When I was first diagnosed with lupus I was surprised with how much support I found
My friends an family put so much effort into helping me get through the days, and on many day they were all I had.
A year later nothing has changed medically for me. If anything I have only gotten more sick. I have headaches and pain
And fatigue that challenges daily activities. Chemo and steroids make me angry and unhappy and my friends and family
Have become very tired of taking care of me. I have become really sad because it seems like people have given up on the idea of me getting better
My friends don’t hang out with me as much or thy make excuses for why they haven’t called. I spend a lot of time alone. The friends I do see have trouble
Understanding how feel and my boyfriend is constantly angry at how I have been acting. Is there something I can do to make myself better around others? I
I am tired of this too and would love to get better but at the moment that isn’t happening. I need some ideas. Thanks!
Harley, I understand your pain, and I have experienced the things that you are speaking of. Unfortunately I don't have any answers, but know that you are not alone in the way that you are feeling, I will stay in touch to see if any one came up with any solutions. This will be interesting. Many blessings and hugs xoxoxo
You sweet dear. I can understand you sadness and frustration as you live with a chronic illness. This path is NOT easy and for many of us, it seems endless, but you’re not alone. I agree with Ann. Finding others who are coping with a chronic disease can help you because they can relate even if they don’t have lupus. They’re empathetic in a way that someone who is healthy cannot understand.
I also find, for myself, that having a close relationship to my “higher power” (for me, it’s Jesus) keeps me from being depressed. I sit and rest, and listen while a great peace comes over me. Even in the midst of my physical pain, when I focus on God, just think about Him, I feel like I can rise above my circumstances. I try to do this several times throughout the day, but especially if I feel stressed. I usually have positive worship music, but you can use relaxation music if you prefer.
Yoga stretching and breathing is also a wonderful tool for physical and emotional well-being. I would HIGHLY recommend you find a class near you. Getting out and being in a live class is good for you (unless you’re physically unable).
And lastly, if you’re able, serving others less fortunate than you in some capacity will also help as it will cause you to focus on something positive rather than thinking about your pain and illness.
Sometimes motivating myself to do these things can be my greatest obstacle, but when I force myself and do them (if I’m not too fatigued) then I feel so much better.
I hope my suggestions may help you.
dear harley, welcome to the group & I’m sorry to hear you’re feeling bad. everytime I passed a company that was going out of business my ex husband would say location, location, location, location. this .week I am applying that in a different way the. lupus. I have a good support system. I have found myself pulling away from them and spending more and more times alone in a lupus self pity party. the more I focused on how sick I was the more stressed out & depressed I became. which made my flare up even more worse. finally my doctor said to me a big part of this disease is attitude~ get a better 1! yes , there is no cure ( yet), & I may not return to my pre lupus state of physical health. I am applying my ex husband statement with my doctor’s advice. lupus may control my health, but unlike a company n a bad location, I don’t have to let lupus put me out of business~Attitude, attitude, attitude, attitude!Even when I feel like crud, I can still have a good day. plus, I now have the understanding support of others who are going through the same illness ; -)
Harley,
Urgh, some days I am in so much pain that all I want to do is escape, whether it be tv or magazines or just sleeping. These things are usually not possible as I have two young boys who demand a lot of attention, or look out! Thank goodness for my husband and inlaws, but I can tell you I have no friends to speak of anymore. It just got to be too depressing to not be able to do anything. I haven't gone out with friends (aside from occasional dates with my husband) in years. Any time I have that I feel decent I dedicate to my boys. As far as being graceful and whatever you want to call it through all of this, just try to put into perspective that the world does not revolve around you. I am not trying to be harsh, it is just something I have to remember to be civil--especially on the bad (and impossible) days. Make sure no matter how crappy you feel that you ask others how they are doing too. Empathy can go a long way and will help people look at you as a friend/girlfriend again and not just someone who needs help. I hope this helps. I feel for you!!
Kerri
Thank you so much for all of these comments they have helped me a lot. I am comforted knowing that others have felt this way.
Hello worshipgirl, please to meet you. My name is fighter, and I just want to say that I love your positive spriritual energy and your wonderful personality. I myself love the lord and he is my rock as well when things seem to be crumbling down around me and when things are good. You are right, he is awsome and he makes it all right. What a wonderful God we serve, amen? Many blessings and hugs xoxoxo
worshipgirl said:
You sweet dear. I can understand you sadness and frustration as you live with a chronic illness. This path is NOT easy and for many of us, it seems endless, but you're not alone. I agree with Ann. Finding others who are coping with a can help you because they can relate even if they don't have lupus. They're empathetic in a way that someone who is healthy cannot understand.
I also find, for myself, that having a close relationship to my "higher power" (for me, it's Jesus) keeps me from being depressed. I sit and rest, and listen while a great peace comes over me. Even in the midst of my physical pain, when I focus on God, just think about Him, I feel like I can rise above my circumstances. I try to do this several times throughout the day, but especially if I feel stressed. I usually have positive worship music, but you can use relaxation music if you prefer.
Yoga stretching and breathing is also a wonderful tool for physical and emotional well-being. I would HIGHLY recommend you find a class near you. Getting out and being in a live class is good for you (unless you're physically unable).
And lastly, if you're able, serving others less fortunate than you in some capacity will also help as it will cause you to focus on something positive rather than thinking about your pain and illness.
Sometimes motivating myself to do these things can be my greatest obstacle, but when I force myself and do them (if I'm not too fatigued) then I feel so much better.
