Just Say NO

Guest Author: Christina Lowe

Do you ever feel like you’re always saying yes, but your body is screaming NO!

I will be the first to admit it, so no one feels guilty right off the bat, I am horrible at saying NO. Especially when I want so very badly to say YES. I have always been that person that has gone, and done, “Oh sure, I don’t mind.” Until I sat down in the car, or got home that night and the day caught up with me.

I started to notice something wasn’t quite right, and it’s not just because I’m getting older. I’m 35 for goodness sakes! At the time, I was in my 20’s. Chasing after my son, running a household, school functions, P.T.A., travel baseball, (which he still does). I had no idea at the time that there was anything wrong with my body. I just knew I had aches and pains that weren’t going away.

I had always been very athletic and worked out. Running was one of my favorite things to do, incidentally running is what eventually 5 years down the road led to the discovery of my A.S and SpA. I had a severe pain in my hip area that didn’t go away after an afternoon of running, coupled with me never saying NO to anyone when they needed something, and not letting my body rest.

Five years of every different kind of specialist saying they had no idea what was wrong with me, it wasn’t their department. Until fast forward to Oct. 2014 a brilliant Rheumatologist found out what was wrong with me. She was my last-ditch effort, because after that I was just convinced I was crazy. I had been told to see Psychiatrists, Psychologists, that this was all in my head.

I still see a Psychologist, the same one that told me it was not in my head and to keep at it someone would find out what was going on physically with my body.

The Rheumatologist told me I had (SpA) and Ankylosing Spondylitis (A.S). Do what now!? I had never in my life heard of this, she’s still talking, my mind had shut off at this point and all I see is her lips moving, and I hear a muffled sound. Why am I just now hearing about this? Why didn’t the bone doctor I saw know about this when he saw the bone degeneration in my hip ex-ray? Why didn’t the four Neurologist say anything about my C-spine straightening and mention these foreign words?

Uh Oh, Earth to me, she’s looking for a response and I have no clue what she said. So, I smile and nod, gather my paperwork, do you have any questions she asks? I have tons, but I have no clue where to start. I was not prepared for this. No cure, is sort of a sucker punch. I tell her no. I went home and did a ton of research.

One thing I did find out, rest is essential. How many of us on our good days are strutting around like, “Yup, my meds are working great. I’m going to do the laundry, and clean the bathroom, and go to the grocery store, and cook dinner.” Many of us can still function just fine and hold down jobs, but that time catches up to you too. Your body needs to rest. You may get everything on your list done that day, and you may carry on like that for a month, if your medicine regiment is working great.

However, I’m here to tell you and I don’t want to be the party pooper; but I will be for the sake of your health. It will catch up to you, and you will be sad you didn’t listen to me. You will be lying in bed, if you make it there; at best on your couch thinking, I should have listened to that funny girl that wrote that article about Just say “NO.”

Now I feel like I’ve been mowed down by a gang of kids running after an Ice Cream truck. I’m talking from a place of pure experience. When we run our bodies out of gas, we open it up for more illness, we weaken our immune system further, and we are no good to ourselves or anyone around us. It’s just not worth it. Learn how to say NO!

  • Is it easy –No
  • Are your friends going to say you’re no fun because you never want to go out, and you are like a granny going   to bed at 8 or 9. -They probably are.-

Let’s be honest though, if they are your real friends they want you to be healthy, not sicker, or worse, just for the sake of “going out.” Can you still do it occasionally, sure, just don’t do it every single night, that’s not healthy for people with weak immune systems. Who are we kidding, it’s not healthy for people with “normal” immune systems either.  You must remember, you are not “normal,” you protect your body.

  • Will your family understand why you may have to take a nap in the middle of the day  –Hopefully they do

With some education support about your condition they should understand your need to rest and recharge. Some things just wear you out.  I am beyond blessed that my son is 11 and knows what is going on with me, and my Husband supports my need to rest. If there are dishes in the sink, leave them, they can wait until you’re rested, or someone else can get them. Laundry piling up, same thing, because I’m willing to bet it’s not all your laundry.

The Super Woman image we have made up in our minds has got to go.

This, I can do it all, even though I’m sick stuff. There is a lot we can do, we are not helpless little creatures but the thought that, I can still carpool an entire baseball team, plan lunches with my girlfriends, hold down a part time job, work on the PTA and volunteer at the shelter, all while keeping my house spotless, and helping any friend or family member in need at the sound of a text message chime is ridiculous.

If you honestly feel bad on any given day, do not, I repeat DO NOT feel obligated to say yes to helping someone. Your true friends know your heart, they know you would be there at the drop of a hat to help them. If you lose friends because you say you can’t help them when you don’t feel well, or you cancel AGAIN, then they weren’t your friend to begin with.

You didn’t lose anything, you gained more time to rest and help your body. Super Woman wasn’t “normal” and neither are we. I’m sure she must rest a lot with all the fighting and amazing stuff she does.

