Practical Tips for Living with Someone with Psoriatic Arthritis
I’ll be the first to admit, I am super hard to live with. My pain level changes daily which makes my mood, abilities, and plans very unpredictable. My sweet husband often asks, “What can I do to help you?” Usually I mumble, “Oh…nothing…” But really, there are actually quite a few things.
Practical everyday tips
If you see me struggling with opening bottles, help me. My husband is wonderful at this. He will often just go ahead and “pre-open” the water bottles or juice bottles when they go in the fridge, in case he isn’t home when I would like a drink. It may seem like a little thing, but it really makes a difference for me every single day.
Ask me about my pain. I know you can’t always relate to the level or type of pain I experience on a daily basis. But it does feel good when you care enough to ask. It shows me that you are interested and you have not forgotten about what I deal with every day. I know most days I don’t “look” sick, so it can be easy to forget that me being normal is really all an act.
Don’t roll your eyes or feign interest, especially if I am telling you about a new ache, strange symptom, or treatment plan. These things matter a great deal to me. They impact so much of my life. To you, all the different treatment options may sound the same, but for me making treatment decisions is a huge burden with consequences that impact both physical and financial health.
Allow me to wake up slowly, at my own pace. This one is HUGE. The pain and stiffness is at it’s worst in the morning. I move slow. I’m cranky. I ache all over. Give me time to work out the kinks and get my body moving. I’m happy to wake up earlier to allow for this time, but the time itself is not negotiable.
Support me in making purchases that will make everyday life easier. Earlier this year, I put off buying some simple things that would go a long way to making daily life easier for me. They may not seem like a big deal to you, but electronic can openers, lightweight mugs with large handles, and lightweight sweepers can make a difficult day much easier. Encourage me to make these purchases. Or better yet, if the funds are available, purchase them for me. It will show that you have thought about me and the pains I go through.
Don’t forget the “chronic” part of chronic illness. Yes, I have good days and bad days. Days when I “appear” to be better. These days are wonderful and I celebrate them, but it doesn’t mean that I am healed or that there is an easy fix to my condition.
Pay attention to my cues when we are out together. When we go out with friends or attend an event together, I don’t want to draw attention to the fact that I have PsA. If I appear overwhelmed or in pain, be aware of that. Know the differences between my real smiles and my “I’m in pain but trying now to show it” smiles. Please try and acknowledge the fact without drawing unwanted attention. And please, make an excuse OTHER than my health for a quick exit if necessary.
Practical flare day tips
With flare days, it is a little trickier. These tips are specific to those dreadful days when I am in the most pain, when I have the most fatigue, and when I’m probably the crankiest.
Make sure the ice pack is in the freezer and the heating pad is nearby. It is very hard to tell which is going to help the most, heat or cold. Having these available and easy to access makes it much easier for me. Especially if I forget to return the freezer pack to the freezer, which I often do. My husband is amazing at searching this out and returning it so it is ready when I need it again.
Keep the remotes nearby or at least visible so I don’t have to exert undue amounts of energy just to watch tv. Those little suckers can be so hard to find!
Check on me frequently. During a flare, I am much more likely to slip, trip, drop things, or even suffer worsening emotional effects like anxiety or depression. Whether I’m holed up in bed or on the couch, please take the time to check in, chat with me, or make sure I’m doing ok.
Occupy the children. I HATE when they see me during a flare. If you can take them to the park, for a walk, or to a movie not only does it give them something fun to do, it helps me with the ever-present burden of mom guilt.
I know, not everything in our lives can revolve around my psoriatic arthritis. That would be asking too much of the both of us. We can’t let it take over our lives. However, when it comes to carrying the daily burden of this disease, I’ll take all the help I can get. Trying to use some of these practical tips will make both of our lives a little easier and provide guidance for the wonderful question, “What can I do?”