I need some advice or to vent, I am not sure.
We all know things have been super stressful the past few years. My husband is in a medical profession that has been radically changed by covid. He comes home stressed and exhausted almost everyday. I do my best to keep things light and postive, help him out, etc.
I homeschool my son, run a part time gardening business online, host homeschool classes, and all the other wife/mother things around the house. I’m also tired and dealing with PsA isn’t easy (we all know this).
My husband is my go to person to vent about how I am feeling. Trust me, I dont over do it, but I need someone to talk to. Just to say “This really sucks!” Well the other night he gave me the “I don’t believe you speech” you get from a doctor that just isn’t buying your story. It was about my healing time, which has been very slow and my worry. I was stunned and sad. I know he is overloaded and I know he didnt mean to hurt my feelings but I don’t 100% trust him to confide my PsA pains and concerns now. I need someone or somewhere to vent about things that isn’t a FB group. I thought about a journal or starting a blog. Something where I can get these thoughts out without risking a sting.
I am not seeking a spouse/partner bashing post. We are all human and doing our best in this world. He is a very good husband and has apologized. Just looking for some advice.
Hugs to both of you. Covid has certainly taken its toll on anyone in the medical profession, as well as the rest of us. I don’t seek understanding from my partner though about PsA. He gets when things aren’t going well but I know he doesn’t understand why, he can get I feel frightened sometimes but he doesn’t get (and that’s no criticism whatsoever) how it can make me feel. Other PsA people do though. Always. I have two in partcular girlfriends (who also suffer PsA) who I probably chat to virtually daily. They most certainly get it. And they’re good at understanding PsA too so can often explain a reason for something happening. And if they don’t I bring the issue to my rheumy, who can invariably explain things too. I’m seeker of understanding why etc etc, so I’ll do lots of research myself too.
I can’t remember what meds you’re on but healing delay is really common with PsA and its meds. Years ago now, I gashed my shin really badly and it couldn’t be stitched. I was on sulfasalazine then and it took 7 long weeks plus two infections requiring antibiotics to even start to knit together. I nearly went out of my mind as I couldn’t wet it so showering etc was difficult etc etc. But I had a choice give up sulfasalazine which was working well for me, or wait it out. I waited it out. I now sport a wonderful scar on my shin of that time.
I write for a living so for me writing things down always works. But actually I also need answers so I require the feedback too. I don’t know if any of this helps or not. However I consider having such an insane disease as ours is basically a rollercoaster of sorts and there’s often little to do but cling on when the ride gets scary. Given I’m an optimist by nature, I get by by believing things will get a little better. Often that’s questionable but… More hugs.
It sounds like journaling may be just right for you. It sounds like a lot of burnout for your spouse, and probably for you as well.
What about asking your spouse out on a date? Sometimes when we get into these situations reconnecting can make a really big difference. It doesn’t make your health issues go away, nor does it make his job worries go away. But it can and will help your relationship and how you interact.
And of course, please come here to vent. There’s someone here almost around the clock who will definitely understand what you’re going through.
I have a friend in her early twenties who’s going through a lot of health issues. While I don’t fully understand everything she’s going through, I listen to her, and let her know that I believe her. We don’t necessarily need solutions as much as someone who hears us and believes us. Speaking things out loud can make a difference. Honestly, she also knows that I’ll take her little girls for a stretch if she needs it as well, so offering something concrete can be helpful.
Thanks @Poo_therapy. Sometimes I think because he does know how PsA works somewhat and he understands all the medications that when we talk about it he switches into job mode and forgets it’s just me. I am also a seeker of answers. I like to know the whys of what is going on. Have a discussion. We used to do that, but he is just under so much stress now.
OH wow! I know what you mean about your healing delay. I got this cut on my finger from a cardboard box and I felt I was playing a game of war! Who will win, me or the cut?! I finally got an antibiotic. 4 weeks! I am glad your knee finally healed.
Thanks for your thoughts. I do agree that writing might be best. Or typing, as this doesnt hurt my hands as much. Maybe a blog that isn’t public. This ride is an unfair one. Good weeks, then bad months. I appreciate the hugs. I really do. Thanks!
Thanks @Stoney, yes there is a lot of burnout. Our son is gifted with a lot of quirkiness. Finding a babysitter is not easy. Since he was little we were lucky to find someone and now it isn’t possible. I do try and find parents night out events he can attend since he is 11, but sometimes those dont work out. We dont have any family near by and there isnt a friend we can do swaps with.
I did have one new friend who wanted to swap health stories but it was overload. 10 text a day about her various health issues. Very crunchy related things. I couldnt handle it. So now I have a friend or two who asked how I am but they want the overview answers. My grandmother was my real vent person and she recently passed away. Maybe thats why I feel so lost and looking for someone to relate to. I think even making this post here has helped me a ton. Sometimes grief can smack you like a bat when you arent looking for it.
Yes! I know someone whose need level is just simply too much for me! She drains all of my energy, so I don’t spend time with her.
Without question this forum saved my life, when I was going through the early stages of diagnosis, and finding the right meds. I was saying to a friend just yesterday that I could not even begin to understand how much MORE difficult it would have been at age 30 - with marriage, kids, career etc - than it was at 60. And it was horrifying at 60! (And not after two years of the pandemic either….)
My husband is very supportive, but he is a worrier and takes it hard when I vent frustration, or pain. His despair about me does nothing to lessen the load, as I end up comforting him, lol. I get all of the feelings you mention. I have never been very good at « not knowing » or asking for help. PsA’s twists and turns makes me nuts.
This forum always listens! I hope you continue to reach out. We’ll be here.
