Despite it All

And here you are living, despite it all. -Rupi Kaur

When you are struggling with mental illness and/or chronic illness and/or chronic pain, life can be overwhelming. Every day feels like a battle with mood or symptoms that keep you from feeling your best. You struggle with guilt over not being able to do the things you once did, or not being able to do them as often, or sometimes, criticism from friends/loved ones who don’t understand this seemingly new person that you’ve become, when in actuality, the imposter was that person they saw before it became too exhausting to put on a façade of wellness. Too, there’s confusion about how some days you might actually be feeling well enough to be a glimpse of that person you were, smile, be happy and people wonder, then, why you can’t be that person all the time. And if that weren’t enough, there are those who will criticize you or question the legitimacy of your illness because you have days where you are happy.

But this post is not about all that. It is about this:

“And here you are living, despite it all.”

If you can, take a moment and consider everything you have gone through in your life. Think about the stress and anxiety you have felt before knowing a diagnosis or the continued stress you are feeling because you have yet gone un-diagnosed; think about all the anxiety and pain your mental illness has caused you; think about all the symptoms you’ve had to deal with because of your chronic illness and think about the physical pain you’ve experienced because of your chronic pain.

You are still here, despite it all. You are alive and important to those around you, and you have gifts of your experience and perseverance that you can pass on to others. You didn’t give up, and even if you did for a while, you were able to push through and continue. These experiences can sometimes be gutting but every day you fight back you are giving yourself the opportunity to live and touch other lives by connecting with them through similar experiences. It doesn’t mean you have to start a blog or try to become an influencer on Twitter or TikTok, but just opening yourself up to the idea of sharing your experience with someone who you think might benefit from hearing it. Sometimes, it can be the simplest act that can save someone from the edge of despair, and because we have been there, we might see the signs before someone else notices.

It’s not always easy to sit down and reflect on everything that has happened to you or is still happening to you and feel good about still being here. There are times where it’s such a struggle and such a painful existence that you wish it were over and yet you fight because there’s that shred of hope that tomorrow or a month from now won’t be as bad. You look for things that bring you joy and peace and you hang on to that for dear life. And sometimes, you are lucky enough to have a few hours, or a day or a week where you feel normal and unburdened by your health. You are able to enjoy things and you are cognizant of that and you savor each and every moment. These are the things we have to pass on to people who find themselves in similar shoes. The hope that is possible. The hope that can be. The hope that despite it all, you will survive and the hope that despite it all you will thrive.

The “little” Lies We Tell Ourself

“I’m okay.” “I feel fine.” “I can power through this headache.” “I’ll just pretend my tummy doesn’t hurt.” “I’m not depressed.” “I’m not manic.” “I’m over exaggerating how much I hurt.” And so on…

These are just a few of the “little” lies we tell ourselves daily to get through the day and not feel like we’ve failed somehow, or that we tell ourselves to power through our day and not have to lay down and rest. 

“I’m normal. I can do anything anyone else can.” 

I tell this to myself repeatedly, like a mantra. I envision myself the way I was in my 20’s when I felt bad but the feeling had no name and I had little children and a house and there was no time to worry about I felt; when I was too preoccupied with making sure everyone else was cared for and that they had lunches for school and did their homework. I will sometimes wonder if I was that busy again, would I have time to dwell on all my ailments or would I just push through and not worry? I will contemplate life without knowing about my chronic illness- what if they didn’t have a name? Would I just shrug it off and pluck away at life quietly? Or would it continue to be so debilitating? 

I’m a Star Wars Nerd.

“You aren’t as bad off as some…”

Even though I advocate others to never say this to someone with chronic illness, in the back of my head I will hear it. I will see others who are chronically ill, and how they can do so much more than I can and I become frustrated. It makes me feel like I have to be comparable to them, which is something I tell people with chronic illness NOT to do because it just isn’t healthy. Don’t compete with those others you follow on Instagram or Twitter or that you know personally. Even those of us with the same illnesses will experience it differently because we are unique. It doesn’t do us any good to try to keep up with someone else and can make our life worse. Just do you. 

“Feeling pretty good- must do everything I need to get done today because tomorrow I may feel like hell.” 

Why, oh why, oh why, do I tell myself this? I could just facepalm every time I do it because I know I’m going to feel worse. But, Jesus H. Roosevelt Christ! – (who gets that reference?) it never fails that I will go crazy cleaning and then regret it afterwards. It sucks. The ramifications of overdoing it should be enough to deter anyone from overdoing it ever again, and yet, NOPE, I still do it. Am I alone? This is something else I’ve preached in my blogs because I know in my head how nonconstructive it is to do this- how much better it is for your body to do a little bit at a time, and yet when I feel good, there is this intoxicating lure to clean and make sure everything is sparkly, until I just flop. 

Things just get on my nerves and I have to do it. It’s like Satan whispering in my ear.

