Anyone else in the same cirucumstances? But with some kind of support network.
I’m also single and live alone. No real support system, besides this place.
Yes in a way...single and living in a small area of a large house that I was placed in because of being nearly homeless due to my illness and losing my job. Unfortunatley I wish I was alone at this point....I'm overseeing homeless youth which I love doing but it's just taking what energy I have left. I spend more time in bed lately than out. I want to find other people to share a place with that also have this type of illness. Only another person suffering with this could understand.... What state has a good health support system....I'm so stuck because of my "spend down" taking all my money the first few months of a 6 month period. I've always been my families support person....it's hard for them to see me like this and for me to let them know how bad things really are. My dream would be to have a piece of property with cabins for anyone who needed a place to stay.....somewhere with hot tubs to soak our weary joints and muscles....somewhere that we could help each other physically, spiritually and psychologically.... maybe even have a garden and could all help prepare natural foods together or for each other when unable.... Peace and love be with you all...you are so beautiful
Yep- live alone with lupus for the past 40 years with help when needed from friends I am strong willed and have a firm belief that you are only as disabled as you allow yourself to be. Lot of life changes but I have learned that life doesn't end if your house isn't spotless and unable to do physical activities then learn to enjoy sedentary activities etc.
Hi greensurfer,
I lived alone at one stage before i met my husband i had Lupus and did'nt know but i had seizures's bad and todds-paralasis and found it a struggle at times besides my parents when they was alive lived a fare bit of distance away from me....so my only help when desperate was my mobile phone, a friend who popped in twice a week and my neuro nurse every 3mths and my dad twice weekly besides that it was still a lonely and hard life.
I am also single and living alone but I have family close by so if I need help, they are there for me. I am on disability so I stay involved with several volunteer activities to get me out of the house and around other people. I also stay connected through my church groups and my local lupus support group. It's not east being single with Lupus but I have learned to live a good life by doing the following:
ask for help when necesary
do some form of exercise everyday, even if it just for 5 minutes
eat healthy
do something for someone else (takes the focus off yourself)
stay connected with people who understand and stay away from those who don't
find something you like to do and can still do and just do it
Above all, know that you may live alone but you are not alone. Take care of you.
Hi Sharmane,
All i can say is "Fantastic Attitude" towards living on your own and also coping with Lupus. xxx
Sharmane said:
I am also single and living alone but I have family close by so if I need help, they are there for me. I am on disability so I stay involved with several volunteer activities to get me out of the house and around other people. I also stay connected through my church groups and my local lupus support group. It's not east being single with Lupus but I have learned to live a good life by doing the following:
ask for help when necesary
do some form of exercise everyday, even if it just for 5 minutes
eat healthy
do something for someone else (takes the focus off yourself)
stay connected with people who understand and stay away from those who don't
find something you like to do and can still do and just do it
Above all, know that you may live alone but you are not alone. Take care of you.
Sharmane,
This is such a positive response! Thank you for sharing it - I've written it down so that the next time I'm feeling blue I can read it and feel better or at least more positive!
Ang
Sharmane said:
I am also single and living alone but I have family close by so if I need help, they are there for me. I am on disability so I stay involved with several volunteer activities to get me out of the house and around other people. I also stay connected through my church groups and my local lupus support group. It's not east being single with Lupus but I have learned to live a good life by doing the following:
ask for help when necesary
do some form of exercise everyday, even if it just for 5 minutes
eat healthy
do something for someone else (takes the focus off yourself)
stay connected with people who understand and stay away from those who don't
find something you like to do and can still do and just do it
Above all, know that you may live alone but you are not alone. Take care of you.
When i was first diagnosed, i was in a relationship. He seemed to be supportive, yet he would never go to any of my apt. Or ever to the hospital. He left me becauae he could not handle my Lupus. Now it is very hard for me to be around others when im sick. Everyone always worries. Some of my symptoms i am not able to hide. There are ppl that want to go with me to my treatments and apt. But i cant let them. I lost someone that i loved very much because of lupus and i will never let that happen again. I have this group to support me and my church. My friends… I just cant let it happene. This illness took so much from me already. I will not let it take anymore then ot already has.
