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’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.
Tell me when I’m going to adjust? I don’t think there’s any way to adjust to chronic illness. I think it’s just one enormous roller coaster ride you have to brace yourself for and hope for the best. When you reach the top of one peak, you stare down and close your eyes and when it shoots down, you scream, hoping nothing will happen. You hope the car won’t skid off the tracks and that you won’t go flying out of your little, boxcar. You hope your blood pressure and your heart can take the whips and bends and the peaks and slopes. And it will never be when you expect.
Tell me when I’m going to adjust? To the days when I feel so badly that I don’t want to move from the couch? Where getting up to fix breakfast feels like a monumental task set forth by the Gods to Hercules himself, and I’m there in his stead looking dazed and confused? When I’m feeling so lethargic in my brain as I sit down to write, that I feel like I need a cattle prod to tease my brain awake and even then, it’s yawning and stretching without any sign of life, leaving me there to stare blankly at a page on the screen wondering if I’ll be productive or not today.
Tell me when I’m going to adjust? To the ever-multiplying issues of what began as one chronic illness, that is now eight chronic issues. How do I adjust to my life when some of these issues are progressive? When walking with a cane now, and sometimes even needing a wheelchair will mean needing a wheelchair more than needing the cane later on in my life? How do you adjust? I read something, somewhere, talking about how older people with chronic illnesses have at least been able to make memories, whereas young people have not been able to do that. But where is the line? Where is the cut off of ample memories? Have I made enough memories 35 when all this started? Or 40 when it started to get bad? Or 45 when I’ve been reduced to the cane and wheelchair when I need? When is the cut off for memory-making?
Tell me when I’m going to adjust? To the ever-present, every increasing, pain that is in my life and that has control over every facet of my life in ways that I never dreamt of. Pain, that was once something that I dealt with on a localised basis, mainly in just my head, which was enough on its own to knock me down for two weeks sometimes, if the migraine was that bad, has now become something I deal with in multiple areas, where the pain doesn’t go away and that I live with 24/7. I never, in any terrifying dream, thought it possible to exist in the manner I find myself existing, and yet, here I am. But I wouldn’t call it adjusting. Adjusting implies that you’ve found some balance in your life with your condition and there is no balance. It’s just life on one big see-saw. You’re either up or you’re down.
Tell me when I’m going to adjust? Friends will understand and so will family. They will adjust to your life as you know it and they will support you. Tell me when that will happen? My family, for the most part, understands, but adjust? I think they have adjusted about as well as I have. And the kids- the kids shouldn’t have to adjust to life with a mom who can’t participate in life the way other moms can. It sucks. My kids have taken on like as caretaker for me. They drive around Miss Daisy. They worry about their mom all the time. It sucks. My friends? I don’t have any outside of my computer. They all left. They couldn’t deal with a sick friend. They couldn’t deal with someone who maybe needs to cancel plans at the last minute, or who can’t eat the same things or can’t jump around and do crazy things. I probably have more in common with folks in a Senior Living Home (and that is not a dig, I’ve actually always got on better with people older than me- the plague of being an only, imaginative, sensitive, intuitive INFJ-T, child). Even now that my children are adults, it’s difficult to do things. We’ve broken down and purchased a wheelchair for when the events are too much walking for me and my cane. But it’s still difficult. They can’t make plans without taking into consideration their ol’ mum. Tell me when they’ll adjust to that? Never, because it just gets worse from here on out.
Tell me when I’m going to adjust? To a progressive illness? It may not happen in five or ten years, but at some point, things are going to go from bad to worse. How am I going to adjust to that? I can barely adjust to my life now and I will be expected to adjust to things then as well. How can it be so easy to just say to someone, adjust? Forget how life used to be before your body betrayed you; ignore how your body failed you and pretend that you don’t live in pain 24/7. It shouldn’t be that difficult right? You are only human, with flesh and bone and nerves and blood.
Tell me when I’m going to adjust? I see more doctors than my 83-year-old father. I’ve had more tests and surgeries than he has too. Tell me when I’m going to adjust to seeing my body in the mirror and looking at the scars left by countless surgeries and stitches that have tried, in vain, to fix me? The hip surgery (total hip replacement) and spine surgeries (lower lumbar fusion and sacroiliac fusion)? Those are just the visible scars. The scars on the inside are more difficult to bear. The scars on the inside are more difficult to contend with. The mental illness can be more debilitating than physical illness. But coupled with the physical illness, it can be unbearable. You don’t adjust; you just live. You live hour by hour, sometimes minute by minute, fighting tooth and nail along the way because you refuse to give in. Because you still have so much to live for.
