Hi all. I am not an APS sufferer but my husband is. He was diagnosed about 9 years ago after suffering a TIA. From time to time he struggles about not been able to work and not feeling like he is contributing and yet he is massively. I couldn't do the job I do without him and he is absolute rock. I guess I am looking for any advice from sufferers or partners of sufferers about how i can give my husband the assurance that he adds massive value (which he does) and also any tips about staying positive. It's fair to say that TIA's have had a huge affect on our lives and stopped any extremely active man who was passionate about his work doing what he loved and from time to time we struggle.
A supportive wife: Hi all. I am not an... - Hughes Syndrome -...
Hughes Syndrome - APS Support
i am in the same situation where do you guys live and how old is your husband
i would like to talk to him on the phone if you are not to far away. i am on a limited income
Hello and welcome to our friendly forum.
I'm sure that others in a similar situation will soon reply to you.
HI there, it might be an idea if he joins on here as there are plenty of guys on here he can swap information and support with. I think we can all feel a bit worried about our other halves, I know I do sometimes due to my continuous health problems. He is lucky to have you. MaryF
That isn't great. I've been lucky that my health problems haven't stopped my career, but I'm under no illusion that that is unusual and pretty unique to my employer (HM Forces). When I was very I'll, I didn't have to worry and when recovering, I could return to work incrementally. That said, I still feel that I'm not adding the value I used to be able to and definitely wish I could do more...
I guess if he helps you by allowing you to continue to work, etc. then that is not to be sniffed at. My lapse meant that I was posted to areas that allowed my wife to thrive in her career - I was never more than 9-5 - so she has done really well.
Good luck and I'm happy to help if I can.
There are always volunteer jobs which can fill gaping holes in people's lives. I trained as a hospice volunteer and have since visited with clients who, as they are dying, just want a visit and an opportunity to share their life story. Years ago I knew someone who took calls from assault victims who, again, desperately needed to talk with someone who could listen and offer support and perspective. and there is also tutoring children, or just reading books to kids. Or, if your husband has valuable experience in a trade,he might try pairing up with someone who wants to learn that trade to offer instruction and advice.
It is important for us all to feel our time is valuable! If you were here in the States I would suggest speaking with United Way or a building and construction trade union for volunteer suggestions. If you are in the UK I'm sure there are similar sources of info.
And I admire him for having that drive to be useful and give back!
A supportive wife,
I am the wife of an APS sufferer as well. His only issue with APS was 1 dvt (which took over a year to disolve) until 2012 when he suffered catastrophic APS. he suffered a brain injury, dysphagia, kidney damage, heart damage, lung damage, and lost his adrenal glands.
He is no longer able to drive a car, but because his job requires him sitting at a computer he is still able to work.
He gets driven to work 3 days a week, and works from home 2 days.
Some day he struggles badly, other days he manages ok.
Tell your husband to not give up. The things my husband does around the house (and there isn't a great deal he can do now) are of such great value.
Is there anything he can do from home via the computer or something?
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Taking him to the doctors with me wont work as he works away.
Sorry for the whinge.