lately I've been feeling a torrent of emotions related to how I feel each day. I wake up and hate my fiance asking me first thing, how I feel. It's surprising me how each day something new hurts, my skin is a blotchy discolored mess, I get a headache almost daily and now some weird dark marks have appeared on me. The marks almost look like a bruise but doesn't hurt, itch or are raised, it's just there looking hideous. I'm nauseous and tired and feel a combination of old, and ugly. I get angry and snap sometimes, don't sleep well, one minute his massage feels like heaven and the next his touch is irritating. Bouts of constipation leave me bloated and I can't regulate my body temp to save my life, it's freezing cold one minute and then burning up the next. I went thru "the change" at 35, now I'm over 50 so what the neck is this going on?! It seems ever since my positive ana, symptoms just keep evolving and It know if this is real or psychosomatic! I'm a miserable hot mess right about now and could use suggestions on how to perk myself up a bit.
I know this is hard for him because I've changed, he doesn't know half the time how to approach me for fear of me snapping at him or, feeling useless.
We are struggling thru this. Have to have a new mri now because it hurts me to sit down, sacral pain. I fought the doctor on it because I just couldn't bear to hear about anything else being wrong.
I feel so sad as I write this, I take Norco, robaxin and naproxen now and it all makes me feel sick. I panicked about what all the meds could be doing to me, like am I adding misery to my life.
I'm usually so upbeat, positive and I'm just thankful to have a place to speak my pain and confusion without worrying about how I might sound.
But a lift me up, advice or, opinion would be most welcome. I just don't want to feel so alone in this.
Might I suggest you ask your Specialist to review your medications ( including all supplements etc) just in case they could be contributing to your problems. Best Wishes to you Kaz xo
1st; Make sure you let your doctor know how the medicine is affecting you. 2nd; Take your medicie while you’re eating or after your meals. It made me feel better. Wubbabear, you’re not along. I feel the same way at times but, I’m trying to change it into something positive or if I’m having a bad day or moment, I let my family know & ask them to give me time to deal with it. I’m glad u joined us and I pray that your have a good day:-)
First of all, you are normal in our world. I finally figured out that when I am not handling my pain or other symptoms and I feel grouchy I tell my husband that I am feeling the way I am and I hope I don't say anything hurtful. That has helped our relationship so much. We have been married 42 years and we still find ways to honor and respect one another better. Vonvonlisa was totally correct in what she said. And Timckay was right too. I would make an appointment with my doc so you can get some help hopefully. You are being prayed for and healing thoughts go out to you.
I became very depressed with my illness. My doc added an antidepressant to my regimen and it helped immensely. She chose a medication that was also known to help with pain as well. I take it at bedtime since it makes sleepy. There are several different ones to choose from so talk to your doctor about this. I would also rec
Recommend counseling for both of you. Men like to solve problems and it really got to my husband that he couldn’t solve this problem. It helped me immensely. And finally, don’t discount the value of good, restorative sleep. This is also something to discuss with your doctor. Be honest with him/her at every appointment. He is there to help. Good luck and gentle hugs!
I also went through menopause young. I was 32 when things started changing. My doc says I am fully in menopause but I still get night sweats and hot/cold flashes during the day. I refuse to take hormones. I take trazadone to sleep and it really helps. It is an older antidepressant so it's well studied. It gives me a solid 7 hours of sleep which is a godsend. I also take an antidepressant which really helps my mood and can help me ignore the pain a little better. My marriage was on the brink and wirhin two weeks of starting the sertraline I was mostly back to normal, mood-wise. It helped me be less sensitive to remarks my husband would make. I would highly recommend talking to your doctors about your current meds and about your sleep issues. Lupus gets worse when you aren't sleeping well. Good luck!
Woke up at 10am to your replies.....Thank you all for caring. After a good boohoo I thought about the suggestions. I've been Leary of the antidepressants because of side effects like facial acne, weight gain (gosh I'm so vain!) But it's true they scare me. I've talked for years to my doctors about the insomnia but they are reluctant to give me anything for fear of dependency. Also my rehearsals and shows have me out at times till late nights so sleep schedule is hard.
