Relax: Survival Mode and Our Intrinsic Value
The past few weeks have been full of chaos and minor crises. Not enough to stress me out, but enough to keep my days overfull with no strength left at the end to write – only sleep. I read last month of a study of mothers of more than three children1, that they are less stressed, like I’ve always said. Really we have no choice: we relax if we want to survive!
And, I had chance to test that with a chronic disease and four kids still at home…
I usually have time to write about ten percent of the articles I want to, and I’m working on two books. If I could multiply myself, one of me would write all the time. I used to think that I write now because I’m not able to do other things. But, the reality is, I also write only when I’m able to.
The truth is, sometimes I can’t even write. It’s been a tough lessen to learn, but whether others accept it or not, IT’S OKAY. You can be a worthwhile person, not officially accomplishing anything. Of course I knew my children were treasured even they were helpless babies, or anytime they were sick. And I always enjoyed watching them play. But when applied to myself, it’s harder to acknowledge that it’s okay if I can’t always be “productive.”
Sometimes survival mode is needed with Rheumatoid Disease
It’s been hectic lately, but the Rheumatoid Disease (RD) was the same as always (unrelenting), so I stayed in survival mode. I don’t know about you, but for me survival mode is like being stuck in a big traffic jam: you just do your best to not run out of gas. Each day, you just get through it. And then sleep.
Here’s a peek:
* The day I published my last blog post, celebrating the start of RAW’s 5th year, and outlining why I built RA Warrior, my site was suspended by the hosting company. Without warning, RAW just went dead. Their explanation was that the site uses a lot of resources, partly due to how large and busy it is, and partly because it was being targeted by spam comments. We often get 1,000 spam comments per day, but then, we were getting 10,000. (Of course I have a plug-in (like an app) to help catch them, and I can dump them. But they take up space as they come in.) I spent a few days fighting the spam, and did reduce it, but the host also told us RAW is being “targeted,” whatever that means.
* My amazing tech partner Katie Beth helped me move my huge website to a new host. It’s easier and harder than it sounds. But after a few days, we worked out the bugs. (Scratch that – I just learned The Spear is broken. Maybe we need to update with info from the new server.)
* A water pipe burst in my kitchen. Then the repair caused another break. Then we got that fixed and the water filter in the fridge leaked, filling the fridge with water. It was exhausting, but the whole family pulled together. The house was a wreck and we ordered dinner out.
* Tiger’s hearing aid quit. He has a warrantee replacement now, but these things take time. And meanwhile make it harder to communicate.
* Bear bought his first car after starting his first job. All good news, but parent input was required at bank and DMV or shopping for work clothes.
* Roo had lots of tests and started vision therapy. His eyes are improving. New glasses. Then a new prescription change. Lots of appointments. And mom doing his exercises with him at home every day. Maybe I can tell you more about that soon.
* Tiger’s phone (mine by contract) was stolen in a bullying incident. It was eventually recovered, but it took some of time and effort of the family to deal with the theft.
* Roo failed a hearing test. He went on medication for inflammation in the ears and will see another specialist soon. We don’t know if it’s at all related to the same issue that caused deafness in a brother and sister.
* While we tried to do laundry and pack for Phoenix, the septic tank backed up several times into my master bathroom, filling the shower and tub. Finally we got it fixed.
* Tiger’s been treated twice for bronchitis, but the cough is still hanging on. The rest of us had some nasty cruddy virus too.
There’s more, but who would still be reading at this point besides my mom?
Even if you don’t stress out, each thing takes time from the day. With RD, at the end of the day, sometimes you can just sleep. Not type.
I spent DAYS trying to get my thyroid medicines straightened out. Seems like such a waste of time. I’m more than willing to give up those meds after 30 years. But I have been near deathly ill twice because I didn’t take them, so I keep “wasting” time trying to get the new pharmacy “provider” to talk nice to the insurance and the doctor’s office.
Strangely, being in survival mode, and accomplishing what appears to be exactly nothing for the past month, I can see how a mom is still needed, and loved. Even when she can’t play tennis or plant a garden, she might hold invisible threads together, and help provide peace. Yesterday, my neck was too bad to drive, but Bear was my chauffeur so I could go order Roo’s new lenses, after our vision therapy appointment… then we found Bear the sweetest new running shoes and they are actually blue suede.
I hope you’ll relax and be gentle with yourself. I’m certain you’re worth it, whatever you haven’t accomplished lately. Or you whatever have.
