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.
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.
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.
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.
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.
“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?
“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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Thank you for reading, sharing and following my blog. It really means the world to me.
Oy. If I had a dollar for every time, I blamed myself for my illnesses and for passing some of them along to my children I’d be rich. No lie. I think we all do it at some point and some of do it more than others but it’s definitely not healthy. I’m a strong believer in your mind and body believing what you think and if you are actively blaming yourself, I think that your mind will eventually believe it and that is not good. You are not responsible for an illness that was never your fault to begin with.
Compassion: Yes, you heard me correctly. You need to have a little compassion for yourself. It might be easy to feel compassion for others but, somewhere along the line you stopped feeling it for yourself. Take a deep breath inward and remember you are human too. Remember that your illness isn’t something you asked for and that you deserve compassion from the person that matters most, yourself.
Mindfulness: There’s recently been an influx of talk about mindfulness. In the media, commercials, everyone is talking about it and they should be. I believe we become better people when adopt a mindful attitude, especially with ourselves. How do we adopt mindfulness? I think slowing down is important. Our days can be cluttered with appointments, kids, significant other and work that we forget about ourselves. Being grateful and giving back to others is important too. Sometimes we get so wrapped up in how bad our illness is that we forget about what we have in our life that makes it worth living. We forget about the things that make us happy and it’s important to stop, take a breath and remember those things that give us purpose. Contributing back to the community can help us be mindful of what we have. Volunteering is a great way to help your mindfulness activity and you can volunteer just about anywhere doing anything, even from home.
Meditation: This works hand in hand with mindfulness. Quieting your mind, which can be a very busy place, and where you can adopt a whole slew of self-loathing and contempt for your illness, can be quieted and pushed away by practicing meditation. It can be small at first. No one goes into meditation for long periods of time without some serious training! My favourite methods of meditation that I have taught my children is the candle technique, where you look at a candle and watch the flicker of the fame and just try to focus on it. I don’t believe in clearing the mind because we are always going to have something in here. It’s human nature to think and we don’t have an on-off switch. I think if you find yourself thinking about the same things over and over again pick one and try to figure out in your head why it’s so important. Music meditation is something I do. Listening to music is a favourite hobby of mine and there’s a running joke here that every song is my favourite song because I say it so often. Listen to your favourite music and try and relax. I wouldn’t listen to Ozzy Osbourne or Marilyn Manson here. Great music but a little too much for this activity. Listen to the music and meditate on your day or your illness if that is what is predominantly on your mind. Try to figure out why these thoughts are bothering you. I also incorporate a mantra. Write down a positive mantra, and you can find them online or make up one on your own that helps you feel positive about yourself and helps you to feel strong. Repeat this mantra when you are meditating. When you say things enough times, you begin to believe them. Believe that you are not at fault for your illness. No one asked to be sick.
Some people recommend exercise. I don’t have it in my list because not everyone can, but- if you can do some activity that helps you relax, where you can tell yourself that mantra you have chosen, go for it. Yoga is something that is beneficial and that you can do low impact and even from bed. Seriously. I have found some yoga exercises and sequences that you can do right from your bed. If you just can’t, find something else. Colouring or doing some kind of artistic craft can be very beneficial for your mind and soul and I believe you can make just about any calming activity into a meditation period by just being at peace, saying that mantra and relaxing yourself in your art as much as you can. If you get diverted by other thoughts try to figure out why those interrupted the moment. Then, get back on track.
My final word: Don’t blame yourself for something that was never your fault to begin with. Illness is never something anyone should be saddled with guilt over. Especially long-term illness. It just is. You can think of it as fate if you want, the cards you were dealt, but it is not your fault. Don’t blame yourself.
As always, if you like what you are reading consider a small donation. It would help millions so I can continue what I do.
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.
I’ve been gone a long damn time, or at least it feels that way. I bet you thought I left for good? I hope you didn’t. I’d never do that. It’s difficult to tell talking into the void the way I do, but I hope there’s someone out there listening. I always try to answer when I get a comment or question. It’s inspiring and it helps motivate me knowing that I’m not alone, even when it feels that way. After all, that’s what I tell you. You aren’t alone.
There’s been a good reason for me being away. I’ve been extremely busy with life and life has been throwing some huge curveballs my way. My husband has been getting ready for a deployment that we’ve known about but has gotten delayed because of COVID. Now he’s gone and things are a little more settled, but only slightly. We got a new puppy just before he left. It’s something I’d been thinking about for a while, but finally just got the courage to do. After the death of out Pittie, Bowie, my heart was just broken. He was only 6 and he had gone from healthy to on death’s doorstep, literally in a few hours. It took 2yrs for me to be able to mourn him and be able to open our door again to another dog. This one is a Catahoula Leopard/Pittie mix and he stole my heart the moment I saw his little face in the rescue shelter website ad. I stalked it for 2 weeks before I had enough courage to go to my husband, knowing he was readying to deploy, unsure he would want to get a dog now. I’d also just undergone surgery for a spinal stimulator and the recovery was a bit brutal, and I was questioning whether I could handle training a puppy on my own while he away. By the time I decided I could, I thought for sure the puppy I’d seen would have been snatched up already, but there he was and even better, my husband thought it would be a great idea for me to have the puppy while he was away to take my mind off his absence. We adopted the little guy and I named him Nashoba, which supposedly means “wolf” in Choctaw. (Don’t quote me on this- it was something I found while looking for names for him, and because Catahoula’s are bred from the Molossus, Great Dane and dogs Native Americans used, I wanted to name him something that tied him to his roots. Yes, I am that person. LOL)
Nothing has changed with my health while having Nashoba, which has made having a puppy a little challenging. The one piece of advice I could offer any chronically ill puppy owner (and I’ll probably have a post coming out soon) is nap when they nap. If you have ever had a newborn (and even if you haven’t) you know they are notorious for not sleeping at night, but also requiring upwards of 15+ hours sleep per day. Take advantage of this. Rack out when they do. Forget chores, forget life as you know it for a few weeks while they are getting trained, my friends. It is a full-time job, which is why I have neglected my blog. I have barely been able to function for my family, let alone be able to research effectively for my blog and then be able to train a puppy and give him the attention he needs AND give my other puppers the attention he needs. He is a senior, who although loves his new playmate because he misses his previous one, also wants individual attention. So, it is important that if you have another dog, no matter the age, you are giving them the attention they need to and not so bogged down with one that you are utterly exhausted from training or just looking after the pup that you flop into bed at night and fall asleep. The flip side is that you are burning the candle at both ends, and trying to undertake everything, which leaves you in the same position- utterly exhausted. I know this to be true because burning the candle at both ends is my middle name.
