Hi Dave, thanks for your honesty. I wanted to respond to you as i am the wife of someone living with lupus, so i understand so well what you are saying. You sound like a lovely person for caring so much but i also understand how sometimes we would just like to have some time to think of ourselves.
Also stages of grief....though anyone who is sick or married to someone with either chronic illness or terminal one should read Ms Ross. Also PBS series on Healing Mind ( believe that is name) Billy Moyers show was just wonderful ....companion book that goes along with it.
jujubeee said:
I understand how you feel Dave, as I can see the same in my husband's eyes. Whenever I am in a flare or bad way I can feel his fear while he tries to be so strong. I tell him we are in this together and he tells me the same. When I need help he takes over..as I'm sure you do with chores, kids, etc.
I think what you are grieving for is the life lupus has ripped from you and you likely have to go through the whole grieving process until you can come to some kind of acceptance.
Concentrate on managing the condition with her. Keep learning about the medications, help find good doctors and specialists and ask TONS and TONS of questions.
Keep fighting! Keep posting!
Much LOVE and HUGS, Julie
From fibrofighter.tripod.com:
Five Stages of Accepting an Illness
Though symptoms of chronic illnesses differ, people with them are united by the denial, anger, fear, hope, and acceptance and other feelings they bring. Below are the five stages that people typically go through when they find out they have a chronic illness. Not everyone goes through these stages in the same order and it is common to go back and forth between stages as your physical health improves or worsens.
No matter what stage you are in, just accept that this is where you belong, go with it, and feel all the emotions you need to feel in order to move to the next stage. Don't rush this process. Let it happen naturally.
If you believe that you are stuck in one of the first four stages permanently, you may want to consult with a therapist. We all have problems that we need to cope with besides this illness, and they can sometimes prevent this process from occurring naturally.
- Denial. Any change or loss in your life is likely to bring denial, and learning that you have a chronic disease can bring large doses of it. Someone in denial may believe a disease can't hurt them. They may ignore their doctors' advice that could help keep the disease under control. In the case of people with diabetes that may mean refusing to take medications or eat a proper diet. On the other hand, some people quickly accept a disease and turn their attention toward healing. These people stay abreast of medical advances and work with doctors to keep the disease in check.
- Anger. What often fuels denial is anger--anger that an individual was the "one in 1,000" to get a disease. Anger may also be directed inward, with an individual blaming himself or herself for having the illness. The best way to minimize anger is to find outlets for it. Writing in a journal, attending a support group or meeting with a counselor are constructive ways to express anger. Anger is normal and can take a long time to work through. Sometimes a small part of anger stays with you throughout the entire illness.
- Fear. Often underlying anger is the fear that comes with having a disease that can't be cured. People with chronic illnesses may start to view life through a "telephoto lens" instead of a "wide-angle lens". They stop planning ahead or making life changes because they believe they won't be around much longer. Fear is often enhanced when people know little about a disease, so combating it often begins with education. The more a person learns about a disease, the more they feel in control of it. Fear also occurs when you lose faith in your ability to fight and to believe in the plan of the Universe. This is the most important stage to work through. Fear does no good. It only causes toxins in your body that will make you sicker. Believe in the Master Plan and let the fear go as soon as you can. It will come back, but don't let it take over. Tell it that it is a useless feeling and that you are stronger than it is.
- Grief. Feelings of grief and loss are common because chronic diseases bring life restrictions that others don't have to face. These may include no longer being able to participate in activities once enjoyed, like eating a favorite meal or playing catch with a grandchild. Grief can cause feelings of inadequacy and lead to withdrawal and isolation. Focusing on activities that remain unaffected by an illness can help people overcome these feelings. Those who refuse to think of themselves as 'sick' will have a more positive outlook. Joining a support group can also help. Groups allow people to meet others with the same disease who are still active and accomplishing goals.
- Acceptance. Though managing a long-term illness can bring emotional upheaval, it also brings the triumphant feelings and strength that come with overcoming obstacles. Success comes in a variety of forms, whether it's controlling a disease with positive thinking, biofeedback, or physical therapy so well that less medication is needed or accepting that the illness has irrevocably changed your life and some of it is very, very good. With each success comes the confidence that you're able to live a full, rewarding life and maybe even a more meaningful life than if you hadn't gotten the illness.
If you are interested in learning more about these stages, look up Elizabeth Kubler-Ross at the library or on any search engine. She is the pioneer in studying the stages of grief.
Blessings,
Liz
Thank you all for your responses. I would like to add my following thought. Your loved ones just want you to live and have the best life you can. As Mothers and caregivers I am sure this is hard to do, the best advice I would give to all the Lupus suffererers is "Take care of you and it is not your fault and most importantly you are not crazy"
Thanks for sharing Liz and Dave.
