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.
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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.
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.
KimhēKim fashion brand posted videos from its September 24 Paris Fashion Week show, which features a model walking up the runway in a T-shirt labelled Sick across it with an IV as an accessory instead of a purse. The collection is described as “energetic,” as models sported black sunglasses and either carried selfie sticks or IV drips. Among some of his reasoning for this line: “This collection is about attention-seekers spending their summer vacation in a hospital.” He also says, “These days we all want attention and positive reaction from people, especially on social media. But instead of hiding it, let’s just be honest and admit that we want it, but do it with elegance.” (Burlet, 2019)
Okay. There is a lot to cover, so let’s get down to it. As a person with chronic illness (autoimmune disorders), who goes every six weeks and sits for roughly two hours with an IV for infusions, who is SICK, and who doesn’t give a crap about being elegant about it because I’m not an attention seeker- wow! This takes absurdity and shock fashion/art to a whole new level comparative to Bstroy, which showcased their bullet-like hole hoodies, and names of schools who had experienced mass shootings. It’s difficult for me to grasp why any designer would want to take these tragedies and exploit them in this way. But by his very own words, “attention-seeking” and “spending their summer vacation in a hospital” he truly doesn’t understand the difference between sick and trendy or fad. Where the rich or elite go to IV Infusion Bars to receive vitamins and rehydrate after a night of partying. I also considered that this collection might be in part to poke fun at these rich and trendy types, with their IV drips and selfie-sticks but I think it failed because of the manner he went about in showcasing it that would have been solved with one word: Not Sick.
I kept reading his words over and over again trying to understand his reasoning for this outrageous collection. It did not seem like a purposeful attack on the chronic illness community, however ignorant it may have been. But before you become angry with me, ignorance is never a defence and yet, I would still try and understand him. What I zoned into was the part he says “we all want attention and positive reaction from people, especially on social media. But instead of hiding it, let’s just be honest and admit we want it, but do it with elegance.” I read this and interpreted from him that these people who are flying off to these resorts they call “hospitals,” for their IV drips and “medications,” because they’re “sick,” should perhaps be honest about what they’re doing, be more authentic about themselves and while they are doing so to be more elegant and fashionable. But he widely miscalculated this interpretation and in doing so offended another community who is Sick and who is Not Attention-Seeking. Those suffering from Chronic Illness.
My first reaction when seeing the Instagram posts were quite visceral. I was instantly angered that someone could be so obtuse that they would throw this “Fashion” out there to be oohed and aahed over by fashion gurus and the general public everywhere. I may not be a fashion follower, but I know enough to know that Paris Fashion Week is a big deal and something like his collection can suddenly shift chronic illness and the people suffering from it into a negative light. We already bear enough scrutiny in our daily lives from the public that seeing this on the catwalk made me mentally scream and then take to social media to vent my anger the only way I could. But because I blog, I decided to use this platform as a way to explain to readers why this angered so many. However, I thought it was only fair to research why he may have created this collection, to begin with, hence the reason the introduction is laid out the way it is, which is only a logical guess. He’s been pretty cryptic about the meaning and inspiration of the collection and I did my best to be fair. He’s a fashion designer, successful from what I have read, dealing with an element of society that we might call the 1%. I am not implying that the 1% doesn’t deal with chronic illness, but what I am saying is that they can check into hospitals on a whim, for summer vacation, whereas the working class do not.
So, I’m wondering if there’s a bit of ironic humour going on with him somewhere there. A stab at those elites who think that checking themselves into the hospitals for a summer equated to being “sick,” and not vanity? His collection backfired among those of us who are sick. Did it backfire as a whole? Did it do badly at the Paris show? I don’t honestly know? Will it draw chronic illness into a negative light? Will people think that we are attention-seeker’s more now than we were before his collection? I don’t think so. Was it in poor taste? It’s aggravating to me as a chronic illness advocate, as someone who struggles with chronic illness, to wake up one day and see things like that. It’s frustrating. But then I remember, that’s why I am here. I’m here not only to bring awareness and to bring positivity to people who are sick, and their families, but also to those who know nothing about the illness and the chronic illness community, like him. So try not to despair when you see things out there like that my friends. Band together and redouble your efforts to spread awareness.
