Living with a chronic Illness can be hard, plain and simple. Living with an invisible illness, one that causes chronic pain, is harder. It has become such a common practice for people to quickly judge another person based on their condition or based on their use of narcotic pain meds. It has even become true within our healthcare system and within the government. Sadly it is not uncommon for a patient to be looked upon as an “addict” simply because of a medication that they take. Much of this has happened in response to the media coverage of the Opioid Crisis and how the government is handling the crisis.Read More
Just like many of you I have trouble coming up with a list when asked for one by my friends or family. And just like everyone else I know, I would love to get away with giving gifts that are less than $30. But when you look at what’s available, it seems an impossible task.
So, I went through the things I love that I’ve either gotten as gifts, purchased for myself, or have in my cart at Amazon. And I put together a great list for anyone on your list who may deal with a chronic illness (and those who don’t).Read More
It is so easy to get stuck focusing on the bad things in life and focus solely on how things haven’t turned out the way you had in mind. It’s easy to list off the things you have missed out on or didn’t get to do because you…Read More
Some holidays and some chronic illnesses can cause a natural tension within the body. No, it might not be the stress causing fatigue you are thinking of. It is strange strobe lights, the nighttime migraines, visual distortions and the disorientation of Halloween.Read More
Over the years I've been told by many people that writing a letter is a good way to deal with big changes in your life. For instance writing a letter to your ex after a divorce, or to a loved one who has died. Or even to your body or disease after you have been given a life changing diagnosis. Pippa Stacey did just that.Read More
If you have never woken up from a dead sleep with your heart pounding and your chest tight drenched in sweat from anxiety. Or felt the panic rising out of no where? If you haven't I am so happy for you.Read More
One minute everything can be calm and stable and the next we are inundated with symptoms flaring, numerous medical appointments, x-rays and scans, blood tests, poking and prodding, emergency trips to hospital, feelings of bewilderment and concern.Read More
It never fails that as we start to say goodbye to summer and all the fun memories we had, we not only welcome fall, football and changes in leaves. We also welcome allergies, colds and the flu.Read More
It seems like no matter what you do these days it's going to potentially offend somebody for some reason. It doesn't matter if you are healthy or chronically ill. That being said when you are chronically ill it seems like everyone has an opinion on how you should be living your life. The things you are eating, how you are sleeping, what medications you are taking. And at some point it becomes overwhelming. It can get to the point that you feel like you are no longer living life for you and you are just doing things and living life to please those around you. That may last and be okay for awhile. But at some point you are going to realize that you just can't live that way. No one can, chronically ill or not. But especially those of us who are chronically ill. Simply because the stress of always trying to please someone else can cause stress on our bodies and in the end make us sicker. That in mind let's look at a few things that are okay to do and you should NEVER feel guilty for doing! 1. Saying NO
For most saying NO is not something we like to say or something that comes easy. But it is something that we MUST say from time to time. No one can do everything that is asked of them especially not someone who is chronically ill. When it comes to matters of your health & wellbeing saying no to protect your health is never a bad thing. Let me give you a little example: your bff who has three kids under six, who you love like your own, invites you over for dinner and a movie with two other couples and their kids during cold & flu season. In this case you must think of your health first and kindly say you'll pass this time and catch up with them later. You really can't chance picking up a big from the kiddos.
2. Taking a ME day
I don't know how many times lately I've heard lately that that people are all about themselves. But are they really?! Or is that a generational thing?! Because most of my friends and people I know spend more time caring for and about those in their lives than they do caring for and about themselves. That being said if you are one of those people who spend more time taking care of your family and doing kind things for your friends than this is for YOU! You should never ever feel guilty about taking a day just for you. Spending a day doing just what you want. Whether that's a day in pajamas binge watching Netflix, getting a mani & pedi, or having lunch with your friends. A me day is a good way to reset and just relax. And something you should never feel guilt about.
3. Your views on medicine
This can be a very personal and controversial topic. That being said your views are yours and you should never feel guilty for your views. You have to do what is best for you, your kids and your family and other views should not impact your decision. Everyone will have their own viewpoint and not everyone will agree with your differing viewpoints is what makes the world go round. And not something anyone should be made to feel guilty for.
