Hi Caryn, Yes you are so right, depression is part of having Lupus sadly. And everyone does manage it differently. We all have different ways of coping. It is hard not having supportive people around when you need them. Thats why i am so pleased i found LWL as there are so many lovely people who do understand and who are supportive when you need them to be. Its true, it doesnt matter how many people you have around you who are trying to support you, it doesnt mean you cant still feel alone. I always think now, how on earth can anyone possibly understand what this is like? As they cant really, as they cant feel what the pain is like, or how it affects us. I also think though if someone is trying at least to be there for you, then at least they are trying.. There have been times when i have felt totally alone, and that i dont fit in anywhere, as everyone is busy doing whatever, and i cant even plan to go anywhere. We cant say yes to anything for definate as we never know exactly how we will be feeling on whatever day it is we are being asked to go wherever. I have been asked to go to so many different places lately, and sadly had to cancel which is very upsetting, and i know the people who i have had to cancel on wont really understand. At the end of the day though we know who we are and what we need and whats best for us, so what right do these people have to tell us what their opionion of whats best for us, when they dont even have a clue about what the illness is or how it affects us. I get alot of what you were saying about eg, get some sun, get some fresh air etc, or if you only did a little bit, say a couple of hours, then you would feel better. I find i can never get across the exhaustion that comes with Lupus. Now if someone asks me how i am feeling, i dont say anything much i just say either so-so or fine as its alot easier, and that way they dont get the chance to tell me whats best for me. It cuts that conversation almost dead really. There are alot of ignorant people out there sadly, and as we will never change that, we have to cope with it in a way thats best for us. The other thing that annoys me is if they see us out and about, and with the malar rash, alot of people assume that means we are really healthy that day. Like i said though, i have given up explaining its the Lupus rash, and that usually means i am having a huge flare. As its almost like these people have selective deafness. I now try and treat myself with kindness and find things that i enjoy, whether its something really simple like laying down watching a favourite televison program, or reading a book, or on a better day going in the garden if its cool and watching the birds fly about, thats enough for me for now. And as i have said i have met so many lovely friends on LWL, who understand what its like to be me. Anyway i wont go on anymore, take care, bye for now, love and hugs Astrid40xoxo
I agree that saying fine is the best way to answer when people ask how you are feeling. It’s sad but true. Thanks for the insight…ttyl
well said Astrid... sounds like my own words... you are exactly right as you explain social life... i now have NO friends because they didnt understand and i didnt want to give them my medical report explaining how all of a sudden i dont feel well, cant go out, etc.
well said Astrid... sounds like my own words... you are exactly right as you explain social life... i now have NO friends because they didnt understand and i didnt want to give them my medical report explaining how all of a sudden i dont feel well, cant go out, etc.
Well said astrid40, couldn't have said it better myself!!!!!!!!!!!!!!!!!!!!!!!! Beverly L.
Caryn said:
astrid40 said:
Hi Caryn, Yes you are so right, depression is part of having Lupus sadly. And everyone does manage it differently. We all have different ways of coping. It is hard not having supportive people around when you need them. Thats why i am so pleased i found LWL as there are so many lovely people who do understand and who are supportive when you need them to be. Its true, it doesnt matter how many people you have around you who are trying to support you, it doesnt mean you cant still feel alone. I always think now, how on earth can anyone possibly understand what this is like? As they cant really, as they cant feel what the pain is like, or how it affects us. I also think though if someone is trying at least to be there for you, then at least they are trying.. There have been times when i have felt totally alone, and that i dont fit in anywhere, as everyone is busy doing whatever, and i cant even plan to go anywhere. We cant say yes to anything for definate as we never know exactly how we will be feeling on whatever day it is we are being asked to go wherever. I have been asked to go to so many different places lately, and sadly had to cancel which is very upsetting, and i know the people who i have had to cancel on wont really understand. At the end of the day though we know who we are and what we need and whats best for us, so what right do these people have to tell us what their opionion of whats best for us, when they dont even have a clue about what the illness is or how it affects us. I get alot of what you were saying about eg, get some sun, get some fresh air etc, or if you only did a little bit, say a couple of hours, then you would feel better. I find i can never get across the exhaustion that comes with Lupus. Now if someone asks me how i am feeling, i dont say anything much i just say either so-so or fine as its alot easier, and that way they dont get the chance to tell me whats best for me. It cuts that conversation almost dead really. There are alot of ignorant people out there sadly, and as we will never change that, we have to cope with it in a way thats best for us. The other thing that annoys me is if they see us out and about, and with the malar rash, alot of people assume that means we are really healthy that day. Like i said though, i have given up explaining its the Lupus rash, and that usually means i am having a huge flare. As its almost like these people have selective deafness. I now try and treat myself with kindness and find things that i enjoy, whether its something really simple like laying down watching a favourite televison program, or reading a book, or on a better day going in the garden if its cool and watching the birds fly about, thats enough for me for now. And as i have said i have met so many lovely friends on LWL, who understand what its like to be me. Anyway i wont go on anymore, take care, bye for now, love and hugs Astrid40xoxo
I agree that saying fine is the best way to answer when people ask how you are feeling. It's sad but true. Thanks for the insight...ttyl
Hi there, it's lovely how concerned you are about your sister.
