Let’s just be really honest. NO ONE ever asks to live with pain. Whether it be the short term pain of an illness or Injury….Read More
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 email@example.com 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
🔹The NIH reports that 25.3 Million American adults suffer from daily pain. 🔹The NIH reports that 25.4 Million American Adults category 3 Pain (on a 1-4 scale).
🔹The NIH reports 14.4 Million American Adults category 4 Pain (on a 1-4 scale).
Chronic Pain is defined as an ongoing or recurrent pain, lasting beyond the usual course of an acute injury or illness or more than 3-6 months and which adversely affects the individual's well being.
🔹American adults with category 3-4 pain were more likely to
- Have worse health status
- Use more health care
- Suffer from more disability
If the above statistics weren't enough maybe the ones below will open you eyes.
It is said by the NIH that nearly 100 MILLION Americans suffer from chronic pain, & 1.5+ BILLION people worldwide suffer from chronic pain. Also 1 in 10 Americans report that they experienced pain daily for three months or more.
I know someone reading this is going to be thinking "Why, do I want to read another story about another "addict"?" Well, to that person I ask that you keep reading! Not all who live with chronic pain are addicted to narcotics and jonesing for the next high. There are SO very many of us who are NOT very far from being addicted and spend a great deal of time trying to spread the word about the use of legal pain medications. No matter how we chose to deal with the pain, we still have to live with chronic pain each and every day. Day in and day out with pain THAT....NEVER.....GOES......AWAY..... Chronic pain is about so much more than pain meds. Honestly, it is about finding the best way for each of us to live life with chronic pain. Trying to find a way to just survive each and everyday. Trying to just get through each hour, each day, each week, each month.
Here's a couple questions that get asked a lot! Do some choose to use legal pain medications to treat their pain, or do some choose to stay away from pain medications? The answer is easy! Yes, to both. Some use strictly pain medications, while others use a mix of holistic options and pain medications, and others chose solely they holistic methods. It's a personal choice that only you can make for yourself. Are some getting medications illegally?? Yes! But you can't judge all 100 million of us who deal with chronic pain in The US for the one (or more) bad apple you've come in contact with. You have to think about this. Would you want to live a life always in pain? Always hurting? Having to take the pain into account when planning anything, even just a trip to the grocery store because you never know when the meds might wear off or when the pain might become so unbearable that you can't finish whatever task or outing you're on.
I wish people would remember that I am still me. I am not lazy. I when folks(family, friends, strangers) think I am a burden. I feel guilty every time I say no to someone due to my health. Take the time to understand before you judge-Conversation doesn't always have to be health related. Lastly, it is not a competition who hurts more or is sick in some way. Complete strangers want to one up me at the doctors office - not impressed. ~ Tammy, Canada
People in general don't understand pain. Pain is something you feel when you stub your toe, twist your ankle, jam your finger or even for a few short days after surgery. But in general when they think pain, they think acute pain. Until you've live chronic pain it's not something you can wrap you mind around fully. You just can't understand that it's not something that just goes away in a few minutes or a couple hours or even a couple days. It may never go away. Ever. It may be something that we have to wake up to every day for the rest of our life.
We're not looking for sympathy, but a little empathy would be very appreciated! ~ Amanda, Ohio
All we want from our families, friends and the public as a whole is a little empathy. We just want people around us to show that they care. That they have an interest in learning about what we are going through on a daily basis. It means the WORLD to us when people ask questions about what we are going through and what they can do to help. And it means even more when they ask how our pain is. I can't even explain to you how much it means when someone asks that 5 word question. "How is your pain today!?"
"Even when I look normal, I am still in pain. On my worst days for chronic pain, I wore the most makeup. I put on my mask to fake being well, not fake being sick. I can't take pain pills due to my stomach problems, so I just have to do less and rest when I am in pain. I can work hard for a few days. But then I pay for it with my sore joints and have mandatory rest for a few days" Megan ~ Georgia
There are a lot of days I spend in pain, but you would never know it. I wake up and put my "cape" on and go about my day. I have a husband and three little people who depend on me to be there for them. Honestly if it were not for them I would wallow in my misery. Not every day is good, but there is something good in every day. Kyndle ~ Missouri
Megan & Kyndle hit the nail on the head when they both speak about their daily pain levels. As well as when they speak about how they deal with it. Like many, instead of saying anything they put on their CIW (chronic illness warrior) cape and fake it till they make it. There was a study done in 2012 on the Lupus Community by the American News Report. During this study it became clear that there is a true gap in communication between those with Lupus (and most likely all chronic Illnesses) and their families. Their study found that 87% of lupus patients downplayed their symptoms and Need in order to not upset their family members. In many cases they don't want to share how they feeling so they don't have to deal with looks of pity from others. Or hear the "Oh you poor thing!" That's not genuine. But mostly people don't want to worry and stress their families. If they don't tell them how bad it really is then their family won't be able to worry as much. It's awful that a person can't be honest about how they are feeling and where their pain level-is at for fear of upsetting their friends and family. We (those with chronic diseases) should never have to or choose to hide our pain from anyone. But especially from those we are closest to us.
