Blog

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.

It Starts with Not Wanting to Get Out of Bed

That’s how you know things are getting bad.

I’m a morning person- please don’t throw rocks at me (lol)- and I’m usually up by 6:30 in the morning sometimes I’ll sleep in until 7 am without my alarm. But I usually have my eyes open by 4 am when the Mister goes to the gym. Then, I doze off till 5 am when he gets home and hits the shower and again when he leaves. Finally, at about 6:30, I’m pretty much awake mentally and just trying to convince my body that it’s wakey-wakey time.

My body’s expression when I wake up and attempt to get up.

I know instantly it’s going to be bad when I just want to lay there, despite the hungry biting from my cat, encouraging me to get out of bed and dispense his food. Trust me, these aren’t gentle, little love nips. He bites with serious intent and leaves bruises as evidence of my failings. I know it’s going to be bad when I’d rather lay there like a chew-toy for my cat, rather than face the day.

Photo by Joshua Woehike

Since I have to get up, the first thing I do is assess my ability to move versus the pain I feel. There’s generally a groan or two involved and inevitably a snap-crackle-pop for my listening pleasure. I can’t decide if it’s worse to feel the snapping and popping or hear them- at this point both are horrid.

My body will generally feel like some kind of war was waged upon it while I slept. Courtesy of tossing, turning, tossing turning some more and a 16lb cat who likes to sleep by me, on top of me or really, wherever His Highness can get comfortable. My muscles will be sore and achy, my joints will be warm, swollen and throbbing and 9 times out of 10, I have a raging headache. Sometimes this is due to chronic migraine and sometimes my hypertension. There are days when my Crohn’s is acting up. I wake up and before I can even put anything into my mouth that could offend my gut, my tummy is already throwing a fit; I’m running to the bathroom and I’m nauseous.

There are days when I know it’s bad because my chronic illness and chronic pain decide to team up and flare together. These are probably the worst days. There’s no way to describe how defeated one feels when upon opening your eyes you are immediately assaulted by an arsenal of symptoms. All the chronic pain and all the chronic illness symptoms seem to have descended upon your body in the ultimate attack and there’s nothing you wish more than but to have a do-over switch and wake up again feeling refreshed. Instead, you feel as though you just experienced the Running of the Bulls over your entire body, twice.

It starts with not wanting to get out of bed but chances are, you have to. Life doesn’t stop when you have chronic illness/pain and you have to move through life going to work and taking care of those dependent upon you.  It’s not easy and I’ve laid in bed countless times wishing I could just stay there. I’m infinitely grateful that I do not have a job outside my home and I could stay in bed if I needed to. My kids are all adults and while the youngest still doesn’t drive (a work in progress), I do have to pick her up and take her to work but I could enlist one of my other kids to pick her up if I had to. Not everyone is as lucky as I am and I wish people realized the kind of effort it takes to pull yourself together and do everything you need to while feeling like you’re on death’s doorstep.

Actual footage of me trying to pull myself together and feel like hell.

It starts with not wanting to get out of bed. Those symptoms that you dread. The flare from hell. You try to get out of bed, mustering all the will and energy it takes and you flop back down closing your eyes as the pain sears through your body. “Not today.” You say quietly, to no one but the shadows in the corner of your bedroom. I’ve been there too. There are some days where you just can’t do it. Where the battle that has been raging day in and day out finally takes its toll and you surrender with the white flag, submitting to the comfort of your bed and allowing your body to rest. It is not defeat. You may have lost this battle, but not the war and it’s not over. You’ll take time to recover and you will be back on your feet. Resting and doing what your body needs is not a sign of defeat. Even in wars soldiers retreat, but they regroup and they come back fighting.  

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.

5 Ways to Reset Mind and Spirit

  • Self-Care Kit: Keep a box full of your favourite things that make you feel good. It could be photos, books, your favourite recipe, essential oils, candles, even chocolate! Whatever you want. This is about cosy comfort.
  • Media/Digital Detox: Spend an entire day unplugged from your phone, computer, laptop and T.V. Think of something or somewhere you’d like to do or be and go do it.
  • Listen to New Music: Fall down the YouTube rabbit hole of music, clicking on new music that you’ve never heard before. You might just find your new favourite.
  • No More Monkeys Jumping on the Bed!: What? Who said no more? I know, crazy, but it kind of takes you back to being a kid and the pure silliness and joy, so go on, jump on your bed! Can’t jump on the bed, don’t worry, you can colour, play with a balloon, pull out Candy Land and play with your kids or have a tea party! Just do something that reminds you of being a kid again.
  • Go Outside in Nature: Take your music outside, sit in a comfy chair, or lay on a blanket out in the park w/some water or tea and a book or walk barefoot on the grass and feel grounded. We are a part of the earth and from time to time we need to connect with her again.

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

If You are in the Midst of a Flare, I’m Sorry

I’m a mess right now.

My husband and I were finally able to get our Covid vaccines. I had been apprehensive about it because I already had Covid, and was worried about the side effects. Also, because I have Crohn’s, Rheumatoid Arthritis, and Fibromyalgia, I worried my immune system would overreact to the injection.

Day 3 Post Injection? I feel like hell. It started with the Covid headache (which was very familiar to me) and blossomed into a migraine. The aches and soreness all over my body evolved to a full-on flare. My worst fears about the vaccine come to fruition.

