When is the right time ?

Written by

Sun, January 18, 2009

Additional Posts

Well, well is it the right time to slow down and respect your self dignity .. when is it the right time to just stop and live what life you have left ?

People I have met often just don't get why I have seemed to just stopped with the worries about my pain , and how I can do this or that ... well, it was pretty difficult , really ...

Therapy of course helped ease me into just letting go and forging some kind of life for myself .. as I do this I am finding that I also am just about finished with offering advice .. as everything else in life , it tends to just fall on deaf ears ...

There is something to say for those of us who just accept our situation, of course we are always hopeful that a miracle could happen , but the continual covering of the same ground over and over gets tedious ...

Now I sound like those people who say, " Just get over it" , but hey ? this is how it is .. and no matter ow much I cry, worry, panic , shout and get angry when I don't get the answer I am seeking , it boils down to accepting the fact that none of the aforementioned is going to change a thing ..

If people want honesty , okay .. honesty is telling people what you need .. I need peace , peace from talking about pain, how awful things are , how bad the doctors act , all that ... go away !

So sure, I have pain, some days worse than others , but it's mine , I own it , I live it and I choose to just get over it .. no one can fix it , no amount of drugs can make it go away forever .. so I accept it and I deal with it and I am determined to live a life ..

Turning 52 in a few months and all I have to show for the past few years is wear and tear on my soul .. punishing mysellf, punishing doctors , punishing family and people around me .. for what purpose ?

I want to be happy, smile and enjoy others again, I choose to .. and I will and only I can do it , only I can determine how much I have to put up with in order to have a life .. just as I chose the other path of crying, worrying and punishing ..

Well, that was on my mind , and so now it is on this page .. for all to see and read .. no more miracles , no more crying about how horrible I feel or how terrible I am treated .. I choose to just let it go ..

So I take my meds , take my rests and work my butt off in order to have a life that helps me feel human once more .. helps me feel alive , like I am useful .. I may not be able to hold a job , but I certainly can do what I feel like doing .. so I choose to garden til the sun begins to warm my skin and bones , I choose to wash my car myself and splash in the suds even though I know that the pain will increase ..

I will not go gently into that good night , no , not me .. agserra

Comments (19) | Add comment

Notify me when there are new comments

Karen Lee Richards

1/20/09 4:28am

Well said, Adrian! You have discovered one of the greatest secrets to living well with chronic pain – acceptance. It's important to go through the grieving process – to grieve the life we lost, the life we thought we would have. We need to cry, get angry, whatever we need to do. But finally, when we come to the point of acceptance, we can begin to understand that we can still have a good and meaningful life. It may not be the life we had planned, but it is a useful life and it can still bring us joy. I'm so happy for you!

Anonymous

1/22/09 6:06am

Adrian, you go girl! This is about the best post I have read on this site. I do get these pain emails and read some of them, but they are all so depressing that I have to stop reading. However, this entry of yours is so true and uplifting! I am already 52 and will soon be 53 and retired from teaching last May after being out on extended sick leave since Nov. of 2007. Your entry has just given me something positive to think about today! Thanks!

Shep

Adrian Serra

1/22/09 7:12am

Hey there Shep - Glad you liked this one .. While it is not easy , accepting my pain has put a new light on accepting myself ..

And if you do have set-backs ? Write me anytime, you know where to find me .. still learning, still growing and still living life .. adrian

janice

1/22/09 8:30am

WOW sounds just like me, thank you for writing this, boy how true it is, we need to make the best of our life now, yes this is all new to me as well it has been three years since my life from working, socialiseing, dancing running around my home doing my chores, to nothing I love swimming and lifting weights it makes me feel stronger, although I do not know what else to do to keep me busy this is what I need to figure out, when I went to work I was gone nine hours a day, now I am home 24 hours a day, the hard part is the very cold winter, I am making a change about that, I have decided to see my condo and move to Flordia, I will be able to do more with my day there then I can here, I feel bad for my husband, he is so affraid of moving and finding a job, this is the hardest part, does anyone have any sudjustions on this part, I already found a pain clinic that will take me, I have not found a PCP yet, I am very lucky I have the oppurtunity to do this thank god I have a condo to sell to buy one down there, the good weather is the place for people in pain, you have the pool a chacoozie(bad spellar) Keeping a positive attitude is good and keeping yourself busy, I love this website I met some great people here, well thank you so much for your positive attitude made my day.

