Thanks to everyone for sharing, and helping me to see things more clearly. You are so caring, helpful, and kind. Hugs, prayers, tips all appreciated.
My husband made a great suggestion that may help others struggling - get counseling if feeling stuck. I am considering it, because it feels so much like grief, and I am angry at myself even though I know I did nothing to create my situation. I thought I had completely conquered this process of acceptance but I'm battling again. Feel maybe I'm more in need of less frustration with my limitations? Being undependable, less than capable, and dependent on others have never been my way. Time to learn perhaps what other strengths there are and live with greater mindfulness of each moment. Discover new tools, and different than my lifelong way of doing things too.
We are going to have someone come here to evaluate our home, then make what changes we can so I can be more functional, as well as safe when alone. Even making a phone call is impossible sometimes for hours. My primary has refused to refer to occupational therapy, so my husband is going to get by him by using the company employee assistance. I'll be happy to share whatever is learned.
I'm using my talk to type program, and my voice is giving out. More when able. (have to love copy and paste)
I have no answers to this......for me I keep saying " BLOOM where you are PLANTED " and this helps me to accept the things I can not change.........I guess just keeping a positive outlook and trusting in God..... and staying busy doing what few things I can do is all I can do .....
I am keeping you in my prayers Louise.......praying you have a peaceful and happy Christmas season...
There is a woman in our building who is so filled with fear and anger about her physical condition that she is very unpleasant to be around. In over a year, all I have heard from her is complaints and bitterness. You can't divert her to another subject. It's hard to be around her for very long. Everyone here, including me, have our down times and feel rotten and whiney. But, you know, we still reach out to each other and have methods that we use to not let Lupus (and all our other diseases/ailments totally take over our lives. I guess that is the alternative to acceptance...Susan Ann A. said:
Dear Louise,
I am sorry to learn that your health is getting worse. You have prompted me to ask a question. And I would love to hear what anyone else has to say about it.
When you find that something about your health cannot be changed, what alternative is there to acceptance?
I have been living with lupus for 46+ years. At this moment my brain refuses to clarify this for me.
I don't know why I was given SLE...no idea, but I've lost a lot in the process. In return, I've gained so much by focusing on what is really important in life...."stuff" and "things" don't mean much anymore. Reaching out to others and trying to support and get the word out about SLE is what I try to do every day.
Poor me isn't going to make things any better....it will only stress me out more and that means continual flares. We have every right to ask "why me," but I pray that we can come to some peace about our lives and find some kind of joy in each day that we are alive.
I think if you need to speak to someone about the frustration and depression you are very brave. My husband has suggested it and even offered to go with me when and if I decide to go. For all intents and purposes we are grieving over a loss.
I think it's a wonderful idea and especially this time of year might be very beneficial.
Although we have wonderful people here, someone who specializes in this type counseling would be a godsend.
You are a very strong woman, and I have the utmost respect and admiration for anyone willing to find answers, no matter where they may be. I truly believe "mind over matter" makes so much difference. Believing that you will never get better and wallowing makes many people into victims. You are anything but, you are a fighter. I would love to know how it works out for you, and depending on how things go in the next few weeks, I think it's a definite option for me.
Ironically, I took a mini test today at my Pain Mgt doc office today, and I was amazed at how many questions (designed to see if I was depressed) could describe many symptoms of our disease...loss of appetite, sleeping to much, giving up many of the things that we used to do. Much describes just the day to day of having our disease.
You are amazing and so supportive of all of our members, that you deserve to find someone to speak to openly.
Hi!, Since Feb. 2011, Lupus has been with me! At the beginning I was soooo afraid of what changes would/could happen . Then about 4-5 months, i said only me can handle this problem. It is my Life and only me will have to deal with this. After getting to know my doctor and his team of nurses, it became clear there are people who will help, and there are others, and AM NOT ALONE. Now, my family and friends took this as if i wanted attention at first , but as time went by and the help of my oldest son, they started seeing that there was a change that was there with me. Am like you, hate to ask for help ,but am always there to help others. The ease of Living with Lupus came , i learned how to take notice in my body changing : the Flares, the Emotional Depression, Noise/ to many people coming by to visit, Sleeping for hours, Begin tired all the time, Not able to do nothing , it caused the stress for everyone in the house and i would cry all the time. Finially i pull myself away and PRAYED , God is a good God , that is what i was taught as a child and still to this day, i hold that very dear at heart, I asked for me to deal with this Lupus as through his will would allow me. I have been through worse things before , well not this bad, but with FAITH am strong and take moment for moment at a time . The things that i can't do i let everyone know that they will have to do it, i rest through the day as much as possible - i call this POWER NAPS or POWER Shutdown (breaks) , i don't have full day schedules , and limit going out to what is most important-it really helps! So to say to you, put your Faith in God and let him control this !!!! It is okay for you to ask for the help. Hold your head up and keep being yourself with God guidance, you will be all right. Hope this comfort you in some way, take care and stay STRESS FREE.! Seasons Greetings...Beverly L.