“I’m FINE

Or as my husband will tell me, “Fucked up, Insecure, Neurotic and Emotional?” To which I will just give him the side-eye and huff. He knows I’m not “fine” and I know I’m not “fine” but I continue with the pretence because surely if I say it enough I will “will to be true.” I’ve done this repeatedly, with regards not only to my physical health but my mental health too. “I’m fine. I’m not depressed.” Or “I’m fine, I’m not manic.” But that “little” lie can do BIG damage, especially with regards to our mental health and trying to deceive yourself that you are okay and don’t need to ask for help or tweak your meds. In the long run, it’s just safer, to be honest about how you are feeling. Talk to your doc about feeling worse because of new symptoms, while it may make us feel “low-key hypochondriac”, new symptoms or feeling worse could be a real sign something else is wrong. 

Still a favourite movie. Love Melman.

It’s not easy being chronically ill. We want to be like everyone else, normal, even though that is an illusion. Normal truly doesn’t exist and everyone out there has their own, personal struggle. We tell ourselves the lies because we want to get through our day; because we need to get through work, we want to have enough energy to advocate; we want to give other people (friends and family) hope and reduce their worry about how we are feeling and we want to have fun. The list of reasons we may lie to ourselves and others goes on. Everyone has a different motivation for what they do, but I feel much of it stems from guilt. Guilt about not being who we once were, for letting people down when we can’t go somewhere, or when we can’t clean or cook the way we once did. There’s a lot of guilt because we remember ourselves before chronic illness- even if it’s just a glimmer- and we wish we could be that person. And if some has spent the entirety of their lives with chronic illness and can’t remember a day when they weren’t sick, they watch people who live their lives in healthy bodies and want to be them. They will even pretend they are not sick so they can do the things their friends are doing and not be left out. It’s difficult being a prisoner in your own body because we have our minds that are vital and healthy and allow us to imagine life without sickness- and that imagining can almost be cruel. 

Hahaha! Couldn’t help myself. I always think, “Here’s your lasagna and a nice helping of guilt!”

I’m not telling you not to tell those “little lies” to yourself. We’re going to do it, but try to recognise it when you do- acknowledge it and move on. Try to carve out time when you can be honest to yourself about how you are feeling and what is going on in your health that should be brought to your doctor’s attention and then, go back to life. Your health is the most important thing and if you continue a habit of taking advantage of yourself and asking your body to do more than it’s capable of, you may end up in worse shape than you originally started. No matter what you may think, you are important.

Yes, you are.