I'm a manic depressive and some days are really terrible and i cry such alot and what i find helps me is just having someone to loose it all out to how i feel and get no answers back refering you should be doing this etc with your life because only those who suffer it feel what it does to you but there's days where you can go withdrawn.
I have a game coping with it mentally and my sister as just been diagnosed with Lupus and where i need to speak alot...she's just constantley working.
Your sister may need Anti-depressant tablets besides you help and standing by her...it's also worth her seeing her doctor also.
Lupus also causes depression and if the depression kicks in Lupus thrieves off it and can make your symptoms feel worse. xx
That is so TRUE! Back last year I thought I was Loosing my mind -being also a manic depressive patient , it’s hard a lot of the time to function without my mess. ,so stand by your sister and advise her to see the doctor… "and take her mess…Beverly L.
Tez_20 said:
Hi there, it’s lovely how concerned you are about your sister.
I’m a manic depressive and some days are really terrible and i cry such alot and what i find helps me is just having someone to loose it all out to how i feel and get no answers back refering you should be doing this etc with your life because only those who suffer it feel what it does to you but there’s days where you can go withdrawn.
I have a game coping with it mentally and my sister as just been diagnosed with Lupus and where i need to speak alot…she’s just constantley working.
Your sister may need Anti-depressant tablets besides you help and standing by her…it’s also worth her seeing her doctor also.
Lupus also causes depression and if the depression kicks in Lupus thrieves off it and can make your symptoms feel worse. xx
We seem to be in the same situation and how it came about her being tested my Dermo said if you have any siblings tell them to get tested because mine was inherited off my parent/s....so i phoned my youngest sister and she as Lupus in the blood and also Rosacea, where i have Psoriasis, well she's been described steriod cream for her face but otherwise as told me straight i won't go any further taking drugs like yourself to help it.
I always have to phone her as i never hear off her personally.
Beverly L. said:
That is so TRUE! Back last year I thought I was Loosing my mind -being also a manic depressive patient , it's hard a lot of the time to function without my mess. ,so stand by your sister and advise her to see the doctor... "and take her mess...Beverly L.
Tez_20 said:
Hi there, it's lovely how concerned you are about your sister.
I'm a manic depressive and some days are really terrible and i cry such alot and what i find helps me is just having someone to loose it all out to how i feel and get no answers back refering you should be doing this etc with your life because only those who suffer it feel what it does to you but there's days where you can go withdrawn.
I have a game coping with it mentally and my sister as just been diagnosed with Lupus and where i need to speak alot...she's just constantley working.
Your sister may need Anti-depressant tablets besides you help and standing by her...it's also worth her seeing her doctor also.
Lupus also causes depression and if the depression kicks in Lupus thrieves off it and can make your symptoms feel worse. xx
thankyou Beverly L, I am having a real bad flare myself at the moment and could scream. I have just taken a pain killer but it doesnt seem to be shaking off to pain at the moment, so i will see how things go, thats enough to get anyone down isnt it? I try and distract myself away from it as much as i can when it happens but its not easy as you know yourself. Anyway take care, look after yourself, nice speaking to you, bye for now, love and hugs Astrid40xoxo
Beverly L. said:
Well said astrid40, couldn't have said it better myself!!!!!!!!!!!!!!!!!!!!!!!! Beverly L.
