for me. I hated seeing him sick, BUT- that experience was really good and I feel like in a way it was a small gift from God to us. It helped him have some reference for when I am laying around with chest pain and when everything hurts and I am super tired. It gave him a look at how I feel much of the time and it gave me a look at how sad it makes him to see me sick so many times. Both those of us with pain and those without need to do our best to put ourselves in the other's shoes whenever possible.
Friday, May 28, 2010
Understand me - or at least try to!
No one can truly feel someone else's feelings or pain. One of the hardest parts of being in physical (and I am sure other types of pain too) is that you feel very alone sometimes. There are times when I just look at the people around me bustling about, always busy, getting so much done ... and I just feel like none of them know what pain I am struggling to control every single day. I know that I am probably wrong. MANY people carry around alot of pain every day and EVERY person has something weather physical pain, or emotional pain, or stress, or memories from a bad past ... everyone on the planet has something in their life that can criple them if they let it. But, when physical pain stops me from sleeping or from being able to work outside of my home, or even eat many times ... I begin to feel like I am alone and no one understands how it feels. Many of you who ready this blog do suffer from daily physical pain and illness - and it is comforting to have friends who understand when I say that I had to cancel another appoitment, that I couldn't sleep because I had to breath through the pain .. it feels good to know that I am not just crazy - but that there are others who know how I feel to some degree.
For those of you without chronic phyicaly pain, sometimes the sweetest thing you can do for your loved one who is in pain is to try hard to understand how we feel. My husband is great at this - he often asks me specific questions about what my pain feels like (often I can't describe it!) and he does his best to understand. Last October we both got the swine flu and were super sick with temps at 104. Thankfully he was sicker first and then when he started to be able to get around I got sicker - so we took care of each other. One of the main symptoms of the swine flu was a super sore chest and the pain was almost identical to the pain I get when there is swelling in the lining of my heart. Also, the flu brought aches and fatigue - exactly what i feel on bad days. My sweet husband who always wants to eat had a day when he didn't want to eat or drink much of anything - and that is how I spend probably 75% of my days nausea being a almost constant feeling for me. I hated seeing him sick, BUT- that experience was really good and I feel like in a way it was a small gift from God to us. It helped him have some reference for when I am laying around with chest pain and when eveything hurts and I am super tired. It gave him a look at how I feel much of the time and it gave me a look at how sad it makes him to see me sick so many times. Both those of us with pain and those without need to do our best to put ourselves in the other's shoes whenever possible.
For those of you without chronic phyicaly pain, sometimes the sweetest thing you can do for your loved one who is in pain is to try hard to understand how we feel. My husband is great at this - he often asks me specific questions about what my pain feels like (often I can't describe it!) and he does his best to understand. Last October we both got the swine flu and were super sick with temps at 104. Thankfully he was sicker first and then when he started to be able to get around I got sicker - so we took care of each other. One of the main symptoms of the swine flu was a super sore chest and the pain was almost identical to the pain I get when there is swelling in the lining of my heart. Also, the flu brought aches and fatigue - exactly what i feel on bad days. My sweet husband who always wants to eat had a day when he didn't want to eat or drink much of anything - and that is how I spend probably 75% of my days nausea being a almost constant feeling for me. I hated seeing him sick, BUT- that experience was really good and I feel like in a way it was a small gift from God to us. It helped him have some reference for when I am laying around with chest pain and when eveything hurts and I am super tired. It gave him a look at how I feel much of the time and it gave me a look at how sad it makes him to see me sick so many times. Both those of us with pain and those without need to do our best to put ourselves in the other's shoes whenever possible.
Thursday, May 27, 2010
Ways to Help!
