Ok, I confess, I need my moment of whingeing, ( great Kiwi word)... for having a good bitching session. This is my blog and I can do what I want! ;}
It is precisely 3 am, on my computer clock, which given I travel so much I no longer even bother changing. I bolted out of bed with a mother*** cramp deep underneath my ribcage, trying rubbing that one out!
My surgeon told me to expect this, but what a way to wake up!. Since I am now completely awake, I might as well sit down and write in this blog.
At this point, it is sort of like talking to a blank wall or my kids, for that matter of fact. Cathartic at least... and helps me to process my thoughts but a bit boring without human interaction.
Don't expect answers, candidly because I don't have them, just some personal musings. And after two divorces, what the heck do I know anyway?
I am recently single, and am trying to sort through the whole dating, thing post age 40. Throw chronic pain on top of that and it is all quite a lovely mess of uncertainty, opportunity, and human hilarity.
There is no check mark on match.com for chronic pain among their 2000 other inane questions. I (presume) I appear reasonably normal when I go on a blind date, unless it is a bad pain day, in which case everything tends to like to lock up and I hobble around.
SO:
Do I confess on that first ever so comfortable date, that my back and spine now look like Edward Scissorhands left his latest signature piece on it? The look is quite fetchiing with the sexy black negligee, black spike boots, a whip and goth makeup, I must say, if you are into that kind of thing) !
Do I casually mention that I am electrically wired up internally like the bionic woman and have to turn my back on and off at times to deal with the pain or just surprise him with all my various gizmos and control boxes?
Better yet, that the titanium cage in my back from my spinal fusion can lock up and cause me to have to contort in very interesting ways during some very inconvenient times?
Should I confess all from the onset and have that distinguished gentleman I met on match.com, running with a look of shocked horror from the Starbucks table with his double non fat, extra hot, no foam latte in hand?
Or better yet, just leave it for later9 should things work out), as an unusual surprise that he can share with his friends for years to come...
Perhaps I should date only men with chronic pain issues or related disability related problems, so they can relate?
Or will I end up taking care of them and only then- myself. A long standing joke in San Miguel where I currently reside part time is." Men either go there to die or find a nurse to help them along the way...if they still have the strength and money to find one."
I haven't found a dating service for chronic pain survivors yet. I presume they are out there...
Perhaps my next biz in my every interesting string of bizarre entrepreneurial ventures? I can only imagine the questions I would need to add to the matching criteria. My PHP programmer would be rolling on the floor.
At any rate, I am at least finding this process rather amusing, so I suppose I will go with. Better than sitting at home and watching summer re-runs every night alone with the kitties.
However, my children, who assume I am a total loser in the dating world anyway after my second divorce, "say take thee to a nunnery, woman".
Do they accept non Catholic, agnostic chronic pain afflicted nuns? How ever will I get up from the pews after 4 hours of prayers?
It is a trial and error thing, I suppose, so I will go with it. I will report back my amusing dating efforts and findings after my next venture in the world of Sex, Love, Dating and All the Juicy Bits. And I will keep on laughing!
Cheers, and may you be blessed with better sleep than mine!
Wendy
Sunday, May 22, 2011
Saturday, May 21, 2011
Article on Managing Chronic Pain by Karen Lee Richards
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Thursday, May 19, 2011
Money, Productivity and Chronic Pain: Staying Alive and Out in the Real World!!
Perhaps some of you are blessed with a trust fund and fund a wing of the local hospital, if so, this blog may not be for you. If you are like me, there has to some money to pay the every increasing monthly nut. So how does one work when dealing with chronic pain, which not only hurts like hell, and for many people involves the use of some pretty heavy duty drugs?
I don't personally qualify for social security disability ( an option you should check on to see if is a possibility for you) because I was and am self employed and paid myself a draw so the only government option for me is welfare and food stamps.I personally have not gone there because I am fortunate enough to have assets from real estate pre my injury.
If you are a veteran, do your research about services can be provided there, including your health care. Medical insurance can be a huge expense, and who knows what is going to happen to rates with the new pending laws.
So what about work? It is unlikely you can work full-time, even if you could find such a job, you may find that you can't do the standard 9-5 job physically. I know I can't. I can sit for about 30 minutes at most and then need to move around or lie down. Most bosses are not keen on seeing their employee asleep on the floor!
