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#510344 - 04/14/15 11:54 PM Supportive or not so much?
Mom22kidz Offline
New_Member

Registered: 04/13/15
Posts: 3
How many of you out there have supportive partners? Do they really understand what you're going through? I thought my husband was supportive but turns out he wasn't as much as I thought. I was just recently dx with USpA but was misdiagnosed for several years as having fibromyalgia. I thought he was understanding about my need to pace activities but turns out he's angry about it. Not sure what to do. I do the best I can. I started a new medication and I'm hopeful it will ease some pain and fatigue. Most days I don't have any spoons left to take a shower... I take care of everyone else then don't have enough energy to care for myself. Tell me I'm not the only one...
_________________________
Mom to 2 wonderful kids. Recently dx with USpA. Taking Plaquenil

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#510346 - 04/15/15 04:55 AM Re: Supportive or not so much? [Re: Mom22kidz]
Staffy Offline
Apprentice_AS_Kicker

Registered: 02/02/10
Posts: 79
Loc: Oxford, England
Your not the only one. I think its very difficult for anyone who doesn't have AS to understand what its like. The people we are asking to understand and support are most likely stressed and tired themselves and have their own aches and pains which they probably think are similar to how we feel(!)...its the only reference they've got.

My wife was up in the night with our little girl who has an ear infection. This morning I said I'd had a bad nights sleep too because of back pain and felt sick with tiredness. This didn't go down very well.

I wish Id kept my mouth shut but the point is when we are both feeling like crap, patience and understanding is in short supply on both sides unfortunately.

Sounds like you could both do with a break, something to look forward to.

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#510347 - 04/15/15 06:16 AM Re: Supportive or not so much? [Re: Mom22kidz]
Mom22kidz Offline
New_Member

Registered: 04/13/15
Posts: 3
Thanks Staffy. I know he does a lot. You're right. We could both use a break but with 2 kiddos at home it hard. There's always so much to do. Sometimes, though I feel like he doesn't appreciate all the things I do and how much it's a struggle to do them. hopefully it gets better and not worse.
_________________________
Mom to 2 wonderful kids. Recently dx with USpA. Taking Plaquenil

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#510350 - 04/15/15 08:08 AM Re: Supportive or not so much? [Re: Mom22kidz]
Staffy Offline
Apprentice_AS_Kicker

Registered: 02/02/10
Posts: 79
Loc: Oxford, England
I don't tell my wife how much I appreciate her and everything she does, or at least not often enough. Maybe because by doing so there is a logical admission that I'm not doing enough.

I wouldn't assume that he doesn't know or appreciate it, you just might find it hard to get him to admit it!

Sounds like you could do with a break without him, then he can see for himself how much you do...

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#510356 - 04/15/15 10:48 AM Re: Supportive or not so much? [Re: Mom22kidz]
mooman Offline
Second_Degree_AS_Kicker

Registered: 03/13/09
Posts: 206
Should get him to come on here , years ago my wife came on the friends and family and it really helped her, she knows just as much as me about the condition now and we have developed our own language for terms and pain levels etc.. It does help, I sometimes tell her she could do better but then she reminds me that I am a dumb [*bleep*].

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#510370 - 04/15/15 10:08 PM Re: Supportive or not so much? [Re: Mom22kidz]
Kleb_Slayer Offline
Second_Degree_AS_Kicker

Registered: 02/13/11
Posts: 237
Loc: BC, Canada
My husband was very supportive initially, when I couldn't do anything basically, not even sleep. At that point the symptoms and fatigue were so apparent, but now - it's been four years that I've worked full time and been back to "normal" - the empathy isn't quite the same. smile

I have to put my foot down and give the firm reminder, about once a month, that my "battery pack" is still challenged, and always will be, and that I need more down time and rest than he does.

Incidentally both his parents and he himself have had some serious health issues manifest in the past few months, so now he's very aware and empathetic again.

Can't hold it against him really. Like it was mentioned above, it is very difficult to understand other people's situation, until you experience something similar yourself.

I used to have NO patience for my "hypochondriac" mother for 35 years, until my simmering symptoms blew up in my face. (Very similar symptoms to many of her mystery health problems, and she's never been diagnosed with anything but astma, and had no internet to do her own research!).

I still eat humble pie and tell her I'm sorry... smirk
_________________________
B27+, 2nd Rheumy: 'inflammatory backpain'.
IBS + SI/lumbar/thoracic/cervical/knee/elbow stiffness & pain.
Managing inflammation very well with diet since Jan 2011. Slow but consistent reduction in symptoms year by year.
Took LDN (4.5mg) between 2013 & 2015.

