I have been reading these forums for a few days now and finally got up the courage to post something so here goes. My wife(39) and daughter(14) have PsA. We found out about 4 years ago with my wife and a year ago with my daughter. As someone who does not has this, it's really hard to understand the sheer amount of pain and frustration they have, especially my wife. I am doing all I can to help when it is needed, but I dont dare ask anymore as she get very angry with me. In fact - anger is mostly what I have seen from her for awhile. I have asked her about it as overall our marriage is rocky right now and I want to understand my wife and how the PsA effects her better.
Also, as a husband and father, I am having a VERY hard time adjusting/coping with this. I dont want anyone to think I am comparing what I am going through to those effected however, the mental anguish, helplessness and intimacy challenges are so very hard. I have tried to talk to my wife about them but she just gets more frustrated and angry with me.
Are there any spouses out there who are going through similar things. Can someone help me understand how better to communicate with my wife about how this doesnt just effect her without her feeling like I am throwing it in her face and reminding her of how "broken"(her words) she is. I feel like I'm walking on eggshells all the time. I am so in love with my wife - 17 years and counting, but the stress in our house and tension lately is unbearable. I feel isolated - alone.
There are a couple of things. She is probably depressed and probably agitated. She can benefit from psychotherapy in dealing with chronic health and pain issues. People who are depressed tend to isolate and withdraw.
Ask her if she would agree to 2-4 sessions of couples counseling. To limit it makes it easier to commit to do it. In those sessions would be the chance to address the impact on the marriage and hear from an objective third party - the therapist.
And, of course, you can go for your own therpay to deal with your feelings in a more targeted way than what you can address in this format.
If she prefers not to talk about it, respect that, but let her know that you're there if she wants to vent. You are smart to research this and to join the group, because your understanding will help in ways that aren't apparent immediately. Keep in touch so you do not remain isolated and alone. Do not suggest psychotherapy to her if it will be met with ire, rather, join a caregivers support group yourself so that you can elevate your understanding and glean support from others in your circumstance.
Sometimes just a smile and some flowers do the trick, with no need to talk about the disease. Be persistent with your support and just offer to help with activities of daily living when she needs you to.
Your daughter may be able to help you with understanding things if she is not as depressed. Working together on improving the mood and atmosphere could help everyone.
All great advice. I'll also point out, part of her anger may really be guilt too. I'm scared out of my mind that one of my kids will develop an autoimmune disease, and would feel horrible if one did.
As to marital issues, I'm not particularly angry, but have problems with fatigue. So my husband tends to not want to approach me as he is concerned that I am too tired. Here's the thing though. The less intimacy we have the less we will have. So I have basically encouraged him to be more aggressive, with the knowledge that even if I may seem too tired, I'll warm up to the idea.
The caregiver support group is an excellent idea, as is counseling. If she sees that you are trying your best to support her, some of this may dissipate. I'm sorry about all of this. Marriage can be tough enough without all of the added stress.
If your wife is on prednisone or other medications, she may be having side effects. Myself, and others I know, get extremely angry on prednisone. It's like the rage is just boiling under the surface and I have to exert massive control to keep most of it from coming out my mouth.
Dealing with a child with an autoimmune disease is VERY HARD on an emotional (guilt, stress, constant worry, etc) and physical level (trying to keep child comfortable, medications, running to dr. appts). Your wife is probably well over the cliff of being overwhelmed emotionally and physically, and hanging on by fingernails.
Your wife may be in denial and not wanting to talk about her disease. That's ok. The disease is never going away, she has plenty of time to come to terms with it.
The best you can do is, without her asking, take over physically taxing work like grocery shopping, vacuuming, scrubbing bathrooms. If she says she can still do it despite her disease, simply say "of course you can. I'm just freeing up some time for you can concentrate on other things ".
As far as rocky relationship, every woman I know thinks consistent housework by their spouse is a turn-on.
If your wife (or daughter...we run a clean ship here) aren't ready to join, keep posting to at least get support or learn, so that you don't have to learn by asking your wife. I guarantee she has probably googled until she is well freaked out. Many spouses rely on the affected spouse for info about the disease. The best thing you can do is learn independently. It shows you care.
I think that both Dr Marc and DMara have points with the counseling issue. I know that my disease has made me sad, angry, and also insecure about how my husband views me. (I know I have called myself a “broken thing” to him before. He won’t let me talk like that anymore :-). He also does his best to reassure me when I worry about how he feels about me. It sounds like your wife has a lot of anger/ frustration/ fear right now, which is totally understandable. She does need to talk to someone about that, but if you two aren’t able to communicate well right now it might not be a good idea for you to suggest it. Someone needs to though.
it's the small things in life that matter, cook, clean. breakfast or dinner in bed. Don't overdue it if she gets frustrated, each day is differvent. I notice I get irritable and tell everyone to leave me alone or just hide in my room. good luck .
