So, what; You Can Handle It Better

How it should be.

I’m probably not the only one who has heard variations of the following: “I have terrible anxiety too. But it doesn’t cripple me the way it does you. You need to find a different coping method.” Or “Wow, I have Crohn’s and mine is worse but I still work. Maybe you need different medicine?” One of my faves that I’ve heard in the past: “I have triggers too, but I don’t let them control my life.” There’s more of course, but you get the idea. These comments are frustrating and hurtful in many different ways, but for me at least, it implies that I’m not doing enough and I think that everyone who bears the particular cross of chronic illness/pain and/or mental illness, not only does absolutely everything they can to help themselves but wishes it never happened to them in the first place.

If we had a choice, we’d take healthy body option.

Maybe I am just naive, but I always thought that when you share a specific issue with someone, like an illness, disability or mental health disorder that you kind of join together and lift each other up not criticize, antagonize or bring each other down. We all begin in this place where you feel so alone with your problems and struggles. You feel like no one is seeing you or truly hearing you and without a doubt, no one out there understands. Then, you begin to reach out slowly and carefully to a community that is inhabited by others just like you, living with the same illness and daily struggles you are going through and you feel like you can open up and share things. It feels like a sledgehammer coming down on you when the people you thought would understand, the people you thought you could trust, bring you down and make comments like, “you have to be exaggerating, I have the same thing- worse- and I still run around for my five kids,” or that “you have to be doing something wrong.” I’ve even watched as people on forums intended to bring people together, instead, tear it apart with savage comments about the choice of medicine a person takes (on the advice of their doctor). “You’re going to become addicted.” “How could your doctor write a prescription for that poison.” “You’re better off just hitting the streets for drugs at this point.” This is no joke. I’ve read this and worse; my jaw just about hitting the floor or feeling so disgusted I have left groups.

I write for both the benefit of those going through chronic illness/pain/mental health and to attempt to educate those who do not have to deal with these things and perhaps don’t understand what it is like. I should not have to speak to the community I call my own and tell them that they should not discredit others’ struggles simply because they have been graced with the ability to handle them better or they think they’ve been through worse. That kind of thinking hurts everyone because we are not carbon copies of one another. We’re all uniquely and beautifully human and while there are amazing people out there (you may be one) who can handle the weight of their illness or struggles better, who might even overcome them and eventually inspire others, this does not mean I (or anyone else) is somehow less than because they are still struggling and still fighting every day. Additionally, when it comes to the medicine we are prescribed by our physician overseeing our health, there are some who rely solely on the advice of their doctor and there are others who might investigate further what is best for them. But there are far better ways to handle a conversation about medicine than telling someone they’re going to become an addict. It can cause a person to stress, trigger anxieties you may not know about and possibly abandon medication altogether. How a person decides what goes into their body to help their pain or illness is personal. Unless you have a less alarmist approach, stay out of it.

I have a mouth.

Life is so difficult, even when we are unburdened by the weight of chronic illness/pain and mental health problems. We don’t need to add to those struggles by attacking one another. Instead, we need to support one another and fight to bring awareness to illness and pain that have been ignored for too long. We can do so much good together; we can improve life for so many including ourselves, it seems like the only answer is for people to be more supportive toward each other. We’re all doing the best we can as we navigate the treacherous waters of chronic illness.

Namaste y’all, until next time.

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.

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.

If You’re Lucky to Be Healthy, Don’t Take it For Granted

We take a lot of things for granted in our life. Some examples of things we’ve taken for granted recently- going out to the store whenever we want, going to school, work, out to eat or (without a mask). Movies and concerts were cancelled and other public events that have been tradition were also cancelled. We’ve taken these things for granted never thinking how easily they could be stripped away or reduced. However, for those of us in the chronic illness and chronic pain community, life didn’t change very much during this crazy time except for the necessity of wearing a mask. At least for myself, I only felt a little bump of change to my life, whereas healthy people felt a definite jolt of change.

