Husband support with wifes of C/APS

[Skyllark]

What is the support like you get from your Husbands/Wifes with having C/APS?

[jessielou]

Hi skylark

I'm very lucky that my fella is totally supportive of me and has been to every appointment with me. He's my rock and brilliant too

Take care gentle hugs love sheena xxxxxx

[taffydaffy]

I have had Hughes Syndrome and many other serious health problems now for 28 years I became very ill and it took 17 years to DX me I would not be here without my darling husband who has given his all to me and our 3 children he has been my carer for many years now last year he became gravely ill and now has stage 4 heart Failure and acute kidney failure I have had to try and care for him it's a nightmare I feel so guilty did I make him ill as he was under stress many times Not every partner can give support not every man is the same I am just glad of my Man my Hero sometimes we are so ill the both of us can't get out of bed but we manage to make light of it we have to x

[jetjetjet]

hello you are both in good hands , because you are both special people !!! jet

[KellyO]

My husband could careless of my illness, just as long as it doesn't effect him. I'm all alone with the kids, the house and my part time job, it sucks!!

[paddyandlin in reply to KellyO]

Kelly if you want to talk rant ask questions message me or ask you never on. Your own

Paddy

[Skyllark in reply to KellyO]

eh - it can really effect us Guys in ways we can never understand - but for him to react that way wow - been through so much with my wife having APS - I work harder to understand it, and work with the doc's to see what can be done next to help her out. Realy bothers me to hear that your husband is this way... I can ownly hope he can find a way to show some concern...

[jessielou in reply to KellyO]

Hi Kelly

sorry you not got support from husband. We here if you need us!!

Take care gentle hugs love Sheena xxxxxxx

[tassie]

I think my latest TIA scared my hubby as he seems to be taking it all a lot more seriously now.

But generally he has no concept of what having a chronic illness is like and I guess if you haven't travelled that journey it is hard to.

Before the last TIA I would get the impression that he thought I was just being lazy or pretending or imagining having pain or other symptoms. He doesn't understand that just touching me some days can be painful.

I think part of the problem is we can look normal, we can put on a brave front and soldier on but in reality we are totally exhausted, depressed or in pain and others can't see that.

jessielou and taffydaffy you are so lucky having supportive partners ...perhaps lucky is not the right term as you deserve to have the support, perhaps blessed is a better description.

[tassie]

kelly that would be so hard! Hopefully the members here can be your support.

[Hidden]

My other half is very supportive of my illnesses but he wants to run me baths and help me to relax - but is sometimes not so good at doing stuff!! i am the main bread winner, I an the do-er and i can't see a time when I won't have to work this hard! I think he is doing what he thinks he would like when he's ill (with a cold or man flu or something) not what i would like dealing with something I will have for life!

In his defence - it must be hard to know what to do and when, especially as I am not straight forward and I never stop and I'm never happy with what i'm acheiving (or not)!!

Take care

Tx

KellyO - have you considered Match.com?? sorry but it sounds like you could do better... I apologise if that's stepping over the line but i couldn't bite my tongue. I met my curret fella online and I mentioned my transplant in my "ad" because i wanted someone who is fine with all that. there are good guys out there! again very sorry if that's crossing a line.

[Sarita]

My other half is very supportive now, but in the beginning he just didnt think i had m uch wrong with me. Its because they cant see anything visible, so they dont know anything is wrong. It took a few arguments when I was completely exhausted to explain that I forgot to do something because it wasnt written down, or an argument after travelling etc....then he started listening because I was asking him to change. I said I had changed but he hadnt noticed and if he didnt change his approach I didnt think it could work.

Now he knows more he is better towards me. It takes a bit of investment in explanations to improve communication. Now he notices when I am tired which is sooo much better.

Big hugs to those whose partners are not so supportive.

Love Sara xx

[daisyd]

Sorry for all the Hughes family, if you don't have a partner that cares.

It must be really hard for you.

I thank God that mine does. I

I hope things improve for you

Karen xx

[MaryF Administrator]

I have a hilarious husband who is very nice to me and very supportive of myself and the children I am very lucky... however I do make him hysterical with laughter, and of course drive him nuts at times Mary F x

[Storky]

We need brightening up!!

What I Want In A Man!