Thanks, I do believe that for the most part, we all try to do the best we can.
Tez_20 said:
Hi Sharmane,
All i can say is "Fantastic Attitude" towards living on your own and also coping with Lupus. xxx
Sharmane said:I am also single and living alone but I have family close by so if I need help, they are there for me. I am on disability so I stay involved with several volunteer activities to get me out of the house and around other people. I also stay connected through my church groups and my local lupus support group. It's not east being single with Lupus but I have learned to live a good life by doing the following:
ask for help when necesary
do some form of exercise everyday, even if it just for 5 minutes
eat healthy
do something for someone else (takes the focus off yourself)
stay connected with people who understand and stay away from those who don't
find something you like to do and can still do and just do it
Above all, know that you may live alone but you are not alone. Take care of you.
Thanks for your kind message. I am new here and already liking the group.
Draginfli said:
Sharmane,
This is such a positive response! Thank you for sharing it - I've written it down so that the next time I'm feeling blue I can read it and feel better or at least more positive!
Ang
Sharmane said:I am also single and living alone but I have family close by so if I need help, they are there for me. I am on disability so I stay involved with several volunteer activities to get me out of the house and around other people. I also stay connected through my church groups and my local lupus support group. It's not east being single with Lupus but I have learned to live a good life by doing the following:
ask for help when necesary
do some form of exercise everyday, even if it just for 5 minutes
eat healthy
do something for someone else (takes the focus off yourself)
stay connected with people who understand and stay away from those who don't
find something you like to do and can still do and just do it
Above all, know that you may live alone but you are not alone. Take care of you.
I'm sorry Tiffany, I hope you are able to at least get connected with a Lupus Support Group?
Tiffany89 said:
I'm also single and live alone. No real support system, besides this place.
Yes, the hot tub sounds nice Polly. My place has only a camper shower, but I am fortunate that my rent is low and I'm on 5 acres of land that is maintained. I also feel fortunate that I can go home and not have to worry about anyone else but myself and go to bed if need be after my long days. I'm sorry Polly for your living situation, that has got to be hard. Take heart that routine can actually help in some ways. And I really hope you have time to take a walk for 10minutes, not only for fatigue, but the mind.
PollyannaPam said:
Yes in a way...single and living in a small area of a large house that I was placed in because of being nearly homeless due to my illness and losing my job. Unfortunatley I wish I was alone at this point....I'm overseeing homeless youth which I love doing but it's just taking what energy I have left. I spend more time in bed lately than out. I want to find other people to share a place with that also have this type of illness. Only another person suffering with this could understand.... What state has a good health support system....I'm so stuck because of my "spend down" taking all my money the first few months of a 6 month period. I've always been my families support person....it's hard for them to see me like this and for me to let them know how bad things really are. My dream would be to have a piece of property with cabins for anyone who needed a place to stay.....somewhere with hot tubs to soak our weary joints and muscles....somewhere that we could help each other physically, spiritually and psychologically.... maybe even have a garden and could all help prepare natural foods together or for each other when unable.... Peace and love be with you all...you are so beautiful
Poobie, good perspective. A lot of things are really in the mind and what we make of it. I take satisfaction in every small thing I accomplish. they say that you take your schedule for the day and cut a third of it out and that's where you should really be at. we go through seasons.
poobie said:
Yep- live alone with lupus for the past 40 years with help when needed from friends I am strong willed and have a firm belief that you are only as disabled as you allow yourself to be. Lot of life changes but I have learned that life doesn't end if your house isn't spotless and unable to do physical activities then learn to enjoy sedentary activities etc.
Tez, that' sounds difficult. You must appreciate having your husband now and also the fact that he went into the marriage knowing you had lupus.
Tez_20 said:
Hi greensurfer,
I lived alone at one stage before i met my husband i had Lupus and did'nt know but i had seizures's bad and todds-paralasis and found it a struggle at times besides my parents when they was alive lived a fare bit of distance away from me....so my only help when desperate was my mobile phone, a friend who popped in twice a week and my neuro nurse every 3mths and my dad twice weekly besides that it was still a lonely and hard life.