There are times (in particular when I am super sick and in the hospital or have just had surgery etc) when I feel smoothered! There have been times when I have been in the hospital and have felt like I had so many visitors who stayed for so long that I felt like I had no idea how to keep my energy up enough to entertain everyone! I have at times actually had to tell the nurses to keep people way because either i was so sick that I couldn't have people in my room, or I was so tired from visits that I needed to sleep! I love having people that are close to me stop by to visit or say a prayer ... it gets so lonely when you are laid up sick. But I can get too much so always ask me if it is too tiring for me. (I know I touched on this in an earlier blog - but it bears repeating!) and it brings me to the thoughts for today:
I think one of the reasons people visit is because they don't know what to do to help someone who is super sick. So, here are some other ideas that can be helpful if you know that the person you love is sick and can't have too many visitors - or just ideas that you may not think of to show your concern:
1. Notes and cards - sometimes words of encouragment are the best thing and a card will be able to encourage over and over again. Bible verses are great too!
2. Meals - now that I am married I understand having to cook meals for my family even when i am not feeling like eating. some of the sweetest acts of love have been people bringing frozen food or soup or pudding over that I could reheat whenever I needed it!
3. cleaning house - it is always nice especially if you have been in the hospital to come home to a nice clean house - keep in mind that the sick person will almost NEVER actually tell you they need help cleaning so find a way to ge a key and clean or just show up and tell them that you are going to clean the house!
4. flowers - always a good cheery way to let someone know that you care.
5. running errads - it can be really hard to get out of the house and having someone offer to go to the bank, store, pick up medications can be so helpful - those things often get really backed up when you are sick!
One other thing: when someone (like me) is sick or in pain for a long time it can be easy to feel forgotten. Everyone is super helpful at first - but then you begin to feel just like a burden to everyone around you and even though you have bad days and bad weeks you feel like you don't have permission to be sick - and just a card or some of the helpful things that people do when you are "really" sick would be comforting from time to time. I have some very wonderful people in my life (my family and then friends!) who are great at remembering that sometimes some encouragment is good. To all of you I am so thankful!!
I think one of the reasons people visit is because they don't know what to do to help someone who is super sick. So, here are some other ideas that can be helpful if you know that the person you love is sick and can't have too many visitors - or just ideas that you may not think of to show your concern:
1. Notes and cards - sometimes words of encouragment are the best thing and a card will be able to encourage over and over again. Bible verses are great too!
2. Meals - now that I am married I understand having to cook meals for my family even when i am not feeling like eating. some of the sweetest acts of love have been people bringing frozen food or soup or pudding over that I could reheat whenever I needed it!
3. cleaning house - it is always nice especially if you have been in the hospital to come home to a nice clean house - keep in mind that the sick person will almost NEVER actually tell you they need help cleaning so find a way to ge a key and clean or just show up and tell them that you are going to clean the house!
4. flowers - always a good cheery way to let someone know that you care.
5. running errads - it can be really hard to get out of the house and having someone offer to go to the bank, store, pick up medications can be so helpful - those things often get really backed up when you are sick!
One other thing: when someone (like me) is sick or in pain for a long time it can be easy to feel forgotten. Everyone is super helpful at first - but then you begin to feel just like a burden to everyone around you and even though you have bad days and bad weeks you feel like you don't have permission to be sick - and just a card or some of the helpful things that people do when you are "really" sick would be comforting from time to time. I have some very wonderful people in my life (my family and then friends!) who are great at remembering that sometimes some encouragment is good. To all of you I am so thankful!!
Wednesday, May 26, 2010
Help Me Dream!
Go Skydiving
Grow all my food in a home garden
Build a school for orphans in Africa
Learn to Ski
Fish on a fishing boat
Ride an elephant in Africa
Go on a real safari
write a book
make a cd of songs I have writen
be a mommy
Years ago when I was stuck in bed sick - I wrote a list of things that I dreamed of doing in my life. Even laying sick in bed I dream big dreams. There was a time when dreaming ended for me - but I am learning (with the loving help of my amazing husband) to dream again. One thing that I want you (those without chronic phyical illness or pain) to understand is that we (those in chronic pain) DO have big dreams and we long very deeply for adventure. We don't need you or anyone else to tell us that our dreams are unrealistic. Please don't stamp out the candle flame of our hopes and dreams!
