I really hope i am on the right page.I have read all the posts and take great comfort. You are all so brave.Thankyou for the welcomes I received. I am 75 years now and there are many different factors that also go along with the ever present fibro pain. I really try to pace myself. Not just stopping when no longer able to function.do others find it helps or are you just glad to go until you are forced to stop. I am also trying to be compassionate with myself.. there is the guilt that comes with letting oneself down.hope to hear from you I am feeling pretty lonely today and I can,t do what I would like to do for my old guy. We have been helping each other for 55 years. Dorothy.
I used to go full tilt when i felt better not any more i do try and stay on a routine and pace my self i used to have a lot of guilty feelings but since i been of work since july i am taking the pacing part to heart i have found if i pace myself i do better longer.
Welcome!
I have been told it is very important to pace yourself. It’s a hard thing to do because if you feel up to doing anything you want to do as much as you can while your up to it but if you do you will suffer for it. I’am pretty new to all this and I’m just trying to figure things out myself.
I’m reading that book too.
Hi there! Wow! You must have a very special guy…putting up with any mans crap for 55 years is amazing!
( no offense to our male members). All joking aside, I would like to comment on quality of life. Both of my parents fall into your age bracket, one has fibro. When you have trouble doing the life tasks that you used to be doing easier, it is a great time to reach out for a little help. Since I don’t know what your community or family is like, I would like to offer some suggestions.
I have suggested these same things to my parents…I hope they help you better than them.
My father is too proud to ask for help, and if you try to help him he gets hot under the collar.
My Mother has always lived in fear of not being independent ( because of disease and mental illness)
So involving any outside source makes her paranoid.
I also have seen many people that grew up in your era, hard wired to not accept “charity” AKA help.
Please don’t be like my folks!
Cooking, cleaning, shopping, yard work, chores…
I consider these things perfectly acceptable for ANYONE who is 75 to get help with!!
You and your husband deserve to have good days together and help where needed!
Family is a good place to start.
I would drop everything and run to my Dad if he would ask me to do anything.
Grandchildren should be required by law to mow your yard. (Smile)
If you have no family, don’t be afraid to look into senior services!
We live in the middle of nowhere and we even have great services to help.
Church can be a lifesaver if you go.
Even if you don’t go to Church, it is a place to ask for help.
I would really like to emphasize that getting help with the basics in your home is a great
Way to get back on track.
Meals on wheels, senior services, your county extension, church, family…
Without knowing more I can’t be more specific.
I wish you all the best and I hope today is a better day!!
Hi Dorthy, I sure do know how you feel. My hubby and I have been together 35 years and we're both so moldy and broken...that's how he describes himself...old n moldy and me I'm just broken all the time ;) He can do more for me than I can for him. I do have chores around the house that I must get done in a timely manner.
Right now I have both hands out of commission for any lifting, pulling, and weight restrictions so I have my sons and son in law doing those particular chores but when I'm not to broken I do them and they cost me about 4 hours to do. Four hours is all I can be on my feet before they won't hold me up anymore and hobble me for the next day or two. (I have a Hoveround waiting in the wings) So I work in 20 minute increments, off my feet for 10/15 minutes then back to work for 20 min. etc. until my work is done. Some dayz are harder than others like when the weather is bitter cold or wet. My arthritis doesn't do me any favors in inclimate weather either. I live with 8 others, my daughter/hubby/3grands plus my 2 sons, one of which was disabled at 27 by a hit and run driver, the other is my middle son who cares for me, his brother and my grandchildren...he is 27 and is doing for us by choice...he's amazing! And of course my husband when he's on break from work...he has Colin running around like a chicken with its head cut off...always find something he figures needs doing.
I used to work till I dropped and then would be unable to walk for several days and just lie in bed and cry.
I loved that you said you try to be compassionate with yourself. Dorothy that is so important! Yes there is that guilt, I can't get away from it either...I am supposed to be able to help my whole family for years yet. It's not turning out that way. They insist I am not a burden. My hubby loves to have the roles reversed with him caring for me...he is handicapped as well...one arm mangled when he got hit by a speed boat when he was 15...been working since he was 17, never let it stop or slow him down. He's an inspiration to us all!
I guess I deal with the guilt as needed. The family has my back, so to speak and I guess they help relieve the guilt feelings when I have them. I'll say right out loud and so does my injured son that we feel like big fat burdens and they say in return..we wouldn't have anyone else caring for you...you put us first when we were children and put your health on the back burner...now that has come back to bite you in the butt. We feel it is our turn to take care of you. Now I have a girlfriend that comes and picks me up for local appointments and after we visit a resale shop or two and then I go back to her home and we enjoy the quiet together along with a movie or we love to craft so we work on crafts, I'll spend a day or two with her and then she gets me home. I always feel so rested when I do that...course my home here is a madhouse most of the time with a 12, 7 and 5 year old. It can get to me so I do this about every other week. My friend is also in pretty rough shape with fibro and some nerve damage pain so we can talk freely about our feelings and our pain. That really helps...both of us.
I am sure you have told hubby how you feel and he probably set your mind to ease, so I really think you should let your heart rest on those words, cut yourself some slack, and be sweet to yourself.