Why do we take certain things for granted in the first place? Sometimes, it’s just because a certain thing has always been there. Many people take for granted their parents, because they are always there- until they are not- and then we realize what we have lost. We take for granted our freedoms and liberties because they are always there, until suddenly we are forced to walk around with masks, and are restricted in our movements even if it is for the safety of those around us. We’ve heard the chorus of many who feel their personal freedoms have been violated. But, what about your health? Is your health something that you take for granted? Is it something you feel will always be there? Or maybe you don’t feel like there is a threat until you are much older, say your 60’s or 70’s?

I think we all felt like we had to stay 6ft apart even inside our house.

The Mask

If you are lucky to be healthy, take it from someone who isn’t, to not take your health for granted. I can’t say that I was ever “healthy.” I came into this world with sickness and I grew up with asthma, chronic sinus infections, allergies, chronic migraines and chronic bronchitis. It felt like every time the leaves began to change, I was already sniffling and sneezing, which would, in turn, affect my asthma and then would invariably turn into a sinus infection that would eventually manifest itself into bronchitis. Later on, I would develop structural issues; ankylosing spondylitis, rheumatoid arthritis, psoriatic arthritis, gluten intolerance, Crohn’s and a bevvy of mental health issues from anxiety to bipolar. Most days I accept that this is my life. Most days I power through doctor visits, blood work, infusions, tests, pain and symptoms that keep me from ever feeling truly great. But there are those days that I lament my body and its various weaknesses and I wish with all my heart, that I was healthy.

Lamenting my body…

I’m very active in social media because of blogging and I see the active lives of many people I once knew or currently know, who are my age or maybe a little older or younger and I wish I could be doing some of the things they are doing. I wish I was able to go hiking; I wish I could go running like I used to; I wish I could plan a vacation without worrying that my health will get in the way of me and my husband having a good time; I wish long car rides didn’t hurt me so we didn’t have to stop so much on my account; I wish I was able to be more active and I wish there weren’t so many days that I dreaded getting up. It’s painful to know that so many things you once enjoyed have been stripped from your life. It’s difficult to reconcile how things were to how things are.

If you are healthy, don’t stop taking care of yourself. Don’t become negligent of your health because you think you have time. I may not have been in stellar health to begin with, but I certainly never thought things would evolve to where they are now and it was always something I envisioned would happen when I was old, like my grandmother. If you have your health, fight to keep it for as long as you can. It’s true that you can do everything right and still find yourself with some illness, but I figure it can’t hurt that you’ve done your best to take care of yourself. Life is too short as it is. Live your best life and keep yourself as healthy as you can so you can enjoy it until you are a ripe, old age.

Living life until you old, not feel old!



It’s Okay If You’re Chronic Illness Wins Today

Battling chronic illness is a 24/7 job. You never get a break from it. You try to do everything right; you do to your doctors, you take the medicine they give you; you do the therapy they want you to do, you exercise (if you can), eat healthy, get enough sleep, but some days try as you might, chronic illness wins. You wake up and you know it’s going to be a horrible day. You can feel it in every atom of your body and you dread it. Why? You do what you are supposed to. Why does your body, who should be on your side, betray you in such an intimate way? Because it isn’t your body and its chronic illness. Some days are just more difficult for your body to fight it and you have to allow your body the time to heal and get over the bump. 

This doesn’t mean that you have to like it. You can be angry and throw things. You can curse and shake your fists at the sky and say, “Why me?” However, in the long run this does nothing to help the situation. Graceful acceptance of your body’s failings will provide more healing than fighting against it. There’s less energy wasted in acceptance, and there is a peace that fills you eventually when you realize and accept that some things are beyond your control. And as much as you’d like to have control over your own body, the chronic illness that inhabits it has more control over what is happening than you do. You have to let it go. You have to look for control elsewhere, in things like how you are taking care of your body, and what you are doing to ease your body when you are having a bad day, rather than being angry that this is happening to you.

