Newly diagnosed? Wondering what to do?
Here are 5 must-do’s for those starting the journey.
Know your disease
Once the shock of first hearing the words “rheumatoid disease” is over, take a deep breath, cry a few tears, then make the decision to get educated. There are perhaps a million places to go to find a reference to rheumatoid stuff, but resolve to look at only trusted websites. There are so many opinion-driven sites, or really great personal-journey blogs, but those are probably not the best place to go for the science-tested medical information we need for our research. We need trustworthy information from which to set realistic expectations about how a chronic diagnosis may manifest itself specifically in us. Let’s face it, a blog from your cousin’s friend whose neighbor’s uncle’s cat died with rheumatoid disease probably isn’t a good source of education and realistic expectations for your own journey with this nasty diagnosis.
I list several trusted healthcare sites for getting educated about Rheumatoid and other illnesses, how it’s diagnosed, how it’s treated, what it may look like for you, and various other answers we Chronies would want to find. Resist the urge to look all over the internet at Heaven-only-knows whose website or blog for hours and hours until you spin yourself into a fix of fear and anxiety. Medical practitioners call this “cyber-chondria” and it’s a real problem. It gets in the way of treating the real issues by replacing “real” with “imaginary” symptoms. At the very least, it crowds the picture. Read, read, read. Talk to other people with Rheumatoid disease. Talk to your doctor or nurse, or other doctors and nurses whom you know and trust. But stick to reliable sources of information and keep healthy limits on how much researching you allow yourself to do.
I can’t emphasize this one enough. The stress and drama in your life has to go.
If we’re honest, it should go anyway, but especially through this journey of chronic, we must – must – get rid of stress and the things and people who create it. Now, don’t get me wrong, some stress is inevitable. We all have some stress that we have to deal with every single day. Other life events like raising a family can be stressful at times. Being a good spouse or a good worker, or even a good friend, can sometimes be stressful. Why, just being a good patient and the fact that you have chronic disease will bring you all the stress you can handle (and then some – bleh) in a day.
But those things that are unnecessary stressors in your life – they have to go. Think of it this way…you are now operating at 70% normal capacity because 30% of your body is totally consumed with being sick, fighting inflammation, etc. When we take a percentage of our being-sick energy and re-direct it to fight unnecessary battles (as if Rheumatoid by itself doesn’t present enough “real battle”…) then we choose by default to have less energy to: a) fight disease, b) be a wife and mom, c) be a friend, d) study the Word, e) go to doctor’s appointments, f) other important – and now necessary – life events, like taking meds that kick us down for a day. This means that we now fight disease with less power, so the disease gets ahead in the fight….and we get sicker… and now we take more medicine… and now we feel even worse and are more tired… which means we have less and less energy…. and on it goes. So who in the world would want to take much-needed, disease-fighting energy and redirect it to unnecessary stress that really should be eliminated from our lives anyway?
Not me. And probably not you, either.
But my fellow CDPs… we Chronies don’t get to stop at just eliminating the junk from our lives. Life requires us to take it a step further, and this is where it gets tough for me. You see, even some of the good things in our lives will have to go. I think this is truly, truly hard. There are nice things that I want to do for family, friends, or even strangers at the gas station or in a restaurant, like helping a family with a wheelchair get situated at the table just down from mine.
My primary love language is acts of service, plus I’m an over-achiever, I’m just wired that way. An achievement addict, even. But, once chronic descends upon our life, we won’t have time to do all these things. Being sick is a full-time job by itself and takes hours and hours every single week. Besides time, we won’t have the brain power. Nor the energy. Or the initiative. Or the physical ability in many cases. Heck, there are days I can’t even grip my toothbrush. That may sound like hyperbole, but honest to goodness – there are mornings when I’ve had to try and brush my teeth with an open hand because I can’t wrap my fingers around the brush.
But here’s some encouragement… it’s okay to do less than we used to do. It’s okay to say, “no.” And “that’s not my primary focus anymore.” And even, “I have to let go of a few things to embrace these new things in my life.” It.is.okay. God will teach us so much on this journey and we just have to free up space in our lives for the journey we’re on.
Respect the auto-immune disease process
Often I hear CDPs take the approach of, “I’m not sick!” and “Pfft….it’s nothing. I am NOT going to lie in bed for an hour every single day, that’s ridiculous,” and other such bravado statements. If I had one word of advice along this line, it would be this:
Respect this disease – sometimes it will win.
Rheumatoid doesn’t give a rip about my schedule, my to-do’s, or my daily grind’s. Put the bravado aside and put on the helmet of smart. Respecting chronic disease is not emotional and cognitive weakness. It is being smart and staying ahead where possible, alongside when you can, and taking a backseat on those days when this is required. And there will be those days. As gently as I know how to say it … some days chronic will win. On these days, lean on your spirituality, faith, and those people closest to you who are your support team. Do all that you can to properly prioritize the things you allow in to your life, so that you can identify and eliminate those items that don’t make the top 10. Have a healthy respect for chronic and how these diseases work. You can play Disneyland and merry-go-rounds with chronic if you want to, but trust me – this will not be your friend. One way or the other, the disease process will get your attention. And you’ll develop the respect that chronic requires.
So, come out of the chute with a healthy dose of respect for the disease process. This mindset will come about anyway, so just go there from the start. Your body will thank you. Your friends and family will thank you. And your doctors will thank you, too.
Make sleep a priority
Sleep. I’m not sure I know where to even begin on this topic. I guess I could say that yes, we need sleep. And all my readers would say, “duh.” If you’re like me, this has been an area of great struggle. I have fought problems in this area as much as any other in my journey. Let me give you a short low-down on what I mean.