You think she just bounces back, nope, she needs to let her body heal. So, do we, our bodies are kicking our butts and we must let them rest. Do not ever let someone make you feel guilty for saying NO to them. That’s their mess to deal with NOT yours!

Case in point, I’ll use me, since I know about me. I’m Super Woman (mom) at least I thought I was “that version” us women have in our heads of Super Woman, even through my diagnosis.

Feel free to puff up your chest if this sounds like you too. ” I got this, no cure, so what, I have my biologic, which seems to be doing its job for the most part some days. I finally got into pain management, which helps for the most part some days.”

Having this disease, you know we are never completely pain free, we have just adapted our pain level to “tolerable, I can function without crying.”

What “normal people” rate a 7-8.

Ok, back to my story, so I’m chugging along in life, NOT RESTING, overworking myself, not listening to my body, saying YES to everything and everyone; no one’s fault but my own, I’m a people pleaser. I always have been, that’s something I’m working on now, which is why this article is so important for you all understand the importance of saying NO. You can’t please everyone. You need to take care of yourself. You must take care of you first, no one is going to do it for you.

My breathing started to become affected, I brushed it off. I thought it was my heart at first. Ran the gauntlet of doctors and tests come to find out I have severe asthma. What!? But I’m not allergic to anything according to all your tests. Bunch of quacks. (Having dealt with so many doctors that couldn’t diagnose me, I lost a lot of faith in the medical profession.

I trust a hand full of doctors, my rheumatologist is at the top of the list. She didn’t do these tests, so I didn’t have much faith in their competency) Keep chugging along, meanwhile I have lost 25 pounds in a month, my hair is falling out, I’m running myself into the ground, NOT RESTING like I should be. My follow-up with my Rheumatologist revealed that I have Lupus also.

I had tested positive for the DsDNA marker and other markers in the past but never an ANA (under a different rheumatologist). Until I sat out in the sun at my son’s ball game and then saw my Dr. I have a history of the summers being hard for me to breathe in. The sun exhausting me, the signs have been there since the beginning of my struggles, but without the ANA they wouldn’t say it was Lupus. (come to find out inflammation in my lungs is the cause of my severe asthma caused by the Lupus)

I cannot express the importance of resting and Just saying NO.

Would they have eventually found the Lupus, yes. I am glad they did, but I had run my body so far into the ground my immune system had no means to fight. That’s not healthy and I’m paying the price for it now. Do not feel like you are weak because you are sick. Like you don’t measure up to everyone else, because you may have to say NO to people.

We are strong, we are fighters, we are capable of way more than people give us credit for on any given day, even when we are resting. So, don’t you dare feel guilty for resting, or for saying NO to anyone that asks for your help, and gets mad at you for saying NO. You are fighting a battle only the brave can fight. You make a choice to get up each day and make decisions that will impact you for the rest of your life some days. We did not choose a life of doctor appointments and medicines. Of waiting on lab test or seeing if the next medicine will help. So, discard that old version of Super Woman you had in your mind and replace her with the new one.

The not “normal” Super Woman the real one. The one that fights, and never gives up no matter what. Even when she gets knocked down and she is all banged up and bruised. The one that will help a friend in need but not at the expense of herself or her needs, because she knows her value, and she knows that she is no good to anyone if she does not rest. The Super Woman that says NO and does not feel guilty about it because, she has important decisions to make, for herself, her health and for her true friends and for her family.

About the author: My name is Christina Lowe, I live in Virginia, with my husband and my son. Being diagnosed was and still is as you can tell from my article a struggle for me, being a young mom, and having an active son.

I want to be involved in everything he’s doing. I know I am not the only mom out there that struggles with that, so if I am able to help just one mom to relate, then I’m happy. Or one woman that struggles with her friends not understanding, or not talking to her anymore when she can’t always be there to do something for them. Then I feel like more of us won’t feel so lost.

I hope to be starting a blog soon as well as a line of inspirational jewelry. I already have a Facebook and Etsy site, I’ve had for years, I just hadn’t found a niche until my Lupus diagnosis, funny how life works. Once I get the blog started it will be linked to them as well, if anyone is interested in following. The jewelry is called T.A.G -you’re it- and you can read about the inspiration for it on my Etsy site or my Facebook Page.

Right now, my Facebook business page is the only one I can link to since I don’t have anything active on my Etsy site. Keep your heads up and stay positive. Some days are harder than others, but we can get through anything, we’re tough! Find me on Facebook.

 

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Walk AS One is a non profit organization with 501c3 status in Maine, USA that organizes the Walk Your AS Off campaign each year. We are an all volunteer organization that mobilizes and motivates a global community to raise awareness and address the challenges of those affected by Ankylosing Spondylitis and its family of related diseases. Join us at www.WalkASOne.org

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