So, this post is two-fold. 1.) No matter the side effects from the vaccine, if you are able to get it, please, please, please, get the vaccine. I know some people can’t for health reasons, but that is why it is so important for everyone else to get vaccinated. 2.) If you are currently in the midst of a flare, I know that you are suffering and I hear you. But you need to remember that you are stronger than you feel right now.

I know, it’s easy enough to tell someone they are stronger than how they might be feeling at that moment, and even if they understand what you might be going through, they are not you. But you have the strength and even if you don’t know why, you are here for a reason. I truly believe that we all serve a purpose in this universe and even though it might not be revealed to you in this life why you are here and what purpose you served, you will understand in the next. There are so many people in this world, and all of our energy touches one another, and sometimes we can touch people in a way that saves them and we may never know.

Chronic illness and pain can sap us of our strength, leaving us feeling like we don’t have anything else. It robs us of our joy and narrows our world down to grim shades of loneliness. I’ve been there and I’ve been sucked into that hollow vortex of lies that the miserable symptoms of a flare can inspire. Don’t give in. You have so much to offer this world and so much to give to other people. I know that not everyone can share in blogs, but keeping a personal diary or personal blog that is set on private can be very helpful and therapeutic. You can sometimes see when you are veering off into a place that isn’t good for your mental health when you are writing and most of all you can see the evolution of your progress when you are writing for along period of time. It’s incredibly helpful and positive to see where you started and in 6 months, see how much you have improved.

If you are in the midst of a flare, remember to take care of yourself. There’s no lazy, or hopeless, or somehow being unworthy, when it comes to taking care of yourself, taking the time to rest when you need to, not cleaning or cooking and enlisting help; don’t feel guilty for putting off that shower or taking a nap after showering, don’t listen to people who may criticize what you are doing, because if they aren’t in your shoes than they have no business telling you how you should be living your life. Don’t be sorry for doing things to take care of you. End of story. We only have one life, and in the brief time we are here we need to do things that help make us feel better. Be good to yourself.

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!



Cancel Culture

There’s been a lot of discussions recently on “Cancel Culture,” and for the most part, I’ve kept my opinions to myself. In some instances, I understand why. Dumbo’s murder of singing crows, for instance, is clearly racist and I understand why a company geared toward children would take it down. I think most headlines were inflammatory on the subject because if you read the article, they are only removing it from children’s profiles. You can still access it in the adult Disney programming and if you want you can watch it with your children, along with The Aristocats and Peter Pan, and make it not just a recreational moment but a teachable one and explain to them why the depictions are not okay. 

Today we learned that Pepé Le Pew would be eliminated from the upcoming movie Space Jam 2, but Speedy Gonzales would not. In some aspects, I can see why Monsieur le Pew would be axed from the movie with is misogynistic ways, and merciless hounding of Penelope Pussycat. As a victim of sexual assault, and as a woman who has experienced this type of behaviour first-hand from aggressive men, I can see how his character would be seen as “normalizing rape culture.” However, according to Fatherly[i], “Le Pew’s scene, which was reportedly going to speak on the importance of consent in all romantic encounters, was cut from the movie long before,” these previous cancellations or before an article written on Monsieur le Pew’s bad behaviour was written in the New York Times. This still hasn’t stopped everyone from getting their knickers in a twist about this or voicing their opinion on the subject (like me).

The fact that Monsieur le Pew was axed and Señor Gonzales was not, does bring up some issues for me. I don’t think there is any difference between how Speedy Gonzales is portrayed, in comparison to, let’s say, the Siamese cat in the movie The Aristocats. Both are caricatured versions of ethnicity, which if you look at Speedy’s cousin, Slowpoke Rodriguez (aka Tranquilino/Lento), there is a perpetuation of the idea that all Mexicans are slow and drunk and character uses a gun to help him be more effective where Speedy has his quickness. It seems there is abundant enough reason to eliminate him (not that I’m supporting this, only arguing this), as much as there is reason to eliminate Pepé. However- and I think this is important- why are we not making this a teachable moment for children? Why has it become so much easier to vanquish literature, or characters from this existence or hide it up on a shelf somewhere, where children can’t access it until they are adults? It feels like our children would get so much more out of this if adults/parents/grandparents/teachers, could take a time-out and explain why this may have been portrayed in the way it is, and why it is wrong and why we shouldn’t do that in the future? 

I say this with a parents’ experience raising four girls to adulthood. We watched all the movies in question and my husband and I took the time to explain to them why each scenario was harmful and hurtful. I feel that if we raised our children with that “it takes a village,” kind of mentality, that there would be no need for “cancelling” anything. It seems like they are taking the choice from parents in some aspects, but with rampant disrespect of people and culture and women, there is a part of me that understands why. If we can’t unite and agree as a collective that racism is unacceptable, or that misogyny won’t be tolerated, and that no-means-no, then the problem becomes more about who we are, then about what we are cancelling. 


[i] Pepé Le Pew Won’t Be In ‘Space Jam 2.’ Nobody Is Actually Mad, Harper Blake; 3.10.21(https://www.fatherly.com/play/pepe-le-pew-new-york-times-space-jam-2/)