Wow - thanks to everyone for their feedback and support! It is truly appreciated and while I was hesitant at first, I think this is just what I/we needed. Let me tell you a little more of our story.
My wife and daughter each do self injections of Methotrexate weekly. My daughter also self injects Humira weekly. She handles it all very gracefully and seems to sleep most nights, get's great grades, captain of the swim team as a freshman and has a wonderful and supportive boyfriend.
My wife also has an infusion every 6 weeks of Remicade. These infusions wipe her out for a few days after. They get her pain to about a 2-3 on a 10 scale but the pain is never completely gone. Her thyroid is low so she is on Synthroid and she also get's kidney stones frequently as a result of her physiology combined with the drugs.
The other REALLY nasty side effect of all of this is that she doesn't sleep. She gets maybe 3 hrs of sleep each night if she is lucky. It is not continuous sleep either. She sleeps is spurts - 15 to 20 minutes at a time then wakes up due to discomfort or severe pain and has to move. I have laid awake many a night and listened to her patterns. At about 3 am every morning she'll get up and go to the couch and read. She reads a lot. This sleeplessness has gone on now for well over a year. She takes has an RX for pain and one for sleep but doesnt like to take them often as she has had issues in the past with her blood work coming back with scary results. When she did take prednisone, her white count got critically low so the Dr wont let her take that anymore. This adds to her stress so the cycle she lives with is viscous and relentless.
I watch, listen and try to help where I can, but the sleep thing is truly the killer here. It is a very helpless feeling as I am sure all of you can attest to. I am often reminded of a Rob Thomas song called "Her Diamonds". It is about his wife who suffers from a autoimmune disease similar to lupus. I cant't put into words my feelings any better than this song does. You can read the lyrics here if you want: http://www.azlyrics.com/lyrics/robthomas/herdiamonds.html
Not sure what else to say - that pretty much sums up my feelings in a nutshell.
I appreciate everyone's feedback. I do think seeing a therapist would be good for her but she isnt ready for that. In the mean time I have started to see one just so I have a safe place to dump my feelings without burdening my wife with them, adding to her stress, guilt and pain. I have been twice now and it does help with my ability to cope with this. I have a feeling this will be an ongoing thing for me.
I'm overwhelmed tonight and need to get off the slippery slope. Would love to be able to share/help/talk to others who have similar challenges.
Thanks again for all the great feedback and suggestions.
JD - a lot going on !!! That your daughter is doing her part for her own health is fantastic. Like your wife I am not entirely pain free and more often than not I get up for 1-2 hrs. in the night - usually after the Tramadol's effect is depleated. Sometimes nothing works - like night before last when temps were below zero, it was exhaursting. From what you have said your wife doesn't even get close to even borderline OK sleep and that alone will lead to a host of problems both physical and emotional. Has she tried melatonin? I have heard from various others that it helps for sleep and is over the counter. Worth a shot if her dr. and pharmacist OK it.
Hang in there and it is good you are getting the help/support you need.
The best thing you can do is research their condition. Knowledge goes a long way towards understanding. I am in a committed relationship almost 13 years now and it has only been in the last two since my official diagnosis. We now sleep in different beds. Joseph drives a truck so we have different schedules sometimes, but he has had knee and shoulder surgery and me, well I have PSA that primarily affects my hips and lower back. I toss and turn horribly and we both just rest better in our own beds. We still make time for nooky, but it is not with the frequency it used to be. I love my hubby and I love our love life, but I usually pay for sex for days as my body hurts inside and out most of the time. He really does try to be understanding, but I still feel guilty because I am not able to do all I used too. I am seeking my disability as my lack of income makes me feel rather useless. I am also going to explore some work from home opportunities to make me feel better. I can understand your wife's anger because she knows that your daughter is in for a tough time, all the fancy meds don't work for everyone and there are no easy answers with this disease. The anger is just trying to come to terms with the pain and limited mobility, and knowing that things will be a challange from now on. I am angry too, and yes,we have a tendancy to take it out on those closest to us. Perhaps try a new approach and if you haven't step up to bat and make sure you are doing all you can to help in the house and yard. Fatigue is a tremendous part of this journey, but we women pride ourselves on being the caregivers, you may have to tweak the roles. If you aren't romantic....try...flowers, or even sweeter, do the laundry, ask if you can grocery shop...anything that lets them know you love them and are there for them. I hate to ask for help, but sometimes, I can't do it...whatever it is...We feel guilty and less of a person because of new limitations, so really just be the best support you know how to be, and don't take it personal...I will be praying for your family~
JD - Has she tried melatonin? I have heard from various others that it helps for sleep and is over the counter. Worth a shot if her dr. and pharmacist OK it.
