Please don’t get me wrong, my husband has been to every single doctor appointment with me since this nightmare began. Lately, he’s been talking about the day I don’t have to use the cane anymore. Or the day I will be cured of Psa. I know he’s trying to be supportive in the only way he knows but every time I remind him that my health issues- Graves Disease, Osteoarthritis and now Psa - have no cure, he gets angry with me. I try to gently remind him there maybe a day when my symptoms are under control though considering the flare I am in right now that day seems so long from now. I had knee replacement surgery 7 months ago (before the Psa diagnosis) and things only got worse for me to to point i am not steady on my feet without the cane. In fact, my cane has prevented me from falling quite a few times lately.
I started Otezla two weeks ago and he expected to see immediate results. Instead I got a flare up. I haven’t slept for more than a few hours since Saturday and the pain is now out of control. I spoke to my Rheumatologist yesterday. She prescribed prednisone. I will have to follow up with my regular doctor since she has no availability this week or next.
I woke up this morning. My feet are on fire and my back feels like its been on a torture device. Hubby said “but we have a brand new orthopedic mattress. You’re back should’ve bother you!” He wants to plan for vacations of old in the next 6 months - snorkeling, tubing. Kayaking- things I know I can’t do. When I suggested a less stressful vacation he gets angry.
I have sent him literature on Psa from the Arthritis foundation but he only glances at it. If I ask him if he read what I gave him he says he did but it is clear he didn’t. When I ask him please don’t squeeze my hands when we are watching TV, he forgets, which causes me pain and then he goes into his one day you will be cured of all this speech. I understand his frustration but we are both in the same boat with frustration. I want my life back the way it was before too. He reminded me I worked and went on vacations before I knew I had Psa - yes I was a good soldier and I didn’t let on how much pain I was in to anyone but it affected my ability to do my job. I don’t want to be in pain anymore. However, I can’t keep a stiff upper lip anymore and plow through the day. I can’t hide the pain anymore. How do you make him understand that?
I’ve got my megaphone ready. “Hey there! SharonB’s husband! PsA is not curable, nor is the other stuff! But life can still be fun, it can still be good. Support SharonB now in getting the best control she can!! Don’t be depressed about it, but ditch the denial!”
Where do you live? I’ll be in your front garden by nightfall ready to broadcast my message.
He’s hurting isn’t he? Surely someone who obviously cares about you so much will eventually come round. It’s a tough one … and very tough on you too.
Men (husbands especially according to my wife) think they can fix anything and everything. Look in any mans garage at the hidden pile of unfinished projects and broken stuff to know this is true, as well as their total inability to admit they can’t.
When it comes to their wives they are even more hopeless. As much as it drives you nuts and hurts at times, know he is processing, having a lot difficulty (as we tend to do with simple things - think back to his last cold) Know this situation is really just an example of just how much he cares and loves you, He will come around and likely be your biggest advocate and that can be scary when he gets on board. He will come around.
A word of advice he is probably right about one thing. Before you had a diagnoses despite the pain etc you did live a normal life (well mostly a normal life) You still can, the diagnoses shouldn’t change anything. We just have to plow forward.
Now I’m not saying this is you, BUT I have seen more than one person who upon receiving a diagnoses who now has reason for not doing the things they did before the Diagnoses, quits doing them. Sadly they go backwards quickly and then have to work very hard to get where they were
so what do you say? try “get off the couch, turn off the TV and fix the damn mailbox”
I agree that he is likely in a state of denial and wants desperately to think you can get your old life back. My husband had a horrible time accepting my son’s food allergies back in the day. He would play them down to everyone, yet I was trying to get these same people to stop offering my child food. It took a good 2 yrs for him to realize he couldn’t fix it and he couldn’t keep hoping for a cure or for him to outgrow things. He had a slow buildup to accepting my PsA (20+ yrs of joint issues, beginning while we were engaged), but our son’s health issues were devastating to us. I think time will help immensely, and I agree to be patient. It will be very frustrating, but I think you will see him change if your situation stays the same. Eventually he will have no choice to accept life as it is. I wish you the best with this current flare and hope you get some relief very soon.
I think your husband is stuck in denial. Your loses and restrictions are now his as well. He doesn;t feel the pain that you do and doesn’t really understand how awful it can be for you. But, you can’t feel the emotional pain he suffers by his new, unwelcome, changes in his life that cause him to be angry and reluctant to accept. I feel your frustration because I have also experienced an overly cheerful, optimistic husband. Believe it or not, I think your husband loves you very much and is grieving the lose of the way you used to experience life together. All the fun activities that you have previously enjoyed together are becoming out of reach for him. Maybe he could do some of those things with another family member, or a close friend. Give him your earnest permission to continue to enjoy his life as much as possible. And let him accept the inevitable at his own pace. Chronic illness is no fun for anyone - partners of the ill person included. Be patient with his journey and continue to assure him that your illness will never affect your love for him. Blessings!
Toni
PS, I haven’t found the spell check in this program so I apologize for any misspelled words.
Thank you all. I am on the other side of the flare now after the Rheumatologist added some prednisone. I understand his perspective thanks to @tntlamb@Cynthia@Sybil@lisarockgirl4 and @Tas for your perspective. @Sybil keep that bullhorn handy i may need it for my long term disability carrier. They don’t think PSa is a big deal.
I’d imagine your husband’s perspective is easier to understand from the other side of the flare, too. I’m a very forgiving individual when I feel particularly well.
Long term disability carrier … I’m the wrong side of the pond to know exactly what is involved, but I get the drift. I hope things work out SharonB.