That’s what this ends up being all about. Not trying to adjust to this life of illness and pain, but about living. Living the best way, you can, through the worst times imaginable. You just live, because you can’t adjust to pain and illness, ever. You can’t adjust to it because it’s always changing. Symptoms are always evolving and sometimes you find out that you have new things wrong. There’s no adjusting to that. You just live. You wake up in the morning and you feel grateful that you can start the day. You feel grateful that despite the pain you can see your kids and plan a future with your husband. You take it hour by hour and minute by minute if that is the only way you can do it. Grateful for the seconds in between. You don’t adjust. You just live.
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.
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.
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.
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.
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.
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?
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.
There’s been a trend in my recent writing topics, that I can only define as WTF. I’m not being very eloquent about it, but there it is. WTF stretches a broad range of experiences that I’ve discussed both in my blog and for National Pain Report. One of my doctors telling me he doesn’t believe I need a cane, based on my MRI, but not offering me an explanation as to why I feel I need it because I’m unsteady on my feet, bumping into walls and my knee giving out on me. But it’s perfectly okay to shame me about using it and offer physical therapy as the Holy Grail of cures after three years of procedures and surgery. There’s also been the well-meaning “I hope you feel better,” that while well-meaning, becomes an irritation after you’ve explained your situation multiple times and are not truly heard. Something I haven’t written about but will be covered soon, that also falls into this, WTF feeling, is when you are made to feel as though you are faking your illness with those very people who are supposed to be taking care of you. I’m talking about the medical professionals in your own doctor office and hospital. Today, I’m discussing the very many ways that people (close to us as well as strangers) are in denial about our disability and aren’t afraid to tell us.
·You’re not really disabled, you’re just fat: Yes, this happens. I have heard it time and time again and it makes me livid. I’ve never been explicitly told this, but I don’t think it matters. In my case, when I was just beginning this chronic journey and trying to figure out what was wrong, my first place to start was my PCP. Instead of sending me for tests or at least another doctor if they didn’t know what was wrong, I was given diuretics for my swollen fingers and forced to speak to a dietician who told me losing weight would be best for me and I should eat from smaller plates. Yes, she actually said that. My experience is a fraction of what people out there experience. I’ve heard of a woman who did not look obviously disabled, parking in a disability parking spot and when she returned, finding a note on her car saying that she didn’t actually need that spot because “she was just fat,” and she was taking spots from “people who actually needed them.”
·Your disability doesn’t look like mine: This problem isn’t just among the -abled, it’s pervasive everywhere. The basic idea is that because your disability doesn’t look like mine, then you must not actually be disabled. This can be with anything, and I guess it’s because we are judging the progression of the disease or the severity of it through other people. The thing is, we are all unique creatures. Just because I have fibromyalgia and my neighbor has fibromyalgia, and we’ve both been suffering for seven years but I’m younger than her by ten years and use a mobility aid, doesn’t mean I’m not disabled or I am exaggerating my illness. I feel it is hurtful to make those insinuations about someone because we don’t know their entire medical history, nor is it any of our business. We should be supporting one another, not becoming part of this culture of undermining those who are chronically ill/pain. We have enough people doubting us, we don’t need more.
·You aren’t disabled unless you are using a mobility aid: Almost contrary to my thoughts above, is the idea that you aren’t disabled unless you are using a walker or cane or wheelchair. I don’t know if this thought comes from the way the disability icon is drawn, with the figure in the wheelchair, but it is something even I had a bit of difficulty working my head around when I began using a cane and received a placard. People do not realize the wealth of issues that can prompt usage of a disability placard or identifying as disabled. A cane doesn’t make you disabled. Your disability makes you disabled. PTSD is invisible and the person can run and jump without issue, but needs the disability placard to get in and out of a facility quickly. There are many illnesses and many who have chronic pain but do not use a mobility aid, who are disabled but you would not see. Disability is not something you can necessarily see and society should understand that.