The necessity for a more integrated medical approach.
Let’s face it, everywhere you turn you are blasted with information about how important it is to treat your body, mind and soul. While it may have begun as something of a New Age thing, or maybe something that only those Yogi’s did, has quickly integrated itself within our mainstream society, philosophy and medicine. These non-medicinal reaches extending into our surgical units, where recent research has been done regarding the use of aromatherapy to combat nausea after surgery. The reason I bring this up is that every day we are being introduced to more and more reasons why maybe, we should step back and take a look at the bigger picture of our body and why we should perhaps not reach for this or that pill. But when we go to the doctor seeking help, we are often treated like a car on a conveyer belt and directed to this specialist or that specialist. While this is fine in some respects, for many of us with chronic issues, it’s a nightmare. Especially when you have 7-8 specialists and they don’t communicate with one another. This needs to change.
I’m not rebuking Western medicine here, nor saying that we need a complete upheaval of our current medical care. In fact, I’m only suggesting one, small change. Talking to one another. This has been the subject of other posts as well because, in an age where we literally have the power to talk to someone at our fingertips, I don’t understand why doctors can’t talk about their patients. And some do. Some are very involved in how they treat a person, while others remain quite apart from it, leaving it to the patient to relay messages and information that might be muddled before it gets to the doctor’s ear. We’ve all played telephone, right? How does a doctor expect a patient to relay information to the next doctor in the same, exact form in which it was received? What if the doctor has questions about what was advised to the patient? Where is the debate about treatment when the patient has no medical background? But sadly, it hardly ever gets to that point. You go to the neurologist and he gives you medicine for problem A. You go to the gastroenterologist and he gives you medicine for problem B. You go to the Rheumatologist and he gives you medicine for problem C. You go to pain management and he gives you medicine for problem D. But, what if problems A, B, C and D are all interconnected? What if it’s not the medicine that you need at all but someone to connect the dots and take stock of the whole you?
Integrative Medicine: A form of medical treatment that combines practices and treatments from alternative medicine with conventional medicine. There is an emphasis on the “whole person,” and focuses on wellness and overall health, rather than only treating the disease.
My favourite part of that whole definition, besides “whole person,” is “rather than only treating the disease.” We’ve become, in my opinion, rather over-zealous in the treatment of disease and the use of pharmaceuticals and I think this has been our greatest downfall in our application of conventional medicine. Once upon a time, to become a doctor was as sacred a calling as becoming a priest. It was generations of fathers (as a male-dominated field) who had sons, who were followed this path of healing. “First, do no harm,” was an oath breathed out upon the lips of these doctors with reverence. A reverence that extended to the profession, the body that they would be treating and the manner in which they would be treating them. I’m not saying that there weren’t bad doctors in the past, what I am saying is that the approach they took for the treatment of the body was more holistic than what we have now. There was a relationship between the doctor and the patient that you cannot cultivate in the 15 minutes you may have to speak with a patient now. There was an emphasis on the treatment of the whole person, which meant taking into account what they ate and what they did for a living and what they did in their leisure time that you may never know about a patient now. The prescription of medicine was given with far greater care and with an honouring of how these medicines might affect the rest of the body. Western medicine has never been as holistic as Eastern medicine, however, we are looking towards pharmaceuticals to solve all of our ailments, without looking far closer to home first. And to be fair, it’s not just physicians or pharmaceuticals, it’s the patients too who want these “quick fixes,” without regards to how much of a chemical cocktail they might be putting into their body. I’m one of them. We all want to feel better. And we all want to feel better right now. But at what cost?