8 Confessions of Living With a Chronic Illness

Me confessing to you.
  • I Always Feel Guilty: Yes, always. I feel guilty because I don’t visit with people I care about. I feel guilty because I rely on so many people for so many different things. I feel guilty when I don’t cook a decent dinner. I feel guilty because my house isn’t clean enough. I feel guilty because I can’t walk my dogs as much as I would like to. I feel guilty because I can’t do as much yoga as I would like and sometimes, I need 3-4 days to recover from one 30-minute class and that class isn’t hard-core yoga. I feel guilty because my specialised diet forces my husband and family to go without things they enjoy. After all, it would wreck me to cook two meals. I feel guilty because I can’t work. I feel guilty because I can never say to someone that I feel 100% wonderful. I feel guilty because my mental health sucks. I feel guilty and sad because I have passed so many of these genes to my children and they suffer because of it. I feel guilty because I often lie about how I feel, so I won’t worry people. I feel guilty. This only covers a small portion of my feelings, but it can become overwhelming. 
  • I Am Frightened of My Future: My husband is getting close to retirement age. We are steady planning out the future; where we want to live, what kind of house we will purchase and how we’d like to decorate (OK, how I would like to decorate.) We’re both so excited about it and doing things we like to do together, without the children. But when he brings things up, I realise I am terrified. What if I can’t do all the things we’ve been dreaming of? What if I am not there? These are things that could happen to anyone; these are things that have happened to people and I know I can’t predict the future, but I still find the thoughts of my future terrifying. I am a chronic pain patient and with “opioid hysteria” and yes, I will concede there is a problem with certain drugs and those who have abused them because they were misguided by a doctor, there are still those of us who very much need them. But we’re being punished and many have died because they have been left defenseless against their pain and quickly over-run by it. Our resources for pain management because more scarce and I find it as much a tragedy when someone is left to suffer in pain as when someone becomes addicted to the drugs that were supposed to help them. 
  • I Feel Like I am Alone: Logically, I know this isn’t the case. I have friends and loved ones who care about me. I have a truly amazing husband, who I adore and I know adores me. But no one truly gets it. And, while I have many on social media who do understand because they are in the same situation, sometimes you wish you could hang out with someone in that very same place, so you can feel at ease. It’s difficult for me to make plans with people (family or not) because I can’t predict how I am going to feel in the future. It’s always a day-to-day thing and you end up feeling bad when you can’t go somewhere you promised you’d go, or have to cancel plans. Funny thing is, you end up not having to worry too much about it because most people just get tired of it and stop calling and hanging out. 
Me lonely
  • I Feel Like People Don’t Believe I am Sick, Because I Don’t Look Sick: I wish, sometimes, that I looked as sick as I feel- sometimes. The only thing I have going for me is that I don’t look sick or my age. The downside is that no one can see the crumbling immune system that is mine, and no one can see the pain I am in daily, which gives people the false idea that I am just fine. When I remind people that I hurt, or can’t do it because I don’t feel well, I feel like there is a tiny part of them that doesn’t believe me or thinks I am doing it just so I can get out of something. This generally leads me to go on a sporadic flurry of doing chores until I fall over dead because I want to feel useful, despite knowing that my body just can’t keep up sometimes. It’s a vicious cycle that while I have even preached on my blog about moderation and doing what you can, I’m terrible and almost incapable of following myself. 
  • Not All Doctors Understand (but I am grateful for the ones who do): We’ve all been there with doctors ignoring our pleas for help and giving us a litany of excuses as to why we feel the way we do, which can range from “it’s all in our head” to “you need to exercise more.” It can leave us feeling like we are crazy. We know our body and no one should make us doubt our gut. It makes me so angry that I wasted so much time with so many doctors because I chose to believe them blindly. After all, they wore the white coat and had all that schooling. Surely, they have to know, right? Having been writing now for a few years and learning how little “schooling” doctors receive on autoimmune illness, rare illnesses and chronic pain issues, it makes a lot of sense as to why they don’t always pick up on the signs. However, you have to do your due diligence and fight for yourself until you find a doctor who is willing to listen and take the time to figure out what is going on with you. That may mean a rheumatologist, it may mean a neurologist, it may mean a gastroenterologist for you. When you find that doctor, don’t let them go and be grateful that they chose to listen. 
Doctors
  • I Feel Like a Failure: Sometimes, I do. I knew this isn’t an exclusive feeling to those with chronic illness/pain, but the reason I feel like a failure is directly related to those things. I feel like a failure because I haven’t finished school. I feel like a failure because I can’t do many of the things that those in my age group are doing or have done because of my chronic illness. I watch their feeds on Facebook or Imagine Chat and I see these amazing vacations or doing marathons, going hiking, excelling at their job, and it hurts a little. I try to look at those things I have been able to accomplish and feel proud of myself. I remind myself that we are all on a different journey. But it’s still difficult. 
  • I Almost Always Feel Judged Because I Take Opioids: Ugh. This is huge for me. I’ve written about it before here: https://lovekarmafood.com/2019/06/25/i-am-an-un-apologetic-opioid-patient/ However, it’s difficult being a chronic patient who takes opioids in this age of “opioid addiction and hysteria.” I don’t like to feel judged and look on with disdain because I take opioids, and I don’t like to feel like I am contributing to an epidemic that was never my fault. Everyone is different and, unfortunately, there are people whose body chemistry make them more vulnerable to addiction. I am grateful that I am not predisposed to that vulnerability and in the 4 years that I have been using opioids to help me manage my pain I’ve never had a problem. I know I am lucky. What I don’t think, is that I should be judged as though addiction is lurking behind some future door; without opioids, I would not be here.
Opioids
  • I Am Almost Always in Pain: This is not an over-exaggeration of my situation or the situation of many of us with chronic illness/pain. Pain is ever-present. Even with the medication, I am given I am still in pain. There is a reason they call it “pain management.” Every day finds me with some amount of pain and with the meds, I am given it is managed, somewhat. There are days where there is a perfect storm of symptoms and my pain crosses that threshold of managed to unmanageable, but gratefully, those days are fewer because of the pain meds I am given. There is an idea that because I am in pain every day that I should be used to it, but that is wholly untrue. People don’t get used to being poor or hungry or abused. Each day remains a struggle. 
Ouchie Pain

I’m Not Used to It

There are some out there in the land of healthy who believe that because we’ve been in chronic pain and chronically ill (or perhaps one or the other), for X- amount of time, that we should be used to the constant torment. I’m here to tell you that this is a false-hood. We don’t become used to our situation simply because we have been in the same situation for years- we adapt. Adapting here means that we do things to make our lives easier; we adjust how we sleep in order to attempt a restful night, we shorten our work-days in order to ease the stress of long days on bodies that are already stressed from illness or pain; we change our diets to attempt to quiet the wrath of symptoms for digestive disorders; we take supplements in attempt to strengthen our weakened immune systems; we do so many things in a futile attempt to lessen the wrath of pain and illness, but we never, ever get used to it.

I envy this kind of sleep.

In some ways I can understand the logic behind that particular thinking. When we do things over and over again, for example exercise, we become accustom to how it feels. Eventually, we aren’t as sore as we were the first time, we hit the gym or when we attempted yoga for the first time. Our muscles become accustomed to the rigors of lifting weights or doing planks or squats. But chronic illness and chronic pain are just not the same. It doesn’t matter how many times I get a migraine, it’s always like the first time. It doesn’t matter how often my Crohn’s flares up; it always feels like an assault on my intestines. I am in chronic pain all the time from the fibro and back issues I have, not to mention the pain from the rheumatoid arthritis and while some days might be a little easier, it’s never something I get used to. It’s frustrating and painful and it simply takes so much out of you to just try and function every day. I am always finding myself lamenting the body I used to have (and no, I don’t mean figure-wise), and wishing that I could do the things and be the person I was.

Yoga is great, but does come with consequences, no matter how much I do.