Hang in there and it is good you are getting the help/support you need.
Melatonin works better for me than ambien does. I was taking Ambien CR, but after a week or so, I felt like it just stopped working. I have been taking Melatonin for about a month now, and I love it. I get to sleep, and I don’t have a Medication hangover in the morning.
I also sleep with microwaveable heating packs. I have 2 clay packs like PTs use that have Velcro and I strap those to my knees. I also have one from Thermacare for my lower back that has beads in it with a long strap. I tie that one around my hips. I’m looking at getting a heated mattress pad for our bed. I have seen them with dual controls, so of she likes it warm you don’t have to roast! I also soak in my tub just before bed. I put some lavender and eucalyptus oils in the tub to help me relax. I have noticed that many folks on here recommend a memory foam mattress topper for to help with nighttime pain. I haven’t tried that yet, but it is on the to-do list.
Here is my suggestion, get her a care package. Include some great heat packs, a new book, some bath oils, maybe an electric blanket or mattress topper, a comfy and cute set of p.j.s and some new pillows. Include anything that you think will be relaxing and write her a little note. This would make me so happy if my husband did it for me, so maybe she will like it too. Sleep is so important, and I think all of us have problems sleeping due to pain or not being able to turn our thought off.
I too take melatonin for sleep, rhuemy recommended. I also take xanaxl but I find taking melatonin works better. My heating pad is my new best friend. I often wake up in the middle of the night that has become less often when my pain is not so bad. I think it's great you are looking for ways to help your wife.
I take melatonin...studies show with autoimmune disease there is not enough produced and we get erratic sleep.
I have a 4" memory foam topper on my bed, as well as memory foam pillow. It makes a HUGE difference. I have a big stock of Thermacare stick on heating pads, and if have a rough spot on my body, I slap one of those on for overnight. Perhaps you could get your wife a Kindle with a light so she could read in bed if she wakes up? If it bothers you, you could get a sleep mask and earplugs. Kindle's are lighter and easier to hold than a book (sadly says an avid book lover).
I know for me, leaving my bed pretty much guarantees hours of wakefulness. If I stay in my bedroom and read or whatever, I am more likely to fall back asleep sooner.
I know we're all suggesting a million things, but it all seems to boil down to:
1) step up the physical work you do to maintain the household.
2) make sure your bedroom is super comfortable for someone who doesn't sleep well.
Imagine if you were single, and had to do everything yourself: cleaning, cooking, laundry, grocery shopping, bills. Then do those things to take the load off your wife. If she feels relief, she will willingly take back some of those things as soon as she is able.
I agree, you are a great hubby for writing and caring!
I'm blessed with an understanding husband who has had to deal with panic attacks, weeping fits and anger bursts. It comes with the territory, I'm afraid. I second that perhaps counseling or even mild anti depressive therapy might help. I know I get really down somedays, and while I don't take prozac or anything, I do take tramadol, which boosts mood and energy while fighting pain. I've tried to go without, but darned if this stuff just hurts too bad to be natural. It sux.
yes, the heating pad. That wonderful friend! I keep mine curled up by my side of the bed and use it all the time.
Also, I noticed you mentioned synthroid. I have severe thyroid disease, had it since birth whole family has it. I found that synthroid didn't do diddly for me, and switched to Canadian Armour Thyroid, I mail order it. It has T3 and T4, and works like no other thyroid med ever has. You'd have to pry it out of my cold, dead hand it's so effective!!!
It sounds like you help her a lot, so it's not fair that she should be angry, I understand your confusion. I think doing group doctor visits and some counseling would be a great idea, and wish all of you the best.
I would like to try the heating pads on my knees, I have become in the last few months very restless at night, a lot of pain in my legs/knees/feet and I toss and turn too, normally a very good sound sleeper but this is horrible, my legs feel better while sitting in a recliner so I stay there until I can't keep my eyes open, 3-4 a.m. not good, I currently am going to bed when my hubby does, but I do toss and turn alot when my legs stay in one position too long, I too benefit from very hot baths/showers, it does take some of the hard pain down....so that works for me too, but I love the idea of heating pads on my knees, maybe I'll find relief with that too.
GrumpyCat said:
Dr Marc said:
JD - Has she tried melatonin? I have heard from various others that it helps for sleep and is over the counter. Worth a shot if her dr. and pharmacist OK it.
