I gave up any expectation of ever having another day without pain a few years ago.
This doesn’t mean I gave up.
It was actually a liberating experience. It allowed me to stop wishing for things I can’t have, and start finding ways to make the best of what I still DO have.
Once I stopped waiting for the pain to go away, I started living again. Really living. Not the way I lived before Rheumatoid Arthritis, of course. I have physical limitations now. There are many things I will never be able to do again. But I appreciate every moment that I am upright and moving, and able to work and play.
I am mindful, and I am grateful. And I am happy.
It’s not possible to be happy while you are focusing on all the things you can no longer do. On all the things you have lost. On the people you no longer see. On all the cruel things people think its OK to say to you.
Letting all the negative thoughts go is hard work. It’s a process, and it takes time to get through. There are no time limits. Everyone is different, and everyone gets there in their own way, and in their own time.
The day that shift happened for me was the day I was able enjoy life again.
Don’t get me wrong, I still have my pity-party days. They are totally allowed. In fact they are essential. RA sux bigtime. Being in contstant pain sux bigtime. Ignorant, arrogant, insensitive people who say the most appalling things to me suck bigtime!
Sometimes I watch people moving around, knowing it doesn’t hurt them to do so, and I feel the most intense jealousy I have ever known.
I listen to them complain about their minor niggles, or a bad hair cut and I struggle to be supportive and NOT tell them to suck it up and be grateful that their whole body is not on fire.
Some days I just cry.
I have to get these emotions out, but believe me, it’s not easy to do. I don’t like to admit I can’t do something. I don’t like to admit I can’t cope. I don’t like to admit defeat.
I have a very good psychologist whom I see about once a month. To vent. To explain (endlessly) what it is like to be locked in a body that hurts every day, and how strong I need to be to live my life in a meaningful way.
How hard it is to take each breath and accept that it’s just going to have to hurt.
Because that is the only option.
The alternative is to spend my life on the couch, or in bed, waiting for the day the pain goes away. But what if that day never comes? What if the pain NEVER goes away? If I am depending on being pain-free, haven’t I then wasted my life?
When RA first hit and knocked me down hard. I waited for a few months. I believed in the promise of remission. I had to believe in that promise, I had to have that hope, in the beginning.
Now, seven years on, I have to believe in my ability to enjoy my life with pain.
Pain and happiness are NOT mutually exclusive.
My pain is in my body…in my joints, in my muscles, my tendons, my skin, my eyes…so many places.
My happiness is in my heart, my soul….myself.
Note: I take all my medications religiously. I am still searching for a combination of medications that will get me closer to pain free…and I still believe I could be pain free one day. BUT I don’t let the pain stop me from living a meaningful life. Each new medication gives me hope. Each new treatment option is a chance to get my old life back. And if I get that, I will feel like the luckiest woman alive. But if I don’t, my life will still be worthwhile and wonderful.
I have been fortunate in life. I am 70 yrs old and was just diagnoised with RA 6 yrs ago. I don’t know what it is to start young. Even so websites like yours are so welcome and helpful. Thank you
Hi Blythe, an RA diagnosis is no fun no matter what age…but I know what you mean. I think of the kids and teens and young adults in the prime of their lives…and I know I am luckier than some. (I’m 42 now) I hope you’re doing OK. Thanks for being part of the blog.
Thanks for the pep talk I really needed to read this today! Having a pity party morning.
Hope you’re doing better today Julie. Take care.
You are so right! As hard as it is most days, getting to the point of accepting the pain and making the most of each day is all you can do. You are a wise woman! My ordeal started at age 48 (3 yrs ago) I had a hysterectomy and it all went down hill from there. Very long story, so many subsequent surgeries, my body not healing( I have Sjogrens as well as RA) so my body literally fights itself! I am taking leflonumide now, it’s been 3 months. It’s helped about 10% …..my next appointment is in 2 weeks when we will discuss retuxen . That’s a scary drug, but nothing else has work thus far.
I am lucky that my children are thriving adults and are on their own! I am lucky for so many things. I just try and focus on that and take life a day at a time. Thanks for your words of wisdom!