4. Being "different" than someone else.
Like I mentioned above everyone is going to have different views on things. Whether those views be about medical treatments, vaccines, politics or religion, you will always find different views. Even among the closest of family and friends. But that's OKAY. Differing viewpoints are good and are what make the world go round. That being said never let anyone make you feel guilty for having different viewpoints.
5. Feeling good about yourself
I feel like it takes a long time to truly find yourself and who you want to be. During the years spent searching for who the real you is chances are you probably didn't have great self-esteem. So when you finally find yourself and feel good about that person don't let anyone change that. Once you can finally look in a mirror and love what you see, that is one of the most amazing feelings in the world. You deserve to feel good about yourself!! You should never feel guilty about having good self esteem.
People are different, have different views, and do different things, and that's what makes the world go round. But you should never feel guilty for any of those things. As I have said many many times you have to watch out for you because no one else will. So don't ever let anyone else make you feel guilty for being you.
By Bethany Sibley When I was first diagnosed with a chronic illness, I never thought that it would amount to life lessons. How could something that caused me so much pain, frustration, and uncertainty teach me anything ..? It was in those moments of pain, frustration, and uncertainty, though, that I gained some of the most valuable life lessons. It was in those moments that I gained something I will never be able to quite put into words.
Domestic Violence is not a topic to ignore as it is an ever growing problem. A problem that is being focused on this month as the month of October is Domestic Violence Awareness Month. I would imagine, based on statistics, that each of you reading has been impacted by domestic violence in some way, if not you directly, than someone you know has. I say this because the National Coalition Against Domestic Violence says that 1 in 3 women and 1 in 4 men have been victims of [some form of] physical violence by an intimate partner within their lifetime. No certain kind of person is too good for domestic violence as it doesn't follow any social economic lines. It can happen to any one from any race, color, class or educational background. Let's look at some statistics!
- According to the Huff Post Women are more likely to be victims to violence from a intimate partner with 85% of all domestic assault cases being women and only 15% being men.
- According to Huff Post Women with disabilities are FORTY PERCENT more likely to experience intimate partner violence -- especially severe violence -- than women without disabilities.
- The Hotline reports that nearly half of all women and men in the US have experienced psychological aggression by an intimate partner in their lifetime.
- According to Springtide Recourse 35% of all women who are or have been in married or common-law relationships have experienced emotional abuse. In comparison, 29% of women have been physically assaulted by their male partners.
Some feel that emotional abuse is not that big of a problem but it has been found that emotional abuse is actually the largest risk factor and can be the biggest predictor for physical violence
Having come from past relationships where there where I dealt with some abuse (no physical abuse). I can say that the above statement is true. Emotional abuse does lead to physical abuse. While I can say I was lucky and got out before the abuse got physical, but I could see it coming. There were signs pointing towards violence. And pointing to the fact that it likely wouldn't be the wall that would punched next time, it would be me. Or that it likely wouldn't be the glass that would broken next time, it would be me. When those things started happening I got out. I stayed longer than I should have, but I got out. That being said I do understand why ladies stay. You always want to believe the best, believe that it could never be true, believe that the lies aren't true and believe that they can change. Sadly, chances are, it will be you and the lies are true, and you need to get out before it's too late. I know this is going to sound crazy and I know that some of the people I've said this to over the years have thought just that. But there were times when I wished I would have just been hit. The physical wounds would heal and go away. But the awful things that were said to me stay with me so much longer.
As I am writing this post this morning the following makes me feel like I'm not alone in my thoughts and feelings. And made me realize I am not alone in how I've dealt with everything.
"Most women indicate that emotional abuse effects them as much, if not more than, physical violence. They report that emotional abuse is responsible for long-term problems with health, self-esteem, depression, and anxiety. In one study 72% of women reported that being ridiculed by their abusive partners had the greatest impact on them, followed by threats of abuse, jealousy, and restriction [or isolation]. It was also found that the impact increased with the frequency of the emotional abuse."Springtide Resources
People always just say why don't women JUST LEAVE?!?? And there are a lot of reasons. The biggest being safety. Many women dealing with physical abuse fear their that their abuser will find her (and her kids, if she has any) and hurt her, maybe worse than ever before or even kill her. Another reason is often lack of resources. In many cases they don't have money of their own that's not tied to their abuser. She also may have not told her family so they don't understand or may not support her decision to leave, because they may feel like she is making it up or making it seem like it's worse than it is. Sadly, in many cities outside of emergency, short-term shelters, there really aren't many long term options available to women who have been abused. Due to the lack of accessible affordable house, low income, and affordable legal aid on average an emotionally abused women will leave her significant other FIVE times before leaving for good. Springtide Resources And for a women who has a chronic illness it may be even harder for her to leave due to her health.
