I'm having a super hard time coping with the changes I have to make in my life right now. Just when I think maybe I'm o.k., I try to do something normal like I used to, and BAM, reality kicks in. My body says "I don't think so".
I went out with my husband and friends for his birthday. He is very social and has a lot of energy, is younger, and can still party till the wee hours. I can barely make it through a dinner because when I get off schedule it throws off my sleep. I get really anxious in social situations-even with my closest friends. My body is different now. So i came home after dinner, bowling, and Karaoke (which i used to love). My husband is still out which is fine. But I feel nauseous, and have a headache, and my brain feels tired and stressed. I only had one glass of wine at dinner, and 2 sips of a drink several hrs. later. But tomorrow I have to work in the nursery at church and then am sort of expected to attend an important all chruch meeting (my husband doesn't come with). I am pretty sure I will be paying for this social event, when I just wanted to celebrate with my husband like we used to.
I am mourning the loss of my social life, singing in choir; singing in general, teaching music, feeling well enough to enjoy my kids, and all of that. It's hard for others to understand. People say 'you look great! you look so much better than before your surgery.' but i usually don't feel great and get tired of faking it. i'm kind of underweight (i'll not complain about that-that's one positive as long as i stay nourished). i should just go out in public the ratty way i look around the house and then maybe peopld will get it!!!
So, I'm sure you've all had to change your lifestyles in some way. How do you deal with it? How do you keep your relationships together? Your friendships, your jobs. Does anyone else have this problem with anxiety that's different than before? It doesn't seem to matter how much deep breaths I take. when i'm around people i'm stressed. i need a lot of quiet time.
well, it's late. way late for me, and i know i'll be up for a while.
Thanks for all of your support. It helps to vent with others in the same boat.
I would also like to kniw of any copping mechanisms. I used to always go out. Was, the life of the party. Now my friends beg for me to leave the house. And I want to so bad. But I know how it’ll turn out.
Hi guys, Jude here again gee i seem to be chipping in here alot recently and its supposed to be my husbands page, but for one he is so useless on the computer and two he doesnt always have the energy to sit at the computer...so here i am again. I wanted to just share with you what i have learnt about the coping thing. Not only does my experience come from being the wife of someone with Chronic Lupus and Fibro but as someone who had to learn to live my life in a different way. Seven years ago we had to say goodbye to our son and let him go to heaven early..... What i have learnt in those 7 years is that my life will never be the same ever. It is a hard thing to accept and i can remember the days before he died grieving not only for him but for our old lives, the life where we were innocent to grief, pain and loss of life as we knew it.... this is the same for all of us living with Lupus, EVEN AS A WIFE OF A PERSON WITH LUPUS, I HAVE A DIFFERENT LIFE TO LIVE AGAIN. My life too has changed as well as Jons and ACCEPTANCE IS HALF THE BATTLE....... once you accept the fact that this new life is going to be different then you can make the changes necessary to carry on and live that life to the best.......
This is about taking control of yourself, your wellbeing, your choices for medication, your choices for lifestyle because ultimately you are the one living your life with this illness. It is hard for the partners of those who are ill with Lupus, the person they once knew to be active and vibrant and well has gone and they too need to learn how to live a new life.... dont get me wrong i have my bad days and even last week broke down in the supermarket in tears because i was so tired of caring for my sick husband and my 7 children. But guys i guess its the old story what doesnt make us will break us... and your partners are going to prove themselves either way.... But in the end you are the one that has control of your life, you are loved most likely by others, and you have love and lessons still to give in return...Many people are hurting in this world and if amongst our own pain we can still reach out to them then we have begun healing ourselves...... Stay strong always xo Jude (Jons Wife from New Zealand)
ps keep looking at the photos of you all and must say what a great looking bunch we all are here on LWL lol
If JON's to ill to put his hands to the pc...then why not yourself, the sites not just for patients but also family's and friends besides....so you carry on as you seem to be giving off sound advice.
Love Terri xxx
JON said:
Hi guys, Jude here again gee i seem to be chipping in here alot recently and its supposed to be my husbands page, but for one he is so useless on the computer and two he doesnt always have the energy to sit at the computer...so here i am again. I wanted to just share with you what i have learnt about the coping thing. Not only does my experience come from being the wife of someone with Chronic Lupus and Fibro but as someone who had to learn to live my life in a different way. Seven years ago we had to say goodbye to our son and let him go to heaven early..... What i have learnt in those 7 years is that my life will never be the same ever. It is a hard thing to accept and i can remember the days before he died grieving not only for him but for our old lives, the life where we were innocent to grief, pain and loss of life as we knew it.... this is the same for all of us living with Lupus, EVEN AS A WIFE OF A PERSON WITH LUPUS, I HAVE A DIFFERENT LIFE TO LIVE AGAIN. My life too has changed as well as Jons and ACCEPTANCE IS HALF THE BATTLE....... once you accept the fact that this new life is going to be different then you can make the changes necessary to carry on and live that life to the best.......
