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Daily Struggles with Psoriatic Arthritis

Daily Struggles with Psoriatic Arthritis

Obviously, getting out of bed is probably the biggest struggle every single day. That is a given. But I am constantly surprised at how, even with medicine, there seem to be a million things I try to do daily that are much more difficult when you have psoriatic arthritis. These daily struggles can seem like little things, and maybe they are. But throughout the day they can pile on and leave me feeling overwhelmed, frustrated, and beaten down by PsA.

It’s the little things really

  • Car seat buttons– No joke, these things are seriously difficult. I have to use the finger of thumb that is in the least amount of pain that day to push with all my might, just to lock or unlock my poor youngest child from her car seat. There are even days when I avoid going anywhere simply because of how hard I have to fight the car seat.
  • Fabric softener buttons– Do you know what I’m talking about here? Let me explain…We are a family of 5, so we go through some serious laundry in a week. Therefore, we buy the giant container of fabric softener from the big box store. Well, on the nozzle, there is a red button that dispenses the fabric softener into the cup. With PsA, it takes like the strength of a thousand men to simply press the red button. However, if you press too hard the bottle flips and fabric softener flies everywhere. Trust me, I’ve done it more times than I really care to admit. The struggle is real.
  • Water bottles– These have been such a problem for me that my darling hubby actually goes through and “pre-opens” all the water bottles for me so that I can actually drink water if he isn’t home. The number of strangers I’ve asked to open my bottle for me would probably shock you. All I want is a drink people, geez.
  • Hair and makeup– Back in the land of the “pre-PsA me” I loved spending an hour doing my hair and makeup. I would test out the latest in winged eyeliner and perfectly highlighted cheekbones. Most days now I’m lucky if I make it through a whole shower and getting dressed without being exhausted. I have the simplest hairstyle possible and haven’t worn eyeliner in months. My hands just don’t have the dexterity or endurance anymore.
  • Tying shoes– I’ve been pretty content with slip-ons, and I’m okay with that. I’ve even gotten away with velcro shoes for my kiddos for as long as humanly possible. But now they are starting to notice. They want the cool shoes with laces. I know I should only allow them if they can tie them themselves. But I feel like they already make so many allowances for when “Mommy isn’t feeling well” that the least I can do is allow them a hip pair of sneakers. But honestly, this is another one of those things that I really wouldn’t have thought twice about a year ago, but is seriously a daily struggle for me now.
  • Getting off the couch like a normal human or really, the whole combination of standing up and taking a few steps from any seated position. Most of the time I look like a strange mix of Egore and Frankenstein. I try not to sit for more than 5 minutes at any given time to avoid this. This most glamorous gait is acceptable at say, the doctor’s office, but at the hair salon or a restaurant and people will look at you like you’ve straight up lost your mind.
  • Doing my daughters’ hair– Like any little girl in the 3 to 6 year old range, my girls love Frozen and pretty much want to be Ana and Elsa every single day. If you know Frozen at all (if not, you’ve clearly been living under a rock for the past 5 years) you know that Ana and Elsa have the MOST FABULOUS braided hair ever. Seriously. Amazing stuff right there. So naturally, my little girls must have the exact same hairstyle. Not only does this take serious dexterity, but it is also a serious time commitment. About halfway through, my hands are throbbing and fumbling with the tiny strands of hair. My good old “Mom guilt” sets in and I just know that I must be a failure as a mom if I can’t finish these simple braids.

So how do we get through it?

How do we survive the daily struggles that can pile up so heavily on our shoulders? I wish I had a fabulous answer to this question. But I honestly don’t know. I have developed coping mechanisms that get me out of the moment, at least. I laugh. I take a giant, deep breath. I scream. I try and remind myself that it is simply a moment, like any other, where life isn’t going exactly as I have planned it. Fabric softener peppering my hair, my daughter’s poor, crazy braids-these moments are extremely frustrating, but if I didn’t find some humor and make light of the situation I’d probably cry my eyes out. What do you do to get through those daily struggles? How do you keep from being overwhelmed by daily life with PsA?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Kcole11
    5 months ago

    I am truly struggling. It is so difficult to do lots of things. Traveling is such a large feat that it takes so much out of me. Pain is exhausting.

  • Cmstark
    1 year ago

    I can relate to so much of this! My daughter is now a teenager and no longer needs me to tie her shoes. Now when I wear shoes with laces, she helps me tie my shoes whenever they come undone.
    Sometimes my daughter wants me to help with that certain, special hairstyle. It wears me out, but now she can do parts of it and allow me to rest. On the rare occasion I want to do my own hair, it has to be done very quickly, or my arms and shoulders will give out completely.
    I have to do activities in short spurts and come back to it later whenever possible, so I have to allow a lot more time.ive also learned to ask for help more and am very blessed that I have a supportive husband and helpful daughter. The hardest part for me is the guilt of knowing my sweet girl spends more time helping me now than any teen should have to.

  • Tiblake
    1 year ago

    I frequently feel as if my coworkers and friends think I am just beong lazy. I feel as if I am making excuses for why I am struggling to do simple, everyday tasks. And my husband who is in a nursing home for various reasons also can’t understand what I am going through. Just today we ventured out to do some shopping. I have to get his wheelchair and him into our van and strapped in. I had several stores I wanted to visit. Needless to say, one store and I was exhausted and done. I feel so helpless (worthless) sometimes. The struggle is real.