My PSA: I’m not pushing the No Medicine/Totally Holistic philosophy. I fall somewhere in the happy medium. And I greatly understand the need for medicine. It saves lives. No doubt in my mind. What my message is here, is balance and respect for both the pharmaceuticals and for your body. I respect people’s decision regarding their treatment. This is my decision.
The cost equates to side-effects from medications that begin to impact your body and where you develop symptoms and other (possibly) long-term problems from these medications, which end up requiring more medications. It’s a vicious cycle and one that I’m half-convinced that pharmaceuticals count on to keep you as a patient. Think about the long-term revenue that both doctors and pharmaceuticals earn from those of us with chronic problems that have no cure? We’re cash-cows. We’re the Golden Ticket. Keep us functioning; keep our symptoms managed and you have steady millions of patients who have to be prescribed countless pills, including pain medications and who will never get better. Is that not the perfect plan? But what about those of us who aren’t content with managing symptoms? What if we dream of something better? What if we dream of something more than “conveyer belt medicine,” where you’re rolled through in 15 minutes and written a prescription by a specialist who doesn’t care about x and y problems and only cares about z. Our body, our future; we need to advocate for ourselves this balance until our medical community is once again reminded of its roots.
To those of us with chronic illness or autoimmune disorders; to those of us with chronic pain, being tired has taken on a whole new level of meaning. It’s something that without meaning to, becomes this group of exclusivities, where you find yourself saying things like, “You don’t know unless you’re experiencing it.” Which, sad to say, is true. And in one fell swoop, gives you all the perspective you will ever need because you suddenly have this point of view of what it was like before you were sick and after. My life has suddenly taken on a B.R.A. [Before Rheumatoid Arthritis] and A.R.A. [After Rheumatoid Arthritis] among other fun comorbidities, like I’m some epoch of history.
But how do you explain to someone who is healthy how you experience fatigue? Especially when people use it so commonplace and not necessarily wrong? Fatigue like pain can be relative and what they are experiencing is relative to what they have experienced up to that point. They don’t have a wider point of reference like you do now, and that doesn’t make them wrong. It just means that you have to paint the picture better. So how do we do that? It can be extremely frustrating for the masses of us out there who are trying to explain to friends, family, bosses, or anyone else what we experience when we tell them how tired we are and their response is, “Oh yeah, I know. I only got four hours of sleep last night.” It’s one of those moments where you want to face-palm because you get it- you feel sympathy, but you also know its way beyond 4-hours sleep.
Fatigue is like treading through a vat of Jell-O for hours with no sleep, after running a marathon and lifting weights while you are feverish, have flu-like symptoms, are suffering from a migraine and have swollen, aching, joints. It’s all of this compounded with needing to keep up with your work and home-related activities and anything else that is expected of you, while you feel like your body is leaden from exhaustion and you wonder how you are going to type the next sentence on the computer, because your eyes want to close and your fingers don’t want to work. It’s always pushing yourself about 150% just to make it to about 30% of functioning. And no one understands it. Not unless you are living it and going through it and trying to figure out how you are going to manage from the day. I could try to explain it to you and every other chronically ill person who deals with it could try and explain it to you and still, you’d only be able to grasp the tip of it. A theoretical understanding of how it is to live with chronic fatigue, because until you are in it, experiencing it, unable to call in sick afraid you might lose your job, having to take care of sick kids and a family despite not being near 100% yourself and struggling everyday- you’ll never get it. Not ever.
But does not understanding it means that no compassion can be extended to those suffering from chronic fatigue? Does it mean that those on the other side of this, must continue to look at us with scepticism? I would hope not. I have never adhered to the philosophy that you have to experience something in order to offer some kind of empathy. I understand I might not ever understand it in the way the individual experiencing it will, but I can try to understand what they are going through and I can try to ease their suffering and perhaps educate others. People should not have to needlessly suffer at the hands of ignorance, and this is why I do what I do. So, if you know someone who says they experience chronic fatigue, or you experience it and have someone who doesn’t understand it, maybe reading this will help them a little.