·You’re not really disabled; you just don’t want to work: This has got to be one of my favorite misconceptions. While I will concede that there are some out there who would use a fake or exaggerated illness to get out of working, I don’t believe that the majority of us do this. Working compromises so much of our identity and is so important to our ability to survive and just support ourselves, that I believe most people who cannot work, truly can’t work. There is a feeling of guilt when a person comes to the decision that they can no longer work and it affects them psychologically too. I know from my own personal experience that you feel defeated and you feel betrayed by your body. You also feel diminished as a person and as though you are no longer allowed certain things because you don’t have your own money. It is a lot of work recognizing that none of this is your fault and feeling good about yourself again. Disabled people want to work. It’s the accessibility of work that is the issue and the reason so many who have a disability can’t work.
·You aren’t really disabled if you only use your mobility aid part of the time: There are many who are pretty insistent that because I do not use my cane, 24/7, that I am not truly disabled. My humorous come back for this, because I can be snarky now and then, is, “Why no, my cane is actually a walking staff and I’m really a wizard.” After which I proceed to roll me eyes. Just because I feel safe to navigate my itty-bitty house, without my cane, doesn’t mean I am not still disabled. I cannot navigate outside terrain, from grocery store to parking lots without it because I never know what I might encounter. It could be a crack in the road or just someone who is inconsiderate and pushes their way in front of me because I am slow and I lose my balance. The cane helps me not to fall, it helps when I get tired from walking and begin to hurt. It’s my prerogative to use to help me feel safe in an unfamiliar environment. I think I deserve that. So, yes, I’m still disabled.
There are many more instances, but these were the first to pop into my head. Feel free to message me with your experiences and I will do a follow-up piece to this one. As always, thank you for reading.
Yesterday, I cried.
It was a hard week for me, on top of which, my partner was gone for his military duty. It’s not anything unusual, I’ve been without him for longer stretches of time. In fact, he’ll be gone for a week soon and then in the summer, three weeks. But, this small stretch of time he was gone, was profoundly difficult for me.
I’m extremely lucky in that my children are, for all intents and purposes, adults. They range in age from 24 to 18 (all girls) and my youngest, will in fact, be graduating this spring. However, we’re still waiting on the younger two, to get their driver’s license. There really hasn’t been an urgent need for them to get their license with two older siblings and with only one of us working, we’ve been trying to delay the spike in our insurance again.
I do have help from my older two daughters. I often need them to run errands or pick up one of their sisters, especially when I am not feeling well. However, with the three older ones working shift-work, there are times when it falls on me to shuttle someone to work or school or bring them home. Luckily, they do not work or go to school far however, on those days when I am feeling especially bad, there is no other choice but to press on. My function as Mom has not ceased because I have chronic illness and pain; my function as Mom doesn’t get easier on days I don’t feel well. Sisters have fights; there’s drama on occasion and I have to be there regardless if I am sick and regardless if my husband is not there. Sometimes, it’s overwhelming. Sometimes, I break.
When he came home yesterday, I had a meltdown over something stupid. I realized everyone, including him, was looking at me like I lost my mind. He’d been gone and it hadn’t been a fun time for him either, and instead of expressing happiness that he was home, I got irrationally angry over something stupid. When we retreated into the bedroom to talk the anger dissolved into tears with me nearly sobbing. I was flooded with emotion and frustration over what chronic illness has robbed me of; continues to rob me of. Four years past from when this all began and I still continue to mourn my past self.
I write about chronic illness. I write about mental health. These are things I am intimately familiar with. I often read about how chronic illness and pain can cause depression and anxiety but in the context of a person who doesn’t already have this. I am bipolar with anxiety and OCD and I can tell you, that my chronic illness and pain have a profound effect on my mental health. The only analogy I can conjure is that of torture. Chronic illness and pain are a continuous assault to the body and mind. There is no respite from it, and if there is that brief space where you can breathe, it is short-lived, as the recurrence of symptoms and pain seizes your body violently and steals your breath. Now, imagine being tortured and having to continue with your day- continue with all the responsibilities entailed in that day- with a smile. Most people can’t understand what that must be like. It was certainly the furthest thing from my mind four years ago. Four years ago, pain, was something that could be fixed.
I try to live the best life I can. Most days I wake up with a sense of purpose and a positive frame of mind. I have to. I have a family who depends on me and while they may not depend on a paycheck, they depend on all sorts of things from me. Most of all, they depend on me being there as best friend/wife, mother, daughter and friend. These are the things I think about when I’m on that downward slide. But there are times when I need to cry and it’s okay. It’s letting a little of that ‘emotional steam’ out of the pot so I don’t explode like I did yesterday. We often hear about being positive and having motivation but this life we’ve been given is not an easy one and we aren’t un-feeling things. We need to cry and flail and get out our frustration or we’ll explode and become very resentful of our situation.
