It’s amazing when a therapy works–when all the meds line up perfectly and a rheumatoid arthritis patient can feel almost fabulous, full of energy, and productive. Maybe not exactly like before the onset of rheumatoid arthritis, but a new form of normal–a place where RA doesn’t seem to be as limiting. It’s such a relief feeling semi-normal at a lower pain level and improved activity rate.
It’s easy to get caught up in the so-called normalcy and maybe even take it for granted. Being able to go to work plus clean house and do grocery shopping is wonderful. Getting ready for the day, having the energy to wear make-up, and even wearing tighter-fitting clothes (finally able to zip, button, pull, and clip) are added treats. They are the everyday things that aren’t possible to do when flaring. Smiles are brighter, laughter comes easier, and making plans for the future become broader with more possibility. It’s amazing riding that cloud of hope and finally having an ‘I-got-this’ feeling that has been elusive since diagnosis.
Then, out of the blue, the swelling starts in the middle of the night. The unique pain stabs and throbs. It gets worse and worse until the morning, when getting out of bed is a slow, stiff process with incremental movements bringing on excruciating pain.
It’s not the pain that is devastating at that point. People with RA are used to pain, they build a certain tolerance, they find a way to cope with hurting all the time. It’s the emotional disappointment that is crushing. Another flare. Another medication not working. Another round of prednisone that is going to bring about overeating, a grumpy-bear demeanor, and a sense of hopelessness and despair. Another two to three months before finding out if the next round of yet another new treatment is going to hold the disease at bay. Another set of icky side effects to endure.
It’s crushing to go back to extreme fatigue, not being able to complete daily chores, dragging through work trying to concentrate through a haze of hurting. Back to having the energy for only resting and being completely unproductive. All those steps back when normal was just within reach.
The hard part is finding a positive thought or goal to hold onto, because only positivity can bring a patient out of the bitter disappointment. Finding something hopeful saves a person from going into depression and making the disease worse.
Experiencing this roller coaster isn’t for the faint of heart, but I’ve found that concentrating on a goal–something that makes me happy inside my heart–has to remain my focus in those dark times. Holding on to the hope that the next treatment will be the one. I have to will myself to be positive, and most of the time I succeed. When I don’t find that silver lining, the realization hits that I have to be the one in control of my mindset. The body is going to do what it wants, there is no control over that, but, damn it, I can and will control what I’m going to let it do to my mind. I refuse to let it rule me and determine my future. Mind over matter, at least for me personally, is what is going to save me–that, and a lot of prayer.
It’s the only control I have.
What is RA? A general explanation can be found here.
Yes, it’s painful. You described it well, Dearie
I seem to have it starting in my feet and both knees, but it’s only a problem when the weather is cold/snow. Meanwhile my wife has OA in very advanced stages (feet, knees, hips, tailbone/coccyx, shoulders, elbows, hands and knuckles). Every day is battle, and I do what I can to allow her as much independence as she muster, but by the end of the day, she’s tuckered out.
Thank you for writing!
Sir Leprechaunrabbit
@leprchaunrabbit
yourrootsareshowingdearie.wordpress.com
Bless her heart, I cannot imagine the pain she is in. Thank you so much for reading and sharing your experiences, too. I appreciate it so much!
Your description helps me to understand how painful this disease can be. Good luck to you. I admire your strength and determination.
You are SO right about the emotional disappointment being the biggest issue when I have a flare (or repeated flares). I’m coming off a 3 year period of nothing working and waiting to get approval for trying the “last ditch effort” drug. I was hopeful every time I tried something new and then, learned to not hope. It was too devastating when I didn’t feel better. But, what I have learned is to be more of a scientist about starting this new drug. I’m taking data like a fiend – I’ll have beautiful graphs by the end of the month! Thanks again, for writing about something that I don’t believe anyone really takes notice of.
I’d love to see your research. I’m only on my second biologic and still hold out hope that it (in conjunction with the dreaded methotrexate) will help. One day at a time. I hope you find relief soon. Thank you for stopping by and commenting!
Me too – on my second biologic and the somewhat unhelpful methotrexate.
I would also like to see your research!
Wow – I am suddenly so grateful for my health. Wishing you great strength and positivity.
It’s true, you have to have something to make you happy and keep you moving. It’s also true that you can’t control anything but your attitude. Hang in there!
I can identify to a certain degree. I have three discs in my back that were ruptured in a sledding accident 34 years ago. Therapy has helped over the years. So have steroid shots in my back. But I totally get the fact that you develop a certain pain tolerance. Fortunately I haven’t struggled with it to the point that it affects my moods a lot. I just keep going and ignore it as much as possible. I know RA is so much worse because I watched my dad go through it. You have a great attitude!
I understand the keeping on and ignoring it. I have a bucket list, and I want to check off all the items!