I want people who don’t suffer from chronic illness and chronic pain to know that we never become used to this state of being. That every day is a challenge to simply function on a semi-normal basis. That you don’t have pain and symptoms from your chronic illness for 15 years and just become used to it over time. Our bodies are not static and every day presents new challenges and sometimes, new symptoms and frustrations. Pain medicine is something that doesn’t always work or only takes the edge off the pain leaving you at a seven rather than at a nine. It’s having side effects from the medication that is supposed to be helping you, or having to determine if it’s worth trying certain medications because of the side effects associated with that drug. It’s missing out on going out with friends (if we have any at all, because most people become tired with waiting around for us to feel better), it’s missing on going to events because we suddenly flare up, it’s the anxiety that we have because of our illness and pain (which exacerbates anxiety that we may have already), and it’s the surgeries that we may have in order to try and help our situation that sometimes ends up making us worse. No, we do not ever get used to it.

Oh the reality…

In finality, I offer this: if you are a family member or friend to someone suffering from chronic illness or chronic pain, try to understand them better; try to understand what it is they are going through better; be a better friend or sister, brother, mom or dad. Our lives are complicated and messy and we didn’t ask for this.

Sadly, so very true!

Thank you for reading, sharing and following my blog. It really means the world to me.

You Don’t Adjust You Just Live

You’ll adjust to the pain

Five years later…

Tell me when I’m going to adjust? I don’t think there’s any way to adjust to chronic illness. I think it’s just one enormous roller coaster ride you have to brace yourself for and hope for the best. When you reach the top of one peak, you stare down and close your eyes and when it shoots down, you scream, hoping nothing will happen. You hope the car won’t skid off the tracks and that you won’t go flying out of your little, boxcar. You hope your blood pressure and your heart can take the whips and bends and the peaks and slopes. And it will never be when you expect.

screamorenjoy

Tell me when I’m going to adjust? To the days when I feel so badly that I don’t want to move from the couch? Where getting up to fix breakfast feels like a monumental task set forth by the Gods to Hercules himself, and I’m there in his stead looking dazed and confused? When I’m feeling so lethargic in my brain as I sit down to write, that I feel like I need a cattle prod to tease my brain awake and even then, it’s yawning and stretching without any sign of life, leaving me there to stare blankly at a page on the screen wondering if I’ll be productive or not today.

chroniccat

Tell me when I’m going to adjust? To the ever-multiplying issues of what began as one chronic illness, that is now eight chronic issues. How do I adjust to my life when some of these issues are progressive? When walking with a cane now, and sometimes even needing a wheelchair will mean needing a wheelchair more than needing the cane later on in my life? How do you adjust? I read something, somewhere, talking about how older people with chronic illnesses have at least been able to make memories, whereas young people have not been able to do that. But where is the line? Where is the cut off of ample memories? Have I made enough memories 35 when all this started? Or 40 when it started to get bad? Or 45 when I’ve been reduced to the cane and wheelchair when I need? When is the cut off for memory-making?

memories

Tell me when I’m going to adjust? To the ever-present, every increasing, pain that is in my life and that has control over every facet of my life in ways that I never dreamt of. Pain, that was once something that I dealt with on a localised basis, mainly in just my head, which was enough on its own to knock me down for two weeks sometimes, if the migraine was that bad, has now become something I deal with in multiple areas, where the pain doesn’t go away and that I live with 24/7. I never, in any terrifying dream, thought it possible to exist in the manner I find myself existing, and yet, here I am. But I wouldn’t call it adjusting. Adjusting implies that you’ve found some balance in your life with your condition and there is no balance. It’s just life on one big see-saw. You’re either up or you’re down.

seesaw2

Tell me when I’m going to adjust? Friends will understand and so will family. They will adjust to your life as you know it and they will support you. Tell me when that will happen? My family, for the most part, understands, but adjust? I think they have adjusted about as well as I have. And the kids- the kids shouldn’t have to adjust to life with a mom who can’t participate in life the way other moms can. It sucks. My kids have taken on like as caretaker for me. They drive around Miss Daisy. They worry about their mom all the time. It sucks. My friends? I don’t have any outside of my computer. They all left. They couldn’t deal with a sick friend. They couldn’t deal with someone who maybe needs to cancel plans at the last minute, or who can’t eat the same things or can’t jump around and do crazy things. I probably have more in common with folks in a Senior Living Home (and that is not a dig, I’ve actually always got on better with people older than me- the plague of being an only, imaginative, sensitive, intuitive INFJ-T, child). Even now that my children are adults, it’s difficult to do things. We’ve broken down and purchased a wheelchair for when the events are too much walking for me and my cane. But it’s still difficult. They can’t make plans without taking into consideration their ol’ mum. Tell me when they’ll adjust to that? Never, because it just gets worse from here on out.

caregiver

Tell me when I’m going to adjust? To a progressive illness? It may not happen in five or ten years, but at some point, things are going to go from bad to worse. How am I going to adjust to that? I can barely adjust to my life now and I will be expected to adjust to things then as well. How can it be so easy to just say to someone, adjust? Forget how life used to be before your body betrayed you; ignore how your body failed you and pretend that you don’t live in pain 24/7. It shouldn’t be that difficult right? You are only human, with flesh and bone and nerves and blood.