Yesterday, I cried, but today is another day. I respect my tears and treat them as a stepping stone; something that is needed for me to continue to thrive in order to be able to deal with this life I’ve been given. So, let yourself cry.
Please stay tuned for more blogs this month as I devote March to Chronic Illness/Autoimmune Disease Awareness.
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I first realized how dire my personal battle with pain was almost 15 months after I stopped working and I didn’t feel a noticeable difference. There had been some hope I’d been harboring, mostly in secret, that a little rest and relaxation would somehow, miraculously cure me. That truly brought the complex nature of my chronic illness/pain, into sharp focus for me. What was worse, was that now that I was considered a “house-wife” (and while I could write a whole other blog on the misogynistic origins of that term, what I simply mean here, is: not working outside the home) it seemed that I was even more busy than when I was working. There is this pervasive idea, that not being employed outside the home makes your life easier, when in fact, it does not. It does afford me some luxuries that working did not, such as: being able to take a nap when I need it, or the ability to spend a lot of time in the bathroom when I need to, but much of the time I am just as busy, or busier, than when I was going out to my job. Oh! And I do not get paid! However, this ill-descriptor leads both men and women to look at you with a measure of contempt, as though some great weight has been lifted from your shoulders and you should be elated and profoundly grateful for your situation. Oy…
Let me start by saying that I do not feel any resentment toward my “outside-working-counterparts.” I can’t fault them for their perceptions, however skewed it might be, partly because of how all facets of the media portrays those of us who stay home. I’ve mentioned before that lovely, turn of phrase, “staying at home and eating bon-bons.” Makes me grate my teeth till my jaw hurts, but I get it. At the same time, it’s those ill-conceived notions that make life so much harder for us who are struggling with chronic illness of chronic pain and spend the majority of our time at home. To bring this all together (finally) is that people, including friends and family and a good number of strangers, see me and many of us in the chronic world, as “high functioning.” Let me add here two things. The first, is that those who actually go out to work have an even harder time than I do. Their peers only see an individual who functions at work like a healthy person. The second, is that I added my situation within this definition of high-functioning because I consider my blog and my free-lance writing, my work and I also manage my house and everything that goes with that, from grocery shopping to cleaning and I also have all four of my children still living at home, in various stages of adult-ing. We are all seen as “high-functioning” though I would use “surviving” in its’ place. Many of my fellow warriors have no choice but to work. I have the luxury of being able to stay home, though “luxury” is not the word I’d use because we struggle a lot. I have a good partner, an empathetic partner, who knows that working outside the home was not only physically difficult, but mentally draining. I don’t want to be the kind of employee who misses work all the time or can’t keep up with my share of the work. It kills my self-esteem.
My biggest problem with “high-functioning” is that it fails to acknowledge my daily struggle. It fails to acknowledge the vast number of us that are defined this way solely because we’ve mastered the art of blending in. We’ve become as adept as a chameleon in masking how we feel because life does not simply come to a halt because we are having a bad pain or flaring. There is also a fear, for some, that if they are open with their situation that they might not have a job in the future or, that their employer may begin to scrutinize their work, looking for an excuse to let them go out of fear their job performance will eventually suffer. Slyly hiding within all this is the blind-eye we also feel from family members and friends and even strangers, with regards to our pain/illness. It never fails to surprise me how even those closest to me, evade the obvious. It’s as though if they ignore it, it’s not there. There is also the continued attempt at comparing how I feel to how they feel after they’ve had a bad day. It puts me in quite a pickle because on one hand I am mentally screaming at how obtuse they are while on the other hand, I don’t want there to be this conversation about how I feel so much worse and ticking over the infinite number of symptoms and reasons why it’s not the same thing. Finally, there’s the pity that seems to be the go-to when they don’t know what else to say. I don’t want your pity, I don’t want to hear some cookie-cutter sympathy. I want you to stop for a minute and try to have some empathy. I want you to try to understand that while I might look “fine,” I’m far from fine and you don’t have to be psychic. What I have will never go away. You sprain your ankle or twist picking up a box, you might hurt for one or two weeks. I won’t ever wake up and feel better. You ache and feel miserable from the flu. A week later you’re up and around feeling better. I flare and feel like a train hit me sometimes and that won’t go away. It might for a few weeks, but it will happen again and again, no matter how hard I try. But I’m “high-functioning.”