One of the most attractive things about my husband (even before he was my husband!) is (and was) that he always believes that I can do things that are exciting - in fact, he believes it even when I forget. I'll always remember New Year's Eve last year, it was only 6 months since we had been married - and during that 6 months my chest pressure and pain had become chronic year-round (it had been seasonal at first), our family farm had been taken from us, our ministry with youth had been taken from us, my love of arranging wedding flowers had been taken from me, we had to move from our little rental for lack of money to pay the rent, an opportunity to adopt had been offered to us which we had to turn down ... I was crying and as my husband held me close I said: "I don't know how to dream anymore", my husband simply said: "will you dream my dreams with me than?" and I said: "yes". I didn't have the strengh to dream on my own - but he understood that I needed his help to teach me how to dream in the face of such total loss and disappointment. I think this is a perfect example of how someone without chronic pain helped me and understood the importance of dreams and hopes. I have had many other times when people have told me that I shouldn't dream certain things because of my health.
So, to those who are reading who do not have the experience of chronic pain or illness: speak encouragment and hope into the lives of those around you who are suffering - speak life and not death, speak adventure and excitment, not discouragment! You may not know what power your words may have!
Grow all my food in a home garden
Build a school for orphans in Africa
Learn to Ski
Fish on a fishing boat
Ride an elephant in Africa
Go on a real safari
write a book
make a cd of songs I have writen
be a mommy
Years ago when I was stuck in bed sick - I wrote a list of things that I dreamed of doing in my life. Even laying sick in bed I dream big dreams. There was a time when dreaming ended for me - but I am learning (with the loving help of my amazing husband) to dream again. One thing that I want you (those without chronic phyical illness or pain) to understand is that we (those in chronic pain) DO have big dreams and we long very deeply for adventure. We don't need you or anyone else to tell us that our dreams are unrealistic. Please don't stamp out the candle flame of our hopes and dreams!
One of the most attractive things about my husband (even before he was my husband!) is (and was) that he always believes that I can do things that are exciting - in fact, he believes it even when I forget. I'll always remember New Year's Eve last year, it was only 6 months since we had been married - and during that 6 months my chest pressure and pain had become chronic year-round (it had been seasonal at first), our family farm had been taken from us, our ministry with youth had been taken from us, my love of arranging wedding flowers had been taken from me, we had to move from our little rental for lack of money to pay the rent, an opportunity to adopt had been offered to us which we had to turn down ... I was crying and as my husband held me close I said: "I don't know how to dream anymore", my husband simply said: "will you dream my dreams with me than?" and I said: "yes". I didn't have the strengh to dream on my own - but he understood that I needed his help to teach me how to dream in the face of such total loss and disappointment. I think this is a perfect example of how someone without chronic pain helped me and understood the importance of dreams and hopes. I have had many other times when people have told me that I shouldn't dream certain things because of my health.
So, to those who are reading who do not have the experience of chronic pain or illness: speak encouragment and hope into the lives of those around you who are suffering - speak life and not death, speak adventure and excitment, not discouragment! You may not know what power your words may have!
Monday, May 24, 2010
I never meant to hurt you
I am sure that over the years I have lost many friends because of my health. I know that I lost potential dates an even serious boyfriends because of my health (THANK GOD - as I am married to the best man around!) I know that I have lost ministry opportunities because of my health (and maybe these are the ones that hurt the most). I have lost jobs because of my health. I have had times when I was so sure that where I was would last forever - that I would be involved in a certain ministry, relationship, role for years to come. And then it all ended - sometimes with actual reasons that I couldn't continue because of my health, sometimes with other members of the relationship etc. explaining to me how my health made me unsuitable for the possition. There have been times when I had to step down because of my health, other times when I have been asked to step down because of my health. And then there have been times when people were wonderfully friendly until they found out about my health issues and then suddenly they were gone. I doubt that I am alone in this experience.