As I noted at the beginning of this article women with disabilities are more likely to experience abuse. As I was doing my research I was shocked to find that there is a strong link between those who suffered domestic abuse and those who have some type of chronic illness. There was a survey done in 2013 By MORE Magazine and the Verizon Foundation of domestic violence survivors in the US. This particular study showed that that 80% of domestic violence victims experience chronic health problems such as diabetes, high blood pressure, chronic pain, asthma, and insomnia. It also found that women who had a past with domestic violence are not only more likely to suffer from chronic illness, they are more likely to suffer from multiple chronic illnesses then women who have no history of abuse.
Domestic violence is a very personal and often very hard to talk about, or admit it happened to you. For some reason it almost feels like you are less. If a person because it did happen. But that isn't the case. It doesn't make you any less of a person. It happened to you Not because of you. Please if you are in an abusive relationship or know someone who is, reach out to someone and try to get out. If you don't feel like you can reach out to a friend or family member you can always reach out to The National Domestic Violence Hotline at 1-800-799-SAFE. They also have a Live Chat feature that can be found at https://www.thehotline.org/contact/ that is always available. Or reach out to your local dr, pharmacist or anyone in your medical community as they are all mandated reporter. If you report abuse to them they are required to report it to the law. No matter who just reach out if you want out.
If you want more statistic or resources check the links below:
Cooking has been a favorite part of my life since I was a toddler. Some of my favorite early memories revolve around learning to cook with my grandma. We spent a LOT of time in the kitchen throughout my childhood. She taught me how to make recipes ranging from quick and easy recipes to very long and in-depth meals. We baked pies and cakes. And even spent an entire summer baking different kinds of bread and trying to perfect the look of our rolls. As I grew up and moved out on my own I continued to enjoy cooking, and loved getting a recipe box from my grandma that held many our favorite recipes that we made together. Sadly, when my health started decline and my chronic illnesses got worse, my time in the kitchen also declined. It became harder to cook and became something that was much more trying. Over the years I have found some tips and tricks that make cooking with a chronic illness easier. And today I want to share those with you.
- Plan ahead - Over the years I have learned that the more unhealthy I eat the more aggravated my fibromyalgia is. So I've tried all sorts of different ways to plan ahead so I can eat healthy. I have found that what works best for me is to prep my meals for week ahead of time. On a day when I'm feeling well I will order my groceries, pick them up and do what I can to prepare for the week. Whether that's marinating meat, grilling chicken, precooking ground beef for tacos or spaghetti or chopping veggies. I do whatever I can that will make cooking later in the week easier. I haven't tried it personally, but I have friends that will pre-package their smoothie ingredients into freezer bags, so they can just grab the bag from the freezer and dump it in the blender.
- Keep meals as simple as you can - I love looking for new recipes on Pinterest. But I can't click the back button fast enough when I see a list of 15 ingredients or requires more than 45 minutes to prepare. And I no longer care to make sure that each meal has a certain amount of protein, veggies and starches. As long as it's not all fat and starches I'm good with it. Most of my meals these days are something slow-cooked or roasted. I try to do high protein, and low starches but I don't stress if that's not exactly what each meal is.
- Make bigger portions/more than you need - When you are preparing to cook, gathering ingredients and such you should think about making double or triple of the recipe. By doing this you have meals for now AND meals for later. I like to do this especially with soups and casseroles. If you &/or your family aren't big fans of leftovers then make more and freeze the extra. When you pull that dish out in a couple weeks it won't feel like leftovers.
- Get yourself a good crock pot or - I LOVE LOVE LOVE my crock pot!! I can not say enough good things about it. I love being able to throw a few things in it in the morning and having a meal 4-8 hours later. It doesn't really feel like cooking because I didn't have to do much except chop a few things and throw them in.
