Hello to all, hope you are enjoying this holiday season with friends, family, and lots of love thrown in.
I'm really good at reaching out to others, but fall short in being able to ask for help for myself. I'm going to go out on a limb here and ask despite my hesitance. I am struggling on every level. My current challenges include an extremely active movement disorder, severe fatigue, and losing mobility quickly. Yes I have been getting health help, traditional and alternative, but hitting dead ends where treatments are concerned. Not making any progress, and in fact getting worse.
So my question is
what do you do each day to help yourself embrace and accept what you are unable to change concerning your health and it limiting your life in big or small ways?
thanks for anything you are willing to share. I'm at my wit's end.
I do "Morning Pages," meditate and try to think positive. Also go to kindspring.com and think of ways to be grateful for what I do have and find new ways of passing on smiley face cards. AND, sometimes all of that fails and I allow mysefl 72 hours to sit in a mire of self-pity. My life has certainly changed and I don't like it! But I am still alive and have to figure out ways to live each day or minute.
Hey Louise, I’m really sorry to hear that things haven’t been the best for you. I can completely understand what you’re going through. The last few months I’ve had difficulties accepting the fact that I can hardly walk or do many of the things I was once able to do on my own. I went to a Counsellor about a month ago and it has been extremely helpful. One thing I’ve learned from going to counselling is that I need to take things day by day, or even hour by hour. Today may not be a good day but I take comfort in the fact that tomorrow may be better. Right now I may be going through a flare that is extremely painful and almost unbearable but I may go into a remission that may last a long time tomorrow. I’m not sure if this is helpful for you but I will keep you in my prayers. I hope that things get better for you very soon.
I wish I could help you but I haven't had to reach out to get help.(yet) I am not real sick , mostly fatigue. pain in my knees My husband helps with dishes and laundry. I know he will help out when I need more help. I don;t think i'll have any trouble asking for help. I have worked all my life (i'm 72) and have been very active , but when need it I will ask.
I know what you are feeling because i too hate to ask for help. But with this last flare i have had to ask. It really makes me feel useless at times but then my husband saids just ask when there is something you need and i will be there and he is so just ask and except the help.
I am glad you are reaching out :) I have been reading Mother Teresa book "No Greater Love" I have found many of my questions answered in this book. Surprisingly I do not experience this book to be religious it seems universal. I think for all of us when we feel out of control, this is the most frightening time... at least for me. I have learned to say Damn it I am scarred!! Instead of hiding my fear inside me. I have found this releases some of the tension.
I am glad you are reaching out :) I have been reading Mother Teresa book "No Greater Love" I have found many of my questions answered in this book. Surprisingly I do not experience this book to be religious it seems universal. I think for all of us when we feel out of control, this is the most frightening time... at least for me. I have learned to say Damn it I am scarred!! Instead of hiding my fear inside me. I have found this releases some of the tension.
I’m so glad you reached out. Unlike others, I haven’t found a good way to come to terms with the state of my lupus. However, just reading this site gives me gratitude because often others are going through a worse time than myself. Even on my most horrible of days, I find there are still some things to be grateful for. Though, I admit, sometimes it’s harder to find gratitude than others. Please keep reaching out. There are a lot of wonderful and understanding people on this site. I’m sorry I can’t be more helpful. Are you on medications? Perhaps a change in medication would be helpful. All the best, Kim
You ARE so good at reaching out---one of the best I've seen. You have helped many--including myself! I will never embrace my difficulties, but I try to accept my limitations. I am 61 and diagnosed in 2006 yet I think I had Lupus for possibly 20 years prior to diagnosis.
First thing I do when I get up in the morning (afternoon?!) is make up my bed. That way even if I have to lay back down, I use a throw to cover up. It's just a mental game I play with myself no matter how bad I feel..
I keep a master "to do" list (things include file taxes, clean out old files, have a colonoscopy, order meds, see cardiologist for stress test, fix bathroom sink) and then a daily "to do" list. I've done this most of my life but NOW I really depend on lists. Marking one thing off is a BIG deal and it makes me realize I am getting things done.
Recently, I had a close male friend die suddenly. He died in his sleep peacefully. He was sick and in pain but still managed to get around . His biggest problem was he was clinically depressed. Once I got through grieving for him, my mood seemed to lift. I think I carry the sorrows and problems of others on my back when I shouldn't and I bet you do this too. Sometimes you have to step away for a bit---whether it is from other people who (innocently) use your energy or working on this site.
All we have is our energy. When we are young we often have too much of it, but now we must protect it---it is our biggest treasure. I go through periods of not being able to get out of bed for days (except to eat, go to bathroom and other necessities). Then for some unknown reason I feel much better for awhile and I have no idea what to attribute it to....Lupus is the weirdest disease.
