I have been living with psoriatic arthritis since I was 10 years old. I suppose I should be used to pain by now. This disease has affected nearly every joint in my body. Its hitting my feet and ankles as well as my hands currently. I am on some pretty hefty pain medicines but the pain is cutting through it. I just want the pain to stop. My psoriasis is flaring now as well. Between the joint swelling and my skin cracking and bleeding I'm lost in a world of pain. I have 3 step children to care for as well as a husband. How can I take care of my family if I can barely walk. If anyone has any suggestions I would lobe to hear them.
Hi Cecilia!
What are you taking right now? If you list what you are currently doing (for the PsA and the P), we all might have some suggestions for you.
I've also had PsA since age 10 (I'm 41 now). It's a very long marathon. Today is a bad day, I needed a long hug from my husband this morning to remind me why I keep going. I'm juggling 2 children as well. I understand those days when the pain gets overwhelming.
I can relate to your story so much. I was young when I was diagnoses as well and now am trying day by day to be a wife, mother, and work in the professional world. One of the things that really helped me was taking hot baths with Epson Salt. It does something to the achy joints. Also, get those icy hot heat packs is a life saver. Have you tried any medications recently? I just got off Humira (the commercial warnings are true!!!!!!) and am dealing with symptoms emerging.
OMG, I am sorry about what you are going through. When I had a huge flare-up last fall, I had my son pick up the slack and do stuff around the house. (I am a divorced mom, no DH to help out), I couldn't vacuum, wash floors, open freaking cans, pick up dishes. I moved to paper plates, and frozen food dinners .... didn't cook for 6 months. It is under control now, mostly, but when my joints hurt, I roll back my activity.
Can your family do the cooking and kitchen work? That was really the bulk of it. Are they doing their own laundry?
Indeed. I am the gel pack Queen. The cold feels really good - it takes the swellings down. During this past winter there were times that I had ice gel packs on my hands, wrists, shoulders and neck. I would crawl into my recliner, find a good movie, or a bad movie, just SOMETHING, take a pain pill, pull up my afghan and put the gel pacs on. It helped. Thank God for cable.
Alice60058 said:
I can relate to your story so much. I was young when I was diagnoses as well and now am trying day by day to be a wife, mother, and work in the professional world. One of the things that really helped me was taking hot baths with Epson Salt. It does something to the achy joints. Also, get those icy hot heat packs is a life saver. Have you tried any medications recently? I just got off Humira (the commercial warnings are true!!!!!!) and am dealing with symptoms emerging.
What are you currently taking to treat your PsA? It could be time for a med change.
For me, finding a balance between rest and movement, doing what I can to keep inflammation down (if it's not injury-related inflammation, heat is actually better for inflammation than cold, which can actually make things worse), and get acupuncture treatments and massage. I recently found a community acupuncture practice and love it - and better yet can afford $30 a treatment!
I avoided medications for a LOOOONG time, but now the only way I can function and be an effective parent is through taking Remicade.
You did not mention how old the children are but even small children can help. Hubby might have to do a bit more? Do you have any friends or relatives that will help out or give you a break. There is actually so many things that can be left until another day. There are so many time savers when you start to think about everything you do. . Whether it be an appliance or a better way of doing something that takes less energy and time. I always find it better to pace myself and take rests often and this helps me cope. It is the practices that I put into place in my life that helps me achieve this. These are just a few of the things I do which might help you.
I cook double amounts of meals that will freeze so there is something ready and easy on a bad day.
I buy gadgets and appliances that help me. One was a $15 electric chopper for onions.
I prepare extra vegetables and put them into bags and containers. Ideal for a stir fry. I will sit down to peel vegetables.
I have baskets and boxes in corners and put things in them that need to go to other rooms and only take it when I go that way.
I look around the room before I leave and pick up and take things with me and put away as I go.
I do some cleaning whilst in the shower or just afterwards, I wipe out the bath while the water is draining.
I do things in the kitchen while I wait for the kettle to boil for a cuppa
I proritize and leave things for a day when I feel better. You can choose to leave so much.
I shop on line, I pay bills on line
I find things to do whilst sitting down like mending or sorting out paperwork.
Hope this helps you.
Also, I pay my kids for occasional "big" jobs. I have a lot of trouble with my hands. An example was when I was planting my tomato seeds inside, I make my own pots out of newspaper. My 6yr old was able to help me with this, and I paid him a dollar. My 10 yr old helped me out the other day and saved me a lot of extra walking and carrying when I was cleaning out the garden, by moving the wheelbarrow around. Again, a dollar.
I will likely be using small people this summer to help me out with weeding and picking. Probably unpaid labor, they eat half the "profits" anyway.
I do this too. Anything above and beyond normal household chores gets a dollar (or two, in the case of my 15yo mowing the backyard). I used to LOVE to mow the lawn and can't do it for the past 2 years :(
Stoney said:
Also, I pay my kids for occasional "big" jobs. I have a lot of trouble with my hands. An example was when I was planting my tomato seeds inside, I make my own pots out of newspaper. My 6yr old was able to help me with this, and I paid him a dollar. My 10 yr old helped me out the other day and saved me a lot of extra walking and carrying when I was cleaning out the garden, by moving the wheelbarrow around. Again, a dollar.
I will likely be using small people this summer to help me out with weeding and picking. Probably unpaid labor, they eat half the "profits" anyway.