Being a productive, creative person is important from a mental perspective, not just monetarily. It is part of being alive, so even if you are not in need of a salary, I strongly urge you to find something that is productive and gets you engaged in society. It is crucial to your positive self-esteem, which is a big part of creating a great life.
Give back where you can, and in areas that interest you. Be creative, make a list of what you love to do, and what would get you up jazzed in the morning.
We all have our own interests and gifts- explore them! Write them down and don't throw anyway, even if absurd. This is the brain-storming stage, do this with a friend or family member if you get stuck. The possibilities are unlimited.
Here are some Action Plan options and some suggestions that have worked for me.
1) Work in chunks. I often work at 3 am- 4 am. The pain is bad, I have to turn on my stimulator and get out of bed. I can't be in one position for too long. So instead of lying in bed, I get up and enjoy the quiet time to be productive.
I also chunk the hours I work in the day, and know when I get the most done. Are you a morning person, who fatigues in the afternoon? Plan your day around that, and get things done in the morning. Work with , not against your challenges.
2) Delegate and let others help you. Ask your kids and family for help, and come up with a regular family plan of who does the laundry, the shopping etc. Know what hurts you, don't do it, and accept it. Find someone else to do it.
3) Give up on getting it all done. As my mom used to say, we will all die with dirty laundry in the basket. So what if the shelves are dust? Hate to tell you but the world will not end. Do the triage items that need to get done and LET GO OF THE REST. Admit you have to live your life differently and be kind to yourself around it. Letting go of your own harsh, unattainable self expectations can be some of the biggest challenges, and you are not alone if you struggle with this. I know I have and still do, as do many of my clients.
4) Find work that fits your ability and challenges and need for flexibility. Make up a list of what you are trying to achieve on paper or on your computer. This is part of your ACTION plan. Is it money, to eliminate boredom, to give back or what? All are good reasons, and it will be personal for you. Let your friends and family know about your "Action Plan" and ask for help creating it if you need to.
Some jobs that are in need to name a few, with flexibility are:
Virtual assistants, people who help others deal with medical claims ie fighting the insurance companies when claims are denied, at home call center services, computer advice ie how to use your new mac computer- a much needed service by us, baby boomers, who are just learning how to use their computer or fancy new phone.
Go back to school online, lots more options now than ever before. Get your masters degree, take a few courses, whatever might help you be more desirable in the work force or is of interest to you.
Consulting work, if you have a talent or work history in an area of demand. Much of my coaching and consulting work is done by phone, which I can do lying on the floor, walking around the house etc, with ear phones. Be creative about your options.
Go to the local library or on the internet and see what jobs are in demand, and make up a list that might fit your interests and abilities. Brainstorm with someone and throw everything on the proverbial wall that is an option. Don't hold back!
Then go do something. USE your ACTION Plan, create real tangible deadlines when you will get your goals completed, and have someone, could be your spouse, a coach or friend hold you accountable to meeting these goals. This is called an accountability check point.
Meeting with resistance, internally, is common and normal but work through it. This is what we call in the coaching trade, your gremlins, that nasty self talk we hear in our head that may tell us this is not going work, why bother etc. Ask yourself if these gremlins are serving you in creating your happy, productive life. If not, tell them to shut up!
BTW, laying on the couch ALL day watching I Love Lucy re runs all day does not count as a job! However, it may be part of your rest and break time, if you enjoy it and helps you cope with the pain do it!
Hope this was helpful... anyone else have any good tips around this topic?
Wendy
I don't personally qualify for social security disability ( an option you should check on to see if is a possibility for you) because I was and am self employed and paid myself a draw so the only government option for me is welfare and food stamps.I personally have not gone there because I am fortunate enough to have assets from real estate pre my injury.
If you are a veteran, do your research about services can be provided there, including your health care. Medical insurance can be a huge expense, and who knows what is going to happen to rates with the new pending laws.
So what about work? It is unlikely you can work full-time, even if you could find such a job, you may find that you can't do the standard 9-5 job physically. I know I can't. I can sit for about 30 minutes at most and then need to move around or lie down. Most bosses are not keen on seeing their employee asleep on the floor!
Being a productive, creative person is important from a mental perspective, not just monetarily. It is part of being alive, so even if you are not in need of a salary, I strongly urge you to find something that is productive and gets you engaged in society. It is crucial to your positive self-esteem, which is a big part of creating a great life.
Give back where you can, and in areas that interest you. Be creative, make a list of what you love to do, and what would get you up jazzed in the morning.
