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Living with Psoriatic Arthritis (PsA)

Hubby needs support and understanding to help me


#1

Hi guys, It’s been a REALLY rough couple of weeks with a nasty flare, and it seems the relapses are far outweighing the remissions these days. I was finally diagnosed with PsA 12/2016 but have had the symptoms at least since 2008, and have had moderate to severe psoriasis since 1974. (Also Crohn’s disease since 2002, and renal issues since I was 16.) Finally started Humira this past April, but have continued to flare even with a maintenance dose of 20 mg prednisone. Every time I try to taper the steroids the PsA returns with a vengeance. (Worse than getting off crack someone on here said, and I believe it!) And now even the prednisone is doing nothing. (Can’t do methotrexate.) Switched to Enbrel and did my first injection yesterday. My pain issues are widespread with whole body pain, but at the moment I’m dealing with severe pain and swelling in my left foot radiating from my big toe joint (purple colored and gout-like)and bottom foot pain front to heel. Right foot suddenly developed these weird pea size lumps on the top of my foot that have now diffused into a red swollen mass. Also quickly developed dactylitis in my right middle finger at the joint closest to the nail but my entire hand is painful. Axial pain, along with facet arthritis has me moving at an excruciatingly painful snails pace, even with a walker. I’ve had no sleep because the pain ramps up as soon as the light is out. NO amount of pain meds are helping- NOTHING. Bought a TENS unit but haven’t used it yet and it looks complicated! Doing anything physical right now is virtually impossible. It took me 3 hours to launder and change the bed linens yesterday - a Herculean effort for me. As determined as I am to try and maintain some sense of normalcy and accomplishment, I feel guilty, useless, and life is passing me by. I have always been active, a “doer”…can’t sit still kind of gal… and for years have been the matriarchal figure in my small family - always hosting the family dinners, etc. My only granddaughter is 17 months old and full of energy and life, and I simply can’t do anything with her right now. I don’t have the stamina and she has an attention span of 10 second. (GUILT!) BUT the main reason I’m posting is because my husband Tom is so frustrated in trying to understand how to empathize and help me cope. Last week I called him an apathetic a**hole because I just don’t feel he grasps what I’m dealing with and would prefer to pretend I’m just fine and dandy. Tom is a good man, and, at 67 years old, works a physically demanding job every day. And he is trying to take on the load of doing many of the chores and things that I can’t do right now. (More guilt for me.) I know that the physical and emotional demand for him on a day-to-day basis is exhausting. This morning he said that he had looked online for some type of spousal support group in helping him cope and help me with this debilitating disease. He doesn’t really seem to understand the disease itself even though I’ve tried to help him understand with reading materials etc. It’s very hard to know that, more than likely, things will only get worse. I hope I will be one of the success stories with a biologic. But I need Tom to understand that this is a life-long disease and that it can’t be cured, and will continue to impact our lives in many ways forever. It’s not going away. EVER. When Tom and I met he was in his early 50s (never married) and I was a 5-mile a day walker/jogger, full of life and optimism, thin and cute. I joked that he married a younger woman to have someone to push around his wheelchair in his elder years. Hah! Seems the opposite has happened and I’m the useless fat depressed blob that does nothing but wince and sob in pain all day. I hate myself right now and feel an utter failure. Like many of you I don’t feel that I have any support from my extended family- and I try to understand that they can’t FEEL this pain, therefore it’s difficult to understand the depth and range of what I’m dealing with.
In a roundabout way, what I’m getting at, is I’d like to suggest that Tom join this group in the hopes that he can feel free to vent, ask questions and hopefully gain some knowledge in understanding how to help me emotionally. He can’t make this disease go away. And I know that men generally just want to fix things. And when they can’t fix it then the frustration compounds. Do you all think that this is the place for him to gain some insight in supporting me, and helping us both communicate better? Is there another venue that might be able to help him better? Sorry, I know I’m completely rambling and this post is disjointed…so tired…but hoping for some good advice from my friends here.


