Don't let it BE your life. What I mean by that is: You have an autoimmune disease. You are often if not always experiencing some level of pain. IF you focus on this fact more than the rest of the facets of your life then it will become who you are, and will dominate your discussions, your activities, your purpose. Focus on enhancing your life, on enriching the lives of others around you. Be as active as you possibly can, be somebody else's shoulder. I work in the medical field and see people applying for disability who are more than capable, who live to go from one medical appointment to the next, and though I am NOT minimizing their pain, I recognize that it can be a cop-out, or it can be a building block.
I just encourage each of you to see the positive, to focus on the things you CAN do, to build yourself and someone else up, and even though it often SUCKS, to be thankful for what you have .
Thank you for the positive words...I know there are much worse things to have. I DO have pain everyday. It's affected my tendons. I am on Humira & it had taken a lot of my inflammation away but the past 2 months it's coming back. Index finger very swollen & hurts to bend. On one finger I had a bad blister and it's taking a long time to heal.
I try & try not to focus on the bad stuff...Haven't lost anymore toe nails and I can actually go for a pedicure again.
Each day I take my medications and hope and pray I can take this disease to the attention of an Immune Systen Dr...from so much I've read about PsA I'm convenced that the same medication they give AID's pt's would help PsA!!! I'M GOING TO WRITE & WRITE & RE-WRITE until someone listens!!! I have a family member that's been on medication for AIDS and he is MUICH healthier than I am!!! There's GOT to be something to this!!!
Sophia--Thank you!! When I am really down I will have to look back and reread this post--. It is too easy to become bitter because of the pain. It is much more fruitful for yourself and others to just let go and discover things you can be thankful for.
Thanks for this post. I read it as I was lying on the lounge feeling tired this morning. The day in Sydney is overcast, slight rain, cool at 18C and a southerly wind blowing. I didn't feel like going out. When I read this I got motivated to go for my walk . I put the dog in the car and drove the 10 minutes to the beach because I knew that once I was there I would enjoy the walk.
Now I have returned, I feel much better and have some energy left to get a few chores done this afternoon.
One thing is we can come here, to our support group, and rant and complain or just talk about our PsA problems. It's so nice because people who don't have PsA don't fully understand how we are feeling....it's hard to really grasp what one is going through unless you've walked in their shoes, or at least done a lot of research on this disease. So, yes, maybe it seems like some of us complain a lot (me) but I don't complain at home. Lately, I've been talking to my daughters and mom and sister more about how horrible I felt before Enbrel and how I don't want to go back to being that sick ever again. They seem to understand, because I think--I know--they can see that I am a lot better now.
But, all this discussion on here they are totally unaware of.....I've mentioned there are people here from all over the world and we discuss our PsA and share our experiences, but this is a little part of my life that's separate from the rest of who I am and what I'm doing most of the time! You are all a little part of my life that I cherish and feel close to--even though most of us are worlds apart!
I have found the words I choose to use make a huge difference for me. Instead of "what's today's problem" I say "what's today's adventure". It may sound silly, even ridiculous to some but I have found it much easier to face each new day and symptom this way. There were many other words I have switched too. Some days it is harder to find something that fits but at the end of even the most trying days, it helps me take control of me instead if the PsA ruling over me
I would like to echo what Sophia said in the above post. I agree that most of us are in some sort of pain on a pretty continual basis, with some days being better than others. I have found, with my family and closest friends, they are always asking how I am feeling. Although I appreciate their concern, I am more than my pain, more than this psoriatic arthritis. So, I cut a deal with them and said I would let them know when I wasn't feeling well, or when I just needed some rest, or when I might need longer to do certain tasks.
What has resulted is that our conversations take other twists and turns and don't always focus on the medical stuff. I like that. I am more than my pain, more than this psoriatic arthritis.
Nice comments, Robyn and Mari--I also have been using the word "adventure" a lot--especially when my kids (or I) complain of something we are hesitant to take on and would rather take an easier path. I say "just think of it as an adventure" and it helps a person see it from a whole different point-of-view. It's a great positive attitude to have! (I sort of told myself that in order to get on Enbrel.)
As far as people around me asking if I feel okay--I think my husband and kids just expect me to be the same person I always was. I'm the one always worried about how they feel--especially my kids and grandkids. They don't ask, I think because I keep going as if nothing is wrong. When my back went out, the kids all helped, but just as soon as I was over the worst of that, their help stopped. That's okay--they all have very busy lives and, as long as I know they'll be there when I need them the most, it's fine.
I can bring my worries and complaints here....whether or not people read them....that's okay--at least I can get them off my chest!
Haha I have a good one....my husband's been talking about going on a drive to San Antonio this winter. He's not too big on travelling, so I'm jumping at the chance! So, I -"invited" - the kids and they all want to go, too, except our son. To me, that's a great idea--a family trip to Texas!!!! We'd drive--it's an 18 hour drive. I think it'd be a blast with 6 other adults and 5 little kids! We'd of course all have our own vehicles and hotel rooms.
Well, 'Grandpa J' said to that "count me out". I'm like, come on, "just think of it as an adventure"!!!
God, I wish he could just enjoy things rather than always turn them into something not fun. I even told him, that way, I wouldn't be texting and talking on my cell phone to them during the whole trip!
Grandma J, that's how I feel too. Sometimes just having a place to say it makes a huge difference.
When all the trouble with my tooth started I called my mom and daughter at 4:30 in the morning. They were here before 5. It's good to know when they are really needed the Calvary will come.
My daughters in the same boat so she totally gets it. We just work together, each doing what is the least difficult. The others, not so much but we just keep plugging along
Oh, sad your daughter has PsA too! I also have to be careful what I talk to my kids about--they get worried and anxious, especially one daughter who really has anxiety problems. She, though, is the one to most likely come running when I'm needing help.