Keep in mind that of all the chronically ill patients that take pain medications only 5% become addicts. When hearing about the opioid crisis, sadly they have combined illegal and legal substances together. Most of the deaths that are occurring are those due to illegal substances. Chronic patients are being denied medications because of this serious problem. ~Amy, Michigan
The CDC just recently to release more accurate numbers than those that had been reported. In the 2018 Annual Surveillance Report of Drug Related Risks & Outcomes by The Centers for Disease Control they state that "14,487 out of a total of 325.7 MILLION people in US died from LEGAL PRESCRIPTION opioids." That's .000004% of the population. This is much less than the numbers we have been hearing as lately where the CDC has combined death by legal prescription meds & death by illegal illicit drugs. Is the updated number too many? Yes, honestly even one is too many. But it is not quite the problem that is it being made to seem it is. People have been using pain relieving products for YEARS, more than we can even begin to conceive I'm sure. Are the products available now a thousand (or more) times stronger than the stuff our Great-Grandparents used. No doubt! With evolution and change of society comes evolution and change in medicine. I think for most of us that is the way we would like it to be. Can you imagine dealing with all the conditions and injuries we have to deal with or potentially deal with now but only having access to the pain relieving methods that they used in 1800's?? No, it's not effective. Are there people who abuse narcotics? Absolutely! With just about anything you can find abuse of it in some way. With the evolution of cars comes the abuse of speed. With the evolution of technology comes cyber crimes. I digress, there always has been and always will be abuse of medication in some meaning of the word. I just wish everyone wouldn't assume that just because you have the medication prescribed to you that you are an addict.
I never knew pain, until Lupus knocked me down and I never knew strength until I got back up" ~Christall, Missouri
Chronic Pain SURVIVORS are just that!! Survivors, because we survive each and every day to live another day to tell our tale. Myself and many other United States Pain Foundation, WEGO, Chronic Disease Coalition Advocates, and many many more Advocates work so hard each and every month to share stories of chronic pain survivors and to show that not all those who take pain medications are doing so illegally or are addicted to them. Many of us take pain medications to get through the day but many have also made the choice to use other available methods. Really we just do what we have to do to get by! We want to spread the word this month especially as September is Pain Awareness Month that there are all KINDS of chronic pain conditions. Many that you and I might never even consider. So please if you get nothing else from today I hope you get this. If you meet someone somewhere and learn that they deal with daily chronic pain don't assume the worst. Don't just jump to the fact that they are an addict simply because they choose to use medication to treat their gain. Or that they are going to over dose because in most cases that's not the case. We are all just trying to survive another day with our chronic pain.
* This is about my personal experience not a topic to be debated about the use of narcotics. I went to my local ER last week because I had been dealing with a migraine for almost two weeks. Sadly, is not uncommon for me to end up in the ER for a migraine. In fact that usually happens at least a handful of times every year. Unfortunately I generally end up being admitted for said migraine at least a couple times a year. So I know how things work in this ER and Hospital. Especially since I actually worked as an RN in this hospital for 9 years. But this time was different. I had the worst experience I have ever had in that hospital. I have NEVER been treated as poorly by as many medical professionals in such a short time span as I did that visit. And that's saying something because over the last five years I have been there MANY times and have been cared for by MANY nurses, physicians and other providers. Due to the fact that I am no stranger to the hospital, and the fact that I have MULTIPLE invisible illnesses I am not unfamiliar with being looked at like I am drug seeker. But this visit took that to a WHOLE NEW LEVEL.
I had barely made it into the room in the Emergency Room when this male who I assumed was a nurse came in and without telling me who he was or anything his first words were "I see you take X & Y at home for pain did you try either of those?" Okay, fair question. I calmly explained that they can cause rebound headaches so I don't always try them for headaches. He proceeded to tell me that I wasn't going to be receiving any narcotics while I was in the ER that day. He then went on to ask me what has worked on my migraines in the past. My mom answered that question as I was not totally able to think straight after that long with a migraine. She told him that a low dose of Ketamine has worked for me really well for me in the last. Continuing on to tell him the last time I received it the nurse had never heard of it being used for migraines either so the Doctor took him aside and showed him literature on the studies that have been done. Those studies show that Ketamine at a low dose works well for migraines. And before she finished her sentence the nurse shot that down and said there was "NO WAY" I would be getting that today because its a sedative and not for migraines.. At this point I didn't know what to even think. Honestly, I was ready to leave and say forget it. But that wasn't the last run in with that nurse I would have before I was admitted.
