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Migraine and chronic pain management: tips and tricks
My friends,
Living with Lupus, Migraine and chronic pain is difficult. That doesn't mean life comes to a halt. We can do this, and even do it well! Our family's success depends upon planning and teaching and baby steps. You really can do this...
Originally from my WEGO Health Migraine blog post here and another article on the WEGO Health corporate blog here
I wrote to a Migraineur on another board (Yahoo-Migraine) who asked for help in living with her Migraines in a dark, stark atmosphere, and helping her family survive them as well. This is such a common issue for Lupus survivors too, I thought I'd share parts of it with you here.
I'm so sorry you're going through this in addition to your Migraines. You have a hill in front of you, but with time and the right strategy, you can get over it. Okay- don't look backward. Just take it slow, one step at a time, and start in right where you're at today.
You know, I get so frustrated with living this way, I can only imagine what it is like for my family. It must be very hard for them too. All I can do for you is share what we did to change the thought patterns of our family. Maybe something will spark another idea, or work for you...
I live in darkness as well. It isn't pretty either, with our house in construction, sheets and (gulp) ugly heavy trashbags in front of windows to block out any perceivable light. I can't get over my law enforcement thinking... this is how drug addicts and people cooking meth live. Then, my stomach turns because I'm so angry about it. And frustrated.
***Candlelight is a way to make things appear warmer, more personal, and it chases away the darkness when I need just a bit of light, like when the family is home. (Please, be sure to use care with them unless you use the fake candles) If even that is too much light, my heavy sunglasses top it off pretty well. That soft music I was writing about in the WEGO Health Migraine group, is also a way to make the house seem more like a home... even when it's not your family's choice of tunes.
***Being organized is important to keeping the house going when you can't move. I have a special journal called a Personal Health Control Journal (PHCJ) that has all contacts, chores, etc written down, so if something needs to be done, it's right there. Parts of it are available here. We run on a schedule, so there are no questions what needs to be done that day. Personally, I hate schedules, but it's the only way we can function with any kind of sanity when I'm sick. It gives a sense of control to my family, which they need.
***We made our family a team. I suppose it's my background as an athlete, but that's what a family is supposed to be in my mind. Think football. When one member of the team has to sit on the bench for a while, someone else takes their place. There are rules about how this happens in football etc, and so there must be in my family. We scheduled a family meeting, discussed how to make our family work, and put it in writing. It's easier when everyone knows their place in the family team, and without that, it's kind of like a football team running around with no coach and no direction or plays. Everybody knows their jobs when I'm out, and they've signed off on it, so don't complain. In exchange, I try to do special things for them when I am up and able to function. That family meeting is important (even if it happens in your dark bedroom with you in bed), but it frees them up to quietly tell you what frustrates them, and it gives you the opportunity to ask them what they WANT to do to help out. Giving them a sense of membership, and choice is important in a situation where they feel as out of control as you. Have someone write it all down.
There are some things that still MUST be done by you. That's why, when the yellow face masks pop out of the plane you are supposed to put your mask on first,
***You must care for yourself so you can be there for your family. You must eat and drink and take your meds. Try breaking every single part of your day into sections that last no longer than 15 minutes. Make it 10 if 15 seems too long. Here's the important part..... get a timer (here for less than $5) and set it so you know just how long you have. Set it for everything that you do. When the timer goes off, you're done, and it's time to rest. (Use one like this timer if a beep hurts your head, or download this one if you want to use your computer as a timer.) The idea is that you can do anything for short spells. Those short spells are like baby steps. So long as you're moving forward, no matter how small those steps are, you're getting there. You're in control.
Plan for those times when you're out of commission. Plan menus a week in advance and whoever shops needs a list for that week. The kids can help with this!
***When you cook, make 2 meals instead of 1 and freeze one. Write the contents, date and reheating instructions and cooking time on the freezer bag or in your journal where they can find it, and put it in a special place in your freezer so family members can easily find it.