But I really like the approach to talking to him and will use all of your suggestions. I got excited about changing my approach, and the chalk board! Happy faces here I come! I am in touch most times with myself, but I fight the big "D" word (depression) somehow in my mind it's a kind of failure to me. Like I'm failing at life and suck at handling things, and I have been raised to "handle" things. I was raised by one of the "strong black woman moms who teach We don't have the time or luxury to break down"
Anyways I'm listening so keep talking you are all my little boats for now....happy sails.
Ann, I know what fubar means but what do the others mean? My husband asks me how I’m feeling every day and I get tired of listing everything that’s wrong with me. It generally takes me at least two hours in the morning before I’m fully functional or as much as I’m going to be on any given day. Now that he is starting to have health issues, most related to obesity, we could really use some descriptive terms for how we’re feeling on a given day. We still have kids at home so acronyms are much better than the full words…lol BTW, how do I change my profile pic? I use my tablet and can’t seem to figure it out. Thanks in advance! Annemarie
Ann A. said:
When I was in a long term relationship that worked we created a set of codes that allowed him to know how I was doing without asking “How do you feel?” I mean, we have all been taught that the appropriate response to that question is “Fine.” These started because one day I snapped at him and yelled. “I feel like ****. That is the answer every day. That is the normal answer. When something changes, I’ll let you know!” The next day as soon as he looked at me I said, “SNAFU”. He laughed and said, “So now your are going to use military slag.” Well I did grow up as a military brat (My Dad was not an officer so we did not see the world, just the USA). When things were rougher I switched to FUBAR, or FUMU and then to TARFU.
We invented some codes of our own. We talked about how I felt when we assigned a term or invented one. But everyday no longer started with the dreaded question, “How are you?” I was no longer caught between being polite and telling the truth - which I did not really want to say aloud repeatedly. Eventually he learned that the best time to inquire about how I felt was several hours after I had awakened. After coffee, shower, food, meds. and movement is still a better time to ascertain how I am doing. When he got sick we had a set of expressions already at hand.E
I can definitely relate to so much of what you are talking about! I am 44 and I guess “in” menopause right now, the not being able to control my body temp is total hell! I take flannel shirts on and off all day! If I am still I am freezing but if I get up to do the smallest amount of housework I am in a sweat on my face and chest immediately!
I also do not really like to be touched by my husband a lot of the time because of the pain. I know this hurts him and It’s not my intention.
I am also usually positive but sometimes this disease can really drag me down.
It helps to talk it out on this site - I have had lupus for 22 years but never had a place to vent and be really heard until I found this!!
Good luck - I will be thinking of you!!
this is why this forum is so valuable! We can all see that we are not alone, we all have these feelings and all of these stupid symptoms, aches, pains, emotions, etc.. Chin up Wubbabear, the lupie roller coaster will go up another hill. We need to be the wind in the sails of each others' life boats. Gently {hugs}
There are lots of options that help treat depression and insomnia that aren't habit forming. As a substance abuse counselor I'm very aware of medications that cause dependency. I generally tell my clients to try some guided meditations to help sleep (you can get free ones from iTunes U or podcasts). There are also meditations that help with pain. Benadryl is also a safe and effective sleep aid. Melatonin is a natural supplement that helps with sleep. Talk to your doctor and don't be afraid to see a psychiatrist if needed.
Hi!!, well feeling like this is part of Living with Lupus. We all have those days , and remember that you are not alone. We are here at anytime for you!smile. Our lives change on day to day base which is really crazy. But we have to teach ourselves that we will fight to the end, just to feel okay through those moments. Only you can do this , people sometimes really don’t know the half of it even if we explained the pain that we suffer with, they can’t begin to know . So some how you have to stand strong and fight these moments to the best of your ability!wish you well…Beverly L.
Thanks for posting I related to you so much. Having Lupus sucks but its good to know that others are dealing with this and are able to still live despite it all. I normally seclude myself from people when I’m having a flare up because I feel hopeless. This time I surfed the web to get help. I feel like I am not so alone reaching out here. Praying for us all.
I definitely can relate to the daily struggles and roller coaster of emotions with this condition. You are definitely not along in this. I will be happy, feeling good and positive and then, bam! ...stuck in a flare and my mood takes a beating along with my body. It does sound like your finance is really trying to help and cares a lot. Keep communication open with him. Is there a local support group you both can join, or can he come to your doctor appts with you? Keep trying to stay positive! Things can get better. If they are not, make sure your doctors know so they can try to change your treatment.