Original List: age (20 something)

1. Handsome

2. Charming

3. Financially successful

4. A caring listener

5. Witty

6. In good shape

7. Dresses with style

8. Appreciates finer things

9. Full of thoughtful surprises

What I Want in a Man, Revised List (age 32)

1. Nice looking

2. Opens car doors, holds chairs

3. Has enough money for a nice dinner

4. Listens more than talks

5. Laughs at my jokes

6. Carries bags of groceries with ease

7. Owns at least one tie

8. Appreciates a good home-cooked meal

9. Remembers birthdays and anniversaries

What I Want in a Man, Revised List (age 42)

1. Not too ugly

2. Doesn't drive off until I'm in the car

3. Works steady - splurges on dinner out occasionally

4. Nods head when I'm talking

5. Usually remembers punch lines of jokes

6. Is in good enough shape to rearrange the furniture

7. Wears a shirt that covers his stomach

8.. Knows not to buy champagne with screw-top lids

9. Remembers to put the toilet seat down

10. Shaves most weekends

What I Want in a Man, Revised List (age 52)

1. Keeps hair in nose and ears trimmed

2. Doesn't belch or scratch in public

3. Can tow a Caravan

4. Can cook a BBQ

5. Doesn't re-tell the same joke too many times

6. Appreciates a good TV dinner

7. Helps with the housework

What I Want in a Man, Revised List (age 62)

1. Doesn't scare small children

2. Remembers where I have put things

3. Can still tow a van without causing chaos on the road

4. Only snores lightly when asleep

5. Remembers why he's laughing

6. Is in good enough shape to stand up by himself

7. Usually wears some clothes

8. Doesn't notice my facial hair and wrinkles

9. Remembers where he left his teeth

10. Stops trying to tell jokes

What I Want in a Man, Revised List (age 72)

1. Breathing.

2. Doesn't miss the toilet.

3. Remembers where we both live.

Hope thats made you laugh and there are more if you fancy them!

[saralee]

my husband has dementia and really doesn't understand that I am sick. So, I am the caregiver and support. I really rely on my online group for my support. (no, I have no other family within 3000 miles). I do have to say when I was battleing cancer, he was very helpful but that was pre his illness.

[taffydaffy]

I read your message to my Husband and he did admit that in the first couple of years he thought I was putting my illness on what he sugests is that you get a pamplet that tells it as It is even all the bad stuff and make your husband read it all maybe then he will realise like my husband how dangerouse this Illness is Good Luck x

[lovemyheart]

Hughes patient thanks for the good laugh i needed that! Tassie and Kelly I hear where you are coming from. Thats exactly what I have. I dont complain about my illness at all to my husband. If Im tired he just complains that he works longer hours than I do and I have nothing to be tired from. I work part time, have two teenagers (who are the lights in my life) and pets and a home. The last time I went to the hospital I had the start of a stroke which they stopped with Lovenox. My husband picked me up at the end of the day and that was it. No sympathy. Unreal.

[tassie]

lovemyheart that would have been so hard.

Come here to the board when you need some support as there will always be someone around or not far away who will offer a shoulder.

[norris]

I had that experience many years ago, it was hard. I now realise that sometimes a coping mecanism is to try and ignore the problem. You say you are on your own a lot of the time, maybe you can organise something you do together and not mention your illness, I have found that sometimes the illness can take over all conversation and we forget about "normal life", and of course that is what the children will want as well. When we were going through a bad patch we went to Relate, I am very pleased to say that it worked, because he was able to say to the councellor things he had never said to me, and learnt more about his fears, which we were able to work on. It s hard to watch a loved one struggling and sometimes you get a angry watching them its a strange reaction, but when my Husband was ill I was empathetic to a point and then would get annoyed with him, and then angry with myself for behaving that way. Illness does bring out all sorts of emotions that we never knew we had. Best of luck with it.

[sharonap]

MY husband was so supportive, he came to every appointment I had. When I was in hospital which was frequent he would come every night straight from work, Even when Consultants told me I was not ill just depressed he believed me never once doubting me.

He worked hard in a manual job 6 days a week he would come home cook our tea, clean the house, do the washing, shopping. He would help me bathe get dressed an never once complained.

Unfortunatly he died in 2010 which Iam trying to come to terms with but I do wish I had said thank-you more.

sharon xx