Kindly,

Janice Power

Adrian Serra

1/22/09 8:49am

Janice - that is a good point .. lifestyle changes , and what to do to fill the time ?

My bet is that , with time, you will find something to do , maybe volunteer to help others with excersize ?

As for moving out of the cold weather .. another good thought ! Be prepared mentally as well , okay ? Be sure that you get in sync with the hubby , as any lifestyle changes do affect our spouses ..

We do have our needs, as do they .. we need them to respect ours, so we also must consider askig them what it is they need also ..

Coming from Florida myself, after 22 years, it was definately life altering .. so I am glad you enjoyed this post, I wish you and your husband luck with your move , and I just want you to consider all the options ..

As for work for your husband , well , I cannot predict that there will or won't be jobs available .. this is research that maybe the two of you can do together .. remember , his needs also count as well as yours ... agserra

janice

1/22/09 9:43am

thank you for your reply, since you come from Flordia you will be able to give me some kind of idea at my husbands shot for a job, he is the gemeral manager of a garden center where we live, it is the biggest garden center around, now my daughter said there are so any garden centers down there, but he is affraid they will not offer health ins and I said if you work for anyone fulltime they have health insurance, so are there a lot of garden centers there that sell trees, scrubs, plants, flowers even garden furniture, we are looking to move to ST Petersburg do you know this area??

thanks

Janice

janice

1/22/09 9:59am

Adrian I am unable to work I have severe nerve damage in both knees and feet and I am on a boat load of meds my morphine is up to 600mg a day, so I would never even try to work, I can not function that well with my brain and I am on an alzimers drug as well and it helped at first a few years ago but because my nerve damage is so bad it affects everything, people who have RSD/CRPS usually have it in one extremity and it travels over to the other, well mine has no where to travel, my entire legs get so painful at times all this was from surgery, I had just normal foot pain, i did not have burning or stabbing pain so right there these Dr's went wrong and if they read my medical records they would of seen a huge red flag which was i had a partial hysterectomy in 1993 I was 33 years old, and I was 45 when my feet started to hurt, plus I walked 4 miles everyday before work so I was cut open inside both ankles and I knew in recovery something went wrong, then 10 months later I had a tripple nerve release with a revision taesal tunnel on both legs but not at the same time and I had only one test thru all these surgerys I never had an EMG or blood work or xrays before he cut me by my knees and after all the damage that was done to me I found out I was just in menopause, that is why I am living with nerve damage I never needed the surgery to begin with, you have no idea how bad and how many mistakes they made it would take hours to write it all down but I hate talikng about it because there is nothing I can do now, ok enough of that, if you can let me know about ST Petersburg and work that would be great.....

janice

debbb1

1/22/09 10:44am

This was wonderful article.The mind is our strongest pain reliever. I also have nerve damage and RSD which has spread through most of my body. Like most,I spent a year and half on all the various meds.I was in terrible pain even a breeze on my legs brought me to tears..sleep forget it. Anyway,after going to a support group for those with RSD and seeing the depression ,people with spine implants and the increeasing use of drugs and the constant...I Can't because I hurt....I decided to look for "other" options to deal with pain.

I spent the last year learing to accept my pain,made peace with my pain,practice breathing exercises and visualizations. I now work out and have a real life.I'm off 90% of the medications..I'm me again!!! Am I pain free..NO...but the acceptance and not "focusing" all the time on my pain lets me be free to live!