***Cook with dump recipes that are pre-prepared and in the freezer, so all you have to do is grab one and put it in the crockpot in the morning. Sometimes I take a whole day out when I feel good, and make many meals assembly-line style, so they're ready to fix in a pinch. There are many websites that can help you learn to do this. Do you have a bread machine? This is another dump method! Takes less than 5 minutes to dump in the ingredients and set the timer. When your family comes home and are tired, they will be energized by the smell of that bread baking and can serve themselves. Nothing feels more comforting than the smell of bread baking. My hint: be sure you can handle the smell, or you may have to leave a window cracked in your room or another room, so the smell doesn't trigger vomiting during a Migraine attack. That open window may be a concession on your part to make your family feel that you still love and care for them.
***Priorities: Can you afford help? Can you trade something for help? Somebody to clean the house once a week for minimum wage? A friend perhaps? Or neighbor? Someone from church? A mother's helper to come in for 2 hrs a day and do laundry, clean the kitchen and get dinner started? I know we are all stressed about the economy, but sometimes it's about priorities. It's not a permanent situation, but if it helps your family get hold of themselves for a while, it's worth it. The question is... can you afford not to find help?
***Here is an open letter written by Teri Robert on the MAGNUM site. Print it out for them- don't send them a link and expect them to take time out to read it. Understanding goes a long way, and remember... it goes both ways.
One last thought...
***Make time out for family togetherness. Plan for it, knowing that a Migraine might make problems, and accept that. It's okay. Eat together regularly, no matter what. Plan one family outing a week, and a date-night at least monthly. Take time out for each child individually at some point of each week. These things don't have to be expensive. Maybe you take time out to put family photos into a photo album, or rent an old movie and watch it together with popcorn and a soda. Do a project together like paint a room. Small children (and most big ones too) love to cook, so let them help you with this task. Bake cookies and decorate them together. This is the stuff that binds families together.
Your family feels left out. They miss you. They don't understand what's happening to you, and they are so busy with their own thoughts and stress that nothing else gets through that frustration. They need to learn to control their stress too, and that might be something else to think about. It's not all on you. They need to take some responsibility as well. Remember your love for each other...
Did you find this article informative or helpful? Please energize me and let me know below. Help others- let others outside the Lupus community know about this article by commenting here or linking back to this article. Share your opinion by linking us to your article below.
Add your voice and help others. Become a Health Activist! Visit the WEGO Health Home page today...
Living with Lupus, Migraine and chronic pain is difficult. That doesn't mean life comes to a halt. We can do this, and even do it well! Our family's success depends upon planning and teaching and baby steps. You really can do this...
Originally from my WEGO Health Migraine blog post here and another article on the WEGO Health corporate blog here
I wrote to a Migraineur on another board (Yahoo-Migraine) who asked for help in living with her Migraines in a dark, stark atmosphere, and helping her family survive them as well. This is such a common issue for Lupus survivors too, I thought I'd share parts of it with you here.
I'm so sorry you're going through this in addition to your Migraines. You have a hill in front of you, but with time and the right strategy, you can get over it. Okay- don't look backward. Just take it slow, one step at a time, and start in right where you're at today.
You know, I get so frustrated with living this way, I can only imagine what it is like for my family. It must be very hard for them too. All I can do for you is share what we did to change the thought patterns of our family. Maybe something will spark another idea, or work for you...
I live in darkness as well. It isn't pretty either, with our house in construction, sheets and (gulp) ugly heavy trashbags in front of windows to block out any perceivable light. I can't get over my law enforcement thinking... this is how drug addicts and people cooking meth live. Then, my stomach turns because I'm so angry about it. And frustrated.
***Candlelight is a way to make things appear warmer, more personal, and it chases away the darkness when I need just a bit of light, like when the family is home. (Please, be sure to use care with them unless you use the fake candles) If even that is too much light, my heavy sunglasses top it off pretty well. That soft music I was writing about in the WEGO Health Migraine group, is also a way to make the house seem more like a home... even when it's not your family's choice of tunes.
***Being organized is important to keeping the house going when you can't move. I have a special journal called a Personal Health Control Journal (PHCJ) that has all contacts, chores, etc written down, so if something needs to be done, it's right there. Parts of it are available here. We run on a schedule, so there are no questions what needs to be done that day. Personally, I hate schedules, but it's the only way we can function with any kind of sanity when I'm sick. It gives a sense of control to my family, which they need.