Progressive illness

Tell me when I’m going to adjust? I see more doctors than my 83-year-old father. I’ve had more tests and surgeries than he has too. Tell me when I’m going to adjust to seeing my body in the mirror and looking at the scars left by countless surgeries and stitches that have tried, in vain, to fix me? The hip surgery (total hip replacement) and spine surgeries (lower lumbar fusion and sacroiliac fusion)? Those are just the visible scars. The scars on the inside are more difficult to bear. The scars on the inside are more difficult to contend with. The mental illness can be more debilitating than physical illness. But coupled with the physical illness, it can be unbearable. You don’t adjust; you just live. You live hour by hour, sometimes minute by minute, fighting tooth and nail along the way because you refuse to give in. Because you still have so much to live for.

BeautifulScars

That’s what this ends up being all about. Not trying to adjust to this life of illness and pain, but about living. Living the best way, you can, through the worst times imaginable. You just live, because you can’t adjust to pain and illness, ever. You can’t adjust to it because it’s always changing. Symptoms are always evolving and sometimes you find out that you have new things wrong. There’s no adjusting to that. You just live. You wake up in the morning and you feel grateful that you can start the day. You feel grateful that despite the pain you can see your kids and plan a future with your husband. You take it hour by hour and minute by minute if that is the only way you can do it. Grateful for the seconds in between. You don’t adjust. You just live.

Living Life

Being Your Own Health Advocate

It’s Not as Easy-Peasy as it Seems

As long as I’ve been sick, and as long as I’ve been blogging, I’ve either been reading about or hearing about being your own health advocate. While being a self-advocate is something that seems easy, and is something that we have been doing since we begin seeing the doctor on our own, it’s not always easy. I’ve wondered why that is and how we can improve on that, to become better self-advocates, because there may come a time when ourselves is all we got.

 

Difficulty Being Assertive with Your Doctor?

Spear_3606

 

You’re not alone. Many people find that being assertive with their doctor can be a difficult undertaking. We can find ourselves at our most vulnerable when we are with our doctor, both physically and emotionally, but hoping that with all their education and experience, that they have the answer we are so desperate to have. However, when their diagnosis or treatment plan goes against what we may have in mind, we have a great deal of difficulty telling out doctor this. Why?

 

Many of us feel that if we question a doctor, we are somehow questioning their expertise and authority. We don’t see ourselves as equals when sitting with our doctor, even though we are both adults and equal as human beings. This seems to make us feel, in a sense, like a child and a “questioning of expertise may lead to retribution in the form of a lower quality treatment from their doctor somewhere down the road.” We’ve all heard doctors as possessing God complexes. There’s a reason for that and challenging their authority is one of them. But there are ways you can have a relationship with your doctor as an effective communicator- self-advocate. [1] Wagner, 2019

 

 

Non-Negotiable with Doctor

susie signs a contrat

 

Trust: Once you have a doctor, establish trust. Without this, you can’t proceed. Good doctors listen, don’t make you feel rushed and have patience. But doctors can have a bad day and staff can be off, so remember to have patience too.

 

Respect: Everyone starts with respect in my book. You don’t have to earn anything with me. But once you lose it, it’s gone. If a doctor disregards a legitimate complaint; if they tell you it’s nothing and to just lose weight-game over. Find a second opinion and start again.

 

Serious surgery/treatment: Any experimental/trials, surgeries, cancer treatments or whatever, get a 2nd or 3rd opinion if necessary. Do your research and see what trials they did for it; see what other patients said about it, and how they are feeling now. It’s very important to do your homework. If you don’t like what is said, find another doctor.

 

 

Tips for a Good Self-Advocate:

advocate

Communicate: It’s not just about talking. It’s about being effective. Any advocate out there will stress the importance of clarity with your doctor, and communicating your concerns and desires over the progress of your treatment while maintaining a professional relationship is essential. It’s important to be able to discuss treatment with a doctor without feeling like you’re going to hurt an ego.

 

Assertive: “Being pushy without being annoying.” You won’t find that definition on the dictionary, but I like it. In order to be an advocate for yourself, you need to learn how to do this for yourself, because there are going to be many instances you find yourself needing to use it. Whether it’s calling up the insurance company and finding out why a bill hasn’t been paid yet- and as my grandma once told me, you catch more flies with honey than vinegar, it pays to be persistent but not a bitch on the phone. They’re only doing their job and they don’t know any more than you know them.

 

Passionate: Oh, energy and enthusiasm! Chronic illness and chronic pain is a long struggle. You have to bring your pom-poms with you for you, to fight this. Ain’t no one gonna fight harder than you. Remember this when you feel like crap when you’re tired and you hurt and remember when you just don’t want to do it. You gotta look out for number one.

 

Knowledgeable: Research the Issue. It’s easy to Google something but it’s better to research. Google doesn’t mean it’s true, but if you research it and you find five or ten articles that say it’s true, you have a far better chance of the information being true. I’m a big proponent of research and being armed with research when going to the doctor can only strengthen your case when you bring your ideas for certain treatment before them. You may not have a degree but you have the right to consider what treatments you want to try.