These things hurt. But, I think the thing that I would want to say to all of those people who have doubted me over the years is that it's ok. God has used every hurt to grow me closer to the One who never disappoints. There are times in life for different experiences, and even the negative ones can be used by God if we let Him! I also want to say that I know that my health may make you uncomfortable. I know that my health may cause you more work, or heartache, or stress ... and I never want that for you. I never want to be a buren, but this is the body that I have been given to live in, and there is nothing I can do about this except to do my best to live well and filled with joy for the glory of God. I am sorry that my health has caused you pain, or inconvinience, or stress. I am sorry that I wasn't a good enough or healthy enough friend, worker, etc. I never meant to hurt you through my health. I am very aware of the fact that my health is too much for some people, and that is ok. God has led me to people who love and accept me unconditionally. I know that He will continue to work in your life as well as mine to teach us what He wants of us and to grow us more into the people we were created to be. Even the sweetest friend I have on earth - my husband, needed extra time to learn how to love and accept me as I am. God has taught me many things through all of these experiences in my life, and I know also that the way I handled my pain at times caused more pain to those around me. For this i am very sorry. We are all growing and you as well as I need to turn to the One who created us in this pursuit of loving others. I never meant to hurt you - and I thank God that He uses even hurts in our lives to bring us closer to Him and to teach us to love others even through illness.
These things hurt. But, I think the thing that I would want to say to all of those people who have doubted me over the years is that it's ok. God has used every hurt to grow me closer to the One who never disappoints. There are times in life for different experiences, and even the negative ones can be used by God if we let Him! I also want to say that I know that my health may make you uncomfortable. I know that my health may cause you more work, or heartache, or stress ... and I never want that for you. I never want to be a buren, but this is the body that I have been given to live in, and there is nothing I can do about this except to do my best to live well and filled with joy for the glory of God. I am sorry that my health has caused you pain, or inconvinience, or stress. I am sorry that I wasn't a good enough or healthy enough friend, worker, etc. I never meant to hurt you through my health. I am very aware of the fact that my health is too much for some people, and that is ok. God has led me to people who love and accept me unconditionally. I know that He will continue to work in your life as well as mine to teach us what He wants of us and to grow us more into the people we were created to be. Even the sweetest friend I have on earth - my husband, needed extra time to learn how to love and accept me as I am. God has taught me many things through all of these experiences in my life, and I know also that the way I handled my pain at times caused more pain to those around me. For this i am very sorry. We are all growing and you as well as I need to turn to the One who created us in this pursuit of loving others. I never meant to hurt you - and I thank God that He uses even hurts in our lives to bring us closer to Him and to teach us to love others even through illness.
Saturday, May 15, 2010
eating
I don't know about you, but when I am in a lot of pain it is hard to eat - and on top of that being on medications often takes away my appettite or makes me nauseated. This is a continual struggle for me. I really understand that eating healthy helps manage pain, but there are times when the only thing I can get into me is a popsickle or fruit snacks. I also understand that the people who love me want to do everything they can to help me be as healthy as I can, and sometimes that involves bugging me to eat healthy. From some people that is good - the people who have earned the right to speak into my life on such a personal level. But, I find it weird that almost anyone can judge what or when I am eating and tell me that I am doing it wrong! Now, I have definately not perfected how to eat healthy while in pain, but I am sure trying, and when someone who I don't even know very well, comments about that I should eat more etc. it is very hurtful. Or even when someone who does have the place in my life where they can give me critisism, is continually bugging me about what I eat it makes me sad. Is this all I am to you? Is what I eat your main concern? It sometimes makes me feel like I have nothing to offer, all I am is a burden and a child who needs to be fed.
Maybe I have earned these kinds of critisisms in my life - I know that I most definately have made ba food mistakes in the past ... but what I want those outside of me to know, is that I AM trying and that when you see me eat an apple, or even a healthy juice popsicle often that is a huge discipline for me to eat while feeling like throwing up. Give me some credit because it is a huge struggle! Encouraging me when I do make good food choices will make a lot more progress than discouraging me when I am unable to eat or when I eat things that aren't helpful.
Maybe I have earned these kinds of critisisms in my life - I know that I most definately have made ba food mistakes in the past ... but what I want those outside of me to know, is that I AM trying and that when you see me eat an apple, or even a healthy juice popsicle often that is a huge discipline for me to eat while feeling like throwing up. Give me some credit because it is a huge struggle! Encouraging me when I do make good food choices will make a lot more progress than discouraging me when I am unable to eat or when I eat things that aren't helpful.