When the rheumatoid is at its worst, sitting, standing or lying for more than about 10 minutes just causes the body to hurt. For me, staying in constant motion keeps the pain down to a more manageable level. I still hurt, but if I keep moving, it’s not as bad.
So sleeping, i.e., lying in bed for hours at the time, is painful. Exquisitely painful. There are nights when it hurts to grab my pillow and re-position it. Sometimes just lying there hurts bad enough to wake me up thinking, “ugghh…. I need to move…..” So I try to roll over. But it hurts. Rolling over just plain hurts. And it hurts bad enough to wake me up. Then I’m up. Sometimes wide awake. This is the well-known “painsomnia.” There are seasons when sleeping more than two hours just isn’t worth the pain. Or it’s just impossible because of the pain. So sleep eludes me. After several weeks and months, the body just doesn’t sleep well anymore. This vicious cycle of no-sleep-stay-tired sets in and this poor CDP is just done for.
Can anyone relate???
But sleep is important because that’s when the body regenerates. Re-energizes. Heals. For my low blood pressure and adrenal issues, during sleep is when we generate our adrenaline for the next day, so healthy sleep is especially important.
The cycle is vicious. The struggle is real. So, how do we get a good night’s sleep?
I blog a bit more extensively about sleep hygiene in other posts, but suffice it to say that while each person is different, there are some things that are known to help us sleep. A chronic illness demands time for rest throughout the day and not just at night, but the value of deep nighttime sleep cannot be overstated. A few of the most valuable things for me are trusting my doctor and taking sleep aids when he advises (this was a huge struggle on my part and I use natural aids when possible), nighttime herbal teas, essential oils, and having a nighttime routine that dials down my brain and helps me relax. Sometimes I start as early as 6 pm, because this takes time for me, especially if my mind is wired. Type A personalities and chronic disease just don’t go well together sometimes, especially in terms of sleep. I no longer stay out until 10 or 11 pm most nights. This means I have to be willing to make changes, like saying “thanks, but could we do lunch after church instead?” when friends invite us to dinner. Do you know, we’ve not lost a single set of friends because we asked to go to lunch after church instead of dinner on a Friday night?
As a side note, I’ll tie together #2 and #4 on this list. I have great trouble sleeping when something is bothering me. Stress keeps me awake. So it’s more important than ever to eliminate stress wherever possible. We CDPs are already not feeling well, and when you don’t feel well, you don’t feel like being nice. Toss in a lack of sleep, especially over several days, and we can be a crabby nightmare for those around us. Do your body and your friends and family a favor – do whatever is necessary to get deep sleep at night. Say “Buh-bye!” to the crabbies every single time you can.
In the not-too-distant future, I’ll be teaching on what changes I made to my diet and how that re-set my immune system. But for now, here’s my main takeaway from that particular part of the journey – listen up here…. my food works for me, I don’t work for it. Food IS medicine. For me, food is my first medicine!
Here’s an eye-opener of a revelation that I learned: Good nutrition is important for healthy living. I know, we’ve heard it a thousand times, right? But good nutrition is triple-important when fighting non-stop disease. Okay, maybe it’s not an eye-opening revelation, but it’s important to state for the record that nutrition absolutely plays a key role in beating chronic illness, particularly auto-immune and inflammatory diseases. Even healthy people can’t eat pizza, French fries and ice cream five times a week and expect to feel their best.
Diet-wise, here are the five biggest changes I made. There are more than five, but we’ll start here:
- I gave up sugar. And foods that have any kind of sugar in them. This is difficult, not just giving up sugar, but learning how to recognize all the code-speak for sugar, like high fructose corn syrup, for example. I also gave up fake sugar, namely aspartame, which means no more Diet Dr Pepper for me. Yeah, I gave up my favorite drink. And if I can do it, you can do it, too. So no whining, okay? I’ve actually had friends tell me, “Oh, I just can’t give up my Coke” or “sweet tea” or whatever drink. And I’m thinking…. “I’d rather take the metho so I can have my Coke….” yeah, said no one ever. Give it up. Get rid of it. And no whining.
- No beans. Unless the pod is the biggest part, like in green beans.
- No peanuts. This means peanut butter, too. This one was hard, but I’ve learned to eat cashew or almond butter. Took a little getting used to, but it’s a great substitute. More expensive, so I don’t eat a lot of it, but still a very convenient snack on a banana or mixed in with other fruit.
- No corn. This includes popcorn, corn oil, and things cooked in corn oil. Olive oil and coconut oil have become great substitutes for corn oil. Tasty and very healthy.
- For 30 straight days, in addition to the above, if it had more than one ingredient or if it was meat, I didn’t eat it. Period. I do this 30-day re-set every year now.
Everyone is different and exactly what works for me may or may not work for you. Be sure to discuss any and all dietary plans and changes with your doctor. The main point to make is that Nutrition matters. It really does. Food is our first medicine against disease and while it may not be curative in and of itself, proper diet matters. Some foods are known to be inflammatory triggers. Some are relievers of pain and inflammation. If your doctor agrees, I highly recommend going way down to a few foods, clean out your system, then little by little add foods back in and see what flares your system or not. Allergists do this all the time to isolate allergy triggers, and it’s the same idea here. But as always, check with your doctor first.
So there you have it, a few must-do’s for Chronies dealing with auto-immune and other chronic illnesses. I hope these tips are helpful as you start your journey of “chronic.” Remember that there is joy on this journey, if we just keep our eyes up.
And please, take a moment and offer some help to our CDP family of readers – what tricks have YOU tried that made your symptoms better? Leave a comment below and share your tips!
Blessings, y’all –