- Simplify grocery shopping - Grocery Shopping is such a pain. Literally and figuratively. Especially during cold and flu season. And it always just takes so much energy. My area is a little behind the times but about six months ago the Walmart closest to me started offering grocery pickup and it has changed my grocery shopping game. I can just go online order my groceries and just pick them up without ever leaving my car. This prevents all the extra purchases I might make because I see things as I'm shopping and decide I need them. It also prevents the fatigue that comes from Shopping and it cuts the chance that I will pick up any germs from anyone while Shopping eat down. So I highly encourage you to do some form of online grocery shopping. Whether it's through amazon, or instacart who deliver your groceries to your home. Or Walmart or Hy-eve where you have to go and pick your groceries up!
- Find a good memory foam rug for the kitchen - I had a friend suggest this to me several years ago and it really helped me. I actually bought one for the area in front of my stove and one for in front of the sink. I did that because those are the areas that I generally stand in place the longest while I am in my kitchen. But if I am doing prep work and chopping and have a lot of chopping to do, I will move one of the rugs over to where I am standing. You might think this one is silly. But you would be amazed at how much it helps to prevent some of the pain you would normally get in your feet in legs. I find that it also helps some to minimize the pain in my hips and back as well.
I love to cook and I hate that it's one of the things that my health has taken from me. So I have worked really hard to find ways to be able to continue cooking when I feel like it. I hope that you can find these tips helpful.
If you have any tips that you have found to be really helpful for you in the kitchen don't hesitate to leave them for me in the comments below!
Looking back and thinking about when my health journey began and it's honestly hard to remember. As long as I can remember I was always "that kid" who was sick & I never had perfect attendance due to illness. When did my health get really bad?!? Sometime during high school. I remember when I was fourteen I started having intense abdominal pain that no one could ever diagnose other than to say it was for sure not my appendix. Then in 2001 (my junior year) I got sick and was diagnosed Mono and it seemed like it was everlasting. It stuck around forever. Over six months in fact. Once I was diagnosed with Lupus the doctor said that the long lasting Mono was most likely my first lupus flare. From 2001 let's fast forward to 2011. Yes, that's a big jump. But there was nothing big that happened health wise during that time. It was just more of the same. I was always sick and I continued to have the abdominal pain that no one could diagnose. Finally in the fall of 2011 I plead my case to my OBGYN and she agreed that it was time to go in and do a laparoscopic surgery to see if I had endometriosis and excise it all if I did Indeed have endometriosis. Well, the surgery showed that I did have endometriosis and she was able to take care of everything at the time of the surgery. So that helped immensely with the issue of the abdominal pain.
Now we will jump ahead a little further to Feb 2012 when everything went down hill. I was admitted to the hospital in February that year for a week for a respiratory infection that no doctor was actually able to diagnose or effectively treat. I ended up going home on HIGH doses of prednisone and had to take an entire Month off of work because no matter what I did, I couldn't breath. At this time along with the breathing issues I also started having PAIN. Widespread pain. Pain like I have never experienced before. Pain that no one had an explanation for. So I couldn't do much activity because I couldn't breath, and everything hurt, and I was SO tired. This wasn't run of the mill fatigue this was life changing fatigue. But no one seemed to me concerned. Sadly due to all those things combined I had to change my job at work and leave my charge nurse job on the post surgical heart and lung floor where I had been for 5 years since graduation. I had to quit a job, that I had not even started, that I was so so excited about. I had just been hired to teach clinical for a local nursing program, which had always been a dream of mine. And I had to drop out of the Masters of Nursing in Education Program that I was 8 weeks into. Because of my health.