I don’t ever go into things thinking this is what I am going to do. But I have found out in these years living with chronic illness and chronic pain, that because you have a measure of your independence taken from you, is when you have the opportunity to take it back you leap into that chance with everything you have. Backtracking here a little bit in my story, that surgery for the spinal stimulator- though it didn’t cure me by any means, it alleviated me a little of some of my pain. Someone who doesn’t live with chronic pain 24/7, 365 days a year, doesn’t understand how a little bit of an alleviation can transform your life. Do I still walk with a cane? Yes. Do I still take pain pills? Yes. Am I still in pain 24/7 365 days a year? Actually, yes. It’s just a little less so I can function a little better and do something’s a little better. The point I am trying to make here is that feeling a little better, sweetened the illusion and made it easier to burn that candle at both ends. But chronic pain is just one aspect of what makes me not feel good, and the chronic illness always makes things challenging. It didn’t matter whether or not I waited to get this puppy now or later, chronic illness was going to be my constant companion and the truth was, my mental health was beginning to head in a downward trajectory and I new having him in my life would be good for me. I love taking care of things, teaching them and watching them grow. It’s a great feeling. And there’s nothing quite as wonderful as the bond that develops with a well-trained dog, or any pet that you keep and rear from young one. I have a cat that I feel just as strongly about. Having animals in my life is extremely important to my well-being. They help me to be happier and feel better on days when I am not feeling well at all.
Swinging back to health-stuff; I swallowed a camera pill to see if we can finally nail down a Crohn’s diagnosis. They’ve been treating me as though I have Crohn’s because I have all the symptoms, but only loosely. To treat me, they need to be able to see where the damage is and so far, it has eluded them. They’re hoping the camera pill will reach in places the colonoscopy could not, given the length of the intestines and where my pain seems to be located. I’m happy it finally worked out as I seem to be active in a flare, so I’m praying that little pill takes some really good pictures after the God-awful prep I had swill down. I swear, it is absolute torture IBD patients have to go through to see what is going on in our gut. They’re going to be looking for any bleeding and damage as I have been anaemic and I may be bleeding from somewhere. Not badly, but enough where it’s causing me to be anaemic. After all this, even on the bad days, I still have hope that I’m going to be managed enough where I can carry on enough to function like a quasi-normal person. That moderately sunny day is enough to get me through to the next day.
I also made the monumental decision to change my rheumatologist. I didn’t feel like after two years under her treatment I was progressing in the right direction. I wasn’t getting worse but I wasn’t feeling great and there wasn’t a lot of feedback about the medication she was giving me or why she was giving it to me and as a blogger, advising my readers to take charge of their health and who they see and not be afraid to change their doctors if they don’t feel they are getting the care they need, I felt I wasn’t following my own advice. So, I investigated doctors in my area and found one who had tremendously positive reviews and was named number one in my city by U.S. News & World Report. I lucked out in that the doctor is a woman because it was a personal stipulation of mine- not that I haven’t run across terrible female doctors, but I always personally feel that they tend to understand women better. My first appointment with her was amazing! To my relief, she said my rheumatologist had not misdiagnosed me, but the medications I am taking are all at very low dosages including my infusions. We are aiming to increase the dosages to maximize therapeutic levels in hopes that this will help me feel a great deal better. Today, 8.6.2020, was my first infusion at the higher levels and it was a little rougher than usual but nothing I can’t handle. I’ll keep y’all posted on progress.
Before I forget, there was also the decision to go back to school! I took one summer class that I got an A in and I have one more class- Algebra that is my nemesis, and then I will have officially graduated. Just one more thing on a very, busy plate of things to do.
Ok, this turned out to be a much longer post than anticipated, but I wanted you to know I didn’t forget about you. I will be here keeping you posted on my life, on my health, deployment, on the puppy and all of it as I get time but it will be more sporadic than usual because of everything. If there is anything, you’d like to see me write about, if you have any ideas, thoughts or suggestions, please drop me a line. I am always grateful for the thoughts and ideas of my readers. Without you, there’d be no blog and my life would be much different. I appreciate and value you very much.
**Images are not my artwork or creation and I don’t claim them to be.
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.
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.”
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.
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?
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.
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.