Today, I broke down crying in front of my niece and nephew. I am already angry at lupus for flaring days before they show up. But there I am, sleep deprived and in so much pain, mental exhaustion, and emotional blur that I do the thing I promise myself I would not do. Both are instantly distraught, making me feel like a heal and get angry at myself. Then the ‘helpful’ suggestions come. I get so frustrated by the constant suggestions from others who seriously do not get it. These two are just trying to help, so is my mom, so is every other person. Keeping this in mind, I force myself to just let it go and remember they are kids. Kids who love means want me healthy and happy. Yes, they are are both know it alls, but what kid at their age isn’t?
So I stayed home and they went out. Good move on my end. Much calmer now. Mentally dealing with the pain better. I got to thinking about how to be better at handling me in order to have a better time with them. Dumb as it sounds, I really needed the reminder that I have Lupus and am not made of steel. Rest is needed. Pain is in the way of rest. Pain management is required to get sleep. The development of Rheynodes has sucked so much that my tension and blood pressure have gone up. That makes it harder to relax and work through the pain.
Guys, I need you. Most of you are old lupine pros who I seriously need to learn from. Suggestions?
I think you should give yourself more credit, you did the best thing for yourself at the time, "So I stayed home and they went out. Good move on my end. Much calmer now. Mentally dealing with the pain better"
You got it! You did it! I've read many times, the new normal of living with lupus is making changes and adjusting. Don't feel guilty for doing what works for you. I've learned that I just need to be upfront with my husband and tell him, I can do this and this and this with you - but not that today.. Then we can make choices from there - maybe he can wait a day or take care of something by himself or call a friend to go with him. The more I would try to do it all, the worse I would feel.
Thanks for posting this, we can all learn from each other : )
I'm learning that those breakdowns are healing. It releases all that built up stress that causes us to flare so badly. I hate having a meltdown, but I'm learning (slowly) to just let them happen if they need to.
Everyone wants to help. I just brush off their suggestions. They have good intentions so I can't be too mad, but it's still irritating. Take it with a grain of salt.
Like Trisha said, being upfront and saying "look, I can do x and y today, but not z." can help you from being too busy to rest. I've learned to say "no" which is huge on my part. I always said "yes" when people needed me to do something, but it just wears me out too much.
I always try to find at least 30 minutes a day to lay down or sit on the couch and do something relaxing for myself. It might be reading, or it might be vegging out in front of the tv, but it helps me rest and relax at the same time.
The fact that you were able to stay home and listen to your body's need for rest and to calm down is awesome! That's most of what we need to do--listen to our body and put our health first.
You did the absolute right thing. You are braver than you give yourself credit for. Sometimes it takes honesty to those who love us "I would love to go, but my body is telling me I have to rest or I am going to be a big cry-baby for the rest of your visit". I have had to say that more than once. However, I do make sure when I am feeling well I try to have the most fun I can.
If you haven't addressed your pain with your doctor I would do so soon. It can cause more than just the emotional issues, chronic pain can stress your body and bring on a flare.
Have as much fun as you can for the rest of their visit :)
Mindy,
I have had SLE and Fibro. since 1995. The prednisone has caused my lumbar C2-S1 to become unstable. This is very painful. I finally went to a pain specialist in 2005. He has increased my quality of life by implanting a spinal cord stimulator. I also do gentle yoga exercises and keep busy with hobbies when I can. My friends and family know I cannot make plans. If there is a family gathering, I go if I feel well enough. I am past the days of pushing myself and then having to stay in bed for a few days.
Everyone is different and you may want to ask your Dr. for some guidelines. I wish you the best. Please take it one day at a time
I understand the frustrations. I’m currently in pain right now because of a flare. I hate it. I couldn’t get a decent sleep and couldn’t work. The heat is sapping the life out of me. But let’s not give up. We have to fight this and win. Just like the others who have been living with lupus for years. I believe we can do this. With the help of this group, we’ll make it.
Mindy I found that scheduling everything last minute works for me. I let everyone know the way things are with me and that they aren’t going to change. I know lupus well enough that if I don’t get enough sleep I’m going to feel worse that day. It’s not going to be a good day. I simply won’t put myself in the position of being around others. My relatives have been wonderfully understanding about my illness and understand that I will see them when I feel well enough. I told them how unpredictable lupus is even for me and that I never know how lupus will affect me on a daily basis. I let them know that if I don’t get a good nights sleep my lupus will make me feel worse that day, so I do things spontaneously with them instead. For me I can pretty much tell how the day is going to go based on how much sleep I’ve gotten. My relatives appreciate this because they’ve seen me when I’m not feeling good and when I am feeling good. They love and appreciate our spontaneous days together so much more. That’s because I HAD to place limits. By doing that they quickly learned to respect my disease. Because I don’t force myself to be around others when I’m not feeling well, there isn’t any anger, frustration or misunderstandings about trying to convince others how “real” this invisible illness is. Besides, they get the “best” me when I’m feeling well enough.