Friday, May 14, 2010
Call First!
I live in a community that is very laid back - people are often late for things, don't plan too much ahead, and generally do things at the spir of a moment. I enjoy the laid back lifestyle, and people being willing to do things spontaniously. It helps with me not being able to really plan too much in advance to have people think nothing of a dinner invite the day of etc. BUT one area that I struggle a lot with is people "dropping in". I think that for many people with chronic pain this is a trial that is hard to explain to someone who is not in chronic pain. Here are some pointers for those of you who may need some help understanding:
1. I don't sleep quite like a "normal" (I hate that word!) person. So, if you stop by I may very likely be sleeping after being up in pain all night. It doesn't matter to my body if it is 2 pm, when I can sleep I need to so that I can handle the pain.
2. If I am not sleeping I may be in my PJs - look at the entry tiles "Comfortable Clothes" from April. Those of us with pain need to wear comfortable clothes and PJs are often an all-day attire. It embarraces me when you stop by and see me in my PJs all cuddled up on the couch.
3. A phone call asking if I would like a visitor - or even saying that you want to drop off soup but that you don't need to come is i really helpful. When I am really sick I appreciate people taking the time to check in on me, as long as you call and ask me first. DON'T call and leave me a message if I don't answer, "I'll be heading over - just wanted to let you know" If I don't answer I am probably not up for company!
4. When I can't visit it is usually nothing personal! I feel bad turning friends away, but sometimes I just am not up to visitors.
5. When you do visit me, keep in mind that I get tired easily, and so keeping visits short is a kindness. I may even want you to stay longer - but if you notice that I start to fade (take out my heating pad, lay down) then maybe you could ask if I need to have the visit be over - OR suggest that I lay down and we do something less taxing like watch a movie together. Talking for hours is sometimes hard for me when I am feeling horrible. If I insist that we keep talking etc. then my tiredness is on me - but do help me out by offering. It really does help!
6. When I am super sick (like after surgery etc) sometimes it is really nice to have visitors especially if I have been stuck in the house for a long time. It helps me when you tell me that you want me to stay in bed/couch and that you will just make yourself at home. It is hard for me not to be a hostess, so if you get yourself a drink/snack etc it makes me feel like I am at least hosting you without getting up. One of the sweetest man at my church (who is about my Daddy's age) came to visit me in the hospital a couple months ago. I was tired from lots of visitors who wanted to talk a lot with me .. but he brought a book and just sat there and read while I slept. It helped me feel like I wasn't alone, but he made me feel comfortable to get the sleep that I needed.
7. Remember that I love you and that I want to be a good friend to you. I hate that my pain commands that I do things differently, but I am working hard to make the best of the life that I have been given. Your understanding and helping me with things like visits really means a lot to me!
1. I don't sleep quite like a "normal" (I hate that word!) person. So, if you stop by I may very likely be sleeping after being up in pain all night. It doesn't matter to my body if it is 2 pm, when I can sleep I need to so that I can handle the pain.
2. If I am not sleeping I may be in my PJs - look at the entry tiles "Comfortable Clothes" from April. Those of us with pain need to wear comfortable clothes and PJs are often an all-day attire. It embarraces me when you stop by and see me in my PJs all cuddled up on the couch.
3. A phone call asking if I would like a visitor - or even saying that you want to drop off soup but that you don't need to come is i really helpful. When I am really sick I appreciate people taking the time to check in on me, as long as you call and ask me first. DON'T call and leave me a message if I don't answer, "I'll be heading over - just wanted to let you know" If I don't answer I am probably not up for company!
4. When I can't visit it is usually nothing personal! I feel bad turning friends away, but sometimes I just am not up to visitors.