We all have our own interests and gifts- explore them! Write them down and don't throw anyway, even if absurd. This is the brain-storming stage, do this with a friend or family member if you get stuck. The possibilities are unlimited.
Here are some Action Plan options and some suggestions that have worked for me.
1) Work in chunks. I often work at 3 am- 4 am. The pain is bad, I have to turn on my stimulator and get out of bed. I can't be in one position for too long. So instead of lying in bed, I get up and enjoy the quiet time to be productive.
I also chunk the hours I work in the day, and know when I get the most done. Are you a morning person, who fatigues in the afternoon? Plan your day around that, and get things done in the morning. Work with , not against your challenges.
2) Delegate and let others help you. Ask your kids and family for help, and come up with a regular family plan of who does the laundry, the shopping etc. Know what hurts you, don't do it, and accept it. Find someone else to do it.
3) Give up on getting it all done. As my mom used to say, we will all die with dirty laundry in the basket. So what if the shelves are dust? Hate to tell you but the world will not end. Do the triage items that need to get done and LET GO OF THE REST. Admit you have to live your life differently and be kind to yourself around it. Letting go of your own harsh, unattainable self expectations can be some of the biggest challenges, and you are not alone if you struggle with this. I know I have and still do, as do many of my clients.
4) Find work that fits your ability and challenges and need for flexibility. Make up a list of what you are trying to achieve on paper or on your computer. This is part of your ACTION plan. Is it money, to eliminate boredom, to give back or what? All are good reasons, and it will be personal for you. Let your friends and family know about your "Action Plan" and ask for help creating it if you need to.
Some jobs that are in need to name a few, with flexibility are:
Virtual assistants, people who help others deal with medical claims ie fighting the insurance companies when claims are denied, at home call center services, computer advice ie how to use your new mac computer- a much needed service by us, baby boomers, who are just learning how to use their computer or fancy new phone.
Go back to school online, lots more options now than ever before. Get your masters degree, take a few courses, whatever might help you be more desirable in the work force or is of interest to you.
Consulting work, if you have a talent or work history in an area of demand. Much of my coaching and consulting work is done by phone, which I can do lying on the floor, walking around the house etc, with ear phones. Be creative about your options.
Go to the local library or on the internet and see what jobs are in demand, and make up a list that might fit your interests and abilities. Brainstorm with someone and throw everything on the proverbial wall that is an option. Don't hold back!
Then go do something. USE your ACTION Plan, create real tangible deadlines when you will get your goals completed, and have someone, could be your spouse, a coach or friend hold you accountable to meeting these goals. This is called an accountability check point.
Meeting with resistance, internally, is common and normal but work through it. This is what we call in the coaching trade, your gremlins, that nasty self talk we hear in our head that may tell us this is not going work, why bother etc. Ask yourself if these gremlins are serving you in creating your happy, productive life. If not, tell them to shut up!
BTW, laying on the couch ALL day watching I Love Lucy re runs all day does not count as a job! However, it may be part of your rest and break time, if you enjoy it and helps you cope with the pain do it!
Hope this was helpful... anyone else have any good tips around this topic?
Wendy
Tuesday, May 17, 2011
A Very Helpful Letter to Share with Family, Co-workers & Friends
A Letter to "Normals" from a Person With Chronic Pain
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.
Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable.
So, if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things.
Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move.
With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.
Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!"
If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don't you know that I would?
I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense.
You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies.
It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.
Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.
Last edited by TracyLynne (2008-03-05 19:36:47)
"I did not write this, but have found it very helpful. Please pass it around, it really helps family, friends and co workers to get it!"
Wendy
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.
Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable.
So, if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things.
Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move.
With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.
Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!"
If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don't you know that I would?
I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense.
You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies.
It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.
Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.
Last edited by TracyLynne (2008-03-05 19:36:47)
"I did not write this, but have found it very helpful. Please pass it around, it really helps family, friends and co workers to get it!"
Wendy
Dealing with Isolation & Reaching Out for Connections
Good Morning!
One of the more insidious aspects of chronic pain for me, was a gradual withdrawal from my normal community of friends and activities. I turned inside, stopped reaching out and sharing my emotions, and myself with the world. I went into my cave and stayed there.
Given I was pretty active in the past, and could no longer go on long hikes, ski double black diamond slopes, or do many of the outdoor activities I once could do, many of my friends gradually drifted away.