I hope my suggestions may help you.
worship girl I like your suggestions also
fighter said:
Hello worshipgirl, please to meet you. My name is fighter, and I just want to say that I love your positive spriritual energy and your wonderful personality. I myself love the lord and he is my rock as well when things seem to be crumbling down around me and when things are good. You are right, he is awsome and he makes it all right. What a wonderful God we serve, amen? Many blessings and hugs xoxoxo
worshipgirl said:You sweet dear. I can understand you sadness and frustration as you live with a chronic illness. This path is NOT easy and for many of us, it seems endless, but you’re not alone. I agree with Ann. Finding others who are coping with a can help you because they can relate even if they don’t have lupus. They’re empathetic in a way that someone who is healthy cannot understand.
I also find, for myself, that having a close relationship to my “higher power” (for me, it’s Jesus) keeps me from being depressed. I sit and rest, and listen while a great peace comes over me. Even in the midst of my physical pain, when I focus on God, just think about Him, I feel like I can rise above my circumstances. I try to do this several times throughout the day, but especially if I feel stressed. I usually have positive worship music, but you can use relaxation music if you prefer.
Yoga stretching and breathing is also a wonderful tool for physical and emotional well-being. I would HIGHLY recommend you find a class near you. Getting out and being in a live class is good for you (unless you’re physically unable).
And lastly, if you’re able, serving others less fortunate than you in some capacity will also help as it will cause you to focus on something positive rather than thinking about your pain and illness
Sometimes motivating myself to do these things can be my greatest obstacle, but when I force myself and do them (if I’m not too fatigued) then I feel so much better.
I hope my suggestions may help you.
I have twins. that or 8 years old. I also have a 15 year old. they are all boys so there is never a dull moment at my house. bipolar, o d d, & a d h d are the companions of my children. the 15 year olds is bipolar. 1 twins has o d d & the other twin has a d h d. I have been sick for the last 20 years. but just got the lupus official diagnosis in the last 7 years. the rheumatory arthritis diagnosis came in 1994 the fibromialgia diagnoss came with n the last 5 years. some days I am and so much pain all I can do is lay in bed and cry. I am a single mom going through a divorce. the world does not care that there are days I cannot even get dressed or walk. life does not stop just because I have a dilemma. it is hard to keep up so I under stand what the other mama said. but I just keep moving forward 1 day at a time.
Hay Harley, So that you are experinceing this at this moment . Try not to STRESS to much ( the FLARES are really BADDDDD) . Well to introduce myself ," my name is Beverly L., am 44years old , i've had LUPUS for 1year and counting , since Feb.7,2011, and man it really feeels like a lifetime !!! smile . But anyways getting on with this , being affected with this diasease it's really hard not only on us ,"Living with LUPUS " , but also our close family and friends ... I went though this and i thought that my world was abanning me (when i REALLY NEEDED THEM the MOST ) !!! Am not going to tell you how you should / shouldn't feel about this situation , because you know your people better than me .smile But the advise that i can say and free of will to give to you is be relaxed and comfortable around them about this LUPUS stuff , they REALLY are afraid of this , not knowing what to think / do / and or say to you , ( it's really hard on them just as much as it is on you ), so remember to just relaxe and try not to Stress to much - okay ??? Yes, it's hard and maybe even get harder , but think , " It's about me and am the one whose going through this pain , and share information with them ( those that want to know )- it really helps for them to start back feeling at ease with the sitaution of this Lupus stuff. I hope that this comforts you in some way or another , but also remember that you are not ALONE Living with LUPUS , we can talk at anytime ..... Beverly L.
i know this is true for me too....but here we never get tired of one another---and God is not tired of us either
love you as always rachel....you are a constant joy to me even when you are suffering...your spirit shines through the gloom. you are an instrument of peace
Rachel Simpkins said:
Unfortanely, with Lupus, only the ones who have Lupus can TRULY understand...Its best not to stress on who doesnt
help you, its best to stay positive, in o.k. im sick, what can I do to stay happy, how can I feel good about myself, even
when im sick with these meds...I understand as I am the one who started the Breaking Point Discussion, as I have reached mine...but my quote was I lost Faith in Lupus, but Never will lose Faith in the Lord.....Dont look for MAN
to comfort you look to Jesus, ask him what he can do for you.....I also attend a Support group in my State, if you have support groups where you live? You will be around others just like you and get extra help from the Social Worker on things that are bothering you> It has truly worked for me because Each time their is a meeting I go tired and walk out on top of the world with these beautiful friends.....You will be in my Prayers...Luv Rachel
Harley, it is hard when we realize this lupus gig is an ongoing thing...I keep waiting for the bell to ring and wake me up from the crazy dream.
tonight i am so stressed.
i am just glad you are all here to connect with
I know what you are saying about getting all this support and then it is like you family and friends can only give so much and they kind of forget that you are still sick. I just try not to talk about it with some people and try to connect with them on other things that we have in common. I am planning on starting up a face to face support group for people with auto immune diseases in my area becuase I think being able to vent and discuss our lupus struggles with folks who are going through similar things is important. I think people also get sort of scared or are uncomfortable with illness and just don't know how to react when the person just does not get better. Maybe you could find support in a local lupus organization or group?
AMEN!!!!! Janice. Please be sure to read my discussion I know you, Rachael, and the others will like. Many blessings and hugs xoxoxo
I understand perfectly! I have lost "friends" and some family over the years when I was sick but didn't realize it was lupus. All I knew was I was so tired, my body ached, and my face had horrible blotches, so I didn't want to be in public. I think some got tired of trying, and some took it personally. But in the long run, I have my daughter, who has Ehlers Danlos and is 9 hours away, my wonderful husband and the best mother--in-law ever! I'm grateful for these 3 and the friends I'm making online. ; ) You are not alone.