How do others cope with the disbelievers!
#2

Hey kris1010, before I even read your question I was thinking that you need him to join this community. Even if he chooses not to become a member he can still read and follow the discussions but just won’t be able to post.

I used to be a Moderator here and also a member of the Mod Support team so I can say with absolute certainty he is VERY WELCOME and I do believe it will help.

My husband eventually admitted he’d dipped in and out here many times, especially in the early days … probably checking up on me and moaning about him {wink} but it certainly helped him get his head round what was happening.

Jules


#3

Thank you Jules. I’m sharing your answer with him. I try to remember that HE needs a support system as much as I do.And he isn’t likely to find this support among his friends since they can’t relate. And I hope he’ll be able to vent and feel some understanding from this compassionate and caring group of people.


#4

Hi kris.

As @Jules_G says, your husband would be very welcome to join this community.

My husband used to read posts here occasionally, it was a much more user-friendly route to understanding the disease than medical articles and research papers etc. He doesn’t ‘do’ Internet forums usually, but his respect for this one started with the wonderful support and information I got here while battling and waiting for biologic treatment. I think your husband may well feel the same way once he’s taken a look around, perhaps our “Newbies’ Guide” might be a good place to start … https://www.livingwithpsoriaticarthritis.org/c/a-newbies-guide-to-psa

Anyway, please suggest that he joins us ASAP! We’ll put the kettle on. Also, are there any carers’ groups that meet locally where you are? I realise he’s not exactly your carer but perhaps he would also benefit by meeting others in somewhat similar situations but on neutral territory, as well as joining this community?


#5

I’m so sorry @kris1010 that what you’re going through right now is just so awful for you. I think your husband being able to root around this site would help him at least understand all the challenges so, many of us face. It’s astonishingly educational. It’s the only place where I’ve been wholly ‘educated’ about this disease and I started out with a pretty good idea in the abstract of what a diagnosis of PsA meant. But without me joining this group I’d still be fighting (rather fiercely too) all the meds prescibed. But instead now I am actually benefitting from them.

So please help him to join. Biggest of hugs to you and indeed to him. x


#6

If anyone knows of an online support group for spouses, please let me know. My wife needs to understand more than she will take from me.


#7
     Spiritual Haiku
    by Nancy Fortner

Coping with illness
Hoping for spiritual growth
As my body fades.

Staying positive,
Setbacks are but challenges,
And I praise myself.

Our world will narrow
As we lose abilities
But love can still grow.

Pain is not pleasant,
But we don’t gain compassion
Without suffering.

As a young person
I felt apart from others
Immersed in myself.

But pains and losses
Taught me I was like others;
Not apart from them.

Working at my growth
Meditating twice each day,
Striving for good thoughts.

Seldom meditates,
Nor strives in spirit, but he
Lives in love each day.

He just cares for me
Patiently and lovingly
And grows in spirit.

Maybe my illness
Is not for me, but to grow
His own compassion.

–NancyJ


#8

I’m speechless Nancy. Tears rolling. What a beautifully profound poem that says so much. This may sound strange but I hear my late mother’s wisdom in your words. Thank you for this piece from your heart.


#9

Hi Kris1010,
I sorry I can’t add anything that is going to be really useful but reading your post my heart goes out to you. I so can empathise with your frustration and pain. I have 2 beautiful grandchildren 11 months and 4 years and struggle to help my daughter out with having them one or two days a week. She would have me have them more often and I know she does not understand and thinks my saying I feel unwell I can’t manage to have them on certain days to suit her she just thinks I’m making excuses and I don’t really care. Our other daughter is totally different and fully understands my situation, sadly the other one has always been difficult. It is so frustrating though because I love the grand daughters to bits and would have them every day if I could.
I do hope you soon get some relief from your pain and suffering and can enjoy your little grandchild, (these years are so precious and full of delight). It’s lovely the way you describe your husband as a good man but sad he is struggling to understand, I’m so glad for you that he wants to help you and understand and I hope you both soon get the help you deserve to come to terms with this wretched illness and your life can return to some semblance of normality and peace again for you. In the meantime love and hugs…Anne


#10

Wow, we are nearly twins—except my psoriasis started in 1975 and I actually was diagnosed with PsA around 2008 but didn’t start treatment until 2014.