Looking back I can that my hospitalization in Feb of 2013 was just the beginning of the decline in my health. That July, I was diagnosed with Systemic Lupus among other things. Though troubling and scary, it explained so much. It explained why I had been feeling the way I had and the symptoms I had that no one could ever figure out. Along with all the issues I had experienced over many previous years that didn't seem big at the time but now all added up and made total sense. In the months and years following my Lupus diagnosis I have been diagnosed with so many other life altering conditions that made it hard to see any kind of future for myself. Just to name a few, I was diagnosed with Fibromyalgia, Endometriosis, Interstitial Cystitis and other chronic illnesses. Not to mention the migraines that years later morphed into hemiplegic migraines. And like i said above, after the Lupus diagnosis it became clear that I wasn't going to be able physically to continue working as a nurse on the floor. I not only had to leave my job, I had to step down from my teaching position with the nursing program before I even started. And I had to drop out of the masters program that I had only just begun. To say the least I was crushed. I just couldn’t understand why God would allow these things to happen and what I had done to deserve so many trials.
At that time I honestly had a really hard time seeing past the actual diagnosis. I couldn't understand why God would take away my ability to do the things I had always dreamed about. My job, furthering my education and the ability to have children. I mentioned earlier that I was diagnosed with endometriosis and sadly between the endometriosis and the lupus I will likely never be able to carry my own child. It would never be safe. That has probably been the hardest change for me to accept. I have dreamed, like many other ladies, about having my own babies since I was a kid myself. I had names picked out in my head and everything. And before anyone says anything, yes, I know there is adoption and other routes which I may look into at some point. But I have come to accept that the dream of actually carrying my own child will likely never happen.
In the months (and honestly even years) following my Lupus diagnosis I struggled. I struggled in pretty much every sense of the word. I struggled to find my place in my workplace. I also struggled to find my place in my relationships (family, friends, romantic) as I felt like nothing was the same even when others didn't see it that way. Sadly, I lost friends and relationships that I thought would be lifelong all because of my health. These conditions are something I am going to be dealing with forever and can't just walk away from and have had hard time accepting. And those people did the one thing I wished so much that I could do. They threw up there hands and walked away.
Probably around 9 months in I began to realize that something had to give. Something had to change. I couldn't continue going at things the way I was because something had to give. So I searched for a place I could go for support. Someplace I could go and talk to others who were living through the same issues that I was. A place where I could go and openly express my feelings without being judged, a place where I could find information on the issues I was dealing with. I looked for local resources and online resources, but I couldn't find a place where I really felt comfortable. After spending time searching, it became clear to me that I was supposed to create the place I had spent so much time looking for.
After I realized that I was supposed to create this place of solace and education that I had been looking for. After I finally came to the realization, I spent a lot of time researching support groups & educational groups. I wanted to find out what made these groups successful, and what made them flourish. So I did just that. I recruited a few of my fellow Lupies (aka someone with Lupus) -and friends to help me and we created a Lupus & Chronic Illness Support Group on Facebook. A group we call "Lupie Groupies." We created a group where those dealing with chronic issues could go and be real and totally honest. A place where judging others for their thoughts and feelings is NOT allowed. A place for those who were newly diagnosed, as well as for those who have been diagnosed for decades and everyone in between. A place to find education on their conditions and as well as information on treatments.
At first we were a very small group of like 75 people, but over the last 4+ years we have grown to over 600 members. When I started this journey I would have never dreamed that I could develop a support group that would grow to be so big! I have received such amazing feedback over the last four years from people in this group. People telling me that the group has given them hope, and that they have made life long friends in the group.
The last two years have been incredibly trying as I had a seizure, totaled my car, lost my job and had to move back in with my parents. This was never where I thought my life would be but it is what it is. I've had my highs and very very many lows. But I feel so lucky enough to have this amazing blog as a source of outreach. I love that I have this platform to spread awareness and use it as an outlet for my feelings. Some people aren't lucky enough to have one calling in life. But I feel so lucky that I got 2. The first was nursing and the second was my support group and my blog!
I know that makes no sense at all. But the last six years since my diagnosis hasn't been all bad. I have found my tribe, those people in life that you know were meant to be there and will be there forever. And most of them, not all but most, are fellow spoonies. Because as much as I hate to admit it, friendship with a fellow Spoonie is just easier sometimes. Not only can I say that I am lucky enough to have found my tribe but I feel like I have been blessed with a second calling. I don't feel like everyone is lucky enough to get one and somehow I got two. Well, maybe 1.5. I feel like I was supposed to get these conditions so I could use my medical background to teach, spread awareness and provide support to others in similar situations. And I love it!!! Do I wish I could make a little more income from it?!? Ya!!! But maybe someday!! Right now I just feel so blessed that I am able to take my horrible health and turn it into a positive. If someone would have told me this is where I would end up I would have laughed. But honestly I am pretty content. Do I miss work? Yes, yes, a million times yes! But I truly feel like I have found my calling! I was put where I am to be a resource, a friend, a blogger, a leader to those who are in similar places. I was put where I am for a reason and I have had to adjust to that and learn to live in that place.