 

 

 

[1] Wagner, 2019

In a More Holistic World Why Am I Still Treated Like A Part?

The necessity for a more integrated medical approach.

 

Let’s face it, everywhere you turn you are blasted with information about how important it is to treat your body, mind and soul. While it may have begun as something of a New Age thing, or maybe something that only those Yogi’s did, has quickly integrated itself within our mainstream society, philosophy and medicine. These non-medicinal reaches extending into our surgical units, where recent research has been done regarding the use of aromatherapy to combat nausea after surgery. The reason I bring this up is that every day we are being introduced to more and more reasons why maybe, we should step back and take a look at the bigger picture of our body and why we should perhaps not reach for this or that pill. But when we go to the doctor seeking help, we are often treated like a car on a conveyer belt and directed to this specialist or that specialist. While this is fine in some respects, for many of us with chronic issues, it’s a nightmare. Especially when you have 7-8 specialists and they don’t communicate with one another. This needs to change.

telephonegame 

I’m not rebuking Western medicine here, nor saying that we need a complete upheaval of our current medical care. In fact, I’m only suggesting one, small change. Talking to one another. This has been the subject of other posts as well because, in an age where we literally have the power to talk to someone at our fingertips, I don’t understand why doctors can’t talk about their patients. And some do. Some are very involved in how they treat a person, while others remain quite apart from it, leaving it to the patient to relay messages and information that might be muddled before it gets to the doctor’s ear. We’ve all played telephone, right? How does a doctor expect a patient to relay information to the next doctor in the same, exact form in which it was received? What if the doctor has questions about what was advised to the patient? Where is the debate about treatment when the patient has no medical background? But sadly, it hardly ever gets to that point. You go to the neurologist and he gives you medicine for problem A. You go to the gastroenterologist and he gives you medicine for problem B. You go to the Rheumatologist and he gives you medicine for problem C. You go to pain management and he gives you medicine for problem D. But, what if problems A, B, C and D are all interconnected? What if it’s not the medicine that you need at all but someone to connect the dots and take stock of the whole you?

 

Integrative Medicine: A form of medical treatment that combines practices and treatments from alternative medicine with conventional medicine. There is an emphasis on the “whole person,” and focuses on wellness and overall health, rather than only treating the disease.  

firstdonoharm

My favourite part of that whole definition, besides “whole person,” is “rather than only treating the disease.” We’ve become, in my opinion, rather over-zealous in the treatment of disease and the use of pharmaceuticals and I think this has been our greatest downfall in our application of conventional medicine. Once upon a time, to become a doctor was as sacred a calling as becoming a priest. It was generations of fathers (as a male-dominated field) who had sons, who were followed this path of healing. “First, do no harm,” was an oath breathed out upon the lips of these doctors with reverence. A reverence that extended to the profession, the body that they would be treating and the manner in which they would be treating them. I’m not saying that there weren’t bad doctors in the past, what I am saying is that the approach they took for the treatment of the body was more holistic than what we have now. There was a relationship between the doctor and the patient that you cannot cultivate in the 15 minutes you may have to speak with a patient now. There was an emphasis on the treatment of the whole person, which meant taking into account what they ate and what they did for a living and what they did in their leisure time that you may never know about a patient now. The prescription of medicine was given with far greater care and with an honouring of how these medicines might affect the rest of the body. Western medicine has never been as holistic as Eastern medicine, however, we are looking towards pharmaceuticals to solve all of our ailments, without looking far closer to home first. And to be fair, it’s not just physicians or pharmaceuticals, it’s the patients too who want these “quick fixes,” without regards to how much of a chemical cocktail they might be putting into their body. I’m one of them. We all want to feel better. And we all want to feel better right now. But at what cost?

soapbox

My PSA: I’m not pushing the No Medicine/Totally Holistic philosophy. I fall somewhere in the happy medium. And I greatly understand the need for medicine. It saves lives. No doubt in my mind. What my message is here, is balance and respect for both the pharmaceuticals and for your body. I respect people’s decision regarding their treatment. This is my decision.

 

The cost equates to side-effects from medications that begin to impact your body and where you develop symptoms and other (possibly) long-term problems from these medications, which end up requiring more medications. It’s a vicious cycle and one that I’m half-convinced that pharmaceuticals count on to keep you as a patient. Think about the long-term revenue that both doctors and pharmaceuticals earn from those of us with chronic problems that have no cure? We’re cash-cows. We’re the Golden Ticket. Keep us functioning; keep our symptoms managed and you have steady millions of patients who have to be prescribed countless pills, including pain medications and who will never get better. Is that not the perfect plan? But what about those of us who aren’t content with managing symptoms? What if we dream of something better? What if we dream of something more than “conveyer belt medicine,” where you’re rolled through in 15 minutes and written a prescription by a specialist who doesn’t care about x and y problems and only cares about z. Our body, our future; we need to advocate for ourselves this balance until our medical community is once again reminded of its roots. 

HealthyLife

 

 

 

 

 

 

 

Doctors vs Google

I bet you didn’t know there was a war brewing and in some cases being actively fought between doctors and patients and Google. What is the fight over, you might ask? Let me explain because if you aren’t knee deep in chronic illness, battling symptoms that seem to crop up new every other day, and seeing more doctors than most have seen in a lifetime, you won’t understand.

