I absolutely hate it! My poor dog suffers so much! I used to be so active, especially with her! I always took her on walks, or hiking, or just to play with friends dogs. And now it’s hard to even play fetch with her. I try to do things on my good days, but normally I try to get the house clean and all that stuff. It’s just so frustrating to all of a sudden not be able to do the things you once could!
Hi Tiffany,
Your not alone on this issue, i'm in the same boat besides so many other member's....my staff as been walked by my hubby for quite a few years and if i manage to take him it's on my scooter.
I've noticed the only time we're able to manage doing things is if our mentally as got abit of a boost to it to push we forward.
Try and stay strong mate and the quicker your rheumo visit arrives the better and hopefully what your suffering can be sorted out. xxx
This is an issue for me too with my grandkids, I love playing with them but can't go outside to the park or to the amusement parks. Hang in there it is frustrating but just enjoy the good days as much as possible.
I have recently been diagnosis but suffering for years. All the pain and fatigue increased in the last two years, and it's took that long for me to get pass the mental part of not being able to do all that I use to. Thank goodness for me my kids are 11-16 and for the most part understand what's going on, so we enjoy the days I can do things with them. They have had to learn to go without me :( but the time we can spend together means SO much more now. I finally realized that being alive and mentally healthy is better then not being here at all.
Enjoy the good days, be strong and let the bad days pass.
I agree. I feel so guilty about needing to sleep. I have 3 kids ages 9 and under. There are days that I just have to go to bed a so as I pick them up from school (I get off work and go pick them up on my drive home). I feel like such a horrible mother. I cry about it all the time. I hide my naps from friends and family because I don't want to think I am a negletful mother. It isn't that a just want to rest- I have to sleep. I literally can not do a single thing more. By 3 in the afternoon, my energy is gone. At my last appt. I sat and cried in my Rheumys office about my exhaustion. I told her I can handle the pain, but this feeling like I am going to die if I don't lie down is unbearable. She put me on Provigil all last month. It didn't work. So she put me on Nuvigil (which so far hasn't had any real noticable effect). I am at the point of an extreme lifestyle change. I think I have to quit my job. I told my husband, and he is considering, but it means selling our house and moving to a less appealing house amd neighborhood. I am fine with that if it means I can be a better mother- but my husband has standards and I am not sure if he wants to live at an income level that we'd face if I quit. It is frustrating.
Pray for strength- that is all you and I can do until they find some cure or effective medicine for us.
(((HUGS))))
I am having a hard time with this too Tiffany. My symptoms have been increasing over the years but in the past year or so everything seems to have hit with a vengeance. It's hard to not get frustrated. I try to remind myself of what I can do and I am thankful for that. I miss my old life.
Hi Grandma,
It's funny you saying your symptoms have increaded over a few years...i've gone down hill in the last 12mths it's terrible and for Tiffany being so young it must be a total nightmare to live with besides other young member's. xxx
My husband has lupus and recently got a job which requires over an hour commute each way. As a result he gets home at night and just wants to go to bed. It is hard for me to understand his limits and to be understanding , but I am sure trying. It is important for me to be able to read your comments and how you cope with your exhaustion so I can be a more flexible wife and friend to him. Thank you for your responses.
and, Wifey, thank you for taking an active interest in your husband's Lupus. I think the biggest thing we all would like to have is a partner who understands and protects us, need be, from those who don't and won't try. I feel for his drive to work and hope it works out for him. God bless you. Kathy
Hello Wifey,
I hope you do really learn alot from the threads and member's concerning your hubby and Lupus....wheather it be a man/woman who have it, we all need support and love from loved ones close to we.
The Disease is an hidden one...where to other's we look ok but we're not we're struggling and your hubby with be like this also and if you know is mannerisums you'll soon see when he's down more than other's plus it's a pleasure having you with us to learn and get involved with us.
((Hugs to you both)) Terri xxx
Wifey2012 said:
My husband has lupus and recently got a job which requires over an hour commute each way. As a result he gets home at night and just wants to go to bed. It is hard for me to understand his limits and to be understanding , but I am sure trying. It is important for me to be able to read your comments and how you cope with your exhaustion so I can be a more flexible wife and friend to him. Thank you for your responses.
Tiffany, I am 57 and all my life I was like the energizer bunny. Even the first 10 years after I was diagnosed with Lupus, I still remained quite actice. I find as I age it gets harder and harder. I have two home, (one is a beach house) and two gardens with lots of flower beds and vegetables as well. I love doing all of that but find it harder and harder to keep up. My mind and soul say yes, but my body says, oh no. I have to force myself and then at night when I slow down, I suffer for it. Back aches, leg, feet, and shoulder pain. But I cannot let this disease win.
Good luck,
Wanda
There has been so much change and adaptation these past 6 months since we got married (new job, graduating college, moving, lupus med changes, etc.) that it is hard to know exactly what "normal" life feels like. We are hoping to move closer to his work in the next couple of months, and hopefully along with that will come some sense of normalcy. I think more consistency will be good for him (and me!) in knowing how to plan our days according to energy levels. Especially during this time of adjustment on his meds. He is such a trooper and great husband and friend, I am very blessed to have him in my life.