Caryn said:
astrid40 said:
Hi Caryn, Yes you are so right, depression is part of having Lupus sadly. And everyone does manage it differently. We all have different ways of coping. It is hard not having supportive people around when you need them. Thats why i am so pleased i found LWL as there are so many lovely people who do understand and who are supportive when you need them to be. Its true, it doesnt matter how many people you have around you who are trying to support you, it doesnt mean you cant still feel alone. I always think now, how on earth can anyone possibly understand what this is like? As they cant really, as they cant feel what the pain is like, or how it affects us. I also think though if someone is trying at least to be there for you, then at least they are trying.. There have been times when i have felt totally alone, and that i dont fit in anywhere, as everyone is busy doing whatever, and i cant even plan to go anywhere. We cant say yes to anything for definate as we never know exactly how we will be feeling on whatever day it is we are being asked to go wherever. I have been asked to go to so many different places lately, and sadly had to cancel which is very upsetting, and i know the people who i have had to cancel on wont really understand. At the end of the day though we know who we are and what we need and whats best for us, so what right do these people have to tell us what their opionion of whats best for us, when they dont even have a clue about what the illness is or how it affects us. I get alot of what you were saying about eg, get some sun, get some fresh air etc, or if you only did a little bit, say a couple of hours, then you would feel better. I find i can never get across the exhaustion that comes with Lupus. Now if someone asks me how i am feeling, i dont say anything much i just say either so-so or fine as its alot easier, and that way they dont get the chance to tell me whats best for me. It cuts that conversation almost dead really. There are alot of ignorant people out there sadly, and as we will never change that, we have to cope with it in a way thats best for us. The other thing that annoys me is if they see us out and about, and with the malar rash, alot of people assume that means we are really healthy that day. Like i said though, i have given up explaining its the Lupus rash, and that usually means i am having a huge flare. As its almost like these people have selective deafness. I now try and treat myself with kindness and find things that i enjoy, whether its something really simple like laying down watching a favourite televison program, or reading a book, or on a better day going in the garden if its cool and watching the birds fly about, thats enough for me for now. And as i have said i have met so many lovely friends on LWL, who understand what its like to be me. Anyway i wont go on anymore, take care, bye for now, love and hugs Astrid40xoxo
I agree that saying fine is the best way to answer when people ask how you are feeling. It's sad but true. Thanks for the insight...ttyl
Hang in there !!! Things will get better (hopefully)…Beverly l.
Tez_20 said:
Hi Beverly,
We seem to be in the same situation and how it came about her being tested my Dermo said if you have any siblings tell them to get tested because mine was inherited off my parent/s....so i phoned my youngest sister and she as Lupus in the blood and also Rosacea, where i have Psoriasis, well she's been described steriod cream for her face but otherwise as told me straight i won't go any further taking drugs like yourself to help it.
I always have to phone her as i never hear off her personally.
Beverly L. said:
That is so TRUE! Back last year I thought I was Loosing my mind -being also a manic depressive patient , it's hard a lot of the time to function without my mess. ,so stand by your sister and advise her to see the doctor... "and take her mess...Beverly L.
Tez_20 said:
Hi there, it's lovely how concerned you are about your sister.
I'm a manic depressive and some days are really terrible and i cry such alot and what i find helps me is just having someone to loose it all out to how i feel and get no answers back refering you should be doing this etc with your life because only those who suffer it feel what it does to you but there's days where you can go withdrawn.
I have a game coping with it mentally and my sister as just been diagnosed with Lupus and where i need to speak alot...she's just constantley working.
Your sister may need Anti-depressant tablets besides you help and standing by her...it's also worth her seeing her doctor also.
