Hi there a bit nervous but here goes i am the wife of mark who has lupus diagnosed 1 year to date and although he says he dosent want to talk to strangers about his condition i need help with this. mark has polymyosits lupus and spent 5 weeks in intensive care this time last year as he got legionella pnuemonia it has been **** and he really should not still be here with all the complications he had but hes a strong 45year old man with guts and determination. we are happier and stronger than ever and laugh more now than ever but i just could do with alittle help with the day to day stuff that lupus throws our way. mark hasnt worked for 2 years now and may not work again as you can imagine that brings its own minefield as he used to work all over the world and is used to a busier life. im sure he would benefit from another mans perspective as i think he feels if he gets into conversations about lupus it will all be from a womans point! oh i think i am waffling so i will end this introduction and hope someone can help! thank you for reading this debbie x
debbie
1 - 9 of 9 Posts
Hi Debbie,
Lupus, Polymyositis and then Legionnaires disease..........you certainly have had more than your share. He must be a strong man but surviving life threatening illness takes it's toll doesn't it.
Male lupies are very much in the minority but there are some who post here but perhaps not so often as us chatty ladies
there are also relatives partners and friends of lupies who post so i hope a few will be along soon.
Just really wanted to welcome you and say well done for jumping in.
Lupus, Polymyositis and then Legionnaires disease..........you certainly have had more than your share. He must be a strong man but surviving life threatening illness takes it's toll doesn't it.
Male lupies are very much in the minority but there are some who post here but perhaps not so often as us chatty ladies
there are also relatives partners and friends of lupies who post so i hope a few will be along soon.
Just really wanted to welcome you and say well done for jumping in.
Welcome!
There is a section for men only, I am sure if your hubby would post there (or if you posted for him) some of the guys would respond...as BigSis said we don't have too many, but they do lurk about.
I have lupus, my hubby and I talk about how it affects him and it is tough, you need to be strong too and it isnt always easy.
We are here to help and support you as well as your hubby!
I know what you mean about working, I worked for 25 years and had to stop due to the lupus, I took up cooking and that helps make me feel like I am contributing in some way. I hated the feeling of being helpless to contribute to our life...this ha been an outlet that I find I really enjoy.
I hope your hubby can find something to challenge his mind and make him feel better about himself.
Stephanie
There is a section for men only, I am sure if your hubby would post there (or if you posted for him) some of the guys would respond...as BigSis said we don't have too many, but they do lurk about.
I have lupus, my hubby and I talk about how it affects him and it is tough, you need to be strong too and it isnt always easy.
We are here to help and support you as well as your hubby!
I know what you mean about working, I worked for 25 years and had to stop due to the lupus, I took up cooking and that helps make me feel like I am contributing in some way. I hated the feeling of being helpless to contribute to our life...this ha been an outlet that I find I really enjoy.
I hope your hubby can find something to challenge his mind and make him feel better about himself.
Stephanie
Many thanks for your post mark has taken up cooking in a big way allready which is wonderful when i come home to his home cooking but is hard for his weight gain as the steroids have rocketed him to over 20 stone! so looking at low fat cookery books. Thanks again debbie
Hi again Debbie! I said I'd read your post
My Mum has dermatomyositis and lupus and I have lupus and myositis (without the skin complications) and yes, it can be a pain indeed.
It sounds like your husband has been through a lot but I do know what you mean about being happy and laughing a lot. I think these diseases often make us see life differently and in some cases almost rediscover it.
hope to speak again soon - and not dash off next time!
Katharine
My Mum has dermatomyositis and lupus and I have lupus and myositis (without the skin complications) and yes, it can be a pain indeed.
It sounds like your husband has been through a lot but I do know what you mean about being happy and laughing a lot. I think these diseases often make us see life differently and in some cases almost rediscover it.
hope to speak again soon - and not dash off next time!
Katharine
Joined
·
208 Posts
Hi Debbie,
I dont have much experience or any advice but just wanted to say Hello.
Hopefully this site will help you as well as your husband to cope with things.
Must be difficult seeing someone you love suffer like that.
Good luck and best wishes to you both.
Sal x
I dont have much experience or any advice but just wanted to say Hello.
Hopefully this site will help you as well as your husband to cope with things.
Must be difficult seeing someone you love suffer like that.
Good luck and best wishes to you both.
Sal x
Dear Debbie,
Welcome here and nothing to be nervous of. I have been here just under a year and met some marvellous people here.
If you can get into the Chat room anytime that will also help you.
Well done to both of you for how you are coping. Are you sorted out with Benefits, any adaptations in the home etc?
Do you get any time for yourself? Even a little would be good.
My Husband is nearly 19 stone and he is not on steroids! Just a tip,if you Google the Premier Man catalogue they have a good range of reasonably priced Menswear in a big range of sizes and it isn't all old fashioned stuff.
Please let us know what we can do for you.
I have Lupus and some other stuff, so does my Daughter, I can't claim to have all the answers but have managed it for 25 years. I would say 99% of what I have learned has come from this site and another I used to use rather than Docs! I am sure with what you and Mark have been through you have already learned to speak up for yourselves. Well Done.
X Lola
Welcome here and nothing to be nervous of. I have been here just under a year and met some marvellous people here.
If you can get into the Chat room anytime that will also help you.
Well done to both of you for how you are coping. Are you sorted out with Benefits, any adaptations in the home etc?
Do you get any time for yourself? Even a little would be good.
My Husband is nearly 19 stone and he is not on steroids! Just a tip,if you Google the Premier Man catalogue they have a good range of reasonably priced Menswear in a big range of sizes and it isn't all old fashioned stuff.
Please let us know what we can do for you.
I have Lupus and some other stuff, so does my Daughter, I can't claim to have all the answers but have managed it for 25 years. I would say 99% of what I have learned has come from this site and another I used to use rather than Docs! I am sure with what you and Mark have been through you have already learned to speak up for yourselves. Well Done.
X Lola
Joined
·
10,191 Posts
Hi Debbie,
It is nice to meet you. My brother and I both have SLE.
It is hard on us but I know it is hard on family members too.:hug::hug: Please take care.
I will let my brother know about this thread. Tell your husband that he is very welcome to come and post too.
You are a special lady to come and look for information for your husband.
It is nice to meet you.
osy:
Lyn
It is nice to meet you. My brother and I both have SLE.
It is hard on us but I know it is hard on family members too.:hug::hug: Please take care.
I will let my brother know about this thread. Tell your husband that he is very welcome to come and post too.
You are a special lady to come and look for information for your husband.
It is nice to meet you.
osy:Lyn
1 - 9 of 9 Posts