By Erin Shaffer The first thing you need to know about parenting with a chronic illness is that it’s impossible. Let me break it down for you.
If you think of your energy as a monetary budget, you can more easily visualize this. A normal person has an energy budget like the bank account of an upper middle-class American. Regular deposits are made, and there’s a backup savings account to deal with any emergencies. Their resources aren’t unlimited, but it’s pretty much enough to get them through the ups and downs of normal life. When a car breaks down or a home repair is needed, they take a little from their savings accounts, maybe trim up their spending a little, but they can continue without much of an interruption in their lifestyle.
When a person has a chronic illness, their energy budget looks a bit different. The resources in the account are meager, and there’s no savings to cover overdraft. It’s as if they’re on a fixed income, with stingy little deposits coming at irregular intervals. It’s from this perpetually depleted resource we must draw to find the energy to make it through the day.
What about a parent with chronic illness? Okay, so picture that skinny little sad bank account, but with a big ole’ student loan payment being billed with merciless regularity.
And yet, if you’re reading this, if you’re a parent with chronic illness, you’re doing it. You’re doing exponentially more with exponentially less. Maybe you don’t know how you’re doing it. Maybe you think you’re doing a lousy job. But you’re doing it.
I was diagnosed with Fibromyalgia when my daughter was two. I’d been having pain for a few years that no one could find the cause for. I ran the gamut of super-expensive diagnostics that diagnosed precisely nada. I was put on heavy opiates long enough to become completely dependent, then told I was a drug seeker and denied the medications that were allowing me to function even as they made me act like a complete nutcase. I took myself off opiates and learned to work through the searing pain. Then, I got pregnant and gave birth via c-section. I lost a lot of blood, and my energy level never quite recovered. For a long time, I thought I just needed better nutrition. I thought I needed to work out more. I thought I was just going through what all new mothers went through. After all, I was caring for an infant in the daytime and working full time as a charge nurse at night. My (step)son is older, and he helped a lot. Actually, a lot more than he should have had to. There were so many days when I seemed to bleed pain and fatigue, when no matter how I tried I just couldn’t make my body move. Work became more difficult. I went to the doctor and was told I was too fat and given the most cursory of examinations before being dismissed.
Then one night, a co-worker tapped my shoulder to get my attention. Though the touch was light, it felt as if someone were digging a spike into my shoulder. That spike stayed there for over an hour. That was when it clicked: I have Fibromyalgia. One of my oldest, most faithful friends has fought the fibro fight for many years, and I recognized the pain from the way she used to talk. I looked up symptoms, found a new doctor that actually looked me in the eye when I talked, and told her my suspicions. She thoroughly examined me, a lot more thoroughly than anyone else. She also actually looked up the diagnostic criteria for fibro and began checking tender points. I had a diagnosis, but I didn’t know what to do with it. There was no cure. The few meds that sometimes work for fibro, didn’t. I still had no energy, and no matter what variants of a healthy diet I tried it didn’t change. Caffeine didn’t work. Supplements didn’t work. I had to get through day by day, hoping that I was doing enough to keep my kids happy and healthy.
The holidays were especially hard. I’d always loved Christmas, but now I started to dread it. There was always pressure to work more, to do more, to take the kids more places and somehow instill the air with Christmas magic. Most of my memories around my daughters’ first few holidays are through a blur of exhausted tears. I remember one Christmas eve in particular. I was getting ready to go to work. I was going to put my daughter to bed, go work eight hours on my feet, come home, take heartwarming pictures of the kids opening presents, dress them perfectly, take them to Christmas festivities with family, smile, be engaging, make memories, live in the moment, and record all the Christmas magic for the years to come. Then I would take them home, get an hour of sleep, and go back to work again. I sat down beside my daughters’ crib, and I realized that I was too weak and tired to tell her the story of the first Christmas. My body throbbed so badly that I couldn’t form the words. I sat down on the floor, there by her crib, in the soft glow of twinkle lights, and wept because I couldn’t tell my daughter my favorite story in the entire world.