Try and be grateful for the gifts that your illness has unknowingly given to you. For example, for me, chronic illness has given me the ability to do what I love, which is write, full time. It has allowed me to be home with my children and be there for them through a considerable portion of their lives to help them when they have needed me. And now, they help me a great deal with doctor’s visits and shuttling me around when I need to go somewhere because I can’t drive. So, while chronic illness has stolen much from my life, I have also reaped some benefits of which I am grateful for and would not have were I not sick. 

Not everyone can be home with their kids. It does mean that most of the time we’ve been a one income family, but I have also made up for it in other ways. I meal plan, and make everything from scratch at home. From broth to yogurt when I am feeling up to it and have enough supplies. Sometimes I swear, I can’t keep enough mason jars in the house. I don’t know where they go off to. But I like doing the homesteading on a smaller scale because I don’t have the room to do it on a larger scale yet I’m practicing for when we go to Wisconsin and have our farm. Big dreams!

Closing off here with a reminder that you do what you can, you appreciate your body for what it gives you, you forgive your body for its’ failings and you continue to have a good life. Sometimes chronic illness wins, but it’s only one day out of 365 and even it’s more than that the good days still outweigh the bad in quality. You have to look for the positive in the everything. 

I loved this image and the message it conveys. Positivity is not necessarily natural in everyone. It’s not for me. You have to train yourself to see the positive in situations. It’s not easy but as you train yourself it begins to get easier and you begin to think, “Why didn’t I see this before?”

Note from Author:

If you like what you are reading, please click the PayPal button and donate what you can. There is no amount too small and it’s rough trying to fight for disability, having medical bills to pay, kids in college and so on. I am trying to live my dream and my passion by doing what I love, and it’s the only thing I can do because I can’t work outside the home. So, if you can help it would make a world of difference in my life. Thank you from the bottom of my heart.

COVID-19

PLS2

The Realities of COVID-19 for You and the Same Realities for Me

We interrupt this regularly scheduled blog with a word from our author:

During this COVID-19 madness, which has become the New World Order for at least for the foreseeable few weeks and which feels like we’re all living out some surreal, Quentin Tarantino movie, there are still those among us who feel that this is all a wild over-reaction to something no more worrisome than a cold. I’m here to tell you that for me, COVID-19 is something much more worrisome than a simple cold.

worry-stickman

As an immunocompromised person, with several autoimmune disorders, I fit within that 20% high-risk group that would find themselves in danger should they develop this illness. I’ve considered this deeply from both an intellectual perspective and an emotional one. I’ve accepted that if I were to get sick I might not be able to beat it and that’s okay. I know you’re reading that right now thinking “What the actual fuck? What do you mean you wouldn’t fight? You would just give up?” No. That’s not what I mean. What I mean is that my body is not equipped to fight this virus and gives a whole new perspective to “Survival of the Fittest” for me, and others like me. The kind of perspective that forces a wife to choose to tell her husband, “Please understand darling, I may not get through this.”

 

darwin

 

I am not a soldier, but I am a soldier’s wife. And I remember when he prepared me for his deployment into a war-zone; all the potential disaster entailed and how my mind exploded with worry about a life that could potentially include one without him. How all of our future dreams could be snuffed out, and at every turn where I had always seen him by my side, he could be gone in a puff of smoke. All of this, in a cruel bit of irony, was now in reverse, and I saw that haunted look in his eyes instead and it killed me. I’m not a soldier. I wasn’t trained to go into battle; I wasn’t trained to expect or be willing to die and I wasn’t trained to potentially have to say goodbye. Having to look into my husband’s eyes and tell him that I might not make it was the most difficult, most gut-wrenching thing I’d ever had to do. But I certainly realized that day his job was much more difficult than I ever gave him credit for. I realized that no one can teach you to be ready to say goodbye.