Carolyn
PS,
Sweetie, I lived that hell for 8 years until I was finally able to find a way out. The weight of the world lifted off my shoulders that day. Life is short, don't accept living that way when you have a chance to be happy. It will do wonders for your health!!! I have been in remission & lost the extra steroid weight in those 8 years until my current flare, which has been mild in comparison to previous flares.
Dave,
It's ok to grieve. You have to go through that stage. Now it's important to appreciate the time you have together and the things you can still do. Life is short and you only have one chance to live it to it's fullest.
Hugs & support. I'm sure it means the world to your wife to have your love & support.
Cheryl,
It took until 2 weeks ago for my husband to finally come clean. We are still finding our way, but as the "man" he feels he should be able to fix any situation. It's difficult that this is something out of both of our control, besides the fact that it limits much of our old lifestyle. Not all husbands or loved ones are willing to admit their own feelings of loss of control.
It's the non-physical pain that is hardest to deal with.
Hugs to all!
Island Girl said:
Hello Dave, Welcome to our group and thank you for sharing. I have only been going through this a couple of years and my hubby has been so helpful and supportive, I just feel so blessed. We have gone through times when he seems angry and annoyed, and I felt it was directed at me, but he finally broke down one night crying and shared all of his feelings and emotions. He, too, has been grieving, and I didn't realize how much until that night. He is annoyed and angry, but not at me, at the disease and how it has changed me and how it has changed our lives. And most of all, the fact that he can not "fix" it and make me feel better...it tears him up to see me in so much pain.
I was so thankful he was able to share how he felt and we can not talk about it more freely so he doesn't have to keep it bottled up. I hope that by your sharing...with us, with your wife, with anyone you feel comfortable with...will help you as well.
It's wonderful to see such a caring loving person and I'm glad your wife has you for her support! Take care of yourself and we're here for you if you need to let it all out!
~Cheryl
Hi, I can relate to this. It is very hard for the family and friends not to have some kind of control, Lupus won’t allow us Living with it to control it. So just think for a moment how they feel with what you are feeling !! It is something totally different for everyone to try and have control . But hang in there and don’t Stress…Beverly L.
whathappensinvegas said:
Cheryl,
It took until 2 weeks ago for my husband to finally come clean. We are still finding our way, but as the “man” he feels he should be able to fix any situation. It’s difficult that this is something out of both of our control, besides the fact that it limits much of our old lifestyle. Not all husbands or loved ones are willing to admit their own feelings of loss of control.
It’s the non-physical pain that is hardest to deal with.
Hugs to all!
Island Girl said:Hello Dave, Welcome to our group and thank you for sharing. I have only been going through this a couple of years and my hubby has been so helpful and supportive, I just feel so blessed. We have gone through times when he seems angry and annoyed, and I felt it was directed at me, but he finally broke down one night crying and shared all of his feelings and emotions. He, too, has been grieving, and I didn’t realize how much until that night. He is annoyed and angry, but not at me, at the disease and how it has changed me and how it has changed our lives. And most of all, the fact that he can not “fix” it and make me feel better…it tears him up to see me in so much pain.
I was so thankful he was able to share how he felt and we can not talk about it more freely so he doesn’t have to keep it bottled up. I hope that by your sharing…with us, with your wife, with anyone you feel comfortable with…will help you as well.
It’s wonderful to see such a caring loving person and I’m glad your wife has you for her support! Take care of yourself and we’re here for you if you need to let it all out!
~Cheryl
Yes Julie, we have Live! Lupus has it moments trying to make us feel like giving up , but we can’t , and knowing that our family and friends want us to do our best , it is hard at times , but we must not let Lupus win …Beverly L.
jujubeee said:
I hope it’s ok Dave if I add something here. We, with lupus, need to do our part to take care of ourselves. We have to take our meds on time, regularly and faithfully without fail. We have to GO to all our appointments and stay up to date with our health.
In other words, if we don’t do what we can to stay alive then we are doing a disservice to our loved ones. And our loved ones will respect us even more for doing so.
I would hate to think that if something happens to me that I hadn’t done everything I humanly can to stay alive. I don’t ever plan to leave my beloved husband with the thought that I didn’t care of myself or care enough to stay alive for him. On days that are hard and tough, even taking my 27 meds is difficult. (gotta eat with this one, drink with that one, take one twice a day, take another one 3x, etc.) But I find the strength in knowing that I will NOT get sick and have anyone I love think it is because I didn’t care enough to do everything I can to stick around.
HUGS and lots of LOVE, Julie
Your wife is very fortunate to have a caring husband like you by her side, Dave. I read somewhere that "Love is long-suffering and kind." You prove that statement to be true.
As for grieving: it is perfectly understandable. I pray that your grief does not overpower you. Instead, I pray that you resolve to continue providing the support your wife needs and that this experience will make you a stronger, more caring person.