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#510402 - 04/16/15 09:31 PM Re: Supportive or not so much? [Re: Mom22kidz]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
I've seen a lot of people here lament the same things that you are talking about. its common for others to not be able to relate to that which they have not experienced.

My husband and I both have chronic illness issues. He used to be the "sicker" one, then it was my turn. Now i'm on humira and doing a bit better. sometimes his neck is really bad and i have to give up my recliner.

It helps that we both know what chronic illness feels like.

Still, he's a really empathetic person and i think he would be regardless.

i think outside of when we are feeling "bad", i we discuss our feelings, that helps, but the other has to really hear what the other is saying. it goes both ways.i have needs, but so does he; i have to remember that as well. if we both try to put the others needs first, that can help. its only when we both need and the other is not there that there is a problem.
_________________________


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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#510404 - 04/17/15 04:07 AM Re: Supportive or not so much? [Re: Mom22kidz]
Staffy Offline
Apprentice_AS_Kicker

Registered: 02/02/10
Posts: 79
Loc: Oxford, England
Bear in mind also that men and women think differently.

Men need to 'fix' things.

If there is something that is causing their family pain and they cannot fix it, the frustration can be a lot to bear and from that you can get all sorts of negative reactions. Denial etc.

Or he could just be a selfish idiot - there's plenty of us about!

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#510409 - 04/17/15 12:08 PM Re: Supportive or not so much? [Re: Staffy]
Lon Offline
Very_Addicted_to_AS_Kickin

Registered: 09/11/01
Posts: 8326
Loc: Gillette, Wyoming
Mom2-
Many of us have to learn to love and care for those in pain. It is a bit easier if we see the trauma the scab or the crunch. Some will never learn to give TLC.
But it is worth the effort to teach and educate others as to how we feel, generally many will not understand because it is not their pain.
Try and not to think less of those who do not understand, consider that they do not understand, partly because our society is not geared to caregiving.
You do need to find the support necessary for the life you live. Because this is a lonely disease.
_________________________
1 Kings 20:1-22
ne triumphum canas ante victoriam.




Lon

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#510432 - 04/19/15 12:32 AM Re: Supportive or not so much? [Re: Mom22kidz]
rumble Offline
Supreme_AS_Kicker

Registered: 01/31/09
Posts: 4468
Loc: NE Oklahoma
Lots of good stuff mentioned here. smile

My hubs and I both have PsA and are around 60. We have traded off who was sickest for a while, but he's been getting far more hits in past couple of years....2 shoulder surgeries and two hip fx surgeries. He is currently recovering from the two hip fracture surgeries since late Feb,...still on a walker with just toe-touch weight bearing (same hip).

While I was working full time and taking care of him by staying nights in hospital with him, he was stressed by pain, worry and frustration. He snapped at me regularly, I bit my tongue to keep from snapping back--till I couldn't any more. Then he realized I was burning candle at both ends and needed a break. I took an FMLA day and slept as much as I could (wasn't near enough, but it helped some).

In the intervening 2 weeks since that little vacation day, I've reminded him that I have to be healthy enough to care for him. If I don't get some rest around working full time, it's going to show. Most of the time, he is quick to let people know he appreciates my care of him. I try to remember that he's healing and it makes him tired. He has to remember the same for me, but it's harder with all he's dealing with right now. I'll cut him some slack for a time. wink He is retired and I still work full time. I remind him that he gets all this good medical care because I have the medical insurance.

Healing is hard work and takes a lot out of you. With a disease like spondy, your body spends a lot of time TRYING to heal, and it's tired a lot. On a day when you both are better rested, in good moods, etc, mention how hard it is to care for everyone else before you can care for yourself. You'll have to come up with the best way of broaching this for your own situation, unfortunately. It might not be easy if he's really that angry. But it might be a case of your perception of his anger....because if he loves you (and I hope he does love you dearly), he is more likely wanting to 'fix' things for you and he can't. See if you can work out a way of letting you get a little 'personal time' even if it's just 30-45 minutes a night, while he shoulders the kids' care for that time. Soak in a warm bath or read a book or take a nap----or something that would recharge your batteries. Taking a weekend trip might be a tough sell, but maybe an afternoon to do what you want to do, even if it's window shopping or a library trip could be fun. Your kids might like a fun time with dad to build a special memory. Maybe a once-a-month pattern would help everyone. Lots of brainstorming could give some good ideas.

Hope your new treatment works. smile Hang in there. You can do this.
Gentle hugs.
_________________________
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia since Dec 2013 (on hold). Mobic 15mg (also on hold)
Epidural Steroid Injections x7; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x7

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