The fight is three-fold. Doctors who feel that patients are looking up their symptoms and coming to them to validate a self-diagnosis. Patients who are looking to validate a self-diagnosis. And chronic patients who possibly know more about their illness than their doctors, who feel abandoned by their doctors to more and more medications because their doctor has run into a wall and no longer knows how to treat them. 

The advent of Google and innumerable medical sites that give information about thousands of diseases and illnesses, along with other sites and blogs that are dedicated to educating people about their illness have made huge differences in peoples lives. There are patients out there who have been blown off by the medical community, who could not find out what was wrong with them, who, with the information gleaned from these various sites, have been able to go to a specialist armed with this information and finally get a diagnosis and treatment. Doctors, to some extent, feel threatened. Signs like these are popping up in doctor offices everywhere. **

Google Doctor

It states that Google, and the sites it may take you to, shouldn’t be confused with a doctor’s vast knowledge built upon their education and their medical degree. Okay. I get that. I understand that getting your medical degree is hard work. I understand that there is a certain level of devotion required to the field which gives you the motivation to put in the time toward your education. However, when you possess all this vast knowledge, from degree to experience and you do not try to help a patient, let’s say by offering some kind of treatment or admitting that you’ve hit a dead end with them, and then directing them elsewhere, there’s a problem. Patients inherently want to trust doctors. What drives us to Google are doctors who shut us down, who tell us that they know best, as opposed to the person living with the disease and who simply aim to give us medication in order to “manage” the illness. Is it too much to strive for something more than being managed? Is it crazy to think that we might possibly get some semblance of our lives back? I don’t.

In no way am I trying to belittle a doctor’s work. I understand that there are people out there who try to out-smart the medical community, for perhaps their own gains. As a person living with chronic illness and pain, where much of my life is tied up to just trying to have any kind of normalcy in my life and just being able to live with as little pain as possible, the idea of someone trying to make it up is repulsive to me. The idea that someone seeking drugs would go to the hospital to fake an illness, while not surprising also repulses me and angers me. However, it helps to put the plight of doctors into some perspective for me. I don’t, however, believe that doctors should immediately condemn a patient for using Google until they’ve looked toward themselves first, for the problem.

In a lot of ways, I feel like the entire medical community is broken. This does not mean that there aren’t hospitals and doctors out there who do what is right, but with so many grievances from patients from prescription costs to doctors who’d prefer to give a terminal patient Tylenol to control their pain instead of an opioid because of this “opioid hysteria,” we have issues that seem insurmountable. A broken system where Big Pharma is reaping millions if not billions, and patients who are suffering from neglect from doctors who don’t want to admit they can’t solve a problem. I know these are huge accusations but I am not the first one to mention them and won’t be the last. I don’t have the answers either, but I am hoping someone out there will. In the meantime, Google is still my friend because educating myself on my illness means arming myself with valuable information that can help my doctor treat me. This is the only weapon I truly have in this war with chronic illness.

 

** I was sitting here drinking coffee this morning and BAM! I remembered I didn’t insert the image. That is Fibro brain for ya!

POTS Syndrome

POTS syndrome is also known as postural orthostatic tachycardia. It is one of a group of disorders which have orthostatic tolerance (OI) as their primary symptom. Orthostatic intolerance describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position, fainting. [https://www.inlifehealthcare.com]

Symptoms Include:
Fainting
Heart palpitations
Shaking & sweating
Weakness & fatigue
Dizziness or light-headedness
Headaches
Poor sleep
Chest pain
Feeling sick
Shortness of breath

3 Types of POTS

Neuropathic POTS
Hyperadrenergic POTS
Secondary POTS
Neuropathic POTS
This is essentially nerve disease. Here, the sympathetic nerve supply to lower limbs does not function properly and so there is pooling of the blood in the lower extremities rather than being returned back up to the heart. This leads to dizziness on standing and an increase in heart rate. This is the most common form of POTS.

Hyperadrenergic POTS
This is a case of high adrenaline. These patients have high levels of norepinephrine in their blood. This leads to increased heart-rate and blood pressure. While neuropathic POTS has lower blood pressure and higher heart rate when standing, hyperadrenergic POTS typically has both increased blood pressure and heart rate when standing.

Secondary POTS
This refers to POTS syndrome that is a result of another under-lying condition that leads to damage of the nerves that usually control the re-distribution of blood. These under-lying conditions can include diabetes, lupus, alcoholism and chemo. [https://myheart.net/pots-syndrome/types/]

Some Spoonies Worst Symptoms and Some Advice:

Stephanie shares: “Right now, I’m struggling most with temperature regulation and sweating. I’m always getting hot and cold at the same time! And I get so fatigued from standing it’s crazy!”

Adara shares: “I can’t stay standing for very long due to dizziness, drop in bp, heart rate and lips going blue. Hands and feet go red and purple and I get brain fog and fatigue. I use a wheel chair now. (I was once a badminton player) I was diagnosed after ten years- took a print our of POTs information to my doctor.”