I’m not gonna lie, I was feeling pretty sorry for myself. That low place got way too familiar as time went on. I found myself on the floor more and more often, too weary and in pain to take another step. And I’d like to tell you that I always managed to pick myself back up, but the reality of chronic illness is far from that.
However, I discovered something when I was there on the floor (besides the cat’s toy stash under the fridge). I discovered I could get stuff done from down there too. I discovered how delighted my little girl was to have mommy on the floor with her and her blocks. I noticed my son could talk to me about his day just as easily when I was lying on the couch cradling a heating pad. I found out that in exchange for an extra hour of video gaming, my son would sweep and mop the kitchen while I took a nap. I realized if I went about it correctly, I could prepare dinner almost completely sitting down.
So that’s what I started doing. I figured out ways to do things sitting down. I began timing and scheduling my day to use my energy as efficiently as possible. I started showing my husband the new ways I had learned to do things. I talked to other parents with chronic illness, and I discovered they, too, had ingenious ways to get things done and be good to their kids.
At the time I had a little blog where I would chronicle the funny things that happened around my house. Through the blog I was beginning to find that if I could re-frame something unpleasant in a funny way, it was much easier to avoid the mires of self-pity that made life one long trip to the dentists’ office. The parents around me that were as sick as me or sicker seemed to have above-average senses of humor. They limped their way through life with determination and a steadfast refusal to take themselves seriously. These superwomen in comfy clothes somehow got everything done.
I watched all of this from the perspective of a nurse who has spent her career learning about controlling pain. Over time, the carnival that is the inside of my brain began to slowly assemble the data it was being fed. The new coping mechanisms for parenting through pain aligned themselves with the principles I learned in nursing. See, nursing is another field where weak and tired humans are asked to do the impossible flawlessly without a break. My body and mind have failed me, and I’m not able to be a nurse right now. But I did the impossible then, and I’m still doing the impossible, just like every other CI parent on the planet.
So going back to the “energy budget” concept. If you’re a sick parent, you have to make that budget stretch, just like every other budget in your life. That doesn’t mean that you and the people around you have to have less. It means that with a little creativity you can do more than you thought with less than you dreamed.
The first way to stretch that budget is to plug all the leaks. Leaks are parts of your daily routine that use more energy than they have to. Leaks are things healthy people usually don’t notice, because their funds are being regularly replaced the way they should be. Parents in pain can’t afford to have even a drop of their precious strength wasted on something that no one wants or needs. If no one notices or cares about having their clothes ironed, get yourself a bottle of wrinkle releaser and go take a nap! If your family doesn’t want complex home-cooked meals every night, order some pizza and give them vitamins.
Leaks can also be unfulfilled needs that we tend to ignore in our bodies. Hunger, thirst, fatigue, and pain can all cause a low-grade drain to our energy. Be vigilant about taking care of yourself. Medicate for pain or anxiety before going into intense situations, especially ones where your kids need you to be at your best.
Remember that although kids are whiny, instinctively selfish little people, they are also psychologically programmed to love you more than anything on the face of the planet. There is no love more complete, more selfless, than that of a parent and child. Let that love fill in the gaps when you can’t be perfect. They may be disappointed with canceled plans or frustrated with the differences between their lives and the lives of their friends, but as long as you keep a constant background dialogue of love, you can get them and yourself through anything.
Be honest with your kids about your health, especially when it has you feeling down. Hiding things from little ones doesn’t usually end well, so just be open about your struggles. My son began asking questions when he was about eleven or twelve. By then I’d begun to need more help with things I’d always insisted on doing myself, and he was noticing. So while I sat with him and taught him to help around the house, I talked to him about my body and why some days it seems fine but others I have trouble getting around. It was hard at first explaining it in a way that made sense to a kid, but I just slipped it into a hundred different conversations at every reasonable opportunity.