Hang in there and it is good you are getting the help/support you need.
Melatonin works better for me than ambien does. I was taking Ambien CR, but after a week or so, I felt like it just stopped working. I have been taking Melatonin for about a month now, and I love it. I get to sleep, and I don't have a Medication hangover in the morning.
I also sleep with microwaveable heating packs. I have 2 clay packs like PTs use that have Velcro and I strap those to my knees. I also have one from Thermacare for my lower back that has beads in it with a long strap. I tie that one around my hips. I'm looking at getting a heated mattress pad for our bed. I have seen them with dual controls, so of she likes it warm you don't have to roast! I also soak in my tub just before bed. I put some lavender and eucalyptus oils in the tub to help me relax. I have noticed that many folks on here recommend a memory foam mattress topper for to help with nighttime pain. I haven't tried that yet, but it is on the to-do list.
Here is my suggestion, get her a care package. Include some great heat packs, a new book, some bath oils, maybe an electric blanket or mattress topper, a comfy and cute set of p.j.s and some new pillows. Include anything that you think will be relaxing and write her a little note. This would make me so happy if my husband did it for me, so maybe she will like it too. Sleep is so important, and I think all of us have problems sleeping due to pain or not being able to turn our thought off.
My husband has seen me at my best and at my worst. I've asked him to respond to this for you too, he lives with a wife who is bedridden at times, suffers a great deal of pain, and all the above problems every one else has mentioned. But believe me on ANY good day, I make sure I make it good for him/us and I go out even if it's not the greatest time for me, once I do I'm glad I did and it keeps our relationship strong too. It wasn't too bad when we first met, random flares quite a bit apart from one another, now it's more flares than not, and more pain, less sleep, and I am now facing two surgeries. (An ankle fusion and a total knee replacement) I will beat that too! lol maybe not physcially at first but mentally I will, it does help so much being here and seeing others have the same problems, I am so happy to have found this place, no one has ever understood me more than the people I read about here. It's been such a blessing! I try so hard not to blame or put my anger at my husband ever, and after 10 yrs of being together I don't think I ever have, I do cry a lot and go through times where I don't feel good enough and sometimes have felt he is 'stuck' with me-but then I tell my self that is ridiculous! but I have said once, "you don't deserve this" thank god he has come back with, "I don't deserve you!" I am here through thick and thin, better or worse, and I will always be here for you in any way that I can be, If I was in pain you would be there for me so why would I do anything differently than you?" It made me laugh and feel stupid lol. If your wife ever needs a friend who has what she has please let her know she can contact me......I'm leaving my email addy for you to give to her, I hope one day I can help someone through things I have already worked through. ■■■■■■■■■■■■■■■■■■■■■■ you are all in my prayers!
Hello! I have PSA and have been on Enbrel for 12+ years, also, pain meds and started mtx injection. Also, I have been married for 13 years.
It's hard to live with psa and equally hard to take care of someone who has it. For the first 10 years I pretended like I was "normal". I ran a landscape company, partied all the time, I smoke, I just never stopped...now I'm paying for it and it isn't easy to deal with!
About 2 years ago I started getting tired (I'm now 40 by the way). I sometimes have to take a nap and then I'm up all night. It's a vicious circle. Somtimes, when I lay down I feel so uncomfortable I want to pull my skin off. It helps me to sleep with a pillow between my legs, or to sleep on the couch. I still flop around a lot but, atleast I don't interupt my wife. Point being...I let my wife know my thought process so she knows I'm not trying to get away from her just getting comfortable.
I may not be the most intuitive, I am a guy-guy, but, I know it is't easy for my wife either. She is 8 years younger than me and has had to deal with my psa as well. Sometimes she will hide her pain/illness thinking I am in pain all the time hers isn't important enough to mention. Like you, she has to revolve her life around what I can or cannot do.
I do try to humble myself when it comes to my wife and I direct most of my anger to anyone else that gets in my way. This may not be benificial to them but, happy wife....I am sorry your wife has to deal with this and hope she finds a way to cope with her pain and fatigue. I wish I could tell you the secret but, there isn't one.
I will say that the most important thing to me is my wife and my wifes most important thing is me. However, that has nothing to do with being healthy or having PSA.
Mr. Husband, I know exactly what you're going through. My wife also has PsA and it has wrecked everything--from our social interactions with our friends and family to our business to our personal communication. It is very difficult for someone who doesn't have the disease to truly understand what is going on. It took me almost a year to finally get adjusted to the situation. One of the biggest contributing factors worsening this condition is stress. Do your best to avoid giving your wife and daughter stress. Remember, you're the one who's healthy and they need all the support they can get.