1 Dube R. Mom survey says: three is the most stressful number of kids. Today.com; 2013 May 6 [cited 2013 Jun 11]. Available from: http://www.today.com/moms/mom-survey-says-three-most-stressful-number-kids-6C9774150
Recommended reading
- Happy Birthday RAW! The Day I Could No Longer Stay Silent
- Mondini Syndrome Is Just Deafness Like RA Is Just Arthritis. Not.
- Brain Fog: Testing Cognitive Dysfunction with Rheumatoid Arthritis / Disease
You are a good Mom and you are awesome! Put your feet up for at least ten minutes and pat yourself on the back. You deserve it. Moms sometimes forget how vital we are to the family.
Thank you so much for writing this blog. My prayers are with you for continued strength and purpose. My daughter tests negative for RA but is diagnosed with Undifferentiated Arthritis. It affects her hands each morning and sometimes her elbows…sometimes her knees. She is using Plaquenil – 200mg – 2x each day. Your service to those affected is greatly appreciated. I pray daily for my daughter to be healed and I have great faith that she will. Keep fighting the good fight!
Wow Kelly, you guys have really been taking the hits! I will spend some time in prayer for you today. That you would not only survive but THRIVE and not just exist but prosper. Hang in there….and we understand if you are out of strength or time and cannot write. Take care of you and those kiddos first. That’s most important.
Blessings
All I have to say is WOW. That you could describe a week or month like that as not accomplishing anything means you usually accomplish what ten of me would be able to in any given timeframe. It sounds to me like you accomplished everything your family members needed of you (which was a LOT, much of it unexpected and stressful) and everything you normally do to care for everyone and yourself, plus managed crises in your home and on the website, and failed to accomplish only the thing you usually do for yourself (as well as for the 20,000ish of us who so appreciate your site and everything you write). You’re a superhero. You need a cape so you won’t forget it. 🙂
That’s so kind Lisa. I feel like all I did was survive lately. I hate playing defense. But I can see God is working on me. 🙂
Like I always tell my kids – somethings in life just are what they are, you have to still love your life because it’s the only one you have.
Stuff like this, there is nothing to show for afterwards – not even a clean room. But I’m learning to see its value anyway.
Kelly, you are amazing in all that you accomplish even when you feel like you don’t get anything done. I am trying to cope with a teenage daughter who tells me I could be better if I just “tried.” I tend to get defensive, but really what I probably need to do is listen and just be there for her. That’s what you do for us. You are there even when we haven’t heard from you in awhile. Thank you for your comforting voice, understanding and advocacy.
Dear Samantha, I have family members who do that too and I agree it’s tough. It must be hard when it’s your daughter.
It’s possible she needs this time of “denial” while she faces what’s happening with her mom.
All you can do is your best. I hope some day she will come here and read what many others go through, and realize you are probably tougher than she realizes.
Kelly,
Sounds like a big warning! Telling you to slow it up a bit, god bless you and the things you do for others- you should have done on you! How does a nice whirlpool sound, followed by a facial and massage, softly of course to say ahhhhhhh!
God bless you, Kelly! Sounds like you all have been through the ringer lately. Praying it gets better! Never forget how much of a difference YOU make in all of our lives! Love and Hugs to you from Mississippi!
Carole
By the way, LOVE the running shoes. Coolest but suede shoes ever–that alone makes you a cool mom in addition to everything else, which is a huge accomplishment in my books!
That was meant to read blue, not but.
Whew!! Now I need a nap!
rawarrior Kelly this couldn’t have been timed better having taken today off work as emergency #RAD recovery day! Has been a very emotional
I noticed that you had your head down and was hoping all was well. Amazing you can deal with all that and still write such a sane and helpful post. And that’s on top of the RA.
And as a cherry on the sundae you experience the drawbacks of having a very busy and popular site. I bet you did not expect this much growth when you started.
rawarrior my own battle with wanting to do “stuff” with day off and instead just realising I need to just REST and await my biologic! Hugs
Survival mode is often the ONLY way to make it! Often on those hard days, I tell myself that I just need to “make it through the next hour,” or “just make it until bedtime.” That’s the only way I can survive the day sometimes. What are just bumps in the road for the rest of the world are mountains to those of us with RD. Survive we must!