  • tridmo
    1 year ago

    On wish.com I found magnetic shoe closures. They have holes that you lace into. To “tie” your shoes you just bring them towards each other, once close enough they attach to themselves. To undo them you can either separate them with your hands or step on the heal of your shoe and rock your foot forward.

  • chad1992
    1 year ago

    I want to thank you for sharing your struggles. I have had psoriasis ever since I was a baby. Now I’m 44 and 4 years ago I went from hurting a little to not being hardly able to walk. I love this website because nobody in my family really understands how much pain and how hard it is to do the simplest things. Their are days that seriously I just want to cry and stay in bed but I know that if I don’t get up and go to work we could loose a lot so I force myself. I get so irritable and am in so much pain that I just don’t know what to do. I look for earthly remedies and nothing seems to take the pain away. If anyone out there knows of anything that can help please let me know. Again thank you for sharing it makes me know I’m not the only one with this disease

  • J.Nunga
    1 year ago

    Daily struggles, oh yes there are many. Shirts with tiny buttons is one, I had to spend and hour talking to our HR person about how our work uniform is not suitable for someone with PsA. She couldn’t understand the difficulty of doing up lots of tiny buttons in the morning, which for me is a major issue. I did have a win though, I can now where a uniform shirt with NO buttons, it’s much more comfortable, and does not need ironing, (another daily struggle), now all the other women at my workplace have started wearing the same, so PsA can be good for some things.

  • McFadzean
    1 year ago

    Amen to all the above. getting out of bed in the morning is agony. The thought of going for shower doing my hair and getting dressed is so depressing I want to just pull the covers over my head but I can’t. The pain in grabbing the covers over me is unbearable so if my husband is not at home to help me I have just stay cold. Lifting sauce pans is impossible and cutting veggies etc is is also impossible. My husband is wonderful and does most of these things for me. Making our bed is also impossible so my life feels hopeless. Unfortunately I am very particular and get stressed if things don’t get done as I would like but rather than keeping nagging at my husband I have to shut my eyes and count to ten. I feel sad that there are so many people suffering dreadfully from this terrible illness.

  • Koffegurl
    2 years ago

    I can’t open a pop top can anymore unless I use a spoon instead of my finger. Forget twisting a cap off of a water bottle or opening a jar.

    I cut my hair really short a few years ago and keep it short. On my disability application I had to admit that I can no longer use a hair dryer or curling iron. I attempted to wear make up recently and ended up washing it off as I looked like a clown.

    Slip on shoes are non-negotiable anymore. My hands hurt so bad some days, I don’t want to drive, afraid the steering wheel will slip because I can’t grasp it because of the pain. Oh, and some nights trying to even put my CPAP mask on is nearly impossible.

    I can usually get in or out of bed okay, but trying to walk or straighten up takes forever.

    There has to be a better future for all of us.

  • NicE
    2 years ago

    Turning ignition key of our family van is the hardest for me. I’m recently diagnosed with PsA, lot’s to learn still and concerned with how quickly symptoms are progressing. Getting up in the morning is definitely rough as the bottoms of my feet and ankles feel the worst after I’ve been sleeping.

  • NicE
    2 years ago

    Just discovered that if I push with my thumb instead of turn with my wrist, it makes it much easier and less painful to turn on the van. Yay! It’s the little things 🙂

  • CathyD moderator
    2 years ago

    Awesome, NicE!! And you are so right about the little things!

  • Radiomom2
    2 years ago

    Boy some of that hit home. Work is hard on me. I work in the billing office of a hospital. Typing is my job and it is so difficult. Even using the mouse can be painful. Getting up from my desk is painful. Something I do all the time. The dang printer is in another room.
    I have one grandson and twin boys on the way! Car seats, stairs, baby carriers are my fears.

  • NicE
    2 years ago

    Are you the one pregnant with twins? If you haven’t purchased car seats yet just be sure to test out a few and get ones that are easiest for you to unbuckle. Definitely try to get the kind that come with the stroller that the car seat just snaps into…I know they make ’em for twins too. I get pains from mouse usage as well. Maybe a keyboard with the built in mouse would help….also perhaps a voice typing software? Good luck!

  • SuzieQue
    2 years ago

    Thank you! Sometimes I feel like I must be crazy or lazy or something! Sometimes the pain prevents me from doing certain things, and other times it’s the bone-deep fatigue. It is so hard to explain how I feel. It just feels good to know that someone out there “get’s it”.

  • trixiepop
    2 years ago

    Everything you said hit home. Thank you for sharing!

  • kathie
    2 years ago

    That getting off the couch thing? There have been times when I actually have to talk myself into doing it. I tell myself it takes less than 10 seconds to do this but the anticipation of the pain involved in that 10 seconds holds me back. Aurgh!

  • VickiN moderator
    2 years ago

    kathie, I am right there with you! If I need to get up to get something like a glass of water I start thinking “how much do I REALLY need that glass?” I hope you are well today 🙂
    -Victoria, Community Moderator

  • Amyell
    2 years ago

    All the little things that you can no longer do, that’s what frustrates me the most. Can’t open bottles, the seat belt struggle, lol. Right there with you!

  • golfgirloo7
    1 year ago

    Showering and getting dress
    I thought I had lost my mind and becoming a lazy stinky girl… I love showers, baths …
    Asking someone to open bottle water and zip & unzipped dresses was frustrating and I found myself crying/laughing … Few times I went to work with my dress half zipped up, just put a jacket over it..
    I can only get so creative to all my daily shortcuts tasks…

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