Depending on my level of pain, I was not a great deal of fun to have around. In fact, I could be a royal bitch. My sciatic pain was like having a constant migraine headache that never stopped nagging at me. If someone had handed me a chain saw, I could have been tempted to remove that right leg at certain moments. ;}
And because the pain is invisible, people tend to forget it exists. I wish I could have- just for 5 minutes. My kids and ex husband got sick of carrying things for me everywhere we went and tolerating the strain of constant pain on my face. And I hated having to ask.
My ex husband( one reason he is an ex) became very exasperated and angry that we would have to leave social events early because my body was literally screaming in pain, no matter how many pain killers I took.
So I stopped going out, I avoided leaving my house, and I watched far too much TV to numb out. My world became smaller and smaller. I did not even realize it was happening, it was so gradual. Because my client base is world-wide, much of my coaching was by phone. I even stopped accepting new clients, and lost my passion for my work.
I did not share my pain, my fears or doubts about my chronic pain or back injuries with anyone. People got bored with hearing it, and I got bored telling the story- I still do!
When I went out, it was to the doctor appointmenst, for the 10th MRI, or physiotherapy if I was rehabbing from yet another surgery, or the pharmacy. I went deeply into my cave, and I was not coming out!
A close coaching friend noticed what I was doing and candidly confronted me on what she perceived was going on and we talked about the consequences if I continued to cave. I had been floating down the river of denial.
It was time to reach out and see if anyone else felt the way I did. I found many people with similar stories- I was not alone. For a long time, all I did was read the posts. I did not contribute, it just seemed to take too much energy. It took awhile for me to re engage in the world. I had gotten out of the habit.
Not only did people support me in my challenges- whether I posted or not, I found a plethora of new options about treatments, trials, articles and objective viewpoints on side effects and treatment options. It was a gold mine for me, and probably a life saver.
One of the best sites in my opinion is: http://www.spine-health.com. The forums were invaluable for me to connect with others. While the focus is on back related issues, so much of what is on the forum relates to other conditions. It became and still is a lifeline for me.
How to Connect with Others:
If your condition is outside of what is offered on that site, and there are many other good back pain related sites as well, get on the internet and see what legitimate sites exist that are relevant for your situation. YOU ARE NOT ALONE! I caution you, however, about sites that seem to be selling a quick fix. See how many people are active in the forums and if the content is helpful to you.
Get out of the House:
I encourage you to get out of the house even if it to go shopping, for a brief walk, anything to get outside. I could manage shopping with a shopping cart to lean on at the beginning. I sat in coffee shops and talked with other people using the support of my coach.
I forced myself back into the world of people, it was uncomfortable at first. I talked to my supportive friends and let those "supposed friends" go with a blessing. I joined a support group. All of these are options. See what works for you.
My point is to do something... the first step is awareness. Are you isolating yourself? Is this making you happy, or helping you in your family relationships? Do you want to make a change? Take action, make a plan, create a support system, even if it one person. Take baby steps, and reward and acknowledge your courage and strength.
Please don't feel guilty if you have been isolating yourself, it is a very normal, common response. But you can step out and re-engage in the world. There are people who will be there for you. Again, you are not alone!
Warmly,
Wendy
One of the more insidious aspects of chronic pain for me, was a gradual withdrawal from my normal community of friends and activities. I turned inside, stopped reaching out and sharing my emotions, and myself with the world. I went into my cave and stayed there.
Given I was pretty active in the past, and could no longer go on long hikes, ski double black diamond slopes, or do many of the outdoor activities I once could do, many of my friends gradually drifted away.
Depending on my level of pain, I was not a great deal of fun to have around. In fact, I could be a royal bitch. My sciatic pain was like having a constant migraine headache that never stopped nagging at me. If someone had handed me a chain saw, I could have been tempted to remove that right leg at certain moments. ;}
And because the pain is invisible, people tend to forget it exists. I wish I could have- just for 5 minutes. My kids and ex husband got sick of carrying things for me everywhere we went and tolerating the strain of constant pain on my face. And I hated having to ask.
My ex husband( one reason he is an ex) became very exasperated and angry that we would have to leave social events early because my body was literally screaming in pain, no matter how many pain killers I took.
So I stopped going out, I avoided leaving my house, and I watched far too much TV to numb out. My world became smaller and smaller. I did not even realize it was happening, it was so gradual. Because my client base is world-wide, much of my coaching was by phone. I even stopped accepting new clients, and lost my passion for my work.