I get you about a husband who doesn’t grasp the severity of this disease, but glad for you that he helps somewhat. I do ALL the housework, most of the yard work, and if there’s something I need him to do he grumbles like a 10-year old. When his parents were still living he bent over backwards helping them, ignoring my requests for helping with things here. He’s retired now, and he does prepare dinner on the days I work, and he will get groceries with me (mainly because he loves food), plus some yard work, but that’s about it. Our house is almost always a mess because I can’t or don’t feel like keeping after things constantly.
Yesterday he and my son were talking about people not being informed because they don’t read anything. I said I can’t read much because my left eye gets weak and blurred vision, and he just laughed at me. Trust me, many, many times I wondered what divorce would be like. But I think it would’ve been so hard on our kids and now our grandkids…IDK, one excuse is as good as another…we’ve made it together this long, the vows were for better or worse…I’m really not the type of person who sits around thinking the grass is greener in the other side, because usually it’s not.
So, I just have my moments, like right now, complaining about my not-so-perfect marriage and wondering how much of it is my fault as well. I come to the conclusion usually that we just aren’t a very good match and that’s that.
Hey, @kris1010, are you feeling any improvement from the Enbrel yet? Did your doctor prescribe twice a week for starters?
I’ve had good luck with Enbrel.


#11

Kris, this may not be the answer you are looking for, but even though my (2nd) husband of 10 years always told me he understood when I had flare up, etc but over the years when I wasn’t able to go to certain events because I wasn’t feeling well, etc I could see it did bother him. On trips to the ER he would bring a book or magazine when I did my best to hold on to him for some kind of comfort. I wasn’t asking much, just a hand to hold, or an understanding word. Perhaps he just got tired of it as this damn disease not only affects us and it takes a very compassionate and understanding person to deal with it. He had an affair after I had to go on disability after working for over 30 years) and posted photos on social media with his new GF going to places I could no longer visit. But that’s another Oprah. The only way I was able to do these things was to double up on opioids and steroids and just to please him, I refused, so he went elsewhere. We divorced quickly (best thing I ever did. ) What I am saying is all this depends so much on the spouse, if they can handle it.
My daughter was recently dx with RA and is now on Humira. She has been suffering for years but went the holistic route until she couldn’t take it any longer. The most important thing I want to say to you is this…my daughter, now has said to me on so many occasions she NOW gets it. She brought up a time in Hawaii at a beautiful park when she was about 12 when we had to leave early because I wasn’t feeling well. That is what she remembered the most. She has apologized to me over and over for not understanding what we go thru as patients, and only after she was hit hard with it. You see, everyone is different and unless the family member (pardon the metaphor) walks in our shoes, they will never get it. I hope this makes sense to you and it may help to let your husband know about my daughter and how she did a 180 when she realized how debilitating it can be. Best of luck and try not to be too hard on him, he is not ready to get it.


#12

I hope this site helps your hubby. My husband is not ready to even try to understand. He told me yesterday that he knew a man with cerebral palsy who tried harder than I do. I have a bad feeling that this illness is going to lead to the dissolution of our marriage. I hope I’m wrong, but things are just looking so bad on my end. I’m totally disabled, he has too much on his plate as it is - taking care of me is tipping the scale.