 

coupleserious

 

If you don’t have to be worried about Covid-19, you should count yourself lucky. If all you have to be concerned with is washing your hands for 20 seconds while singing “Never gonna give you up, Never gonna let you down, Never gonna run around and desert you. Never gonna make you cry, Never gonna say goodbye, Never gonna tell a lie and hurt you,” then life is good. If all you have to do is focus on your family, make sure they are safe and practising good hygiene, and if all those you love are not in a high-risk group, then life is cake. The maddening, hoarding or opposite, disregard and denial are truly perplexing for me, however, ultimately boils down to the same common denominator: a lack of empathy for human life other than your own. You could say this is self-preservation, but how much toilet paper is truly required for self-preservation?

toiletpaper1

 

While I am very much a realist in regards in regards to this situation, I’m not a fatalist, despite my acknowledgement and even acceptance of possible death and I’m hopeful that I will neither contract COVID-19 and if I do, that I will recover. Having been through so many frightening surgeries, experienced so many difficult pregnancies and given birth to two, tiny preemies, and now, living with these autoimmune disorders and chronic pain, I’ve learnt to accept life and death without prejudice. We’re here on this planet and it’s a one-way ticket. We get to enjoy so many beautiful experiences and I have. I’ve been so incredibly lucky. I have no regrets. I’ve lived on my terms and I’ve done things how I wanted and if I didn’t make it, it would suck but I wouldn’t be angry at the universe. I want to die on my terms and with whatever time I have left, I want it to be with my family and I want it to be peacefully. But there’s still hope in my heart that all this will pass and that we will learn from it.

beautifullife

 

Learning from this is how I want to end this. We all may have our thoughts about COVID-19, but I think it’s very important to understand that there are a whole array of possible virus and germs (new and old) out there, lurking and waiting to find a host. As you have learned, it only takes one person to start a pandemic and it can spread very quickly. Once it has spread and once it has a foothold, things become very challenging to deal with. Not only does treating the disease become difficult to manage but you have economic repercussions and citizens who begin to feel that there is not enough being done to manage a critical situation. We the people, have to implore our government of the vital importance of Public Health and making sure it is properly funded and equally so, the CDC. We need to make sure that our Healthcare system is placed at the forefront of thought and no longer neglected so that people can get more than just adequate care. COVID-19 should be a huge wake-up call for the public, the healthcare system and the science community. If people continue to deny the gravity of the situation, I truly believe this will happen again, and next time we may not be so lucky.

wakeupcall

I Want My Old Brain Back

Other Wistful-cisms…and Conclusions

 

I want my old brain back. You know the one I’m talking about. The one that could remember an entire grocery list on her own. The one that didn’t need to write everything on post-it notes or List-App’s on the phone or computer. The brain that made me a pretty successful mother of four small children, under the age of 5 and then when they got older: returned to school and later on, returned to work as well. There was a lot of juggling going on and I was managing alright. Looking back on it now, what I saw as overwhelming was stressful, but not as overwhelming as it would be for me now. It amazes me the volume of information I could store in my memory without needing to write it down. Entire lectures got banked up there with little need to study. I could remember my medication (for the few I took) without needing to write it down or needing an alarm on my phone. I stored in my brain at least five family and friend’s numbers and now I can only manage my husband, the rest are in contacts on my phone. Some of this can be attributed to getting older, and our lives stored on our phone, while others are truly a memory issue that is a direct result of my autoimmune disorders. Many of us are familiar with brain fog; this is like brain fog on steroids that can be positively alarming.

lotus

The clarity is gone. The crystalline keenness in which I had been so accustomed to seeing things had now dissolved into feathered edges that forced me to squint. It makes me angry and frustrated and deeply sad because everything that I want to do well, like sitting down to write, which I love, is twice as hard. Words don’t just fire off the synapses like they once used to. It feels as though they are blanketed in a thick, low fog and I have to search for the words, sometimes using Google, or the Thesaurus like a fishing rod, several times to hook and reel the right words I am searching for. There are times I will slam the laptop shut, frustrated that this is how things have turned out. Frustrated that this is my calling and that the universe has seen fit to throw in another challenge as if life itself weren’t challenging enough. But I refuse to allow it to rob, what it is I love. If I just lay down and die, it wins. I’m sorry, but if there’s one thing that people with chronic illness have in reserve is strength.