I had a port placed three years ago due to the fact that I don't have good veins anyway and then I took years of high dose steroids which killed the veins I did have. So I always request that my port be accessed. He REFUSED. He said I had great veins and placed a peripheral. I wasn't in any condition to argue. Because he was so asinine I ended up with five sticks which should have been one. But I did enjoy when the ER doctor put him in his place and let him know that he would in fact be giving me Ketamine for my migraine. HA!!!
I was really hoping that the Ketamine would work like it had in the past and I would be able to go home. But it didn't....... So they called a hospitalist to come in and see me so I could be admitted to the hospital. As he walks in the room he introduces himself and announces "I DO NOT GIVE NARCOTICS FOR HEADACHES, JUST SO YOU KNOW! Again, that word had not come out of my mouth since I arrived. He like the nurse was making an assumption of why I was there based on what he saw on the chart, without actually seeing or talking to the person behind the medical record. I really hadn't even thought about asking for any narcotics because I know that it can actually make a headache worse. He asks me a few questions and says he won't be admitting me its a neurology issues, and leaves. The nurse I loved so much comes back a few minutes later to tell me that they were taking me upstairs. When I asked who the admitting doctor was they told me it was Dr. Pleasant Pants that I had just seen. I was less than thrilled.
Once I was taken upstairs and settled into my room, a neurology doctor who I didn't know showed up to see me. And AGAIN for the THIRD time in less than three hours, this doctor identifies herself and before I can say anything she says "I DO NOT GIVE NARCOTICS FOR MIGRAINES, JUST SO YOU KNOW." Yet again I had never asked for an narcotics or even actually thought about asking for one. Like the two before her she was also making an assumption about why I was there and what I wanted before even seeing me. By this point in the day I had nothing to say I was so blown away that I just looked at her. I didn't have anything to say I just agreed with her plan of care and went on with it. At that point I would have tried anything to get the headache to go away. And anything I would have said in that moment to this doctor would not have been nice or helped my case in any way.
Sadly, during my entire four day stay in the hospital there was only one nurse that would actually give me my home pain meds. In fact she actually brought them to me without me even having to ask for them. The other nurses didn't think I needed them because I was getting "the migraine cocktail!" And that is true, I didn't need my home meds for the headache, I needed them for the rest of my body. All the other parts that hurt besides my head.
I know, everyone is all in an uproar by the new changes that may be coming with narcotics and the doctors are being more careful with what they prescribe and to who. But anyone could look at my record if they really took the time and see that there is more than enough reason for one or even both of the medications I take. And if they looked more closely they would also see that my scripts last me on average 45 days rather than 30 because I don't take them as often as they are prescribed. If they took time to look further than the med list they would see a person. A person who believe it or doesn't really care for the way pain medicine makes me feel. I don't enjoy being nauseated and itchy when I am already itchy all the time from my illness.
It just frustrates me to no end that the people in the world who have abused the drugs have totally messed things up for those of us who need them. Because people choose to take narcotics to get high it is becoming increasingly hard to get pain meds for people who really truly need them. Many of us need something to be able to get out of bed in the morning. Or to take a shower, or to do any daily task. But because of those idiots many are being refused. And sadly there have been a number of suicides in the chronic illness community due to the fact that they were refused the pain meds they relied on.
I have not shared this earlier because it took me awhile to process it. To really think about how it made me feel and how I could share this best to get my point across without sounding like I was whining. I just wish medical providers would look further than a med list. Or even the list of diagnoses. Behind those things there are people, people who never asked for these life altering diseases, people who didn't ever do anything to deserve the fact that we are living in chronic pain. Many of us who really need the pain meds would not be able to function or have any semblance of a normal life. And if it comes to the point when none of us have access to those meds a lot of us wont be able to get out of bed, much less work and be a productive member of society. Many of us would gladly trade every last pain pill for the ability to go back to the life we had before we got sick. If i could turn in my pain meds and magically be healed i would be the first in line. Sadly, that doesn't happen! I can't speak for all of the people with chronic pain due to a chronic illness, but personally I have tried all other methods of pain relief. I have tried meditation, acupuncture, massage, physical therapy, water therapy, over the counter meds, pain rubs, heat, ice. You name it, I have probably tried and it just doesn't work the same way that pain medicine does.