5. When you do visit me, keep in mind that I get tired easily, and so keeping visits short is a kindness. I may even want you to stay longer - but if you notice that I start to fade (take out my heating pad, lay down) then maybe you could ask if I need to have the visit be over - OR suggest that I lay down and we do something less taxing like watch a movie together. Talking for hours is sometimes hard for me when I am feeling horrible. If I insist that we keep talking etc. then my tiredness is on me - but do help me out by offering. It really does help!
6. When I am super sick (like after surgery etc) sometimes it is really nice to have visitors especially if I have been stuck in the house for a long time. It helps me when you tell me that you want me to stay in bed/couch and that you will just make yourself at home. It is hard for me not to be a hostess, so if you get yourself a drink/snack etc it makes me feel like I am at least hosting you without getting up. One of the sweetest man at my church (who is about my Daddy's age) came to visit me in the hospital a couple months ago. I was tired from lots of visitors who wanted to talk a lot with me .. but he brought a book and just sat there and read while I slept. It helped me feel like I wasn't alone, but he made me feel comfortable to get the sleep that I needed.
7. Remember that I love you and that I want to be a good friend to you. I hate that my pain commands that I do things differently, but I am working hard to make the best of the life that I have been given. Your understanding and helping me with things like visits really means a lot to me!
Wednesday, May 12, 2010
Let us Give
It feels so good to help. I think that helping other people is esential to being human. As someone in chronic pain sometimes I feel that the world expects me to be an invalid and that I will just receive help from others and give nothing back. Even someone who is bedridden and suffering greatly has the oportunity to help others in some way. In previous posts I have talked about the importance of thinking of others and not allowing the selfishness that comes naturally (to all humans I think!) take over and rob you of the joy of thinking outside of yourself. Since this month I am focusing on what I would like to say to those who are not living with chronic pain, I will twist it around: LET US HELP! Encourage the friends, or spouce you have who i in chronic pain to reach out and help. Be thankful when that person does help out rather than judgemental ("You shouldn't have done that!", "You should be resting!" etc.) Yes, sometimes by helping others we might cause our pain to increase a little but in the grand sceme of things it is so worth it! Helping others gives meaning and joy to life. Receiving help from that person in chronic pain may be hard (especially if you are the caretaker or used to offering help to him/her) but it is important that you accept that help gratefully and with love. Allowing God to work through someone in chronic pain to help, comfort, advise etc. takes practice for some people who are used to being the "strong one". But what a gift you are giving by allowing that loved one who is in pain to be a blessing to you!
Monday, May 10, 2010
Well-Laid plans
I love planning ahead - making lists and crossing off the things that I have accomplished, planning when to get together with friends .. go on vacations ... etc. One thing that I am learning is that with chronic pain the most well laid plans cannot hold up to a pain episode. Pain has a way of trumping all plans. I think this is an area that is really hard to understand for those who are not in chronic pain. When I have to back out of a certain activity I feel very bad about it, but there is often nothing I can do. Sometimes I resort to just not making plans that involve others because I am afraid of disappointing them. Thse who are not in chronic illness or pain, need to understand that when those of us in pain have to cancel something we had wanted to do it is often very hard for us and we feel so guilty about it. We hate being "run" by our bodies and anger comes naturally when plans have to change. You (without pain) can help by being understanding and not making us feel more guilty by rubbing it in. You can also help us by giving us an out when the plans are made "I would love to get together with you on Wednesday if you are feeling good that day!". Then we don't have to feel quite as bad if we can't make it.
This is a touchy subject and those of us in pain need to also be careful of abusing our health by making excuses when we really COULD have done something but just didn't want to!
This is a touchy subject and those of us in pain need to also be careful of abusing our health by making excuses when we really COULD have done something but just didn't want to!
Friday, May 7, 2010
I am an adult!
For some reason, someone who is sick all the time is suddenly transported to be a child forever - and everyone has the right to tell that sick child what to do! "wear your coat!", "eat your veggies", "are you getting enough rest?" ... the world is full of people who know what is best for that sick child and they will go o great lengths to "take care" of that sick child!