Hi Kelly,
Such a rough couple of months. I do not envy your struggle. I am glad to hear how close your family is and how you pull together to get through the hard times. I pray that the health issues subside a little so you all can breathe for a while. 🙂
I was diagnosed 4 years ago with RA. Terrible first two years but then I started to “get better” on Remicade and MTX. Stopped taking MTX to try and get pregnant. After a year Remicade began to not work and I was changed to Enbrel (all this time and still I’m on Prednisone and Plaquinal). I was doing well but suffered from extreme fatigue. Some water physical therapy helped but wasn’t complete. After a lot of thought I decided to give up gluten. I figured I didn’t have anything to lose. After 6 weeks I of course have not lost any weight, but more importantly, I have more energy!! And I recover faster if I do get tired. An acquaintance suggested a book “The Immune Recovery Plan” by Dr. Susan Blum. I had already given up gluten when I began the book so I was already feeling better. But this is the first book that actually says you can do something to feel better. I am skeptical of anything that says there is a cure, but to actually feel better…I’m going to do what she recommends and see how I feel. She doesn’t claim to cure only to improve your health by diet, stress control, healing the gut, and supporting the liver. I know you’re super busy, but this book could help. It could help everyone.
Peace to you, your family, and all of your RAW followers!
Lisa
Phewwww…amazing what we can get through when its thrown at us….Hang in there!!..We have been having a similar time…when one thing goes adrift it all does grrrrr!!
BUT….you still do a fabulous job….thank you Kelly…x
Hang in there, RA warrior! We need you. I am newly diagnosed with AS and not RA. However, I’m being treated as if I have RA. Treatment is MTX and it seems to be working. I read your blog quite frequently and it’s given me hope and courage. My blood aunt had RA and my mother had AS, so here I am. And I agree totally with the idea of taking it easy when you have to. My doctor told me the same thing. When I first started feeling better, I went through the house cleaning, all the things I couldn’t do before bc of the pain and the fatigue. Then I ‘ran out of gas.’ So by listening to my doctor and reading your blog, I’ve understood the importance of doing what you can, what you’re comfortable doing and letting the rest go. Easier for me, I guess, because my son is a grown man with a family of his own and I don’t have kids to deal with. Still, living alone is problematic as well. Anyway, keep doing what you’re doing re the blog. Those of us who are dealing with ‘strength-sapping’ rheumatic diseases understand completely. Best wishes, Barb B.
I love RA Warrior…it helps me more than words can say…I would be LOST…and feel so very ALONE…:(…YOU are an “Inspiration”!
Thank-you from the bottom of my heart…:)…
After reading that I am counting my blessings.
Oh Kelly!!
Your timing on this was perfect as I am not nearly as far with the RPF volunteer calls as I wanted to be by now. But in the meantime, I fixed one broken fridge (of course figuring out it wasn’t working until AFTER much of the food was warm and it was 7 p.m.), got one daughter graduated, hosted the grad party, finished out a school year (add two more grad ceremonies), and a whole host of daily mishaps along the way all while praying that my latest med hasn’t quit working (jury still out on that one) and just trying to survive wanting way more sleep than I’m getting.
You are absolutely right, we need to love ourselves and honor that we are doing the best we can every day.
Hang in there, as David keeps telling me, the best is yet to come!
Kelly, what you’ve been through recently just proves what a valuable person you are! you kids are very lucky to have such a great mum. I hope things calm down for you now, take care of yourself. You give us all inspiration to keep going when the going gets tough!
Oh Kelly, I swear you are living in my head sometimes. I know there are countless others who feel the same.
“Survival mode is doing what you have to until you just sleep.” Yep. I usually fall asleep in my driveway for 1/2 hour when I get home from work. It’s….interesting.
And we are enough, and have intrinsic value. It’s hard to believe that some days. I have that particular gremlin, too. But we are.
We are warriors, and that is MORE than enough.
hugs,
Jennifer
Wow Kelly, I’m so sorry that happened all at once for you. It is hard enough to do the daily “normal” when you suffer from RA and all that can entail. I hope the rest of your week goes better. Thanks for being here for all of us.
Wow,I don’t know what I would do without this website, you and everyone has always given me strength. Thank you all for your continued inspiration.
Jill
“Be still and know that I am God” Psalm 46:10
This was my verse of the day on my email, which fit for me and now I know fits for you as well. God is already in tomorrow, and He has it all under control. So be still, rest in His love. Prayin’ life gets better for you all!
THANK YOU KELLY! Breathing show and deep on that thought tonite as I rest.
I love that verse. It helps to keep me going when things are really tough 🙂
Can you tell us how you get the verses in your e-mail everyday?