At this point the only thing I think we can really do is to start writing letters. Letters to those who represent us in our local, state and federal government. I am not a political person and I normally don't include things like this in my blog but I think this is all we have left. I think its time for a CALL TO ACTION for all of us who suffer from chronic pain. We have to be proactive and start writing letters, telling our stories and getting them out there. If we don't share them, who will ever know what we really live through on a daily basis. They need to know that we are being treated the same as drug seekers, the same as drug addicts or not being treated at all. They need to know that we didn't choose this life but it has happened and we are doing out best to make the best out of the hand we were dealt and having out pain medications taken away is not the way to do it.
I know in the past people have probably assumed I was drug seeking because when you present to the ER, for a migraine or back pain or a lupus flare that causes pain all over the body they can't see it. They don't see our pain on a lab test or an X-ray so they just assume that we are just there for the meds. When it reality we just want to do whatever it takes to get the pain away even if that's just a shot of steroid. Healthcare workers have sadly become so jaded by the "opioid crisis" that they can't see past it. I know from many years of experience as a nurse that it is easy to assume that drug seeking is occurring when someone asks for pain medicine without asking any further questions. We have to start advocating for ourselves, as I always say if we don't advocate for ourselves no one else will. Sadly, I did not do a good job of doing that this time around because I felt so bad. But I wont stand to be treated like this again.
I am lucky to have a multiple people who act as advocates for me for, will stand up and fight for me when I can't. My Mom has become my biggest advocate as she has sat in the ER waiting rooms and at my bedside hours in end without complaint. Just to make sure that i get what I need. Many times she is my voice when I can't speak up for myself. If you are in a situation where you don't feel as though you can stand up for yourself take someone with you. If you can, take a family member or a friend with you to the ER or to the Dr to help make sure you get the treatment and care that deserve.
If you need any help writing letters to your representatives or finding who your representatives are please let me know and I will be more than happy to help you however I can
Please take the time to also share this story in your communities. We have to get our stories out there, we have to find a way to be heard.
Exercise is not something I have talked a lot about in previous posts. Because it's not something I have been doing. And it's not something I enjoy, or to be honest know that much about. But honestly it's time! The cardiologist cleared my heart and we are looking at my lungs. But recently a doctor that I love and respect very much reminded me that the shortness of breath and high heart rate I have been experiencing could be something as simple as deconditioning. So it's time for me to get back to exercising. And to make getting fit a priority. As I started researching how I should get back into the fitness world I thought others could use the information as well. So today I wanted to share a bit of information on what kind of exercise is good for those with chronic illness/pain and joint issues.
Before we get into any suggestions about exercise I wanted to remind you about a few things.
- Before beginning any exercise program you should ALWAYS contact your physician to get the okay.
- You should always start with low impact and go slow! You can increase your impact and intensity slowly.
- Always move at your own pace and never try to keep up with someone you are with or with a class.
- Lastly if your pain level increases by more than 2 points from where it was at the start of the exercise you should stop &/or modify that specific exercise to try to ensure that you don't cause a flare.
It is recommend that everyone do a combination of stretching exercises, strengthening exercises and cardiovascular exercises! Stretching will help to increase flexibility, loosen any tight or stiff muscles, as well as improve range of motion. Everyone should be doing some stretching EVERYDAY!! Strengthening will help to build up muscle strength. And cardiovascular exercise has a plethora of healing benefits. Now let's look at what specific cardiovascular or aerobic exercises you could be doing.
1. Walking - is an excellent form of light aerobic exercise. It helps to bring oxygen and nutrients to your muscles, helps rebuild stamina, boosts energy, and will reduce stiffness and pain. Other options of low impact aerobic exercises would be riding a stationary bike or using an elliptical.
2. Yoga - Practice the most gentle kind of yoga you can, preferably the Hatha form of yoga. This kind of yoga is a combination of postures, breathing, and meditation that will reduce the physical and physiological symptoms of pain. A study that was published in the Journal of Pain states that participants reported significantly less pain when doing yoga. Yoga will also help to build endurance and energy while improving sleep and concentration.
3. Tai Chi - The benefits seen with tai chi are very similar to those seen in those who do yoga. Tai Chi is a very low impact kind of exercise where the participants slowly, gradually and gracefully preform a series of movements. Studies show that this form of exercise may even be better to relieve fibromyalgia pain than yoga!
4. Swimming & Water Aerobics - Any exercise in the water is good for people with chronic pain or joint issues. It is also an excellent alternative to walking for those with mobility issues. Being in the water provides a low-impact cardiovascular exercise that helps to keep you moving without putting added stress on joints and muscles.