This is about taking control of yourself, your wellbeing, your choices for medication, your choices for lifestyle because ultimately you are the one living your life with this illness. It is hard for the partners of those who are ill with Lupus, the person they once knew to be active and vibrant and well has gone and they too need to learn how to live a new life.... dont get me wrong i have my bad days and even last week broke down in the supermarket in tears because i was so tired of caring for my sick husband and my 7 children. But guys i guess its the old story what doesnt make us will break us... and your partners are going to prove themselves either way.... But in the end you are the one that has control of your life, you are loved most likely by others, and you have love and lessons still to give in return...Many people are hurting in this world and if amongst our own pain we can still reach out to them then we have begun healing ourselves...... Stay strong always xo Jude (Jons Wife from New Zealand)
ps keep looking at the photos of you all and must say what a great looking bunch we all are here on LWL lol
Once you've got Lupus working it's highest in your system and actually waring you out...life adjustments have to happen, it might sound easy reading this after living such an active life and yes we all look so "PERFECT" to other's and outsiders but never mind what they think, who's suffering you or them....i have'nt got the time for ignorant people.
My hubby loves meeting up at Rover meets for the cars and then we have a meal out but come 10pm at night when those tablets have been took we're soon back home as he understands that's it for me for the night and the pub starts Karaoke at 10pm but before the lupus came on stronger 5yrs ago which i never knew i had...besides other issues my mind was always active and having OCD does'nt help one bit....oh but the lots had to change now i tried to keep going and the pain i was putting myself through was terrible...so slowly over time i've paced my body daily and if i need to rest that's it i rest.
You may think it sounds easy coming from me but in time your mind and body will adjust slowly.....i've had to and it's not as if i'm in my 80s and got no choice i'm 44.
Oh mate if i was by you, i'd give you a large hug because Lupus is one difficult issue alone but can be over ridden when looked at in different aspects concerning your life and daily routine.
I completely understand My husband helps me as much as he can and he's my only support right now I have applied for social security and am waiting on an answer. I was working too help bring in money but now am un able to work. I just cry and cry by myself I try to stay strong but the stresses of life is hard. What seems normal to others like getting up and doing dishes or laundry I can't do and I get so mad at people for it!
You seem like myself i only have my hubby for support and my 2nd family is LWL and i'd be totally lost without you all...as your all my next shoulder to cry on when i need it....i really hope and fingers crossed it comes through for you the disability.
Crying constant like you are will stress your system more and lupus alone loves this....when i hear member's such as yourself and nicole more or less crying out for the clock to be turned back, it makes me feel i wished i was by you to talk to and also give you a large hug.
I know exactly what you mean! To not be able to do those simple things (our laundry and dishes are piled up like crazy, and I have to let it go), is really frustating and one day i said "I've never wanted to be able to do house work so bad in my life!"
Also, I am from IL originally. Been in CA 10 years, but grew up in Arlington Heights, a suburb of Chicago.
hopingforacure said:
I completely understand My husband helps me as much as he can and he's my only support right now I have applied for social security and am waiting on an answer. I was working too help bring in money but now am un able to work. I just cry and cry by myself I try to stay strong but the stresses of life is hard. What seems normal to others like getting up and doing dishes or laundry I can't do and I get so mad at people for it!
This is still all so new to me, I have been experiencing the fatigue for a long time, I just didn't know what it was all about. I went to a family reunion yesterday, and I think I over did it. I stayed out of the sun, but it was a hot day and after we got home I made 4 or 5 trips to bathroom. Taking naps is a new thing to me, but I laid down and when I awoke, I was amazed that I had slept for over 2 hours. I'm having trouble sleeping at night, and I just got up since I was just laying there awake. I will try again soon. It will be hot at work tomorrow, and I'm sure I'll be wiped out at the end of the day. I'm blessed with an understanding husband.
You can do to much and your body will let you know, it's like i said to Nicole you must pace your daily life because if not you feel your symptoms alot more...then it gets where you feel run down.
I think we're both blessed to have such understanding husbands. xxx
Hi Nicole...omg...I went to Arlington High School in Illinois. Lived about a mile from Arlington Park Race Track! (Only thing I'm remembering right now! I've lived in CA for over 30 years now.
Now for the topic...I too, have anxiety issues and have medication for it. However, because I'd rather not get addicted to anti-anxiety meds, my dr. told me to try a natural supplement called 'Valerian'. I didn't have too much hope, but I found it does work for me! I'm so glad not to take as much anxiety medication (Plus, you can't have a glass of wine when you take it.) The Valerian settles me a great deal. I normally take it if I've had a decent night sleep as it does tend to make me sleepy, or take it when I don't have to do anything. I hope this helps. Kathy
That is crazy that you're from Arlington Heights and now in California! I would have gone to Arlington High, but it closed down and I had to go to Hersey. My family goes to the race track every year for Fathers' Day back home. I have lived here for 10 years now. Wow!