And it helped. I don’t expect every kid to be like Alex. They’ll have varying degrees of difficulty understanding and accepting the concept of chronic illness. Remember how hard it was for you to understand the permanence and indiscriminate meddling of your illness. But as he grew, he saw the truth of what I was telling him, and that was all he needed. He saw that I was trying my best. He saw that I was learning to deal with things differently. He also saw how deeply it touched me when he helped me. Even though he was required to do his chores just because his dad and I believe kids need chores, I thanked him often and from the bottom of my heart. When he couldn’t do his chores, or I helped him with them, I still told him how important he was to me. He knows my love for him isn’t dependent on what he can do for me, but there is none of the helplessness in the face of suffering that I see from other kids his age. He’s 15 now, and let me tell you, that kid walks tall. He has the same insecurities of any teenage boy, but he is secure in the fact that he can help the people around him. He’s compassionate, because he knows that everyone you see is fighting a private battle. He’s seen people criticize me, call me a hypochondriac, rail at me for using a handicapped spot, and tell me how delightfully easy my life is. He’s also seen how hard it is for me to do the simplest things. He’s seen the moments I don’t let most people see, moments when I give up, the times that I’ve broken down, the days I lash out at the people around me because of the pain inside me. He’s also seen me get up, make the most of it, choose to be happy, and find the joy in life. Kids watch us, and even if we choose not to tell them the truth with our words, we tell them truth with our day to day lives.
Encourage creative solutions. This one is difficult, especially for someone with less energy than the average bear. It’s also galling for a Southern girl who was taught to do everything I was told with an immediate and enthusiastic “Yes ma’am!” or “Yes sir!” But I’ve learned over the years that not only does creativity trump intelligence for problem solving, it also breeds enthusiasm and engagement. Anyone who has contact with the up-and-coming teenagers of the current generation knows that they don’t lack intelligence or work ethic, they simply lack enthusiasm. Well, let them solve their own problems. I’m not kidding. I’ve seen kids who’ve had their problems solved for them. While they may be excellent kids and turn out fine, their first instinct when they run up against a problem is to run back to their parent. My solution is to stand with my kids, shoulder to shoulder, and let them take the lead in working out a solution. Rather than expecting immediate, unquestioning, and exact obedience (which, let’s be honest, isnt’ that realistic anyway), if they come to me with a different solution they’d like to try, I do what I can to encourage it. Of course, there are situations where for safety or other considerations they need to do what I ask without negotiation. For these times, I tell them something along the lines of “Please just do exactly as I ask. If you think of a better way to do it, we can talk about it after and maybe try it next time, but this time just do what I’m telling you.” (or, in emergencies, saying the word “NOW!” at the top of my voice seems to work out fine).
Of course, both of my kids are arguers. They’re really, really intelligent so they have a lot of questions, and it took me a long time to learn that arguing is how they learn. It’s how they assert their independence, and how they find their limits. They would be that way no matter what my parenting style, though (I know because initially I tried the “do what I say when I say it without question” approach. The result was not a sliver less arguing and a lot more frustration and tears on all sides). I don’t have the strength to work against their nature, especially not when I see so many good and noble traits in them. So go with the flow. Figure out what YOUR kid needs, and put your precious energy into those specific needs.
Be patient with yourself and them. I was never called patient in my life until I married my husband and had two kids who both have anxiety and ADD. Did I mention my husband also has chronic pain, anxiety, and ADD? Lord help us. But I learned that in the battle to conserve energy, it is ALWAYS less draining to keep my cool than to lose it. It always takes less of my finite budget to take a deep breath and let things roll off. Slamming doors hurts my hands. Yelling makes my muscles hurt. Stomping around angry causes hip pain.
Please don’t think I’m some kind of level-five zen master who levitates through the house on a cloud of love and pixie farts. I’m a lunatic some days. But through that lunacy I’ve learned that love, honesty, and creativity can patch those energy draining holes and give you better access to what few meager resources you have.
Thanks for letting me share my story. You can email me at firstname.lastname@example.org or message me on Facebook under The Chronic Mama. I’m less fluent in twitter-ese and instagram, but if you don’t mind waiting for me to remember those platforms exist and check them you can contact me there. Twitter is @riskywords and IG is The Chronic Kitchen. Everybody take care of yourselves. You’re the only YOU you’ve got.
The Chronic Mama