The last point I want to make applies to all people. Not just those who are chronically ill. It is something I have struggled with love you whole life not just the last six years since I've been diagnosed. I don't know about all of you but if I don't have an accountability partner I am less likely to stay accountable and stay on track. If I have someone who is checking in on me a few times a week saying hey how is your diet, and how is your exercise routine going? I am more likely to actually stay on top of those things. So I strongly recommend finding someone in your life to be that person for you. So make sure you find someone to help you stay on track.
We took a brief look at some exercises that are good for those who have chronic pain or have joint issues. So maybe this will give you an idea of where you could start. I did not cover stretching directly because most people have a basic idea of how to stretch. I also didn't cover strength training, because it can be very complicated and vary dramatically from one person to the next. However, there are articles for reference on both below. If you do plan on starting a new exercise plan please let me know what you plan on doing. I know for me having an accountability partner works best for me. If I don't have someone to keep me accountable then I won't stick to my plan as well as I do with that partner. So that is also something for you to keep in mind. If I can help you in any way please let me know. I would be very happy to help!!! I hope this helps some of you. Below are some articles for references on exercise with chronic illness for you.
Pain..... is something I deal with daily. And I am guessing that many of you do as well! It has just become a part of our daily lives and something many of us don't give a second thought to. And most of us would give anything to have one pain free day where nothing hurt at all without having to take a pill to get that way. That being said it has become a BATTLE for some to actually get the medicine that they need to treat said pain. Thanks to all those who are abusing pain medicine it makes those of us who actually battle chronic pain to also be viewed as an addict to some care providers. It is so sad that people who have chronic pain and live in pain everyday have to jump through such hoops just to get the medicine that we need to be able to function. I usually try to stay away from the highly debated issues like this, but I read something that really struck a chord with me this weekend. A fellow Lupie posted that she got to the point where she could no longer handle her pain at home with all the alternative options, and ibuprofen she has at home. So she went to the ER, simply because she didn't know what else to do. And of course because her primary complaint was pain, she was looked at by some of the care providers that she was simply drug seeking. And I know she is not alone in this I know this happens all the time. It has happened to me when I went in to the ER with a Hemiplegic migraine, there was no test to show that I was truly in pain so its easy to assume that I really just want pain medications. I even had one doctor tell me that I was just a hypochondriac and that there was no reason for me to be seeking treatment in HIS ER.
That's the whole problem with autoimmune conditions and chronic pain syndrome, there is not always a blood test or imaging that will show that the patient is truly hurting. Most doctors don't understand autoimmune conditions therefore they don't understand why we are in pain. If they can't see a lab result change or something on an MRI or CT Scan to explain the pain they just don't get it. And it frustrates me to no end that I can't be honest about my pain with some of my doctors without them looking at me and thinking I just want the drugs. When in all reality I just want a day where I can wake up and function like a normal person. I don't like how the pain medications make me feel but if that is what I have to do to function then so be it. I think many of you would agree with me when I say I just want a day without pain. I would give almost anything to have a day, a week, a whole seven days where I didn't hurt somewhere and I could do all the things that I want to do without having to spend the next day(s) in bed.
The government at the local, state and federal levels are trying to do what they can to change how pain medications are prescribed and filled to decrease the level of abuse. In some states you are only allowed a seven day prescription no matter what the reason for needing pain medication is. In other places you have to give a urine sample every thirty days before you can get a new script to show that you are really taking the medicine and not selling it. Pharmacies are now being linked in many states throughout their local areas to try to prevent those abusing drugs from doctor hopping and having multiple scripts from multiple different doctors. While all of this is positive and will hopefully start to decrease the abuse of pain killers. It has actually made it harder for those of us who really need it to function. We are being made to jump through more hoops then ever before.
The real question I guess is how do we change the views of these care providers, especially ER providers. Where they see a large amount of drug seekers everyday. What can we do to prove to them that we aren't wanting more and more medications, that we just want help getting through this flare up. Even with our conditions in our charts that say LUPUS, MIGRAINES, ENDOMETRIOSIS or whatever conditions you have that cause pain, they still often times wonder. I have thought about this a lot and have come to the conclusion that we will never change the way they look at us. We just have to have tough skin and prove to them that we don't want an extra script or something new to take at home, we just needs something to break the cycle we are in. Maybe one day more doctors and care providers will start to understand the conditions that cause chronic pain. Until then we are stuck in this horrible rut and just have to prove our self to each new provider, and show them who we are and what we stand for.