Thank you for your input. I'm glad Valerian works for you-you are very lucky. I've tried all the natural stuff and finally found something that works-Clonazepam. Before I knew about Lupus I really wanted to get off it, but it was too hard. So the addiction part sucks. But being able to sleep for me-it's worth it. I can't afford to not take it. I still need plenty of down time at night though-I'm really sensitive with anxiety and have to stick to my routine.
Take care!
Kadeeeee said:
Hi Nicole...omg...I went to Arlington High School in Illinois. Lived about a mile from Arlington Park Race Track! (Only thing I'm remembering right now! I've lived in CA for over 30 years now.
Now for the topic...I too, have anxiety issues and have medication for it. However, because I'd rather not get addicted to anti-anxiety meds, my dr. told me to try a natural supplement called 'Valerian'. I didn't have too much hope, but I found it does work for me! I'm so glad not to take as much anxiety medication (Plus, you can't have a glass of wine when you take it.) The Valerian settles me a great deal. I normally take it if I've had a decent night sleep as it does tend to make me sleepy, or take it when I don't have to do anything. I hope this helps. Kathy
Isn't it crazy?! When I saw Arlington Hts., I was stunned! I'm a rare and valuable artifact obviously. I graduated in 1964!
I've always been stronger than most, but every now in that something strange would happen. Most often extreme fatigue. After a MRSA surgery a couple of years ago, I woke to find this strange feeling. Thought it was just the surgery and that with time it would pass like 'it' always did. It didn't and was diagnosed with lupus the end of last year. I, too, like chlonazepam for sleep, but my dr. said the addiction to that med is insane to recover from. So, she lowered my dosage and said if I need more to stop by the office, she will refill for me, but she wants to keep an eye on it. She recommended the Valerian as a substitute when I can, so that's what I'm doing. So far, it's okay, but of course not as good as the chlonazapan.
I'm excited to meet someone here from my hometown too!
Did the strange things happen before diagnosis? I've had strange and unexplainable symptoms for years, and now I can see why. Different things-severe esophagal pain lasting for days that seemed muskoskeletal. Everything checked out ok. A problem with my middle ear. My hair breaking and having a patch in front that's thinner. And I was recently 'semi' diagnosed after a surgery when I still didn't feel right.
Anyway, for me fatigue is the absolute worst. Has yours resided at all?
I struggle every day with this too. It is probably the part of Lupus I hate the most. My husband and I can't seem to get on the same page about this. He still wants me to be out there -doing stuff. That alone causes me extreme anxiety. If I told him the truth every time- that I just don't feel well, I become like the boy who cried woof. He stops listening to me. After a while, no matter how much someone loves you, you have to stop saying it is the Lupus. It just isn't good enough anymore. So, I have to come up with other excuses. It sucks. I wish at times that I didn't have to be married. It is hard enough taking care of my childrens needs- but adding on a husband and his needs to. I just want to be alone. I have these horrible headaches everyday. My headaches lead to nausea....But the groceries don't buy themselves, and the house doesn't get clean by itself...add my work, kids activities, the everydays needs of a family of five and by the end of the day, well, I just feel lucky I made it through. The last thing I want to do is go out. I want my bed. I need to rest. I want to die. But he is home from work and wants to go out, talk, have "bedroom time". Ahhhh. He takes it personally. I hurt his feelings, he wants the woman he married back. But I am not her anymore. It is the same with friends. I avoid making future plans with them because I don't want to be stuck doing something if I don't feel well. Also, volunteering at chuch and the kids school. I am afraid to obligate myself when I don't know what I will be like on the day I promised to help. Most people know I have Lupus, but again, I rarely cry "Lupus" unless I really need to. I don't want people to think I use it as an excuse. Like I am not being truthful. I don't think most people really understand it and since from the outside we look ok. If you tell someone you are too sick to do something they expect to see some outward appearance of illness. But like you said, we look fine. I too mourn for my former self. Don't worry though, since we are on this website, at least we know we aren't alone. I know it didn't heally help answer your needs, but I just thought I'd let you know that there are people who understand what you are going through.
((hugs))
Cassie
BTW: My hubby and I are talking about moving to a smaller house so we can cut our mortgage in half. I hope to quit my job soon. I have convinced him that I am no longer "wonderwoman". I have to cut back on what I do, and how I spend my energy.
My husband says I've changed personalitywise too. This is coming from a man who is terminal but is on a clinical trial. He's doing a lot better than he was. The thing is, he has something I don't have. I think he has a stronger will than I do at this point. He just seems to keep on trucken, no matter what. I wish I could. He says he doesn't know if it is the medication I take or what. I take that as a criticizm and that's the reason I want to make sure I don't get addicted. Yet I know most of these drugs are addictive. So, I tend to withdraw more into myself. I don't want to say something that will be construed as something different than what I intended. He has always been somewhat critical but I can't rebut any more. I'm haing a sad spot I guess. Sorry, for being a downer. I just don't know how to handle this. He's too close to ignore.
Terri xxx