I am newly diagnosed with Lupus, about 3 months ago. I've been going through it for probably about a year, but lately I just don't have the energy to do anything. I push through to make it through the day at work and by the time I get home, I'm so exhausted, all I want to do is lay down. I have a 12 1/2 year old daughter, a 13 year old step-son and a wonderful husband. He and I have been together for almost 7 years, but just married this past September 1. He and I have been having a very difficult time because of my illness. I have always been a very healthy, and extremely active person before my illness. I always took care of him, the kids, the house, the yard, pretty much everything. He's having a difficult time coming to terms with the fact that I can't do all that anymore. I think he has been in denial. He was always saying, "we'll figure this out and we'll get you better". I don't think he really ever thought that it could be a chronic illness that I would have to deal with the rest of my life. Because I don't physically look sick, I think it's hard for him to understand and come to terms with. I don't know what to do. I just can't be the person that I used to be and I've tried to tell him that. I may go into remission and be wonderful again, but right now I'm not and he just can't get that. He also gets upset because I'm not as socially active as I used to be. I just don't feel like interacting with people and being "on". What do I do? What do I say to him to make him understand? I feel like I'm living in my own personal **** right now. I don't even enjoy life anymore. HELP!!!!!!:worried:
Help!!!
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If you have a good doctor, then you may want to bring him into an appointment with you to the rheumy. Sometimes with it coming from a doctor it can kinda force them to understand. Men really want to fix things, including us when we're sick so he is going through a very difficult time on his own right now too I'm sure. Sometimes it's probably harder to feel so helpless and be on the outside....
As time passes, if you have a solid relationship, then the relationship will adjust and grow into what it needs to be given your health situation. Overall it sounds like it is very solid having been 7 years together, so I'm hopeful that time alone will also be helpful.
There are some pinned posts on this forum too such as the spoon theory and letter to normals which you can read for ideas or just print out to give to him.
Good luck - hope it gets sorted out soon.
As time passes, if you have a solid relationship, then the relationship will adjust and grow into what it needs to be given your health situation. Overall it sounds like it is very solid having been 7 years together, so I'm hopeful that time alone will also be helpful.
There are some pinned posts on this forum too such as the spoon theory and letter to normals which you can read for ideas or just print out to give to him.
Good luck - hope it gets sorted out soon.
Thank you for your help. I already did print out those stories to bring home. I hope he reads them. I've brought home information before and he and my daughter won't even look at it. I think they are trying to ignore the whole situation. They think if they don't know about it, it's not real.
Thank you for your words of encouragement.
Thank you for your words of encouragement.
Dear NitNat.
I had a similar situation with my man. I had my diagnosis already before we met and at start I had a long remission , so I hardly talked about it. Eventhough I told him about my illness and situation , he probably thought that I had made it up. I dont know about other world and for example here in Estonia noone has ever heard about it. (The last statistics is that there are about 450 diagnosed patients here only.)
He never read anything I gave him to read and I kind of understood that I cannot force him. Sometimes I just tested him and asked if he knows the name of the medicine I take every day. For example for cases when he has to say to the doctors in ER when I am not able to talk.
He never knew!
Now lately I have had very bad times - I have been in the ER and suffering constant headaches and jointpain. And suddenly I have realized that he has studied materials about the illness.
Last month there was a first forum-like event in Estonia about Lupus and I didnt even have to ask him to come. He suggested it himself.
He even wrote lots of stuff down.
Now he gives me injections and probably even knows the names of my medications.
What I want you to say with my story is that give him and her time. They have had time to cope with the idea only few months. I dont know how much information is there available - but that is not probably a common thing and illness that everyone knows about.
My man started to realize the situation after few years only. I mean - started to accept the fact.
And he is very supportive now - eventhough sometimes I still have to remind him why I dont wanna run a marathon for example or why I cant carry our two years old daughter to our fifth floor apartment. I hardly drag myself up (no elevator
)
So try not to push them just calmly explain-explain-explain when you feel weak and why do you feel weak. Try to stay positive yourself.
One thing that I remember from our Lupus forum was that learn to live with the illness and take control. Dont let the illness control you!
Anyways wish you lots of patience and I am sure that in time your family will come around.
And we lupies CAN lead a totally normal life!
Lots of remissiontime for all of us!
Best wishes,
Ruta
I had a similar situation with my man. I had my diagnosis already before we met and at start I had a long remission , so I hardly talked about it. Eventhough I told him about my illness and situation , he probably thought that I had made it up. I dont know about other world and for example here in Estonia noone has ever heard about it. (The last statistics is that there are about 450 diagnosed patients here only.)