Sharmane, that's aweome. It sounds like you are well connected and involved, which is important. Very good points, all of which has helped me to get through my first year of lupus. I'm making new friends through a singles ministry and they don't know about my hair loss and lupus, but in due time I will let them know. Tonight two girls commented on how perfect my hair looked, I just smiled.
Sharmane said:
I am also single and living alone but I have family close by so if I need help, they are there for me. I am on disability so I stay involved with several volunteer activities to get me out of the house and around other people. I also stay connected through my church groups and my local lupus support group. It's not east being single with Lupus but I have learned to live a good life by doing the following:
ask for help when necesary
do some form of exercise everyday, even if it just for 5 minutes
eat healthy
do something for someone else (takes the focus off yourself)
stay connected with people who understand and stay away from those who don't
find something you like to do and can still do and just do it
Above all, know that you may live alone but you are not alone. Take care of you.
Yes Ann, I like solitude also and am glad I live alone at this time, especially my first year getting lupus under control towards remission. I also was an only child growing up in the country away from everything. My grandmother (83years old) is pretty much the same, she doesn't want to be bothered and likes her big farm house. I'm glad your connected too. I have a neighbor across the street (73years) with soo many problems and I'm glad we can relate to one another, especially walking and swollen ankles. And of coarse church, so many friends have been praying around the world, I am very blessed by it all.
Ann A. said:
I have lupus and have lived alone since my youngest child left home about 20 years ago. When I get past these eye surgeries, I will be selling my house and moving into a smaller place with no yard and roof to worry about. But I will live alone as long as I can. I was an only child until I was 18 years old and I really like a great deal of solitude. Living alone means not having to explain how I feel to other people on daily basis. To cook or not to cook. To clean or not to clean. My decision alone with no explanation required. I have a wonderful nextdoor neighbor and my kids for emergencies. I also have a church.
sunshine, that's got to be so hard. My prayers are with you as you climb that hill. The leader of my lupus support group had a very similiar situation happen right after she was hospitalized and nearly died at 25. She made sure her current boyfriend knew that he would need to be there in everything, there was no way she could have a relationship with someone who didn't. From there he's been very very supportive, at support groups, symposiums and such.
sunshinespraypaint said:
When i was first diagnosed, i was in a relationship. He seemed to be supportive, yet he would never go to any of my apt. Or ever to the hospital. He left me becauae he could not handle my Lupus. Now it is very hard for me to be around others when im sick. Everyone always worries. Some of my symptoms i am not able to hide. There are ppl that want to go with me to my treatments and apt. But i cant let them. I lost someone that i loved very much because of lupus and i will never let that happen again. I have this group to support me and my church. My friends... I just cant let it happene. This illness took so much from me already. I will not let it take anymore then ot already has.
Sunshine,
I had a therapist/counselor tell me once that there are people out there who do not have enough of themselves to give to others and they will drift away. BUT in their place, God will send us people that he has chosen to be there for us and for us to be there for them and at some point I should give them a try because I never know if it will be one that God sent. I was having "trust" issues at the time and by acting on his words I found that he was right. When you are ready, perhaps there will be some folks that God has sent for you to help and for them to help you?
I hope so because you are a very special person!
Ang
sunshinespraypaint said:
When i was first diagnosed, i was in a relationship. He seemed to be supportive, yet he would never go to any of my apt. Or ever to the hospital. He left me becauae he could not handle my Lupus. Now it is very hard for me to be around others when im sick. Everyone always worries. Some of my symptoms i am not able to hide. There are ppl that want to go with me to my treatments and apt. But i cant let them. I lost someone that i loved very much because of lupus and i will never let that happen again. I have this group to support me and my church. My friends... I just cant let it happene. This illness took so much from me already. I will not let it take anymore then ot already has.
Thank i guys and dragonfly, you are so right. God does put ppl in our lives to do his work. Both god ans jesus work through ppl.