Lupus also causes depression and if the depression kicks in Lupus thrieves off it and can make your symptoms feel worse. xx
Hi, sorry t hear a Flare has got you!!! But of course they come without having permission…LOL. Anyway hope it does not last for long !!! As for me I’ve been very tired for the last 2days and in bed -it’s 5pm here in Georgia ,and am just getting up for thevday to start !!!lol. But it’s okay cause there is no one here at home with me -am enjoying the quiet moment !!! Well once again hope you feel better soon … Beverly L.
astrid40 said:
thankyou Beverly L, I am having a real bad flare myself at the moment and could scream. I have just taken a pain killer but it doesnt seem to be shaking off to pain at the moment, so i will see how things go, thats enough to get anyone down isnt it? I try and distract myself away from it as much as i can when it happens but its not easy as you know yourself. Anyway take care, look after yourself, nice speaking to you, bye for now, love and hugs Astrid40xoxo
Beverly L. said:
Well said astrid40, couldn’t have said it better myself!!! Beverly L.
Caryn said:
astrid40 said:
Hi Caryn, Yes you are so right, depression is part of having Lupus sadly. And everyone does manage it differently. We all have different ways of coping. It is hard not having supportive people around when you need them. Thats why i am so pleased i found LWL as there are so many lovely people who do understand and who are supportive when you need them to be. Its true, it doesnt matter how many people you have around you who are trying to support you, it doesnt mean you cant still feel alone. I always think now, how on earth can anyone possibly understand what this is like? As they cant really, as they cant feel what the pain is like, or how it affects us. I also think though if someone is trying at least to be there for you, then at least they are trying… There have been times when i have felt totally alone, and that i dont fit in anywhere, as everyone is busy doing whatever, and i cant even plan to go anywhere. We cant say yes to anything for definate as we never know exactly how we will be feeling on whatever day it is we are being asked to go wherever. I have been asked to go to so many different places lately, and sadly had to cancel which is very upsetting, and i know the people who i have had to cancel on wont really understand. At the end of the day though we know who we are and what we need and whats best for us, so what right do these people have to tell us what their opionion of whats best for us, when they dont even have a clue about what the illness is or how it affects us. I get alot of what you were saying about eg, get some sun, get some fresh air etc, or if you only did a little bit, say a couple of hours, then you would feel better. I find i can never get across the exhaustion that comes with Lupus. Now if someone asks me how i am feeling, i dont say anything much i just say either so-so or fine as its alot easier, and that way they dont get the chance to tell me whats best for me. It cuts that conversation almost dead really. There are alot of ignorant people out there sadly, and as we will never change that, we have to cope with it in a way thats best for us. The other thing that annoys me is if they see us out and about, and with the malar rash, alot of people assume that means we are really healthy that day. Like i said though, i have given up explaining its the Lupus rash, and that usually means i am having a huge flare. As its almost like these people have selective deafness. I now try and treat myself with kindness and find things that i enjoy, whether its something really simple like laying down watching a favourite televison program, or reading a book, or on a better day going in the garden if its cool and watching the birds fly about, thats enough for me for now. And as i have said i have met so many lovely friends on LWL, who understand what its like to be me. Anyway i wont go on anymore, take care, bye for now, love and hugs Astrid40xoxo
I agree that saying fine is the best way to answer when people ask how you are feeling. It's sad but true. Thanks for the insight...ttyl
Hi moondance, its funny you should say this today, as i went down to the shops with a neighbour today who had been out for the night last night who said to me that she had been discussing me with another friend of hers saying that i never go out and that i dont have a social life as such. Anyway i thought well perhaps she shouldnt be doing that, but i think her intentions were good in a way. I said well no, you are right as i cant organise anything because if i do, i never know how i am going to be feeling, then if i am not up to something on the day and have to cancel, people end up getting annoyed with me and so its not worth it. I said i can understand that as they are disappointed. And i say i am sorry as i understand that they must be very disappointed. And i emphasize the word disappointed when i used to apoligise, now though i just dont make arrangements to do anything that way i dont have to cancel anything. I