He never read anything I gave him to read and I kind of understood that I cannot force him. Sometimes I just tested him and asked if he knows the name of the medicine I take every day. For example for cases when he has to say to the doctors in ER when I am not able to talk.
He never knew!
Now lately I have had very bad times - I have been in the ER and suffering constant headaches and jointpain. And suddenly I have realized that he has studied materials about the illness.
Last month there was a first forum-like event in Estonia about Lupus and I didnt even have to ask him to come. He suggested it himself.
He even wrote lots of stuff down.
Now he gives me injections and probably even knows the names of my medications.
What I want you to say with my story is that give him and her time. They have had time to cope with the idea only few months. I dont know how much information is there available - but that is not probably a common thing and illness that everyone knows about.
My man started to realize the situation after few years only. I mean - started to accept the fact.
And he is very supportive now - eventhough sometimes I still have to remind him why I dont wanna run a marathon for example or why I cant carry our two years old daughter to our fifth floor apartment. I hardly drag myself up (no elevator
)So try not to push them just calmly explain-explain-explain when you feel weak and why do you feel weak. Try to stay positive yourself.
One thing that I remember from our Lupus forum was that learn to live with the illness and take control. Dont let the illness control you!
Anyways wish you lots of patience and I am sure that in time your family will come around.
And we lupies CAN lead a totally normal life!
Lots of remissiontime for all of us!
Best wishes,
Ruta
Dear Nit Nat,
Well one thing you can do is simplify your life. Sounds like you were Superwoman before. Now is the time to see what can be dropped. The children should be helping you anyway, whether you are ill or not. Mine weren't any good at seeing what needed to be done, but were fine if I asked them to do a task.
I am sorry it is difficult with your partner,men do have a hard time with this. My Husband worries constantly no matter how much I try to protect him. He also used to be sure that "there would be a cure for me somewhere". It makes life a bit tiresome when you are trying to adjust and they are not accepting it.
There is a good chance you will improve with treatment but it can take time.
x Lola
Well one thing you can do is simplify your life. Sounds like you were Superwoman before. Now is the time to see what can be dropped. The children should be helping you anyway, whether you are ill or not. Mine weren't any good at seeing what needed to be done, but were fine if I asked them to do a task.
I am sorry it is difficult with your partner,men do have a hard time with this. My Husband worries constantly no matter how much I try to protect him. He also used to be sure that "there would be a cure for me somewhere". It makes life a bit tiresome when you are trying to adjust and they are not accepting it.
There is a good chance you will improve with treatment but it can take time.
x Lola
Hi NitNat,
sorry for your diagnosis.
And i'm sory that you are finding it hard to cope with family and stuff.
My husband has been really good but still there are times that it is apparent that he does not quite get things.
Were in town the other day and he had a few things to do and he i was trying to help plan the strategy. I am having real mobility probs at the mo and also get very flestered and confused when i'm out.
He commented that it woiuld take me ages to walk down the street and that if he did these things on his own he would have them done in no time.
For some reason i couldn't hold back the tears and just started crying i used to be someone that would get everything done quick time and super efficiently but just find things hard now.
I was more hurt because he said he wanted me go with him in the first place and that we would just take our time and get things done.
Anyway after the that the funny thing was that he dedcided he wanted to get an expresso and spent 25 minutes in the line waiting for it.i said even i could have walked to the otherr end of town in the time it took him to stand in that stupid line.
Anyway we made frinds, he complained that it is hard for him to adjust and through streams of tears i said do you think its any easier to adjust just because this is happening to me.I think he was shoced cause he'd probably always thought thayt it was!!
Everything was fine after that and i had lots of hugs and apologies!!!
Anyway the point is is that it is not easy to adjust and i understand it must be very hard for you when the people you are closest to in the world seem ike they are not really interested in learning about this huge things that has happened in your life. It makes you feel very lonely!
I started sitting at the computer and making those comments like ooohh, wow, thats interesting and its funny how people always want to know what is so intiguing and interesting!
Thats how i got my husband talking about things. He always listens now and seems quite interested in learning about things.
Hope things work out for you.
All the best
Cassie
Sorry about the spelling!!!
Yes and th kids need to adjust to, they need to understand and adjust theyre expectations of you and as they are older it won't do then any harm to help out with chores.
My older children do and get paid for their help so they get something out of it too!!!
sorry for your diagnosis.
And i'm sory that you are finding it hard to cope with family and stuff.
My husband has been really good but still there are times that it is apparent that he does not quite get things.
Were in town the other day and he had a few things to do and he i was trying to help plan the strategy. I am having real mobility probs at the mo and also get very flestered and confused when i'm out.