Thanks @Susan2. I was diagnosed at 32ish. I honestly need to ask my rheumy my diagnosed date. Maybe I can have a party? LOL! But I should have been diagnosed MUCH sooner, but I was trying to get pregnant and would not take any meds. It is hard. I am now 40. I try to keep up with my 40ish year old counterpart moms but it never works. I can go for so long then crash. If I didnt have an 11 year old I would take life much much slower. I was only able to have one child and he was premature, 30 weeks. My other baby did not survive. So I have SO much guilt when it comes to my son. I feel the need to make sure he gets enough interaction and I dont want him to feel he has a “sick mom”. Well that went off subject!
I am not a help asker either. I dont want to seem weak or feeble. My husband is the one person I do feel safe asking for help but he can’t be that person right now. He was supposed to be off today and was called into work again. I took my son to the library and for ice cream. Another day…
I’m trying to change up the conversations that often leave my wife frustrated as she just can’t doing anything to help. I tend to create a compassion numbness through giving the same old answer regarding how I am feeling. She feels bad and sometimes out of frustration with herself just has to pull away from being a “helper’ because she finds little success in her attempts. After the same morning conversation such as, “how was your night?’, “I’ve had better but can’t remember when”, “anything new?” “Ya, my ankle woke me up and I couldn’t get back to sleep and then a couple of my fingers starting throbbing…etc.” And so it goes day after day and it is THAT reality of not being able to help, never being able to take some of the pain that leaves our loved ones baffled, discouraged and maybe a bit desperate as they come to grips with their inability to make it better. BUT, a good ear and a nod of “knowing” that things are real crappy is more help than they might know. @amielynn38 it sounds like you are not only a good mom but a wise one. You will likely have many years of good support from your son in the years way ahead! Hang in and always vent before blowing up! Eat more ice cream.
I was already retired when I was diagnosed. You are absolutely my hero for all you have on your plate! I think mom-guilt is universal. I also think that we project all our guilt onto our children, whether or not they actually are suffering from our « failures ». We also spend a lot of time comparing ourselves to others, lol. Your boy loves you exactly as you are. He is NOT comparing you to anyone - you are his only mom, and you’re perfect! Maybe there should be a lot more library and ice cream days!
Anyway, although it’s almost impossible to do, day by day is the only way to navigate. Try to give yourself permission to just…… stop. For a day, or even a week. You ARE sick, but you are not « the sick mom ». Moms get to just be mom. That’s all he ever needs, and you are obviously giving him all your love, every single day, just by being you.
Whew! That ended up sounding like a preacher in a revival tent!
If you want a one-on-one shoulder, I’m always here.
@Amos I do agree. I have noticed that I give very general answers. How can he really understand that “my knee hurts” means so much more than just a small pain. There isnt much he can do. He offers things like take a bath or do you need ice and I sometimes accept, most of the times I do not. I dont really need him to help me physically just listen to me vent say, “That sounds hard” because it is. Thanks about the mom part. I do hope through my situation he does become a more compassionate person. Learning to see the struggles people face and how they overcome them in their own ways. I wish I could have lots of ice cream… I could swim in that easily!
@Susan2 Wow!! I tear up with that one. You are right. I do compare myself to other moms. It is hard not to but it isnt needed. I need to remember he just needs me, as I am. Today we didnt do our scheduled activities. We are staying home, reading, and I am working in the garden. So far it has been lovely. Thank you. I can always use a one on one shoulder!
Sounds like a fabulous day! Always glad to listen….
It most certainly can. And it can be quite almost shocking too. My Mum was my vent person and indeed my wholehearted champion. She died in 2013 and I got PsA in 2015/2016. And yes I do believe there’s a correlation too. I was her executor and had quite a time sorting out things with my stepfather’s executors who rather stupidly thought it might be easy to bully me. That was a bit silly and underestimating, but my consequent roar and ferociousness took its toll. We sorted things out according the Wills of both of them and not as they wished to instead. It took two years though, and lots of brinkmanship. I loathe injustice.
So she wasn’t hear when I literally fell to PsA. That was hard.
Never underestimate how grief and loss affects you. It affects such a lot of things. More hugs.
Thanks @Poo_therapy. That does sound like a hard time of it. It doesn’t give you proper time to grieve when there is work to do. I am glad things were finally sorted for you but it took its toll I see. Luckily my grandfather is still alive so there wasn’t much will to be handled but he was unable to pay for the funeral costs. so, that fell on me. My mother was in no place to help out and I wasn’t going to see things be done incorrectly. So I arranged everything. It was hard but organizing and details are what I am best at. Plus it kept my mind busy. Then I had a huge flare! Of course! Going through I minor one now that the moving season is over. I am hoping for a “less pain” summer.
I sometimes wonder if we manage PsA or does it manage us?
Thats a good question. I feel there is so sort of fence. We both walk along the fence. Sometimes I jump the fence, sometimes PsA does. We both walk along trying to keep the balance.
I have PsA but it doesn’t have me is one of my mantras at the worst times. With pacing and planning etc, alot of the time, we manage it. But as you know I consider it as irrational as that toddler smiling at you one minute and lying on the floor in the supermarket the next having a total meltdown. In those situations who knows?!
I like the toddler metaphor!
Sounds like you are expecting a lot from your spouse as your “vent”. You might try Gratitude meditations - amidst all the PsA, there are still good things happening to us. I read a book called “The Creative Cure” by Jacob Nordby that was hugely helpful, and includes methods of journaling.
But most of all, don’t let your emotions overwhelm you. You control how you react to situations, including this one. Reframe the encounter in a new story. Try getting an app like Insight Timer, and doing some self-love meditations. Dr. Tara Brach has some great ones. She’s fantastic.