lotus

I want my health back. I’d settle for my health at my 30’s. I had migraines every few days but now, when I get a migraine on top of everything else that makes my body feel like someone’s punching bag, it makes me feel one hundred times worse. I want the freedom of being able to eat what I want and not have to worry about it making me sick to my stomach. You forget about how food makes you feel; you forget your vanity and about the calories because you’re losing weight from the terror waged every day in your digestive system and all you want to do is enjoy food for the sheer sake of pleasure because food has now become your Moriarty. Worse than that because you can thwart your nemesis, but you can’t thwart food. Food is life.

lotus

I miss my old body and freedom of travel. I want the luxury of being able to travel whenever and wherever I want and not have to take into consideration my illnesses and how travel will impact my body or how the stress of everything will tire me out or be too painful for me. I want my 20’s and my 30’s when I could run and jump and climb and do yoga. I wake up in the morning and the first thing that greets me is pain. There are different levels of pain: some is throbbing and aching in my joints and muscles, while others radiate and spike down from my lower back down my leg. It’s not something I get used to and I have to breathe a little humour into it, thinking, “Well, if I ever wake up and not feel pain, I know I’m dead.” A little dark humour, but that isn’t anything new with me. People would probably find it surprising to hear that I would like to go out more. I am most comfortable in my house, given my anxieties, but there is still an explorer in me. However, because I feel fragile and I’m afraid of unknown terrain hurting me, I distrust going out. Hence, missing my old body and freedom of travel.

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I miss unfettered laughter, a quiet mind, a carefree spirit. Did I ever have these things? I’m 45 years old and when looking back on my life and grasping at memories of my childhood and teenage years and older I wonder if I ever did truly have these things. Was I shaped by a bipolar mind with anxiety? The PTSD is a condition that was developed, but surely, I was a clean slate at some point? But the truth is, I don’t think the slate was ever clean. And still, I would take it over some days now, because I can taste the levity on my tongue; the sweetness of it and recall the serenity and carefree spirit that allowed me to take chances I don’t think I could take now. Mental illness paints things a shade darker. Creates shadows where there aren’t any or ought not to be any.  I can briefly grasp at what was during manic episodes, but it’s never right. They’re either pale comparisons or too bright and too clean. Like I jumped into Wonderland. I wonder what it’s like to be in a normal head and experience emotions normally and not acutely because as I miss the unfettered laughter and quiet mind, I also miss the natural ability to arbitrate emotion. Instead, I feel with every atom of my being- every pore. I love with every ounce and feel with every tear, those losses that may be minuscule to someone else, are devastating to me every time, taking a bit of me with them.

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I want my old brain back, and my old body back and- but I always stop. Because whining about it and venting about it is different than actually getting it back. It’s necessary to do. After all, you have to grieve what you’ve lost, because in a very real way you have lost a part of yourself, but in another way you’ve gained a different part of yourself and that is the part, I’m not willing to let go of, as much as I might complain. Why?

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Because my chronic illness, while being a pain in the ass 99% of the time has taught me three very important things: Being Compassionate toward others, Listening without Judgment, Living Life Despite The Pain. It’s pretty simple and while I could probably add more things, these are pretty much the foundations by which I try to live my life. It’s not always easy; I’m not a saint, but I try. Compassion is not something I find difficult, especially when encountering so many who find it difficult to be compassionate toward me. I’m already naturally empathetic. Listening is almost as easy, but listening without trying to interject opinions or thoughts and just listening to a person is more difficult. People often want to speak about how they relate to a person’s situation, or how they would deal with it, or how they feel about it. The keywords here being they/themselves. Listening and focusing on them, and not yourself is more difficult. It is something I work on every day- not making it about me. Living Life Despite Pain, of just Living my Best Life is strange, the most difficult. My life has been focused around my family- my husband and four kids and learning how to live life in a way where it also makes me happy- where I am doing things so that I thrive as well, feels selfish. But we need to make the most of every day we are living on this earth, so that is what I am working on.

 

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They Call That Fashion?