Thank You
Bob
Survival mode is difficult enough, but when that life is lived transparent before so many others – all we can do is say thank you and pray for you. Your stories give hope that we are not alone. Thank you for the time and devotion you give each day to teaching, sharing and connecting the medical world to RA patients – and all that while taking care of your family.
So many people are concerned for you and your well-being – I hope you feel that.
I don’t always Donna. Thank you for that. It means a lot.
Nicely said, Donna. Your words fit my feelings of appreciation for Kelly to a T !!
Well, you have my vote for Mom of the Year!
Oh rats! When I saw that you had no new posts I was hoping you were on vacation! This.is.not.vacation. When it rains it really does pour! Glad to hear that you have survived and survived with style (love the shoes!). And yes you are right, even when we feel useless, there is a lot that we contribute to our families and that is important to remember when we are feeling down and having a hard time. I have been on the phone with my daughter night after night. She is having a flare after having a baby – really her first flare. It’s awful. Not only does she not yet have the treatment she needs – you know how slow this can be – try this for three months – arrgh! But she feels useless – her teenage daughter is taking care of the baby.
Dear Leslie, I’m in the car, but I want to reply however quickly-
I’m so glad you’re daughter has u. My teenagers took care of Roo a lot .I couldn’t ever put on socks and often couldn’t pick him up. You’re right it’s heartbreaking & just hard. I hope she finds relief quickly. Does she have a doc? I don’t remember if you told me before.
I would like to second what Donna said. So many people are concerned for you and your well-being. We all are in different stages of dealing with RD and yet we all have something in common; Wake up each morning and keep going to live the new normal and keep pushing. Your body will endure pain and defeat but your soul will always prevail! Your soul is the foundation of your well being which gets you up in the morning.
Hi Kelly.
Survival Mode… Interesting. I used to think that I did not allow RA to slow me down. Denial? Probably. But you see, Survival Mode can be sneaky. I slide into it without realizing it sometimes. Suddenly, a few days (week? two?) go by and all I have done is hang in there by the skin of my teeth… And then I realize, I have been in Survival Mode and my wife and kids smoothly take over for me all the things that I used to do for them… In a way it is depressing to know that I am not Superman anymore and I don’t take care of everything for my loved ones… But in another way, I realize how blessed I am to have such an amazing support team. I am Loved. I am Blessed… Thank you, RA Warrior. Thank you, Kelly. For all you do. You truly are an inspiration… Be well…
Dear Kelly – you always manage to write the perfect post just when I need it most- and reassure me that I am not alone with this miserable disease. I just wish my mom understood and would stop making me feel guilty for not doing things for her- I need to come up with a new line for ” I can’t”
sending out big hug – love you for all you give all of us!
Are you positive this isn’t the pilot for a situation comedy? This level of chaos needs Lucille Ball to deal with it. Everything from digital drama to raw sewage- what a month! Hope the kids are all OK, and that your household has had its share for now, at least, of water-filled fridges and missing phones.
Kelly,
I am so glad you made it through that crazy month! Keep up the good work, this site is a real treasure.
I needed to hear this Im in so much pain everyday and feel bad because im in a chair most of the time I hate it. But now I know Im not worthless.
You are definitely not worthless or alone Anne. I’m sorry you struggle with feeling that way. It seems like many of us do.
Kelly, this is exactly what I needed today. I have been struggling with the idea that I only have value if I have a job. Since I had to quit my job a year ago to deal with RA, it is hard to believe I have any purpose (even though I am married and have a college-age son). People in nursing homes have visitors and activities and are given respect for the lives they have lived. But, if you are hit with a disease mid-life, it is hard to keep your self-respect and accomplish anything except to get by day to day. I think if people realized how much pain and strategy we use to accomplish what others think of as mundane work, they might respect us a little more.
Hi Kelly and all,
Welcome back. You are truly inspiring.As i write this i have parked my vacuum cleaner half way through as i ran out of oomph.I am in Australia and you seem to be the only site that has it all.. If i am having a bad day i look you up read a few stories, enjoy the humour and feel heaps better, my soul revived.Thank you heaps.
I call them my lost days. I know now that they are necessary too.