Thanks for a positive article!!!!!!

janice

1/22/09 11:05am

Debbie,

how did you get off the meds, every time I try to stop of lesson my ammount it gets bad, do you think it is because the damage is in both my feet and not leg that it is harder for me??? my feet get so hot even if I put on sneakers, they start to feel like they are getting very squeshed and I have to take them off and they are so hot I swaer I could cook an egg on them, and I get lightning bolts going thru my toes, do you think this will all just take time my last surgerys were july and sept 2006

Anonymous

1/22/09 9:18pm

Hi Janice

I'm not sure what meds your on.I was one gabapentin 2700mg,vicodin and elavil at night. I have RSD in both legs,arms. Like you I had two knee surgeries (the second was to remove the nerves under my knee that had be injured during the fisrt surgery) The lateral release was in June 06,the nerve removal was Jan 07.

What I did was to very slowy inch down from the gabapentin. The doctor gave me scripts for 100 mg,300mg 800mg (I could cut the 800 in half). I just started going down a 100 mg at a time.I think I did this over 6-8 months time till I was off them. After I got off gabapentin I inched down on the elavil.I now stay on just 20 mg of elavil which controls the nerve pain and helps me to sleep. I only use pain meds on rare occasions when I flare up badly.

It was a slow process but so worth it.During this time I started slowly working out and yes the pain was aweful at first.Work out 15min,flare up for 2weeks,cry alot and start over.I never gave up hope..I knew it would get better if I didnt give up..Do things slow..it can happen. Dont give up hope. If your feet get too hot in sneakers try some open toe sandals that have a sneaker type soles or mabe some yoga that doesnt need shoes.RSD is not fun but you can get your life back. Its so nice to think clear and be myself once again!!!

Adrian Serra

1/22/09 10:39pm

I love that you all are sharing .. I believe that is how we learn .. even if we do not have the issues or diseases .. we can relate to hwo others handle their pain .. their emotions .. and so we grow .. thank you for sharing your lives with me ... I am always willing to learn .. agserra

janice

1/23/09 2:33pm

Hi,

I was cut open inside both ankles, on top of both feet and beside both knees, I got nerve damage from the surgery, not from an iujury prior and after all this surgery I had just for regular foot pain, I found out I was in major menopause and I never needed all this surgery I am on the gabapentin, adivan, 600mg morphine a day and the list goes on, my nerves nerver needed to be fixed so that is why they are all damaged, I am on so much medication and my dream would be to do what you did but the pain is still to much maybe in due time I will be able to do the same.

thanks for writing, very much appreciated

janice

ihydenout

1/22/09 9:28am

Hello,

My name is Paula and I am 40 years old and I live moment to moment with pain that has taken my life away from me. I want to be able to do things and to laugh again. My family doesn't like the person I have become and I dont blame them, I dont like me either. I am a baby in this disability journey and have been living with this pain for about three years but only the last year and a half has it swolled me whole. I was a happily working mother in my local ER and nursing was such a huge part of who I was and now I have been unable to work for 13 months and am not sure who I am anymore. My pain starts before I even awake and I often awake crying. The pain is like a monkey on my back seldom letting me do anything without biting me to make his presence known. There have been so also positive changes in my life, I have a beautiful nine month old baby girl and two other children, Tiffany 18 (getting married this summer) and Robert is 16. My older children are ashamed of me now and my lifelong love my husband Hemmer is just worn out by my illness. I fear I may lose my family in my fight against this pain maybe not physcially lose them but mentally. I dont know who I am anymore. I really like what you wrote about getting back to living. If you would like to I would like to share more of my story with you and maybe learn some better ways to handle my demons and to get my self respect and families respect back. Thanks for listening. If you can you can email me at ihydenout@hotmail.com just make this suject something with my name in it so I wont discard in in the junk mail (I get SOOO much junk mail) Take care and again you article was really good and even I felt like there might still be hope for me to find some happiness. Just to clarify something though before I go, I am very grateful that God has blessed me with my family and especially now given me a new baby to help fill some void in my life, I just want to be the mother they can look back on later and say hey, I had a good childhood and not have to say my mother ruined everything. Take care ,

Paula Barger

Denise Coleman

1/23/09 4:17pm

The original posting generated a tremendous amount of excellent communication, however yours really struck me. It is one thing to say I am going to enjoy my life and not talk about my pain or let it run my life, and it is another thing to get to that point in your life; you are often on a long, difficult journey before you arrive at that place.