Hi Elaine, your attitude is awesome. I’m currently on leflunomide as well. I’m seeing small improvements also…nothing to get too excited about! Good luck with the new drug. I hope that works better for you. Please let me know, I’m a bit like you, nothing has really worked yet, except the dreaded prednisone. Good luck!
I am right there with you. I am
THankful that I don’t have so many problems with my meds and that they are working. I have to admit that I wish they wouldn’t pile so much weight on. Now I have to overcome that obstical and for me it is a HUGE issue! I would like to get back to the point I was before, a little more comfortable in my own skin. I had lost 80 + lbs before RA turned my world upside down. Now when I look at myself I hardly recognize me. I don’t look the same, act the same or do many of the things I did before. It’s scarey being this person and I don’t like it. So I now need to figure out a way to be comfortable with myself. I am trying but good grief it’s a long road.
So true, Claudia. What meds are you on? I’m guessing prednisone is in the mix…I have put on about 10kg since I have been taking it. Its taken time for me also, but in the end I just have to accept that its very difficult to lose weight while on steroids. Good luck with it – it is a long road. I have faith that you will get there 🙂
Yes, I have received prednisone, while it does wonders for many things, it is not a friend to those of us that can pack it on. I had to finally ask to no longer have it in my arsenal of everyday meds. and it would have to be a dire emergency to be back on it. I know this is the cause of a great deal of my pain, but adding pounds makes no sense to me either, because it too causes pain. It’s like damned if you do and damned if you don’t. I have dealt with pain for so long it seems, that I know it will always be there. I am just hoping that by losing weight some of the pain can be relieved. I tell you having RA is like being in hell. I wonder if Dante had RA…could explain the nine circles of the inferno.
Girlfriend, I’m loving your writing. I’m sharing and venting to my family about yes!??!this is how I feel. She’s telling you for me. My words couldn’t do it, I started crying each time, I thank you,,, ❤❤❤❤❤❤
Thanks June. You made my day 🙂
It appears u really understand very much pertaining to this particular subject and it
exhibits thru this particular blog post, titled “Rheumatoid Arthritis
and pain – pain and happiness are not mutually exclusive |
Arthritic Chick”. I am grateful ,Edward
This article, “Rheumatoid Arthritis and pain – pain and happiness are not mutually exclusive | Arthritic Chick” illustrates the fact
that u fully understand everything that you are
writing about! I personally entirely agree with your
post. Thank you -Claudette
[…] the years, my goal changed, and it became to live well, to live happily, in spite of being in pain. I don’t always achieve that, but it is a philosophy that has served me well. Most of the […]
Thanks for writing this. It takes a great deal of self-training to get to the mindset that regards pain separately from the self. Lately, I’ve been having a hard time getting this across to my dad, who recently had shoulder surgery. He’s a strong guy but I become extremely irritated with the way he deals with pain. I know he can’t help it, but it’s hard for me to see someone not dealing with physical pain like I would – ESPECIALLY when it is temporary and will be worth it for them to deal with in the long run. He can’t use his right hand very much at the moment and so he avoids things that would require its use, which I find ridiculous lol. I wanna scream at him “Just find a way to do it with your LEFT, then!” He’s never had to train himself to be completely ambidextrous like myself and others with severe RA that I know. It’s hard to justify why he would even bring up his temporary pain with me even in the room! Agh! So again, thanks for writing this, at least I know I’m not heartless and my frustrations are normal <3 Sending good vibes your way 🙂
i absolutely love love love this post. I feel like I wrote it because I’m of the exact same mindset.
I just got diagnosed with RA. I been dealing with a bad back for 3years. I have a herniated disc in my mid back and in my neck. I had swollen feet ankles elbow and wrist that I just didn’t know what was causing it. Finally got blood work and my RA was high. 23. I couldn’t believe the news. I’m only 36 with a three year old boy. Living in pain scares me. I don’t know what to expect from this disease. But I know I haven’t worked in a while and feel I probably can’t . What happens next? I’m on methotrexate and steroids. I still feel horrible the swelling is down but not gone. 🙁
good information about arthritis.