Ok, Ok this is not true - but to someone who is in chronic pain or sickness - it often feels just like this. Things that would never have been said to a healthy person are said to one who is not. This over-protective attitude from those who go to church with that sick person, or faily members is because of love ... but honestly it doesn't often feel very loving! It often feels to that ill person, that others are trying to control their life for them, don't trust them, or just want to make them feel stupid. When people treat me like this I just want to scream: I am an adult!!!! There is a line between being loving and supportive (we all need support) and being controling and demeaning. Those without the experience of chronic pain need to examine their motives and how they try to "help" the friend in pain. Remember that even someone in pain is a person, an adult and that they want to be treated as such!
Ok, Ok this is not true - but to someone who is in chronic pain or sickness - it often feels just like this. Things that would never have been said to a healthy person are said to one who is not. This over-protective attitude from those who go to church with that sick person, or faily members is because of love ... but honestly it doesn't often feel very loving! It often feels to that ill person, that others are trying to control their life for them, don't trust them, or just want to make them feel stupid. When people treat me like this I just want to scream: I am an adult!!!! There is a line between being loving and supportive (we all need support) and being controling and demeaning. Those without the experience of chronic pain need to examine their motives and how they try to "help" the friend in pain. Remember that even someone in pain is a person, an adult and that they want to be treated as such!
Thursday, May 6, 2010
Better
I don't know how many times I have heard the words, "Well, just rest and then you'll get better", or, " We can't wait til you are better!" I know that when you don't have chronic pain or illness you don't understand that "getting better" is really not something that is probably ever going to happen. I think this is one of the most (COMPLETELLY unintentinal!!) hurtful things that someone can say to the one in chronic pain. We live in a fallen world, and this world is not perfect so some of us have chronic health problems that will never go away until heaven (oh the joy of heaven takes my breath away!). When someone tells me that they are waiting for me to feel better, or thinking that if I do a certain thing I will be cured ... it may come with sweet intentions, but to me it feels like I will NEVER be accepted for who I am unless I get "better". I cannot focus my life and energy on wishing that I was healthy .. that is very likely never going to happen fully to me on this earth. I would so much rather focus on being the very best that I can be in the body and with the pain and limitation that I do have. I would so much rather have the people around me accept me right now and see the good that can come from my life .. just the way it is! I feel so empowered when someone praises God for the things He is doing through my broken and tired little life ... rather than always looking and wishing for something that is not and may never be.
It is very powerful to realize the weight that simple words and greetings to each other can have! Would that we ALL take the time to think about what our words can do to others, how we can either encourage them and make them feel used of God -- or discourage them and make them feel like they will never be good enough - never be "better".
To be honest, I long daily for health and for a relief from pain .. BUT I would not trade the life that I have been given .. and maybe this is the Better that everone is in search of!
Maybe "better" is more about what we do with what we have been given than being given everything we want.
It is very powerful to realize the weight that simple words and greetings to each other can have! Would that we ALL take the time to think about what our words can do to others, how we can either encourage them and make them feel used of God -- or discourage them and make them feel like they will never be good enough - never be "better".
To be honest, I long daily for health and for a relief from pain .. BUT I would not trade the life that I have been given .. and maybe this is the Better that everone is in search of!
Maybe "better" is more about what we do with what we have been given than being given everything we want.
Wednesday, May 5, 2010
Can't I smile???
One of the hardest questions that is asked to someone in chronic pain is "how are you?" The reason this is hard is because the answer incriminates you! If I say in responce to a casual, "How are you?" ... "Good!" with a smile on my face then people assume that because I said: "Good" that I am suddenly cured of all my pain! If I say, "not so good" and have a depresses look on my face, people assume that because of my pain I am suicidal or something! It often feels like there is no safe answer! Sometimes when I say: "Good", people will even follow that up with: "Oh so you're feeling better then!?" To which I often don't want to make them sad by telling them that I am still in as much pain as ever .. but i don't want to lie either! Sometimes, to the questioner I feel like yelling: "DON'T I HAVE A RIGHT TO BE HAPPY WHILE I AM IN PAIN???" To me people who think that I cannot possible be truly happy while in pain are looking at life too shallow! Life is deep, and true happiness is so much more than having everything you ever wanted or being pain free!!! In fact, I think that my pain makes my happiness deeper if I alow it to! I DO have a right to smile .. and I will continue to smile til my dying day!