Sigh…I get ya….sigh😞 I am not fighting my elephants anymore because, yes, it is the crushed hope that does you in, not the pain and fatigue.
I hope you find relief soon, too!
Living with constant pain must be very wearing. Thinking of you, and glad that you have something to help in your daily life.
Thank you. We all have our battles–just have to find the right weapons for the fight!
You are such a wonderful writer. Just caught up on your posts. I had temp RA in my wrists as a teenager and am dreading anything flaring again, might be having first signs in my knees. You have such a wonderful approach to life and your pain. I hope some ease finds it’s way to you again. My dad swore codliver oil eased his and took it daily. Old wives tale perhaps but I must remember to take mine.
I think there is a lot to be said for the old wives’ tales–something that modern medicine should take more seriously. Thank your for the compliment and taking time to read. I appreciate it so much!
As always, your post came at a good time for me – thanks for sharing it.
RA is such a “personal” disease – every body reacts to it differently, and feels it at different intensities. And as you say, treatments are a mix-match approach as well as trial-and-error. I guess we all have to find our own way emotionally, too.
I am in a dip right now after feeling better for a few weeks, and the discouragement gremlins are nipping at my heels. I’m sorry that you or anyone else is dealing with this, but it helps me not feel so alone. I hope that even now you’re feeling some relief!
Heather
Heather, I’m so sorry that you are in a little dip right now. It’s hard when you’re not feeling well and just trying to get through the day. I’m grateful for the support of other people, like yourself, who also deal with this on a daily basis. You’re not alone! Hang in there. Dawn
“Finding something hopeful” Yes. I am feeling the pain from yesterday and the fatigue. I am not depressed this time because yesterday I had my very first book promotion and conversation with a group. It’s my hope for today that says “It was worth it standing up that long and pushing myself”. Saturday I had a day where I felt so normal and I stayed up late with friends on the patio with a warm fire a good conversation and laughter. I couldn’t move the next day but..so worth it.
Those wonderful moments far outweigh the bad! Congratulations on your book promotion. Hope you get some relief soon. Take care.
My mother lived with RA for many years, at a time when treatment options were still very limited. The changes to the quality of her life were devastating for her, and I think the disease did as much mental/emotional damage as physical. It wasn’t just her body that hurt all the time, her heart did too, especially with my none to patient or understanding father. I applaud your for your attitude. RA is a nasty disease to live with, but it does not define you, it is not you. You are still in there and you decide how much control over your life and thoughts you are willing to let it have. I am cheering for you all the way and praying that you will experience many good times of remission to give you renewed energy and hope!
Josie’s Journal
This was so sweet, it made me cry. I can remember my worst day and then think about your mom and the pain and misery she had to be in when there was limited treatment. I’m thankful that there are better treatments out there now. I just followed your site and am looking forward to reading your short stories. Thank you so much for reading and leaving your thoughts. I do appreciate it so much. Dawn
I totally relate to this post – it’s amazing how much a positive outlook can truly help – it’s also amazing how hard it can be to maintain haha!
Yes, the maintaining is the true challenge. Some days are easier than others. 🙂
Oh yes I completely agree 🙂
Perfectly said. We understand so well.
Oh, I so understand where you are coming from. I live with MS and Hashimoto’s disease so I can certainly relate to the emotional disappointment. I also find the fatigue the most debilitating thing to deal with because the mind wants to do things but the body does not want to cooperate. I, too, try to remain positive and re-learn how to do things. I also use humour to mask my pain which is why some of my posts are ridiculously crazy. Thanks for sharing and for helping to educate others about what it is like living with an invisible illness.
I absolutely love your posts and laugh out loud at each and every one of them. I am so sorry you have a double whammy with both MS and Hashimoto’s. I hope you know how much you bless others with that wicked funny sense of humor and a writing style that has the reader hanging on every word!
Awww thank you — you are very sweet for saying that AND you have made my day. Today I am beyond exhausted having had the flu all week so you have really helped pick my spirits up. Have a wonderful day! 🙂
I admire and applaud you for your strength of mind to try and stay positive when things are that hard. Reading this made me realise again how much I have to be grateful for but take for granted. Seemingly mundane everyday tasks and events that I don’t always feel like doing, but I have to be thankful that I’m able to do them. Having the option to choose to do something or not rather than simply not being able to is a luxury. I wish you all the best.
My wife lives with pain every day (Fibromyalgia). I have learned that her mood swings have nothing to do with me and are a direct result of the pain. She is deeply in alternative and natural medication, as pharmaceuticals have done her no good. As I age, I too have a lot of pain, especially when the weather changes, but, of course, not on a level with you or my wife. I can’t even imagine, I am such a baby (as most men are) when it comes to pain. I admire your attitude sis, and pray for painless days! HUGS