Adara gives some advice to POTs patients: “Drink lots of water and salt (always carry emergency salty snacks, the way diabetics carry sweet stuff). Wear compression socks, stay cool, use a shower stool/seat and if you want to try physiotherapy/medication, then ask loudly and don’t be given no for an answer.”

A Brief Tale of Kristie’s POTS Experience:
I “spoke” to Kristie Johnson, of Migraine Mantras (Migraine Mantras), via Facebook messenger. She’s been dealing with POTS for eight years now, before doctor’s finally began looking into it and was finally diagnosed two years ago with it.
When I spoke to her about her most aggravating symptom’s she told me this:

“I have the most trouble with blood pressure drops. I get up slower, turn slower, anything I can do to avoid passing out. Gatorade and body armor are the only thing helping me right now. I know when I’m about to pass out, 90% of the time (ringing ears, dizzy, blurred vision or blacked out vision) and can sit or lay down before it happens. Sometimes I can’t catch myself. I’ve fallen down the stairs, fallen into things, washer, a dresser, etc.

When talking about her symptoms, length of time she’s been struggling with her symptoms and her recent diagnostics, she told me:

“Local docs won’t treat me, and I’m actually being sent to a hospital a few hours away to see an autonomic specialist for treatment. It’s 3-ish hours away in a Medical Center in Norwalk and I’m on disability so money isn’t something I have a lot of.”

I also asked her which POTS she was struggling with.

“Reading into it I mostly fir into the Secondary POTS category because I have under lying issues like Lupus and nerve damage.”

Sharing Stories Brings Awareness

Like so many others, Kristie is struggling with POTS and it is my hope, that through the sharing of these and so many other stories, we will bring more awareness to POTS and other chronic illness, to those who do not know or do not understand enough about them. We have begun to learn, the impact our voices have. I encourage everyone to share their story with people everywhere, because you don’t know whose life you will touch. When we are silent, we often feel we are alone. When talk and share these stories, we are suddenly catapulted into a community who can listen and support us.

As always, thank you for reading. Thank you for supporting my blog.
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The Big (not so) Beautiful Lie

When you are first diagnosed with chronic illness/pain, you are very quickly acquainted with dread and fear which are inextricably linked, in addition to overwhelming anxiety. Chronic illness and pain are something which are uniquely foreign to that which we are accustom to. These are not the flu or a cold, or a twisted ankle from tripping on a dog toy. This is something long term (hence the chronic), for which there is no easy remedy or medicine to cure it. Once you’ve been able to process the diagnosis and conquer the dread, you become more optimistic, regardless if you are naturally pessimistic. I think there is a natural, human desire to want to look at the most positive outcome when you are sick and especially, if you are in pain.

Research mode, typically follows this period of distress and positivity, and when I say research, I mean research. Whatever the ailment maybe you are delving into books, diving down the rabbit hole of Google and looking for anything you can find that might help you battle whatever it is you are fighting. You search for groups on Face Book where you can meet people who are going through the same thing, in hopes of not only finding some comradery, but maybe some clue in how to battle this thing and win. You become a person, previously with no knowledge on the subject- maybe not even knowing it was a disease at all, to someone who might as well have an honorary PhD. However, after all that fervor for learning, what happens next is very anticlimactic; nothing. You may find some things that alleviate some of the symptoms; you may walk away with a few new friends who become an extension of your support system, but you find little in the way that makes a dent in how you feel from day to day. (This can vary from person-to-person.)

Weeks go by; months go by; and sadly, for many of us, years go by with little change. What began as a moderately optimistic journey toward recovery becomes a portrait of self-criticism. What I mean is, doubt creeps into our psyche. Did I do something to cause this? Should I have changed my diet? Become Vegan? Should I have switched all my commercial cleaning agents to essential oils? Stopped drinking soda? Drank more green tea? The questions posed in this self-interrogation are endless and the questioning can continue quite a while, covering your entire childhood through your adulthood. It is this idea that if you were just able to do something different, either through your diet or what you are exposing yourself to externally, that you could get better, or better yet, cure yourself. This is the big, not so beautiful lie. This is what many of us zone in on, trying to assign blame to something, not being able to accept it might be the luck of the draw and that sometimes we simply don’t have control over what makes us ill.

Part of the fall-out from this is when strangers or even extended family members issue us advice on how to get better. There is an inward clenching and mental eye roll as we try to maintain our manners. It’s not their fault that they don’t understand, right? I wish I could be more forgiving when someone advises me on the fine attributes of turmeric, but the fact is, if I haven’t already tried it, it’s likely I know about it, courtesy of my intense research. This isn’t an effort to bash those that mean well, rather, it’s an effort to help them understand and by changing the way they word something, come across less assuming and more genuinely interested to help. Example: “You should be taking turmeric. It will help you feel a lot better. I read…” Instead, “In case you haven’t heard, I read turmeric is really good for inflammation…” or “Have you heard about turmeric? I learned it might help bring down inflammation…”
Lastly, if you are struggling with chronic illness/pain, remember it’s not your fault. Stop telling yourself these big, not so beautiful, lies and be kinder to yourself. You are already going through a lot, and self-blame will not help you.

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