I have tried almost every med out there for seven years. Now I am "on holiday" from anything new. Most new meds just make me sicker and more tired. I think it is important to try to take control of your health because often we "Lupans" know better than the doctors what works. This last month I have been to ALL my doctors (including dentist) and had every maintenance test done such as mammogram. I wrote a Christmas letter to send to friends and in it said, "Managing my health and taking care of my little house is my full-time job!"
Louise, I am sure you will receive some excellent responses that will help you. We ALL have to reach out at times and that is OK. I am glad you have done so!
I think this time of year puts extra stress on us and we realize our limits more. It is hard to go into a store or even think of what you want. I usually get weak and break out in a sweat. I go home right away and rest with my animals, two small dogs and three cats. They give me so much peace and love, I take a nap with them (the dogs) it is so comforting.
I try to meditate a little daily and do the few yoga moves my body will allow. My husband doesn't mind shopping for me and is very helpful. Soothing music is also a wonderful tool.
Louise, you and this site have given me so much comfort and answers to my many questions. I am very grateful to all of you. I feel like I can really communicate on a better level with my doctors now. I still take Cymbalta and if I am having a really bad day I just up the dose a small amount. Anything that helps.
I call myself retired from being a network administrator and homemaker...lol! I love your suggestions - am going to use a few of them! Thanks for posting!
Lupancatwoman said:
Louise,
You ARE so good at reaching out---one of the best I've seen. You have helped many--including myself! I will never embrace my difficulties, but I try to accept my limitations. I am 61 and diagnosed in 2006 yet I think I had Lupus for possibly 20 years prior to diagnosis.
First thing I do when I get up in the morning (afternoon?!) is make up my bed. That way even if I have to lay back down, I use a throw to cover up. It's just a mental game I play with myself no matter how bad I feel..
I keep a master "to do" list (things include file taxes, clean out old files, have a colonoscopy, order meds, see cardiologist for stress test, fix bathroom sink) and then a daily "to do" list. I've done this most of my life but NOW I really depend on lists. Marking one thing off is a BIG deal and it makes me realize I am getting things done.
Recently, I had a close male friend die suddenly. He died in his sleep peacefully. He was sick and in pain but still managed to get around . His biggest problem was he was clinically depressed. Once I got through grieving for him, my mood seemed to lift. I think I carry the sorrows and problems of others on my back when I shouldn't and I bet you do this too. Sometimes you have to step away for a bit---whether it is from other people who (innocently) use your energy or working on this site.
All we have is our energy. When we are young we often have too much of it, but now we must protect it---it is our biggest treasure. I go through periods of not being able to get out of bed for days (except to eat, go to bathroom and other necessities). Then for some unknown reason I feel much better for awhile and I have no idea what to attribute it to....Lupus is the weirdest disease.
I have tried almost every med out there for seven years. Now I am "on holiday" from anything new. Most new meds just make me sicker and more tired. I think it is important to try to take control of your health because often we "Lupans" know better than the doctors what works. This last month I have been to ALL my doctors (including dentist) and had every maintenance test done such as mammogram. I wrote a Christmas letter to send to friends and in it said, "Managing my health and taking care of my little house is my full-time job!"
Louise, I am sure you will receive some excellent responses that will help you. We ALL have to reach out at times and that is OK. I am glad you have done so!
I am 69 and was diagnosed 2 years ago, but, like you, I think I've had Lupus for 20 years!
susanjs said:
I call myself retired from being a network administrator and homemaker...lol! I love your suggestions - am going to use a few of them! Thanks for posting!
Lupancatwoman said:
Louise,
You ARE so good at reaching out---one of the best I've seen. You have helped many--including myself! I will never embrace my difficulties, but I try to accept my limitations. I am 61 and diagnosed in 2006 yet I think I had Lupus for possibly 20 years prior to diagnosis.
First thing I do when I get up in the morning (afternoon?!) is make up my bed. That way even if I have to lay back down, I use a throw to cover up. It's just a mental game I play with myself no matter how bad I feel..
I keep a master "to do" list (things include file taxes, clean out old files, have a colonoscopy, order meds, see cardiologist for stress test, fix bathroom sink) and then a daily "to do" list. I've done this most of my life but NOW I really depend on lists. Marking one thing off is a BIG deal and it makes me realize I am getting things done.
Recently, I had a close male friend die suddenly. He died in his sleep peacefully. He was sick and in pain but still managed to get around . His biggest problem was he was clinically depressed. Once I got through grieving for him, my mood seemed to lift. I think I carry the sorrows and problems of others on my back when I shouldn't and I bet you do this too. Sometimes you have to step away for a bit---whether it is from other people who (innocently) use your energy or working on this site.
All we have is our energy. When we are young we often have too much of it, but now we must protect it---it is our biggest treasure. I go through periods of not being able to get out of bed for days (except to eat, go to bathroom and other necessities). Then for some unknown reason I feel much better for awhile and I have no idea what to attribute it to....Lupus is the weirdest disease.
