DOES ANYONE ELSE'S DH HAVE AS?

[toria77]

just wondered if there was anyone else out there who's dh has ankylosing spondylitis and how it affects him and your relationship, .....?

ah, ok will tell dh this ( re: celebrex) thanks

how do you cope? it can put a hell of a strain on a relationship. especially if your DH follows the typical male pattern of retreating and shutting you out

also I have gone through huge cycles of grief as I've had to give up different visions of what our future would be .. the country walks, the adventurous holidays, even sometimes the rolling on the floor playing with the kids .. it hurts .. it really does and I think it is difficult for other people to understand the all-pervasive aspect of living with someone with this kind of disease

absolutely- it affects everything- esp. with new ds - it makes so sad thathe cant bend down to do certain things with him etc.. also i have 2 be careful not to get too frustrated when i have to do a lot because he cant.... dont think i am always as understanding as i could be maybe, family have recently realised hoe serious it is so they r supportive now

you're not alone toria

please check out kickas .. in the early stages of coming to terms with this it saved my sanity greatly (although bear in mind that few people who are 'mildly' affected ie only notice twinges post there it is more the moderately to severe so can at times colour your view of the prognosis)

I don't actually post there any more tbh

where are you based btw??

and honestly , when we first found out, it scuppered a lot of 'visions' i had too and i resented that and it did cause problems for a while- which i feel bad for now.. but we both had probs getting our heads 'round it

dh is very pessamistic about condition- has no inclination to 'fight it' but fears worse case senarios

sorry terrible typing

oh I recognise that feeling very well

is he constantly pessimistic, or does it go in phases??

how old is your DS btw?

does your DH see a rheumy who understands the disease???

ds is 6 months. he sees a specialist, b ut not very frequently unfortunatly, he is fairly pessimistic or resigned most of time, except when he does his once yearly courses and he sees others a bit worse off

does he open up to you, my DH never does.

When he flares he really does need to be alone and he pulls away from me, which gets very worrying and also very isolating. I'm left dealing with the kids and worrying about him.

Do you think he'd post on a forum - I've seen kickas really turn people's attitudes around (my DH wouldn't post there btw)

think he might post- but only if i dont TELL him to, i will have to be subtle. he does open up sometimes, most of the time he is defensive

does your DH get his blood checked by GP to see what his ESR levels are (measures the amount of inflammation in the body) .. it is an important in monitoring the disease.

I am actually a little surprised that your DH isn't on a DMARD (disease modifier) he sounds like he should be

I am sorry I sound like a know-it-all, it is how I cope, I just read up about it lots .. I need to know everything it seems ..

DH found acupuncture quite useful in earlier stages btw have you tried any alternative therapies?

blokes are bad at communicating this sort of thing arent they.

an important tool

you said it

no- its great to hear some advice- fee; like we dont know much! i suggest alternatives but dh attitude is ' it wont do any good, it wont get better ...'

so he's right, the joints, if fused, won't get better (not without surgery and there's some interesting progress in joint replacement going on at the moment)

BUT the flare can end, he can FEEL better

it's NOT a death sentence and he owes it to you and DS to try

shall I bollock him for you? (it doesn't do me any good with DH to be fair, but who knows maybe your DH will crumble under the wrath of the marmite one )

twiglett- thanks so much, got to go now but will catch up with you again on mn. take care x

yeah, co,e 'round and tell him! if i even hint at that sort of thing he says ' are you the one with a spinal disease' what can u say ? ? ?

you too

here if you need me (feel free to CAT me if you want)

take care

but really gotta go ... speak 2 you again, thanks

you can say 'no, I'm the one who has to put up with the ar$e with the spinal disease, which believe me is far worse'