remember last year i was due to go to a wedding with my husband, it was a friend of his. I had bought an outfit and was all set to go, and then on the day i got really ill. We phoned them to let them know, anyway i could hear them having a right go at Dave (my husband) as they had made arrangements over food etc, and said that we should of let them know earlier, but Lupus just doesnt work like that, he was trying to tell them,. they were saying rubbish to my husband. Its like a battle each time. So i thought i just give up. And thats how its been ever since really. If i want to go out now, if i feel alright i go out say somewhere local, if i am feeling up to it, that way i am not letting anyone down. I am so sick of explaining to everyone what is what. It was also like today when i was with this neighbour i went into my friends cafe, and she said to me, you are looking really well, as i said i had my neighbour with me who actually for a change said, well thats when she, (meaning me!) is at her worst!, so then i said yes i am not well at the moment. So my friend who runs the cafe said, oh yes i forgot about that. I dont know about you, but i really dont think the malar rash we get looks particularly healthy, its not pretty is it, its not a healthy looking glow sort of look, in fact it looks more of a either flustered look or unhealthy look to me whoever i have seen with it in photos of people with Lupus or when i have had it so how people mistake it for looking healthy goodness knows, eh? I totally understand where you are coming from moondance. Anyway you keep going, you have some good friends on here, including me. And hopefully we can keep you going and smiling abit. Janice posts some wonderful pictures bless her, sadly she isnt too well at the moment. I will have to learn how to copy/paste, hehe. I am a techo idiot, i am getting there though, hehe. Anyway my friend, you take care, look after yourself, thinking of you, bye for now, love and huge hugs Astrid40xoxo
Oh my, is there anyone whom knows how to get in touch with her??? Or my you can contact the RedCross , and ask them to help you find her ??? That's what I did to help my mother find her brother when another family member past away last year... Well wish you best of luck and remember to rest and don't Stress...Beverly L.
Tez_20 said:
Beverly that's all we can do, i have another sister living in spain but can't tell her as we lost getting intouch 7yrs ago. xxx
Beverly when my mom past away and she went back to spain after the funeral, i phoned her not long after and she told me she'd moved across the island and i asked her where and she would'nt tell me, we're not a very close family to say we're 3 sister's but as long as i've got my hubby who worries stiff about me that's all that matters.
Beverly i have no choice on the resting.lol but at the moment i'm freezing with my Raynauds....i stress more now than i've ever done. You take it easy also. x
Hi Beverly L, Thankyou for your lovely message. yes, this flare is a pain, my doctor is away at the moment, and all the other docs in the practice where i go are useless when it comes to helping with the Lupus, so my doctor says to me just up the steroids if i need to, so thats what i have done for now, i have upped them by 5mg, i can up them by 5mg more if necessary, i am hoping i wont have to, its only been a few days so far, so i will see how things go. My husband is going off to Scotland for a few days work tonight, its typical isnt it, just when you need someone at home with you, hehe. Anyway i will be okay, i have lived alone before, so its not a big deal. Its 11pm here, he is travelling at night, as they start work in the morning, i have just thrown my quilt off as i am having one of the hot moments. I love Georgia. My husband has a little girl called Georgia who lives with her mum, she is very pretty. He called her after the place. I like the song Georgia too, hehe. Ah well, i hope you have a good day, thankyou for the good wishes, bye for now, take care, look after yourself, love and hugs Astrid40xoxo
Beverly L. said:
Hi, sorry t hear a Flare has got you!!! But of course they come without having permission....LOL. Anyway hope it does not last for long !!!! As for me I've been very tired for the last 2days and in bed -it's 5pm here in Georgia ,and am just getting up for thevday to start !!!!lol. But it's okay cause there is no one here at home with me -am enjoying the quiet moment !!!!! Well once again hope you feel better soon .... Beverly L. astrid40 said:
thankyou Beverly L, I am having a real bad flare myself at the moment and could scream. I have just taken a pain killer but it doesnt seem to be shaking off to pain at the moment, so i will see how things go, thats enough to get anyone down isnt it? I try and distract myself away from it as much as i can when it happens but its not easy as you know yourself. Anyway take care, look after yourself, nice speaking to you, bye for now, love and hugs Astrid40xoxo
Beverly L. said:
Well said astrid40, couldn't have said it better myself!!!!!!!!!!!!!!!!!!!!!!!! Beverly L.
