Feeling alone and like I have no help :(

I am having a really hard time right now with my boyfriend and having him understand what I am going through. We are 22 and have a 4 year old daughter. He does work a very hard, labor intensive job, but I just can’t seem to get him to help me around the house and with our daughter. We have been together since we were 17 and prior to the PsA I did everything, and I didn’t mind. He works hard and I always did my best to make sure everything was taken care of at home. But now I just can’t do as much. Not only is the pain getting to me but I recently started humira and I’m having negative side effects such as extreme fatigue, nausea and headaches. I ask him all the time if he can start to help more and he says yes but it’s just an empty promise because it never happens. I hate having to continuously throw the “I’m sick, I can’t do as much” card out there but he just doesn’t seem to get it. I don’t know how to get him to understand. :frowning: any advice?

And I feel like when I do ask him for help he gets upset, as if I am being lazy or just expect him to do everything. But that’s not true at all, I still do so much, and I’m just asking for a little help. But then when I push myself to get everything done and I’m in a lot of pain he yells at me for going beyond my limits. I feel like I have just hit a wall and I need help on how to fix this.

That’s such a hard one, and I sometimes think peoples loved ones don’t want to ‘see’ because then they have to face it and it frightens them too. Do you have any literature on PsA he can read? or would he have a look on this site to read what we go through? There is some guidance on the IHI site in the form of a PDF which maybe helpful…I think I may have put it up on one of my blogs

Men like to sit down and unwind for a bit when they get home. Give him time to do that. They hate being confronted or asked to do heaps the moment they walk in the door. Give him a half hour to an hour before even asking and ask nicely. If you don't get a response try a telling him you have put it on a list on say the fridge.

I have found it makes a big difference on how I feel and how I cope and this relates to what I eat. I think it is important to try and eat as healthy as I think our bodies need every bit of nutrition we can feed it. It might be worth a try. Plenty of information is on the net on foods rich in antioxidants that help repair cells, vitamin C that boosts your immune system and foods that have anti inflammatory properties.

Get information off the net about PsA and print it out. Ask him to read it, so he will have a better understanding of what you are going through. Keep a journal of your symptoms and difficulties and feelings and ask him to read this when he has time.

Wishing you well

Hugs! It's difficult when your partner doesn't truly understand what you're going through - and even tougher to accept that we can't expect others to know what we're going through. I've found it helpful to make a list of everything I do in a day - literally everything from getting out of bed, to showering, to laundry, dishes, meal prep, etc. to picking up after the kids / my husband ... so my husband can have a real idea of what I do accomplish. I also make a list of what I need him to help with most on any given day. When I'm having a major flare, I sit him down and tell him that I need him to understand that I'm medically supposed to be doing nothing more than taking care of myself and my basic needs, and that anything I do above and beyond keeping myself clean, fed, and rested is a bonus.

Having him read the Spoon Theory might be helpful: http://www.butyoudontlooksick.com/category/the-spoon-theory/

My husband and I have found a system where we write done 3 things we will take care of that day and stick to it. There is even some chores your 4 year old can take care of. My 3 year old picks up her toys each night and before nap, collects dirty clothes from the laundry bins, and she feeds the dog. Once you get a pattern helping each other out it is a lot easier.

Thank you everyone for your tips and advice. I hope we can figure out a system that works for us soon :slight_smile: … And the “Spoon theory” made me cry… I really liked the way she presented her day to day struggles. Thank you!

Hi Lena,

First, i’d echo Bella (but I’m more blunt :slight_smile: - nothing worse than a stressed, harried spouse waiting for you at the end of a days work. How to fix it? Well, if you are being mum at home, do dinner prep in the morning when the little one will be at their most independent, and make sure everything that “has” to be done, is done by 2pm.

Then ask your boyfriend to text an hour before he will be home - this is your alarm clock - put the little one in front of Thomas or Dora or whatever works for an hour, and stay on the couch. No really, don’t move. No you can’t just hang out that load of washing… Lie down!

You’ll be amazed how an hour of peace makes it so much easier to greet him at the door with a smile, and the difference it will make to the two of you.

Yes, your little one will watch some tv, and you probably won’t get as much done during the day (see step two), but most likely you’ll find out that whilst your boyfriend won’t actually pick up the slack, he also doesn’t care that the oven hasn’t been cleaned for 12 months, or that the microwave has never been cleaned… And if you can give him a smile, it could make all the difference.

So onto step two… It’s possible the reason he is not helping more is because he simply has different expectations. My husband thinks its fine to go for 2 months without washing sheets, so I always did it, because I thought two weeks was really the outside limit.

Once I got PsA, it turns out that 2 months, at a stretch, is ok in winter :slight_smile: … And he’d still wait for three if I didn’t wash them!

Finally, it’s important to note that the reason I’ve talked about what you can change, is simply because it’s much easier to change yourself, not because you are the one who should change. This is not about who is right or wrong.

Unfortunately PsA is not fair, and so far, my experience suggests that once you have PsA, it’s easier to think about what can make your life better, rather than what’s ‘right’ or ‘fair’.

I hope you get the chance to enjoy some time with the dad of your little one soon :slight_smile:

These are all great suggestions. I always find that giving my husband 15-20 minutes when he gets home make a huge difference for everyone. At this point, my kids are trained to basically ignore him until he has changed his clothes and finished his coffee.

I also find that some little things make a huge difference. So we pick up toys and wash dishes before he gets home. Even if I haven't accomplished more than that all day, the house doesn't LOOK like it's a mess.

Another thought. . . Are you willing to ask for help? Do you have family nearby that could give you a break once or twice a week?

Thank you nym for ‘The Spoon Theory’ its so true it made me cry when I read it and has helped friends who also suffer chronic illness…we now talk in spoons when asking about each other :slight_smile:

I can't give you much advice except to give him material to read on PsA symptoms and Humira side effects. I am going through the same thing with my fiance. He doesn't seem to understand that I am doing my best, but I can't do it by myself. I take methotrexate and on the one day a week when I take it, I cannot get out of bed for several hours. He works out of town a lot. We have 2 kids. I just took my MTX a few minutes ago and I am here alone with the kids. I am really scared that no one is here to help me. Thankfully, my 21 month old son just fell asleep for his nap and my 6 year old is watching a movie in her room. I have a neighbor that is going to check in every hour to see if my kids need anything, but I am still scared.