All is well we have to do like Ms. Ann said learn to say NO and listen to your body because we are the only ones who have to endure the pain. I have learned to pace myself and let my family know when I can and cannot do something. My husband sometimes act like he don't know what's going on, but I put that in check real quick and he say oh yeah I forgot..........lol. For the most part my family work very well with me in doing family outtings and activities. Most of all I put God first in my life and it just work for me!! Good luck and relax!!
This illness can really get you down - even when you think you have a handle on it. Diagnosed in 1991 one can say that I am a veteran lupie! I have had extreme flares when it's obvious to the world that I'm pretty sick and remissions where I look great and still feel exhausted. Most of the time I take the ups and downs in stride but not always. The past few months have been difficult for me - cancelling trips and wonderful hobbies. What I've learned this time around it to not wait so long to bow out of commitments. I found just thinking ahead about our annual trip to baseball spring training (airports, rental cars, nap time) made me anxious because I knew it was going to be too much. I finally, only a few days before, told my husband to go without me. I could have saved myself a lot on anxiety if I just went with the lupus flow and bowed out earlier. I find that the spontaneous planning suggested above works best for me. Try to keep your activities to an amount that you are comfortable with - your friends and relatives will eventually catch on.
Don't end up with a bad flare to demonstrate your need to pace yourself!! I tell folks that on a good day I start out with a quarter tank of gas and I make choices on what I do - to make my energy last. This has helped.
Hi guys! I want to jump in if I can since I’m having insomnia (what else is new lol), my pain level has been so high lately but I’m literally hours away from running out of my fmla for like the next 6 months and I’m so physically exhausted and this round/flare not only has brought the bad pain, and exhaustion but depression…and weepyness from all the prednizone . I never wanted to throw in the towl before, or just curl up in a ball and die some days I have been so miserable between the pain, depression and sadness at the loss of all the things I can no longer do and at our age am so angry and frustrated and feel so cheated that it has been stollen/robbed/taken from me and I can’t even go be mad and tell off the person who did it cause it is my own stupid dumb immune system!!! AAAARRRGGGHHH. SOBB! I keep hearing about pain clinics, is that something your rheumy refers you to? Also I’m going thru a divorce right now so my predinzone overweight moon face is really down in the dumps and my sister gets married sturday, but I didn’t get to be in the wedding party because -are you ready for this - I have lupus so I to sick to ask and they didn’t want me falling down in the pictures or ceremony etc… its my only sibling and its her only wedding! Like what do I have a cane for? A fashion statement! I have Lupus not missing legs! All this has made me even more stressed and the more the stress then suddenly TA-DA!!! You guessed it Cognative fog so bad that I can’t even do the simplest of task since I’ve returned to work off short term disability…which makes me even more inadiquate…how do all of you deal with the pain, depression, muscle weakness, sadness, family leprasy syndrome and cognative fogs?
Somedays I have horrible pain and some I don't. And, some days just mild pain. I'm really up and down with energy. I can function with mild pain. If I do too much, though, I'll spend the next day in bed or on the couch. My dogs don't care for my down days, their walks are shorter.
I really don't know how to put it to the docs that I need to go to a pain clinic. When I ask them, they change the subject. My pain hangs me up as well. I have to even out a little though. As soon as I see the new rheumy in a week and a half, I'll try to work with her about being physically up and down with pain. And ask about pain management again. Tramadol is OK, but it doesn't last long enough. I have "the fog" when I'm in pain. If it's real bad I can't function.
The point is that sometimes I don't handle anything.
Omg you guys I feel like you are in my head saying everything I think and feel. It’s amazing how no one in our lives understand. Our families and friends think we are crazy or making it up. Maybe liking for sympathy. I get so upset with my family. They don’t understand. And when I’m at my worst. They stay away from me even more. It’s crazy. I swear I want to die so bad. I think I’d rather have a terminal illness and know I’d be dead soon than know I have to live like this the rest of my life. That is terrible to say but it’s how I feel. I try to keep hope and faith but when I can’t sleep or I can’t get out of bed or the pain is so bad in my legs that I literally pound on them until I have bruises. It’s crazy. And I take pain meds but the pain management doc doesn’t give me enough. So now I feel like an addict but I need more pain meds. It’s a terrible terrible illness and I would not wish it on anyone. I just wish my family understood and helped more or at least cared more. I am so alone. And the sadness sux. I will pray for u all. I’m sorry for u all that are suffering
Jillynic, I know how you feel, but hang in there. I understand that feeling of being alone when dealing with this illness and the frustration from the daily pain. If it wasn’t for this support group many of us would probably feel completely alone and misunderstood. Suffering can crush anyone’s spirit, so I pray for God to strengthen you and all of those that need it.