[image: Getty Images]

KimhēKim fashion brand posted videos from its September 24 Paris Fashion Week show, which features a model walking up the runway in a T-shirt labelled Sick across it with an IV as an accessory instead of a purse. The collection is described as “energetic,” as models sported black sunglasses and either carried selfie sticks or IV drips. Among some of his reasoning for this line: “This collection is about attention-seekers spending their summer vacation in a hospital.” He also says, “These days we all want attention and positive reaction from people, especially on social media. But instead of hiding it, let’s just be honest and admit that we want it, but do it with elegance.” (Burlet, 2019)

Okay. There is a lot to cover, so let’s get down to it. As a person with chronic illness (autoimmune disorders), who goes every six weeks and sits for roughly two hours with an IV for infusions, who is SICK, and who doesn’t give a crap about being elegant about it because I’m not an attention seeker- wow! This takes absurdity and shock fashion/art to a whole new level comparative to Bstroy, which showcased their bullet-like hole hoodies, and names of schools who had experienced mass shootings. It’s difficult for me to grasp why any designer would want to take these tragedies and exploit them in this way. But by his very own words, “attention-seeking” and “spending their summer vacation in a hospital” he truly doesn’t understand the difference between sick and trendy or fad. Where the rich or elite go to IV Infusion Bars to receive vitamins and rehydrate after a night of partying. I also considered that this collection might be in part to poke fun at these rich and trendy types, with their IV drips and selfie-sticks but I think it failed because of the manner he went about in showcasing it that would have been solved with one word: Not Sick.

I kept reading his words over and over again trying to understand his reasoning for this outrageous collection. It did not seem like a purposeful attack on the chronic illness community, however ignorant it may have been. But before you become angry with me, ignorance is never a defence and yet, I would still try and understand him. What I zoned into was the part he says “we all want attention and positive reaction from people, especially on social media. But instead of hiding it, let’s just be honest and admit we want it, but do it with elegance.” I read this and interpreted from him that these people who are flying off to these resorts they call “hospitals,” for their IV drips and “medications,” because they’re “sick,” should perhaps be honest about what they’re doing, be more authentic about themselves and while they are doing so to be more elegant and fashionable. But he widely miscalculated this interpretation and in doing so offended another community who is Sick and who is Not Attention-Seeking. Those suffering from Chronic Illness.

My first reaction when seeing the Instagram posts were quite visceral. I was instantly angered that someone could be so obtuse that they would throw this “Fashion” out there to be oohed and aahed over by fashion gurus and the general public everywhere. I may not be a fashion follower, but I know enough to know that Paris Fashion Week is a big deal and something like his collection can suddenly shift chronic illness and the people suffering from it into a negative light. We already bear enough scrutiny in our daily lives from the public that seeing this on the catwalk made me mentally scream and then take to social media to vent my anger the only way I could. But because I blog, I decided to use this platform as a way to explain to readers why this angered so many. However, I thought it was only fair to research why he may have created this collection, to begin with, hence the reason the introduction is laid out the way it is, which is only a logical guess. He’s been pretty cryptic about the meaning and inspiration of the collection and I did my best to be fair. He’s a fashion designer, successful from what I have read, dealing with an element of society that we might call the 1%. I am not implying that the 1% doesn’t deal with chronic illness, but what I am saying is that they can check into hospitals on a whim, for summer vacation, whereas the working class do not.

So, I’m wondering if there’s a bit of ironic humour going on with him somewhere there. A stab at those elites who think that checking themselves into the hospitals for a summer equated to being “sick,” and not vanity? His collection backfired among those of us who are sick. Did it backfire as a whole? Did it do badly at the Paris show? I don’t honestly know? Will it draw chronic illness into a negative light? Will people think that we are attention-seeker’s more now than we were before his collection? I don’t think so. Was it in poor taste? It’s aggravating to me as a chronic illness advocate, as someone who struggles with chronic illness, to wake up one day and see things like that. It’s frustrating. But then I remember, that’s why I am here. I’m here not only to bring awareness and to bring positivity to people who are sick, and their families, but also to those who know nothing about the illness and the chronic illness community, like him. So try not to despair when you see things out there like that my friends. Band together and redouble your efforts to spread awareness.

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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?

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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:

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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