It seems ridiculous to label someone “high-functioning” when all we are doing is living. Is there another option? Maybe I am being too sensitive about a label that implies I am doing pretty well for what is going on with me, but when that definition misleads people and gives them the wrong impression? Yeah, I take issue with it. I might look like I have it together, but I’m still disabled, I still struggle and the pain is very real.
We have friends who have a ranch about 5 hours from here, give or take with traffic. The drive, from my point of view, isn’t too bad on a mild pain day and we typically stop mid-way for snacks and just to get out for 2o minutes. The problem, however, is that even someone who writes about chronic pain/illness all the time is bound to make a mistake when traveling. Here are a few of mine from this past trip (I’m sure there are more).
Cover your bases: In effort to travel light I didn’t pack a sweater or jacket. Though I do better when the temperature starts dropping, I also seem to feel temperature changes more acutely, so when it drops below 70֯, I typically need a sweater. We left home at 90֯ and then arrived at the ranch bringing the rain with us and a drop-in temperature to about 60֯. I was freezing my butt off and miserable so that I couldn’t enjoy myself outside as much as I wanted to without shivering.
Don’t be a slave to fashion: I’ve been lamenting my jogger and legging wardrobe and wanting to wear my jeans again. I’ve never been stylish, but constantly in leggings and joggers has begun to wear me down a little and I do love jeans. I found two pairs in my closet that seemed to fit comfortably, but I only wore them for about 30 seconds. That didn’t stop me from bringing a pair along and instantly regretting it after the first 30 minutes. I was so very uncomfortable that I wanted to cry and realized how stupid I’d been to give into a sense of fashion when pain is involved. I have to take care of me and part of that is dressing in clothes that don’t make me want to cry.
IBS Doesn’t Go On Vacation Even When You Do: I had a good week in the IBS department so I was pretty optimistic for this little weekend excursion. But IBS doesn’t take a holiday and that second day, right after lunch, all hell broke loose. There is nothing more embarrassing than having a diarrhea flare up in someone else’s house. I did have medicine, which helped, but those damn jeans- ugh, I was so uncomfortable!
The Perils Of Eating On The Road: I’ve talked about before how stressful eating is when you are dealing with something chronic like IBS. My situation is like many others where it’s basically Russian roulette. I toggle between trying to be careful of every bite and not giving a damn because it doesn’t seem like there is any rhyme or reason to it. When you are traveling and maybe needing to eat on the road or perhaps like me, at a friend’s home whose cooking you are unfamiliar with, it can lead to issues. This experience has caused me to consider perhaps bringing some things in a cooler that I know don’t bother me so that I up the odds in my favor and maybe don’t have a flare.
Feeling High-Maintenance: I said no to bringing my heated blanket or an extra pillow or two. Seriously, WTF was I thinking? I’ll tell you what I was thinking: I’m so complicated. I’m so high-maintenance. I can’t just travel a weekend without bringing half my house. Slap-self-silly. I know it’s only a weekend, but it’s not something I can go without. I know I’ll hear that horrible term, high-maintenance, in my head, but if I’m going to travel I need to practice what I preach, right? I need to bring those self-care items with me or be left unnecessarily miserable the entire time.
I think the biggest issue is not wanting to inconvenience everyone. When I look at myself and these chronic issues I deal with life has very much become about things I can do to make my existence more comfortable. However, when I step outside that little box and I look at all the things I do from perhaps the perspective of someone who has no idea I deal with chronic issues, it appears that I am a spoiled brat, or high maintenance. Almost worse than that is the perception that I’m so sickly that I need all these things which can lead to being excluded from activities, or not thought about being included because surely, someone who needs all these extra things to be comfortable couldn’t do that. My husband is very active and has friends who are very active and I hate being seen as his wife whom he needs to take care of. There are a lot of things I can still do, I just have to think about how to do them. And sure, there are things I can’t do, but I want to make the decision myself. Thinking about how you might be inconveniencing other people diminishes your importance and also your enjoyment of the trip. The whole purpose of getting away, for a short period of time or long one, is being able to enjoy it. So bring the extra sweaters, bring the heated blanket, bring the cooler of snacks and drinks so that you can enjoy the time away.