I have a very hard time dealing with not having the energy or just hurting to much to do anything more than sit and watch TV a lot of the time. Until this RA thing took over full force two years ago I was almost incapable of sitting still, now I can sit down and do nothing more than watch TV without any difficulty. I feel guilty and overhelmed with all of the things I want to do but often don’t have the energy to do. When I feel good I will go until I am physically unable to keep moving. I feel good for doing things I enjoy but then I am usually wiped out for a few days to a week as payment. I will say that when I am physically miserable it is easy to feel depressed and have a self-pity party until I feel sort of better and can do it again. Thankfully I have a desk job but at times that is to much work and all I can think of is going to sleep in my warm, comfy bed. I am afraid that I will end up on disability because I have too. My second biologic is starting to fail me and I should call my doc but I have to much going on this summer to stop taking my biologic for a month and hope that the next one does something in a timely manner. The Humira is still helping but either my RA is getting worse or the Humira isn’t doing as much as it used to as I feel bad even with all of my meds and taking it easy. I’m having one of those self-pity parties right now and just want this mess to go away.
Dear Mr. C.,
Thank you for this comment. I know your so-called pity party will pass and you will keep fighting as hard as you can. Meanwhile you have put into words what so many people experience. From what I hear, most of us struggle with guilt feelings – as if we have any culpability for this disease & what it does to us.
And the problem you describe (consequences of activity) is one I’ve written about a lot because I found it was one of the core realities of the disease not mentioned in descriptions of the disease, but frequently mentioned by patients. A few years ago, when I found nothing written on it, I called it “the usage principle.” It’s the reason for the pay to play & that your mind adjusts to tell you it’s ok to watch TV – because there is a price to activity. Pile on some fatigue, and it is extremely hard to keep pushing yourself – but somehow we do, as much as we can anyway. For me, that’s to make Roo’s birthday cake today, etc. I feel like a train ran over me & all I want to do is sleep…
(You’ve probably seen it, but for anyone who hasn’t it’s here https://www.rawarrior.com/what-is-it-like-to-have-rheumatoid-arthritis-part-1-the-usage-principle/
and here https://www.rawarrior.com/what-is-it-like-to-have-rheumatoid-arthritis-part-2-why-dont-they-tell-you/).
Thank you Kelly for all that you have done with this site and for all of us. I can’t imagine having no relief from the RA, raising four children plus everything you do with this blog and for RA suffers.
My wife is always telling me not to push myself because she knows what will happen as well as I do. It has taken her a long time to accept that this is the case and she still has a hard time with it, as do I. I have found if I keep pushing myself I can keep going for a while but once I stop I am completely done for the day as I stiffen up and can hardly walk or do anything at that point.
My son is old enough to understand as much as a young child can but still misses his old, fun Daddy. I know that I shouldn’t feel guilty, it isn’t my fault but I am human and can’t help but feeling bad for myself and my family for what I can’t do for them or myself anymore. It is so hard to function with constant pain, exhaustion and knowing that both are affecting my memory, which I have always depended upon without question for my job. If I knew this was as bad as I would get I could deal with it but I doubt that is the case and that is what scares me.
very well said.
Thank you for this lovely article. I guess I often feel like I am not accomplishing much but in hindsight I really am. You have chaned my life. Thank you
I am glad you found it Kandis. I re-read it myself after you said that.
Has anyone tried Moringa? It is a whole food herbal complex. I don’t have RA, but I do have AS and it’s treated the same way as RA. Right now, I’m on Methotrexate once a week. I tried this stuff and it helps with the pain and fatigue. Certainly no cure, but I feel a bit better. I now give it to my arthritic dog. Has anyone else tried it?
I thought that I was just getting old age 59.
My R.A. stared two years ago.
I don’t get anything done in the mornings.
By the time I feel like doing anything it’s almost too late in the day.
Now I know it’s just not me.
Thank You
Kelly,what a time you have had! I can relate today. All I did was renew my driver’s license (it only took less than a half hour)then, I went to buy a new ink cartridge, came home and ate my lunch then went to bed. I fell asleep under my heated blanket with the AC on. I wanted to work on my art work, but instead watched “Castle” re-runs.Tomorrow is another day, right? Take care lady!
I found rawarrior in 2013. Recently diagnosed with RA at that time…and having worked in medicine for many years…I did research about it until I couldn’t anymore. After a while I stopped visiting rawarrior and other sites about RA…I had enough. I guess I hadn’t read your journey Kelly but I did this morning. I am humbled at the severity and non issues you encountered and still do. You are truly an inspiration to others, like myself, who have it but not nearly as severe and problematic as you. Thank you for all you do and who you are Kelly…
Susan
what a kind and thoughtful comment. thank you for taking the time.