I am sure that he doesn't require heavy manual labor to meet his needs...right? Okay then, do what you can when you feel you can and during those times do a little something extra for hubby that you can put away for tomorrow when you feel like poo ;) Snacks/sandwiches in the fridge or cookies to please his sweet tooth...little things like that. I say little, when I bake I go big and usually ruin myself...don't do that for goodness sake! Maybe sit down and make a list of things you'd like to accomplish, figure out what kind of time you'll need for each and then work on that list 20 minutes at a time. Sometimes it seems like it will take forever to accomplish whats on that list but just think of it as..doing it this way will give me more energy and less pain and you will find yourself with more relaxing time in the evenings for just the two of ...won't that be nice!
I sure hope this helps a little Dorothy. I will check back and see how you're getting along. I'm right with you on the lonely part too...even with all these people. That's why I came here...I'm understood and validated. That's HUGE!
Okay, I've rambled on long enough...I do that alot!
Be sweet to yourself today Dorothy! I'll check in on you soon and I hope you'll accept my friendship request.
Sincerely, Laurel aka Northwoods G-Ma
Hi Dorothy,
There is a great thread on the discussion board about hating to disappoint others until you realize that it's okay to and that the people we disappoint can even learn something from the change. If you haven't read it, I suggest that you do. I don't think that anyone's really hit on that topic as well as what's there. And Dorothy? No, you can't do what you could do before the illness. Because you are ill. The latest research into fibro has found that our heating/cooling system, (too many capillaries in our hands and feet,) isn't working right, so that blood flow isn't working properly. So what that means is that our body doesn't get the proper nutrition and can't get rid of the waste product, lactic acid. Lactic acid is what builds up when we exercise and it's what causes those sore muscles after exercise. Sound like fibro pain? Yeppers. See? it isn't you, it really isn't.
I think that YOU are brave for enduring fibro for as long as you have. Very, VERY brave. I admire a person with that kind of stamina. And it sounds like you know what to do, pace yourself. But I must admit that I oftentimes do stop when I'm hit by the pain. I guess it depends upon what I'm doing. But you're so, so right, pacing is everything with this illness. That's one of the most important lessons to learn about this illness. It sounds silly at first because, of course, we think we know how to do that from our healthy days. But it changes when we get sick.
Pacing for me now means stopping every few minutes after typing, so i can rest and then continue. It means leaving the non-perishable groceries in my trunk until I can get them. It means using the electric scooter in the store because I no longer have the ability to get through the store under my own steam. It's accepting changes because we must in order to survive and have enough energy left to get home, etc. If we can accept the changes, we can even still bloom and thrive, I feel, although in different ways than we did before.
I don't know if I helped at all with what I've said. Please feel free to ask more questions or tell us what you feel. It's such a relief to talk to people who KNOW.
Gentle hugs,
Petunia
Be kind to yourself. You're not feeling well and beating yourself a little more is not going to make it better. Try not to engage with ANY negative emotion. It's not good for your health. You live in a sea of universal love. Tap into it whenever you try to beat up on yourself for being "less than" some concept of what your expectations dictate. If there's anything that fibro has taught me, it's to be more accepting of my limitations. To find humility. First and foremost, try to control the pain. It wears one down and makes proper mental perspective very hard. I have huge gratitude I can take it easy when I have pain and just breath deep. After a lifetime of pushing myself I look at it as "learning a new skill".
Dorothy,
Hi please don’t feel lonely we are here for you. I rest when I need too. The thing is learning to listen to our bodies which I’m sure that’s how you do it. Sometimes I push, but just a bit. Especially to make it through a day at work. But the weekends I only do what I can. Hang in there and just so you know I come here and read and reply it really helps me this group is wonderful.
Joy
Hi Dorothy!
Be VERY compassionate with yourself! There is only one you!! You have to take care of you! It's hard to disappoint others and even harder to disappoint yourself. 55 years is amazing! You seem to have the relationship part down pat! I'm sure that he knows you do what you can and that he loves you anyway!! Maybe today you can't do what youd like but tomorrow you can. Go with what you can do. Having you happy and relaxed is probably just as important to him as anything you would be doing.
Hi Dorothy. Welcome. Big hugs to you. I struggle with pacing. I am single mom of a teen daughter and feel terrible guilt if I don't do what I think normal mom's do. So I push myself to keep going to finish things, my mind feels better with the accomplishment but my body pays. I even feel guilty when I do try and pace myself or acknowledge I can't do more. I know the guilt has to go. LOL. I am learning the painful way that pacing is key. I think you are brave and I am so glad we can connect in this community. Wishing you and your 'old guy' the best.
XXX Singingtrees
Hi Dorothy. 55 years with your guy? That is fabulous ! I only have 37 with mine. Lots of give and take, huh? Nice.
You are very brave too. It takes courage to start in. Now that you have you see the common bond and support here. It's such a comforting place to come.
Pace yourself. Every doctor I've talked to about this says the same thing. If we go until we are worn out we are less likely to get back up. I know, it's hard to stop and leave something you are working on. But, it will most likely be there for you after you take some time resting.
Kitty
Hello Dorothy,
Today I’ve stayed in bed and taken care of my dogs. I’ve been selfish. It’s okay to go slow and take it easy, one day at a time. Dorothy, I hope I’m doing as well as you at your age. God Bless you.