***We made our family a team. I suppose it's my background as an athlete, but that's what a family is supposed to be in my mind. Think football. When one member of the team has to sit on the bench for a while, someone else takes their place. There are rules about how this happens in football etc, and so there must be in my family. We scheduled a family meeting, discussed how to make our family work, and put it in writing. It's easier when everyone knows their place in the family team, and without that, it's kind of like a football team running around with no coach and no direction or plays. Everybody knows their jobs when I'm out, and they've signed off on it, so don't complain. In exchange, I try to do special things for them when I am up and able to function. That family meeting is important (even if it happens in your dark bedroom with you in bed), but it frees them up to quietly tell you what frustrates them, and it gives you the opportunity to ask them what they WANT to do to help out. Giving them a sense of membership, and choice is important in a situation where they feel as out of control as you. Have someone write it all down.
There are some things that still MUST be done by you. That's why, when the yellow face masks pop out of the plane you are supposed to put your mask on first,
***You must care for yourself so you can be there for your family. You must eat and drink and take your meds. Try breaking every single part of your day into sections that last no longer than 15 minutes. Make it 10 if 15 seems too long. Here's the important part..... get a timer (here for less than $5) and set it so you know just how long you have. Set it for everything that you do. When the timer goes off, you're done, and it's time to rest. (Use one like this timer if a beep hurts your head, or download this one if you want to use your computer as a timer.) The idea is that you can do anything for short spells. Those short spells are like baby steps. So long as you're moving forward, no matter how small those steps are, you're getting there. You're in control.
Plan for those times when you're out of commission. Plan menus a week in advance and whoever shops needs a list for that week. The kids can help with this!
***When you cook, make 2 meals instead of 1 and freeze one. Write the contents, date and reheating instructions and cooking time on the freezer bag or in your journal where they can find it, and put it in a special place in your freezer so family members can easily find it.
***Cook with dump recipes that are pre-prepared and in the freezer, so all you have to do is grab one and put it in the crockpot in the morning. Sometimes I take a whole day out when I feel good, and make many meals assembly-line style, so they're ready to fix in a pinch. There are many websites that can help you learn to do this. Do you have a bread machine? This is another dump method! Takes less than 5 minutes to dump in the ingredients and set the timer. When your family comes home and are tired, they will be energized by the smell of that bread baking and can serve themselves. Nothing feels more comforting than the smell of bread baking. My hint: be sure you can handle the smell, or you may have to leave a window cracked in your room or another room, so the smell doesn't trigger vomiting during a Migraine attack. That open window may be a concession on your part to make your family feel that you still love and care for them.
***Priorities: Can you afford help? Can you trade something for help? Somebody to clean the house once a week for minimum wage? A friend perhaps? Or neighbor? Someone from church? A mother's helper to come in for 2 hrs a day and do laundry, clean the kitchen and get dinner started? I know we are all stressed about the economy, but sometimes it's about priorities. It's not a permanent situation, but if it helps your family get hold of themselves for a while, it's worth it. The question is... can you afford not to find help?
***Here is an open letter written by Teri Robert on the MAGNUM site. Print it out for them- don't send them a link and expect them to take time out to read it. Understanding goes a long way, and remember... it goes both ways.
One last thought...
***Make time out for family togetherness. Plan for it, knowing that a Migraine might make problems, and accept that. It's okay. Eat together regularly, no matter what. Plan one family outing a week, and a date-night at least monthly. Take time out for each child individually at some point of each week. These things don't have to be expensive. Maybe you take time out to put family photos into a photo album, or rent an old movie and watch it together with popcorn and a soda. Do a project together like paint a room. Small children (and most big ones too) love to cook, so let them help you with this task. Bake cookies and decorate them together. This is the stuff that binds families together.
Your family feels left out. They miss you. They don't understand what's happening to you, and they are so busy with their own thoughts and stress that nothing else gets through that frustration. They need to learn to control their stress too, and that might be something else to think about. It's not all on you. They need to take some responsibility as well. Remember your love for each other...
Did you find this article informative or helpful? Please energize me and let me know below. Help others- let others outside the Lupus community know about this article by commenting here or linking back to this article. Share your opinion by linking us to your article below.
Add your voice and help others. Become a Health Activist! Visit the WEGO Health Home page today...
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