I did not share my pain, my fears or doubts about my chronic pain or back injuries with anyone. People got bored with hearing it, and I got bored telling the story- I still do!
When I went out, it was to the doctor appointmenst, for the 10th MRI, or physiotherapy if I was rehabbing from yet another surgery, or the pharmacy. I went deeply into my cave, and I was not coming out!
A close coaching friend noticed what I was doing and candidly confronted me on what she perceived was going on and we talked about the consequences if I continued to cave. I had been floating down the river of denial.
It was time to reach out and see if anyone else felt the way I did. I found many people with similar stories- I was not alone. For a long time, all I did was read the posts. I did not contribute, it just seemed to take too much energy. It took awhile for me to re engage in the world. I had gotten out of the habit.
Not only did people support me in my challenges- whether I posted or not, I found a plethora of new options about treatments, trials, articles and objective viewpoints on side effects and treatment options. It was a gold mine for me, and probably a life saver.
One of the best sites in my opinion is: http://www.spine-health.com. The forums were invaluable for me to connect with others. While the focus is on back related issues, so much of what is on the forum relates to other conditions. It became and still is a lifeline for me.
How to Connect with Others:
If your condition is outside of what is offered on that site, and there are many other good back pain related sites as well, get on the internet and see what legitimate sites exist that are relevant for your situation. YOU ARE NOT ALONE! I caution you, however, about sites that seem to be selling a quick fix. See how many people are active in the forums and if the content is helpful to you.
Get out of the House:
I encourage you to get out of the house even if it to go shopping, for a brief walk, anything to get outside. I could manage shopping with a shopping cart to lean on at the beginning. I sat in coffee shops and talked with other people using the support of my coach.
I forced myself back into the world of people, it was uncomfortable at first. I talked to my supportive friends and let those "supposed friends" go with a blessing. I joined a support group. All of these are options. See what works for you.
My point is to do something... the first step is awareness. Are you isolating yourself? Is this making you happy, or helping you in your family relationships? Do you want to make a change? Take action, make a plan, create a support system, even if it one person. Take baby steps, and reward and acknowledge your courage and strength.
Please don't feel guilty if you have been isolating yourself, it is a very normal, common response. But you can step out and re-engage in the world. There are people who will be there for you. Again, you are not alone!
Warmly,
Wendy
Monday, May 16, 2011
I Am Not My Chronic Pain: Reclaiming a Fulfilling, Creative Life with Chronic Pain
Welcome, fellow chronic pain survivors!
It is 3 am in the morning, and my nasty pain gremlin awakes me as it does as this time just about every night. This monster is a master at its craft, its voice is vicious and persistent- so here I sit, writing this blog. Why this chronic pain blog?
Chronic pain personally impacts my life everyday, and this"challenge" has hit me like a proverbial 2 x 4. Chronic pain has shaken my world to the core in so many ways. I hope anyone who reads this blog will also share their stories as well as we all learn from each other.
I am a trained executive coach and given my training, this should all be easy for me to deal with emotionally, right? Nothing could be further from the truth, but my training has finally given me a different perspective on all of this. I can now see this as an great opportunity for learning and giving back.
I meet lots of people who suffer from chronic pain triggered by different reasons:, back pain, surgery, PTSD, cancer treatment, chronic fatigue,fibromyalgia, you name it. I seem to be a chronic pain person magnet lately.
There are no clear easy "take a single pill, one size fits all solution" for any of us, and I certainly don't have a magic fix nor have I found anyone who truly does. I don't have the answers for you, and am constantly seeking them for myself, trying new things, asking questions, researching...
And I do fully believe in creating a plan of action by trying various options and integrating them into a plan that works for me . I won't give up or give in. I do lots of research, and also ask questions of my health care providers and will not tolerate a brush off. I just find a new doctor.
People can and should take action for themselves to regain their power and create a better, happier life should they choose to do so. I refuse to be a victim to my chronic pain. I stand in a place of hope and courage to move forward, in it, despite it.
Christopher Reeves was and is still after his death a wonderful role model of incredible courage, personal strength and creativity, who took a similar stand with his life challenges.
I have suffered from extreme chronic pain from back injuries for over 5 years and have finally accepted it as part of my life. I done just about everything I can from a western medicine approach, and yet I still hope for advances to come.
The pain is becoming more manageable and my life is more enjoyable, and productive because I created a plan for my life that is working.