The biggest piece of advice I would offer you is to be as positive as possible in everything that you do. You will need to reach into yourself and pull out the best of you. Remember, you're daughter too has this condition and it tends to worsen in stressful conditions. She's probably hearing it from her peers and its affect her psychology too.
I am absolutely sure that you're stressed out so find ways to relieve your stress. I had to subject myself to a bunch of selfhelp and positive thinking types of audiobooks daily in order to keep my mind as sharp as possible. I also would go into the room and out of view and scream into my pillow or I would do this in the car.
Finally, look for someone who is going through the same situation and try to get them to befriend one another. You'll have to find these support groups for her and do your best to convince her of the benefits and go along with her.
Remember, you're the healthy one and just like me, we get stressed out from this. But their well being is now directly connected to your actions towards them. Good luck and feel free to e-mail if you need more advice.
My husband has seen me at my best and at my worst. I've asked him to respond to this for you too, he lives with a wife who is bedridden at times, suffers a great deal of pain, and all the above problems every one else has mentioned. But believe me on ANY good day, I make sure I make it good for him/us and I go out even if it's not the greatest time for me, once I do I'm glad I did and it keeps our relationship strong too. It wasn't too bad when we first met, random flares quite a bit apart from one another, now it's more flares than not, and more pain, less sleep, and I am now facing two surgeries. (An ankle fusion and a total knee replacement) I will beat that too! lol maybe not physcially at first but mentally I will, it does help so much being here and seeing others have the same problems, I am so happy to have found this place, no one has ever understood me more than the people I read about here. It's been such a blessing! I try so hard not to blame or put my anger at my husband ever, and after 10 yrs of being together I don't think I ever have, I do cry a lot and go through times where I don't feel good enough and sometimes have felt he is 'stuck' with me-but then I tell my self that is ridiculous! but I have said once, "you don't deserve this" thank god he has come back with, "I don't deserve you!" I am here through thick and thin, better or worse, and I will always be here for you in any way that I can be, If I was in pain you would be there for me so why would I do anything differently than you?" It made me laugh and feel stupid lol. If your wife ever needs a friend who has what she has please let her know she can contact me......I'm leaving my email addy for you to give to her, I hope one day I can help someone through things I have already worked through. Lisa_ann42@hotmail.com you are all in my prayers!
Thank you so very much for sharing here. I can not tell you how many times I have screamed into a pillow or in the car or in the garage while trying to get a workout. The ache in the pit of my stomach at times is unbearable. Stress has taken its toll on us over the past 4 years and I am just now at the point where all of it started to boil over and I started to get anxiety attacks in the middle of the night. Wake up in a sudden jerk and cry like someone shot my dog. My wife couldnt handle it - I couldnt handle it and I didnt know what was going on. I'm starting to realize just how much I had bottled up inside and just how badly it has effected me, my wife and family. I realized too, just how much pain my wife is in daily She was REALLY good at hiding it for awhile when the infusions and meds were working...but the lack of sleep and struggle over the past year have really started to show. Plus the infusions just dont work as well as they have. I'm sure the stress and tension have had a lot to do with this. There was this cathartic moment for me not long ago when I realized this was not going to get better and I had to change or my marriage would be over. That is why I am here and very grateful to have your kind words and perspective. Would love to chat more. Holla back if you want to do email/phone etc.
JD
yam808 said:
Mr. Husband, I know exactly what you're going through. My wife also has PsA and it has wrecked everything--from our social interactions with our friends and family to our business to our personal communication. It is very difficult for someone who doesn't have the disease to truly understand what is going on. It took me almost a year to finally get adjusted to the situation. One of the biggest contributing factors worsening this condition is stress. Do your best to avoid giving your wife and daughter stress. Remember, you're the one who's healthy and they need all the support they can get.
The biggest piece of advice I would offer you is to be as positive as possible in everything that you do. You will need to reach into yourself and pull out the best of you. Remember, you're daughter too has this condition and it tends to worsen in stressful conditions. She's probably hearing it from her peers and its affect her psychology too.
I am absolutely sure that you're stressed out so find ways to relieve your stress. I had to subject myself to a bunch of selfhelp and positive thinking types of audiobooks daily in order to keep my mind as sharp as possible. I also would go into the room and out of view and scream into my pillow or I would do this in the car.
Finally, look for someone who is going through the same situation and try to get them to befriend one another. You'll have to find these support groups for her and do your best to convince her of the benefits and go along with her.
Remember, you're the healthy one and just like me, we get stressed out from this. But their well being is now directly connected to your actions towards them. Good luck and feel free to e-mail if you need more advice.