Caryn said:
astrid40 said:
Hi Caryn, Yes you are so right, depression is part of having Lupus sadly. And everyone does manage it differently. We all have different ways of coping. It is hard not having supportive people around when you need them. Thats why i am so pleased i found LWL as there are so many lovely people who do understand and who are supportive when you need them to be. Its true, it doesnt matter how many people you have around you who are trying to support you, it doesnt mean you cant still feel alone. I always think now, how on earth can anyone possibly understand what this is like? As they cant really, as they cant feel what the pain is like, or how it affects us. I also think though if someone is trying at least to be there for you, then at least they are trying.. There have been times when i have felt totally alone, and that i dont fit in anywhere, as everyone is busy doing whatever, and i cant even plan to go anywhere. We cant say yes to anything for definate as we never know exactly how we will be feeling on whatever day it is we are being asked to go wherever. I have been asked to go to so many different places lately, and sadly had to cancel which is very upsetting, and i know the people who i have had to cancel on wont really understand. At the end of the day though we know who we are and what we need and whats best for us, so what right do these people have to tell us what their opionion of whats best for us, when they dont even have a clue about what the illness is or how it affects us. I get alot of what you were saying about eg, get some sun, get some fresh air etc, or if you only did a little bit, say a couple of hours, then you would feel better. I find i can never get across the exhaustion that comes with Lupus. Now if someone asks me how i am feeling, i dont say anything much i just say either so-so or fine as its alot easier, and that way they dont get the chance to tell me whats best for me. It cuts that conversation almost dead really. There are alot of ignorant people out there sadly, and as we will never change that, we have to cope with it in a way thats best for us. The other thing that annoys me is if they see us out and about, and with the malar rash, alot of people assume that means we are really healthy that day. Like i said though, i have given up explaining its the Lupus rash, and that usually means i am having a huge flare. As its almost like these people have selective deafness. I now try and treat myself with kindness and find things that i enjoy, whether its something really simple like laying down watching a favourite televison program, or reading a book, or on a better day going in the garden if its cool and watching the birds fly about, thats enough for me for now. And as i have said i have met so many lovely friends on LWL, who understand what its like to be me. Anyway i wont go on anymore, take care, bye for now, love and hugs Astrid40xoxo
I agree that saying fine is the best way to answer when people ask how you are feeling. It's sad but true. Thanks for the insight...ttyl
Sorry that things are not good with your sisters but at least your hubby is there for you !!! Well hope that this site will be enjoyful for … Stay warm as much as possible… Because when I get cold the pain is very bad . Well hope you feel better soon and talk with you later …Beverly L.
Tez_20 said:
Beverly when my mom past away and she went back to spain after the funeral, i phoned her not long after and she told me she’d moved across the island and i asked her where and she would’nt tell me, we’re not a very close family to say we’re 3 sister’s but as long as i’ve got my hubby who worries stiff about me that’s all that matters.
Beverly i have no choice on the resting.lol but at the moment i’m freezing with my Raynauds…i stress more now than i’ve ever done. You take it easy also. x
Beverly i've tried hard with my sister's over the years but i did tell my youngest sister to get tested and she let me know the outcome and i've not heard from her since.
My hubby ste as been brilliant with my seizures and everything else before i had the lupus diagnosed but this last stroke as worried him stiff about me but he's a golden bloke.
I'm loving the site and the member's are so great to chat to like yourself and it's a place where i can vent extra to take the ease of ste knowing member's have the same who want to comment. We've still got the radiators on now in april and i'm wearing thermals which carries on through the summer as i'm never relieved of them and besides that i have to type in white gloves as it's getting now like frost bite, i bet you feel the same.
Beverly takecare yourself Tez xxx
Beverly L. said:
Sorry that things are not good with your sisters but at least your hubby is there for you !!!! Well hope that this site will be enjoyful for .... Stay warm as much as possible.. Because when I get cold the pain is very bad . Well hope you feel better soon and talk with you later .....Beverly L.
Tez_20 said:
Beverly when my mom past away and she went back to spain after the funeral, i phoned her not long after and she told me she'd moved across the island and i asked her where and she would'nt tell me, we're not a very close family to say we're 3 sister's but as long as i've got my hubby who worries stiff about me that's all that matters.
Beverly i have no choice on the resting.lol but at the moment i'm freezing with my Raynauds....i stress more now than i've ever done. You take it easy also. x