#13

That is so sad! If only he could feel your pain for just one day!
I’m 100% sure you don’t want to be totally disabled and you’d do anything to be well. I hope he stops and thinks and realizes how hurtful that comment was—he owes you an apology at the very least. :angry:


#14

I’ve thought about your words and how much you must be reeling from such a hurtful comment from the one who is supposed to be your solace and your support as you travel a journey that neither of you chose. Part of me would like to think your hubby was speaking out of pure frustration in not having the coping skills to deal with a chronic illness that completely debilitates you. Another part of me feels he is “gaslighting” you, tossing guilt on top of the guilt you must already feel. My father did this to my mother when she was diagnosed with SLE and RA, blaming her for her illness and how it was an inconvenience to HIS life. You didn’t ask for this, nor did you do anything to cause it. And one cannot compare how one deals with an illness as compared to another. In my mother’s case she made a decision to end her marriage, despite the vitriol that was thrown at her, and somehow managed to raise three daughters alone. And yet, once she was away from the stress of him, her health began to improve to a degree that she was mostly symptom free for 30 years. Stress is a killer of mind, body and spirit.You have to do what is best for you in the end, with or without him. I hope he will see the cruelty he has beset on you. Counseling would be a gift, but I know it isn’t so easy to come by. At least you can vent here, and know that you are loved and accepted.


#15

Hey, @kris1010, are you feeling any improvement from the Enbrel yet? Did your doctor prescribe twice a week for starters?
I’ve had good luck with Enbrel.

I’ve done two rounds of Enbrel so far but did not double up for the first dose. So far I cant feel any improvement but this horrid gout episode is trumping everything right now. Into my third week with so little rest and maximum pain. Trying to get around with a walker but mostly in bed since once the pangs calm down I don’t want to move!


#16

Hi Caradavin,

That really is a hurtful comment, not to mention totally unconstructive. I can unfortunately recognise @kris1010’s story about her Mum, it was mine more recently. Fortunately like her mother, my health really has improved enormously once that stress was mostly removed.

Remember you are the one with the disease, and take care of yourself :blush:


#17

Good for you Jen75! To make such an enormous life change takes a tremendous amount of courage. Dealing with the disease is more than most of us can handle. Keep healing!


#18

Thanks @kris1010, that is so lovely of you :blush:.

It was one of the hardest things I’ve ever done, but also one of the best, and well and truly has it’s own rewards!


#19

@kris1010
Your husband can contact me if he’d like to. My wife has PsA (probably, diagnosis pending). I think that the best you can do is communicate often and openly about how you feel and how it affects you to help your hubby know what’s going on. He does not know when it hurts and where. He may also not know you feel like a useless fat depressed blob. Note that you may want to look up “cats are liquids” to see some of the advantages of being blob-like.

I have to say I cannot fully understand the impact of PsA because I don’t have it.
Even if I don’t understand the full impact of PsA, I do trust she does the best she can (and more) because that is just the type of person she is. I always see her try hard to keep doing things and get really upset when she cannot do things. So I try to pick up the tasks she cannot because she’s having a bad day and comfort her. If there isn’t enough time/energy for both, I usually pick finishing the task because then at least she won’t get reminded of having a bad day the day after. Similarely, she picks up my slack if I fail (I also have some chronic issues, but they are easier to control).

It also helps that my wife is always happy to see me. The hardest on me is when she’s in pain and gets more snippy with me. I understand that she hurts and it makes her snippy, but it takes effort to not get defensive because it hurts me emotionally. It really helps that I know it’s the pain talking. At worst we just move away physically until we’re in control again and make up by cuddling.


#20

Thank you so much for your viewpoint as a husband. You sound as if you’re very compassionate and understanding of your wife’s pain and issues with PsA. Since my initial posting I had to have a below the knee amputation of my left leg in September, due to a blood clot in my iliac artery. By the time the doctors figured out it wasn’t PsA or gout, it was too late. So l life is very different now. And on top of it, I’m now having a flare in my right foot. My hubby should get the Man of The Year award. He has been incredibly supportive and taken on everything now. I am blessed. I think your wife would say the same. It’s a journey.