What do you say to people who ask. "How are you doing?" Any clever combacks?
What do you say to people who ask. "How are you doing?" Any clever combacks?
Monday, May 3, 2010
For those who are NOT in chronic pain
Several years ago I remember my mom sitting down with me and saying that she just didn't understand that I was in pain every day that didn't go away. She said that she had never even known anyone in her life who had pain all the time, and she just couldn't understand how it was for me. I remember feeling so ... alone at that moment, it was the first time that I realized that my experience was not the norm.
I know that most of you who are reading my blog do have chronic pain .. but that some of you don't. The month of May my posts will focus on things that those of us who do have chonic health issues or pain would like those without to understand. There are things that I find it very hard to talk about to someone who doesn't have chronic pain, and things that I think would make it easier to relate to each other. Before I get into this month I want to make clear a point that I believe that EVERYONE has some type of pain - physical emotinal, spiritual, mental .... everyone has something that could criple them or make them a victim. Those of us with chronic pain do NOT have the market cornered on suffering! Suffering and pain is a human condition, and no one is exempt. (this is what will make Heaven all the more exciting too!) All of that said: physical pain that doesn't go away or get better has some interesting and maybe unique characteristics. Understanding some things might help with those who don't have the experience of pain on a regular basis.
The first thing that I would like to have understood about me is that I don't always want to talk about my health. I may not mention how I feel even when I am in a lot of pain, just because I don't want to always focus on it. In fact a lot of my life and time is spent trying to ignore the pain I feel, or trying to distract myself. Often when I am with people they think that just because I haven't told them how bad I feel that I feel good physically. That usually isn't the case. I usually just don't want all the focus to be on my health and I just want to feel "normal". It makes me embarraced to have people always focus on my health, so sometimes I just ignore it. This doesn't mean that I never want to talk about it, just that I don't always want to! It doesn't mean that I want everyone to just ignore that I have pain, just that it doesn't have to be the center of attention. I want those who love me to accept that I do have pain, and that it is serious, BUT that it doens't need to dominate our time or conversation. I want it to be honest, but for everyone to know (as I feel so strongly!) that my illnesses and pain are NOT the most important thing! There is so much more ....
I know that most of you who are reading my blog do have chronic pain .. but that some of you don't. The month of May my posts will focus on things that those of us who do have chonic health issues or pain would like those without to understand. There are things that I find it very hard to talk about to someone who doesn't have chronic pain, and things that I think would make it easier to relate to each other. Before I get into this month I want to make clear a point that I believe that EVERYONE has some type of pain - physical emotinal, spiritual, mental .... everyone has something that could criple them or make them a victim. Those of us with chronic pain do NOT have the market cornered on suffering! Suffering and pain is a human condition, and no one is exempt. (this is what will make Heaven all the more exciting too!) All of that said: physical pain that doesn't go away or get better has some interesting and maybe unique characteristics. Understanding some things might help with those who don't have the experience of pain on a regular basis.
The first thing that I would like to have understood about me is that I don't always want to talk about my health. I may not mention how I feel even when I am in a lot of pain, just because I don't want to always focus on it. In fact a lot of my life and time is spent trying to ignore the pain I feel, or trying to distract myself. Often when I am with people they think that just because I haven't told them how bad I feel that I feel good physically. That usually isn't the case. I usually just don't want all the focus to be on my health and I just want to feel "normal". It makes me embarraced to have people always focus on my health, so sometimes I just ignore it. This doesn't mean that I never want to talk about it, just that I don't always want to! It doesn't mean that I want everyone to just ignore that I have pain, just that it doesn't have to be the center of attention. I want those who love me to accept that I do have pain, and that it is serious, BUT that it doens't need to dominate our time or conversation. I want it to be honest, but for everyone to know (as I feel so strongly!) that my illnesses and pain are NOT the most important thing! There is so much more ....
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