He commented that it woiuld take me ages to walk down the street and that if he did these things on his own he would have them done in no time.
For some reason i couldn't hold back the tears and just started crying i used to be someone that would get everything done quick time and super efficiently but just find things hard now.
I was more hurt because he said he wanted me go with him in the first place and that we would just take our time and get things done.
Anyway after the that the funny thing was that he dedcided he wanted to get an expresso and spent 25 minutes in the line waiting for it.i said even i could have walked to the otherr end of town in the time it took him to stand in that stupid line.
Anyway we made frinds, he complained that it is hard for him to adjust and through streams of tears i said do you think its any easier to adjust just because this is happening to me.I think he was shoced cause he'd probably always thought thayt it was!!
Everything was fine after that and i had lots of hugs and apologies!!!
Anyway the point is is that it is not easy to adjust and i understand it must be very hard for you when the people you are closest to in the world seem ike they are not really interested in learning about this huge things that has happened in your life. It makes you feel very lonely!
I started sitting at the computer and making those comments like ooohh, wow, thats interesting and its funny how people always want to know what is so intiguing and interesting!
Thats how i got my husband talking about things. He always listens now and seems quite interested in learning about things.
Hope things work out for you.
All the best
Cassie
Sorry about the spelling!!!
Yes and th kids need to adjust to, they need to understand and adjust theyre expectations of you and as they are older it won't do then any harm to help out with chores.
My older children do and get paid for their help so they get something out of it too!!!
Hi and welcome,
I really do sympathise with your situation. My husband was reluctant to understand what was wrong with me initially but coming to my rheumatologist appointments really helped.
He started to ask questions which prompted him to read up on lupus himself. I won't pretend that he is always sympathetic and understanding but at least he has awareness of what I may be going through.
For friends and family I put together an A4 sheet with bullet points about lupus - I found that they absorbed this info better and I could 'drip feed' additional info later rather than bombarding them with too much too soon.
I really hope things work out, please keep us posted on how you are.
Hugz, :hug:
Pam xxx
I really do sympathise with your situation. My husband was reluctant to understand what was wrong with me initially but coming to my rheumatologist appointments really helped.
He started to ask questions which prompted him to read up on lupus himself. I won't pretend that he is always sympathetic and understanding but at least he has awareness of what I may be going through.
For friends and family I put together an A4 sheet with bullet points about lupus - I found that they absorbed this info better and I could 'drip feed' additional info later rather than bombarding them with too much too soon.
I really hope things work out, please keep us posted on how you are.
Hugz, :hug:
Pam xxx
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Welcome Nat
I think one way or another we all can defiantely share your story of the family not getting it.My hubby always went to the rhuem with me once i changed rhuemetoilgist and she was like 90 minute drive away.He then did get it for sure but i think he did before but as he used tosay i dont know what to do for you.Meaning he wishes he could take away all the pain fatigue everything but it took me breaqking down and him finally opening up to.I used to go to a job wokring like fourty six hours in which it was a janitriaql job at the elementary school.It was very physical and still i dragged home and fixed supper abd toiok care of laundry and cleaning at our own place.I do not do all that anymore and unfortunatley i do not work anymore but at times sure wish i did.
Sorry telling my story lol but if you sit him down and tell him how you feel and that you need some help with things.Your daughter is probably actually scared and does not know what to say possible.Like everyone has said there is so much information on the computer but my rhueme gave me this book that best described lupus and my hubby did read it my kids did to but not right away.One thing is for sure you will always have such wonderful advice and people that generally understand you and support you in here.I am sure thing will get better for you real soon((((hugs)))).
Tammy
I think one way or another we all can defiantely share your story of the family not getting it.My hubby always went to the rhuem with me once i changed rhuemetoilgist and she was like 90 minute drive away.He then did get it for sure but i think he did before but as he used tosay i dont know what to do for you.Meaning he wishes he could take away all the pain fatigue everything but it took me breaqking down and him finally opening up to.I used to go to a job wokring like fourty six hours in which it was a janitriaql job at the elementary school.It was very physical and still i dragged home and fixed supper abd toiok care of laundry and cleaning at our own place.I do not do all that anymore and unfortunatley i do not work anymore but at times sure wish i did.
Sorry telling my story lol but if you sit him down and tell him how you feel and that you need some help with things.Your daughter is probably actually scared and does not know what to say possible.Like everyone has said there is so much information on the computer but my rhueme gave me this book that best described lupus and my hubby did read it my kids did to but not right away.One thing is for sure you will always have such wonderful advice and people that generally understand you and support you in here.I am sure thing will get better for you real soon((((hugs)))).
Tammy
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