I have tried almost every med out there for seven years. Now I am "on holiday" from anything new. Most new meds just make me sicker and more tired. I think it is important to try to take control of your health because often we "Lupans" know better than the doctors what works. This last month I have been to ALL my doctors (including dentist) and had every maintenance test done such as mammogram. I wrote a Christmas letter to send to friends and in it said, "Managing my health and taking care of my little house is my full-time job!"
Louise, I am sure you will receive some excellent responses that will help you. We ALL have to reach out at times and that is OK. I am glad you have done so!
I've been sending letters of support to the troops serving all around the world....this has been my mission for the past few years. It gets me out of bed each day and gives me a purpose to help support others. My SLE fingers do not allow very many long handwritten letters, but I explain about that in my typed letters and the Heroes write back and tell me that they are so happy to hear from me.
Dear Louise, I wish I had an answer for you like you have had for me but I just don't. I have tried living in the present and telling myself this is exactly where I am supposed to be and I have to make the most of this day even if it means laying in bed with my feet above my heart. I try to pray for all the people I know either in person or here. I try to send healing to all of you and others. I always feel like I fall short as my mind wanders. I do not cope well as I constantly think there is something I am not doing that I should be doing to feel better. I try to stay positive and be thankful for what I do have. I have an understanding husband, sons, and friends. They are all so good to me and if I focus on that I feel better mentally and emotionally.
I am praying for you and sending you gentle hugs. I wish I could visit in person with you, drink a cup of coffee or tea, cry with you and hold your hand and then giggle over something goofy. Know I am sending healing thoughts and love your way too. Reet
Dear Louise, I wish I had an answer for you like you have had for me but I just don't. I have tried living in the present and telling myself this is exactly where I am supposed to be and I have to make the most of this day even if it means laying in bed with my feet above my heart. I try to pray for all the people I know either in person or here. I try to send healing to all of you and others. I always feel like I fall short as my mind wanders. I do not cope well as I constantly think there is something I am not doing that I should be doing to feel better. I try to stay positive and be thankful for what I do have. I have an understanding husband, sons, and friends. They are all so good to me and if I focus on that I feel better mentally and emotionally.
I am praying for you and sending you gentle hugs. I wish I could visit in person with you, drink a cup of coffee or tea, cry with you and hold your hand and then giggle over something goofy. Know I am sending healing thoughts and love your way too. Reet
I know the only way that I can work outside the home is with help from my husband. He does the laundry and keeps the house. Sometimes I come home so,so tired. I can't do both anymore. I need my rest on the weekend, and I'm learning I can't over schedule myself on the weekends.... I want to do more, go out with friends etc. I can't do it anymore. I'm praying for you Louise... maybe you are still doing too much yourself?
I have a problem asking for help also..so I really feel you on that..I use to be very independent but now it seems like I can barely make it @ times, other times its like wow will I be able to handle this today, like I'm really ready to give up. Im still in the process of learning to accept it but when I'm at my wits end I turn off everything (TV, lights, cellphone) & everyone, either lay down or sit in my recliner and have ME sometime to really meditate & spend time with God. I really have to take a break from reality just to tell myself God has this. Im learning not to lean on my own understanding. It's really hard because on one hand that's what I'm use to but my life has been totally turned upside down. Lupus is a lot to deal with, if you are a loner or not, it's like no one really know or understand your struggle. Its a struggle emotionally, physically, & mentally. So, each day I really try hard to find one thing that is positive within myself & let that drive me to try to have a decent day because it seems my good days are long gone.
I have a problem asking for help also..so I really feel you on that..I use to be very independent but now it seems like I can barely make it @ times, other times its like wow will I be able to handle this today, like I'm really ready to give up. Im still in the process of learning to accept it but when I'm at my wits end I turn off everything (TV, lights, cellphone) & everyone, either lay down or sit in my recliner and have ME sometime to really meditate & spend time with God. I really have to take a break from reality just to tell myself God has this. Im learning not to lean on my own understanding. It's really hard because on one hand that's what I'm use to but my life has been totally turned upside down. Lupus is a lot to deal with, if you are a loner or not, it's like no one really know or understand your struggle. Its a struggle emotionally, physically, & mentally. So, each day I really try hard to find one thing that is positive within myself & let that drive me to try to have a decent day because it seems my good days are long gone.
I have a problem asking for help also..so I really feel you on that..I use to be very independent but now it seems like I can barely make it @ times, other times its like wow will I be able to handle this today, like I'm really ready to give up. Im still in the process of learning to accept it but when I'm at my wits end I turn off everything (TV, lights, cellphone) & everyone, either lay down or sit in my recliner and have ME sometime to really meditate & spend time with God. I really have to take a break from reality just to tell myself God has this. Im learning not to lean on my own understanding. It's really hard because on one hand that's what I'm use to but my life has been totally turned upside down. Lupus is a lot to deal with, if you are a loner or not, it's like no one really know or understand your struggle. Its a struggle emotionally, physically, & mentally. So, each day I really try hard to find one thing that is positive within myself & let that drive me to try to have a decent day because it seems my good days are long gone.