I have lived with terrible chronic pain since the mid 1960's and have gone through every kind of physical therapy, surgical, and/or medical treatment. I have had four spinal surgeries, which did nothing to ease my pain but did limit my mobility. In 1997 I was also diagnosed with MS, which has affected my sight, mobility, various internal organs, and causes nerve pain. I was able to build a wonderful career and worked in it for over 20 years, until finally I was having seizures every day. While it was difficult to get myself to work and function at the level I did, it also provided something other than pain for me to focus on. I was living on incredible dosages of pain medication and somehow was able to function.

In 1998 I finally had to accept that I could no longer work and went out on disability, and suddenly I had nothing to keep myself busy. More disturbing to me, however, was that I didn't feel like I was living a productive and worthwhile life, and it took me a long time to realize that there were other things I could be doing that might not have a salary attached, or be what I had pictured myself doing, but from which I could derive both pleasure and fulfillment. Each of us needs to find what we can do to help us get through this phase in our lives; what do we enjoy doing that we can still do and that will give us a sense of self-worth. For me it is advocacy and writing. For someone else it may be gardening, or some kind of craft. But there is usually something for each of us if we look. It won't take the pain away or remove all the challenges in our lives, it won't even take away all our depression, but it will help.

I also want to comment on your remarks about your family. Someone who does not live with chronic pain will not understand what you are feeling or experiencing in your life, but it is important for us to try to help them understand. I lived with pain my daughter's whole life and I raised her as a single mother so it was important to me that I give her a sense of security, yet help her understand why I couldn't do what other mothers could and why I tired more easily than others. I tried to do this by talking with her about what I was experiencing as unemotionally and calmly as I could, and over time she came to know that she needed to help me with some things, that my pain was worse at certain times, and sometimes for no apparent reason. She didn't like it, but neither did I. She would go camping, skiing, and sleigh riding with one of my sister's families, and we would do things like go to concerts and plays.

I am not saying it was perfect, it was difficult for her when she would go to school and come home to find that I was in the hospital, again, but there was someone there to care for her. I hated that I would miss things that she was involved in, but I let her know that.

I don't know what your family knows about your pain, or what kind of communications you have had with them, but perhaps your husband could benefit from a care partner support group where he could talk to other husbands whose wives are living with pain. Then maybe together you could find ways to help your children understand better.

No one likes to hear someone complain all the time, I hate hearing myself complain! But sometimes we do need to let our feelings out. Do you belong to any kind of support group where you can exchange your ideas and feelings with others in chronic pain? Maybe this would be helpful for you.

I would strongly recommend that you contact the American Pain Foundation or some other pain organization to identify resources in your community that might be helpful to you in your painful journey. I know it isn't an easy ride, but it can be more bearable than it sounds like your is right now.

And please, read the Share Posts on this site. You will meet some wonderful people who are eager to share their experiences from which perhaps you can find some ideas on how you can better live with your pain. I wish you the best.

singthat

1/22/09 9:40am

I, too, have just to just do what I can with what I can. I, too, garden when I can, sing because I can and sleep late for doing it. I, too, have just decided to pick what I can do and pay the price with dignity. I no longer explain to anyone. Those who care already know and those who don't, don't need to know. Unfortunatly, I still have doctor issues. I need to find one who will support that I have pain that won't go away and monitor my medication intake without the issue of who takes too much to maintain a life or somewhat normal. I can't be fixed and they need to just jump on the bandwagon and see it for what it is. I don't have the time or the money to waste. I have places to go, things to do and people to see before I lay down for my nap so I can keep going another day.

pesto

1/22/09 10:00am

Adrian,

Your post came at a time I am pondering these same issues. I've been stuck in bed for the better part of the past three weeks. Only leaving to visit doctors, or the pharmacy. Adding medication after medication and feeling no better. The worst part has been watching my husband and son worry about me. I am so tired of this. I just want to work in my greenhouse, have a garage sale, cook dinner for my family ...

daddio

1/22/09 10:31am

I don't post much BUT what you've written seems to sum it all up for me too. I've all but quit posting on other sites Mostly because I decided that it really dosen't do me any good to vent.Kina like I told a Dr once when they were reading off the list of stuff broke or had a medical name. Oh doc thats enuff I feel bad enough without you reading it to me

Good post emember tho Well done is alot better than well said.