I have been athletically inclined since very young, and trusted my physical body to always be there for me, and I learned early on to not listen to pain. This belief has served me in the past and has also been my downfall, in not listening to the signs that I was" literally breaking my back".
Now, what I absolutely won't accept is that I have to give up my life, my dreams and becoming this "chronic pain".It is part of who I am but not what I am. Nor is living life as a drugged out zombie going from doctor to doctor for more surgery or meds or isolating myself.
This is not an option for me and I don't believe it has to be for anyone, if this is not how you want to live your life. You are not alone. There are people and resources there for you, who understand how you feel.
Every day I am consciously re-creating a life plan to accommodate my challenges, and given I am a data junkie, I am always out there seeking solutions and networking. It is fascinating, stimulating, and exhausting. I feel a great need to give back to this community of fellow chronic pain survivors, as they have given back so much to me. My hope is that this blog may prove helpful.
Ciao,
Wendy
*I am not a physician or trained medical health provider. Before you go off or on any medication or drug ( which can be very dangerous if unsupervised by a physician), or consider a new therapy or treatment, please consult with your medical health providers. I am not here to provide medical advice. Any statements are my opinion alone unless I post a medical article. Do your research, know your options, and be in choice around your treatments.
It is 3 am in the morning, and my nasty pain gremlin awakes me as it does as this time just about every night. This monster is a master at its craft, its voice is vicious and persistent- so here I sit, writing this blog. Why this chronic pain blog?
Chronic pain personally impacts my life everyday, and this"challenge" has hit me like a proverbial 2 x 4. Chronic pain has shaken my world to the core in so many ways. I hope anyone who reads this blog will also share their stories as well as we all learn from each other.
I am a trained executive coach and given my training, this should all be easy for me to deal with emotionally, right? Nothing could be further from the truth, but my training has finally given me a different perspective on all of this. I can now see this as an great opportunity for learning and giving back.
I meet lots of people who suffer from chronic pain triggered by different reasons:, back pain, surgery, PTSD, cancer treatment, chronic fatigue,fibromyalgia, you name it. I seem to be a chronic pain person magnet lately.
There are no clear easy "take a single pill, one size fits all solution" for any of us, and I certainly don't have a magic fix nor have I found anyone who truly does. I don't have the answers for you, and am constantly seeking them for myself, trying new things, asking questions, researching...
And I do fully believe in creating a plan of action by trying various options and integrating them into a plan that works for me . I won't give up or give in. I do lots of research, and also ask questions of my health care providers and will not tolerate a brush off. I just find a new doctor.
People can and should take action for themselves to regain their power and create a better, happier life should they choose to do so. I refuse to be a victim to my chronic pain. I stand in a place of hope and courage to move forward, in it, despite it.
Christopher Reeves was and is still after his death a wonderful role model of incredible courage, personal strength and creativity, who took a similar stand with his life challenges.
I have suffered from extreme chronic pain from back injuries for over 5 years and have finally accepted it as part of my life. I done just about everything I can from a western medicine approach, and yet I still hope for advances to come.
The pain is becoming more manageable and my life is more enjoyable, and productive because I created a plan for my life that is working.
I have been athletically inclined since very young, and trusted my physical body to always be there for me, and I learned early on to not listen to pain. This belief has served me in the past and has also been my downfall, in not listening to the signs that I was" literally breaking my back".
Now, what I absolutely won't accept is that I have to give up my life, my dreams and becoming this "chronic pain".It is part of who I am but not what I am. Nor is living life as a drugged out zombie going from doctor to doctor for more surgery or meds or isolating myself.
This is not an option for me and I don't believe it has to be for anyone, if this is not how you want to live your life. You are not alone. There are people and resources there for you, who understand how you feel.
Every day I am consciously re-creating a life plan to accommodate my challenges, and given I am a data junkie, I am always out there seeking solutions and networking. It is fascinating, stimulating, and exhausting. I feel a great need to give back to this community of fellow chronic pain survivors, as they have given back so much to me. My hope is that this blog may prove helpful.
Ciao,
Wendy
*I am not a physician or trained medical health provider. Before you go off or on any medication or drug ( which can be very dangerous if unsupervised by a physician), or consider a new therapy or treatment, please consult with your medical health providers. I am not here to provide medical advice. Any statements are my opinion alone unless I post a medical article. Do your research, know your options, and be in choice around your treatments.
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