Kadeeeee said:
and, Wifey, thank you for taking an active interest in your husband's Lupus. I think the biggest thing we all would like to have is a partner who understands and protects us, need be, from those who don't and won't try. I feel for his drive to work and hope it works out for him. God bless you. Kathy
Sobby, At the end of your post you stated that you do not want to let the disease win. How do you know when to push through the pain and when it would be best to take it easy? My husband's doctor said that it is important to be as active as you are able (obviously within reason), and that it is not good to lie in bed all day even though sometimes that is what you feel like doing. I want to be a source of encouragement for my husband (he has Lupus, not me) to help him get at least some small amount of exercise, but don't know how to encourage him without seeming impatient, judgmental or like I don't understand what he is going through (even though I don't, not really).
Sobby802 said:
Tiffany, I am 57 and all my life I was like the energizer bunny. Even the first 10 years after I was diagnosed with Lupus, I still remained quite actice. I find as I age it gets harder and harder. I have two home, (one is a beach house) and two gardens with lots of flower beds and vegetables as well. I love doing all of that but find it harder and harder to keep up. My mind and soul say yes, but my body says, oh no. I have to force myself and then at night when I slow down, I suffer for it. Back aches, leg, feet, and shoulder pain. But I cannot let this disease win.
Good luck,
Wanda
I feel you, It's frustraing and depressing and people don't understand or just don't want to understand, how hard it s to just get out of bed. I am still working so i must conserve my energy. The days i'm not working i try to rest and take of business. Of course the heat, and it gets really HOT! in north fl drains me the moment i walked out the door. Lupus has been a part of my life for nine years and still can't accept the fact i will never be the person i once was. I find myself sinking into the abyss, asia
Tiffany I am sorry, but it is what Lupus does to all of us. It steals our energy and other things from us, But just stay strong and do what you can when you can, and as much as you can dont push yourself . Lean on the Lord and the rest will be easy. Many blessing and hugs.
I couldn't understand what was wrong with me? Why am I so tired? But I kept pushing on and on, until the pain in my feet said No, no, no. I remember the look on my doctor's face when I told him, I was just so exhausted and how my hands and my feet hurt all the time. He ordered some blood work, and I got a call in a week with a referral to a Rheumatologist. I don't really have any 'good days' yet, but I hope they come soon.
Wifey, I have never stayed in bed all day. At best I may lie in bed on my day off until about 9 am which is late for me. I have a lot of pain sometimes, but I have pain whether i am active or lie in bed. When I am active, it helps me get distracted. Activity does make more more mobile. The longer I sit, the stiffer I get. You cannot judge though, because each Lupus patient is different. My husband tends to forget I have Lupus. He still expects me to do everything and is not too helpful with chores and does no kitchen duty at all. He is not very sympathetic to my illness. I don't think he takes it seriously. Perhaps because I do too much. I work 4 days a week for 5 hours a day. Then I come home, cook, clean and do a lot of gardening. My house is not as clean as it used to be, but is is tidy and neat.
I get depressed because people don't understand about Lupus. It is an invisible disease. For your hubby's sake, be compassionate.
I know! I havent been diagnosed with anything yet. It’s between fibro or lupus. Which I really hope its neither. Still wishing for an easy explanation. Although I think I would have gotten that by now. I’m still working too. Full time. Luckily my boss has lupus and understands the days I just can’t make it. Although I normally go in, and get sent home on my bad days. But I can’t afford to miss days. All these medical bills are killing me! I have insurance, but it only covers so much! But one day at a time, right?!?!
aisa64 said:
I feel you, It’s frustraing and depressing and people don’t understand or just don’t want to understand, how hard it s to just get out of bed. I am still working so i must conserve my energy. The days i’m not working i try to rest and take of business. Of course the heat, and it gets really HOT! in north fl drains me the moment i walked out the door. Lupus has been a part of my life for nine years and still can’t accept the fact i will never be the person i once was. I find myself sinking into the abyss, asia
Thank you everyone for your responses! I know I need to stay strong! some days I just wanna give up, and quit going to doctors. I know it’s not the answer, but I just have those feelings sometimes. It’s not an answer nor will it make me any better. Working full time helps me in some ways, and hurts me in others. But I’m still young, so I gotta try my hardest to get through it for as long as I can. And I thank u all.for your support, and advice!
I wouldn't dream of being anything but compassionate. He serves and honors me so much that I can't help but want to help him. He definitely does what he is able and I appreciate all he contributes (vacuums, dishes, laundry, working). Thank you for your feed back.
Sobby802 said:
Wifey, I have never stayed in bed all day. At best I may lie in bed on my day off until about 9 am which is late for me. I have a lot of pain sometimes, but I have pain whether i am active or lie in bed. When I am active, it helps me get distracted. Activity does make more more mobile. The longer I sit, the stiffer I get. You cannot judge though, because each Lupus patient is different. My husband tends to forget I have Lupus. He still expects me to do everything and is not too helpful with chores and does no kitchen duty at all. He is not very sympathetic to my illness. I don't think he takes it seriously. Perhaps because I do too much. I work 4 days a week for 5 hours a day. Then I come home, cook, clean and do a lot of gardening. My house is not as clean as it used to be, but is is tidy and neat.
I get depressed because people don't understand about Lupus. It is an invisible disease. For your hubby's sake, be compassionate.