Adrian Serra

1/22/09 11:08am

.. Wow .. seems this has reached many of you .. I chose to respond this way .. as I was overwhelmed with some of the requests and replys ..

When I do a sharepost it pleases me that people can identify with what I have written .. while we all may have different issues, we have the pain in common ..

I will not pretend to know the answers , as this journey is new to me as well .. as Karen Richards pointed out , acceptance is wonderful, the path to acceptance varies for all of us ..

For me it was forgiving myself .. as I blamed myself , as well as others, for my issues .. therapy of course , for me, has been the number one defining thing that has and will continue to ease me into my life in the here and now ..

Can I give or offer anyone a new life , help obtain a new perspective maybe, but as a fellow pain sufferer , I have learned that only you can choose the how and when ..

My suggestion to those who are looking for a way .. seek therapy, services are usually free or on a sliding scale for low income people .. and most who are still working may be able to get help through the job .. for those not working , perhaps a spouse has insurance .. and as I said, most areas have places that are free or low cost ..

I wish I could spread advice around freely, but I have learned, as I wrote , not all advice is one size fits all, so I hesitate on giving advice .. I can share my experiences .. and as I see , some of you have already done what I have just learned ..

So, when is the right time, that is up to you .. it is a process, it is not easy , and we all perceive information at different levels and degrees .. mind you , I am not a college educated person, I am , however , a life educated person ..

Having been an over acheiver since my teens, working and learning from experience has been the key to my success in life .. so this is me .. my ability to grow and learn from others .. my ability to express has come with many years of experiencing life ..

Now that I am embarking on a "new" life for myself .. I can feel the positive effects it has had on others I know .. and I will continue to write , and I will continue to share .. and I thank each of you for responding, and I wish only the best for those seeking this path of acceptance and change ..

I will reply via email to those of you who had specific questions .. and I will be honest , if I don't know or have an answer , I will say so .. as I don't pretend to know everything .. again, good wishes to those who have foudn their way , to those seeking their way and I hope you continue to read my posts ... I enjoy the feedback and positive re-enforcement much .. agserra

randy100

1/22/09 2:19pm

You have made some very good points and I appreciate you sharing them with us.

I think that this is an extremely complex issue and there are no simple answers no matter how much we might want there to be, it is a very individual case by case problem.

Everything that we can do to help alleviate our chronic pain is of use and this does vary from individual to individual. What may work for one will not work for the next. I think each of us need to do what we need to do and find out what works best for us, the things that I use may be different from the next but they do work best for me.

Though chronic pain seems hopeless much of the time I think that we all need to keep hope well and alive that someday we may have it alleviated or at least to the point where we can function adequately or the best we can.

Medications are a key part of managing chronic pain as well as treating the other things that come up as a result of the pain that we have such as anxiety and depression. Having chronic pain can trigger the other things and much more. I think that psychotherapy is of use and having a good team of medical providers around you that understand what you are going through as much as possible.

One thing that I always recommend to people with chronic pain is that they seek out the advice of a board certified pain management specialist at a large hospital. These kinds of problems are all that they deal with and they are best equipped to help and know the newest methods out there that may be useful in one's paricular situation since each one of us is different.

There are many different things we can actively do to try and control our chronic pain and whatever is appropriate for a person's given situation I think should be utilized and there may be many different things that can be done at the same time.

For me, along with all the other things that I do in trying to manage my pain I use distraction a lot and that helps me. If I find that I have something to take my mind off of my pain that I am actively involved in, my pain does minimize for a little while though it does not go away but I am grateful for those good times as well.

Hope is essential, if we give up then we have truly lost the battle I think so I just trudge along and try to do the best I can with a set of circumstances that isn't the best.

Wishing everyone a day of diminishing pain and things to help you get through your day.

Randy.

When is the right time ?

Additional Posts

Ask a Question

Health Centers