The Best Laid Plans…

As the quote goes, “the best laid plans of mice and men, often go awry.” No truer words can be said, especially for those of us trying to manage chronic illness. It often feels like one thing after another (and a lot of times it actually is), which wrecks the best of our intentions. This is how life has been in recent weeks for me. There was illness, there was not getting over said illness (which even now I struggle with remnants of), there has been flaring and there has been the grief and devastation to sort out after needing to put down our long-loved dog of 14 years.

Our boy, Grissom.

Needing to get back to work on my blog, as much for distraction as my having neglected my blog, I considered what topic would be best and I decided on ways you can be productive/ have a productive day with chronic illness. It fits, right? Because, often-times when we are struggling with constant symptom or flare-ups of one symptom after another, it has a snowball effect on our lives and what we had planned to do. Here are some tips that I hope may help you to create a better atmosphere in which to work and flourish.

Spoon Theory is a way to illustrate the energy limitations that can result from living with a chronic illness. Look it up and take it seriously, if you haven’t already. Break down tasks to make things more manageable. Listen to your body. Only you know what you are able to do, without causing further havoc on your body.

Relax. But only enough to give yourself a breather between tasks. It’s a balancing act between working, resting and not over-working yourself to exhaustion and further flares.

Remember that productivity will vary from person to person, even those sharing the same chronic illness. Don’t try to be anyone else. Just be you, boo.

Pacing. To sum it up briefly, according to Psychology Today: Pacing refers to spacing out your activities during the day so that you’re able to stay within the limits of what your body can handle without exacerbating your symptoms. Learn about it and practice it. Know when you function best. Morning person? Night person? Somewhere in between person? Figure it out and utilize it to your advantage.

Alternating different tasks can also be beneficial and not just necessary for someone like me who struggles with ADHD. When you alternate tasks between a physically demanding or mentally and emotionally demanding task and do something else you are allowing yourself to rest, or decompress, so that you can return to your task and finish it later with the same energy you began with.

Remember life rarely goes as planned, and that dealing with unforeseen tasks such as a sick child, computer malfunction, or other emergency can use up all of your energy when you are chronically ill. And to make matters worse, you often feel as though you are falling behind on your tasks. Which may be true, but not something that can be helped and you need to be gentle with yourself. If possible, add white space. This is essentially, some buffer space into your day or week to prepare or catch up on work.

Triage your to-do list. Seriously- split up your assignments into “Must-do” and “Would-like-to.” It’s also a good idea to have a back up plan for bad days so that when something does happen it doesn’t send your anxiety into over drive and unmanageable levels.

Reconsider your timing for caffeine. (Don’t hit me!) I know that morning latte or espresso can be a literal life-saver. However, caffeine is known to raise cortisol levels, but when you wake up, your cortisol levels are already naturally high to prepare your mind and body for activity. So, when you are enjoying that early morning, please wake me up, brew, you could be creating unnecessary stress, leaving you feeling jittery or in a slump just a few hours later.

These are all manageable ways to create a working environment, or even just a way to function with day-to-day tasks, that helps you thrive. Living with chronic illness can often make us feel less than. Less than who we were before chronic illness, less than our healthy colleagues at work, or less than our friends. Utilizing these little changes can help you feel more like yourself and give you that little mental bump you need to feel good about what you can accomplish.

Ditch the Resolutions

a woman writing numbers on sand with her hand
Photo by Engin Akyurt on Pexels.com

It’s almost a full week into January as I write this, and it’s been a whirlwind, for sure. Coming back from the holidays, you can feel exhausted and energetic all at once. You’re exhausted from parties, get-togethers, family, and vacations, while feeling energetic and optimistic about the New Year and the new changes you’ve decided to make in your life. I purposefully say ‘new changes’ instead of ‘resolutions’ because I’ve always hated the mandatory resolutions that came with New Year’s Eve. It felt like before that ball dropped or before it turned 12:01, if you didn’t have a resolution, you had failed in life. But the truth is that most resolutions fail. As I open up my handy-dandy statistics book (OK, it’s Google, but listen anyways), only 9–12% of people keep their New Year’s resolutions. [1]According to a 2016 study, of the 41% of Americans who make New Year’s resolutions, by the end of the year, only 9% feel they are successful in keeping them. [2] I won’t continue throwing statistics at you, because statistics give me a headache, but mostly because that isn’t what this is about. What is this about, you ask? Let me tell you.

Like most of you, I keep up with my friends out of state on Instagram and Facebook. I was scrolling through the other day when I came to a halt on one of my old school friends. Her name is Jennifer, and she is a pastor in, Pennsylvania. You can tell through her posts that she is an inherently kind person, that she puts forth great effort to practice what she preaches, and that she has a great sense of humor. I have been a great admirer of her posts for a long time now, and during the pandemic lock-down, I found her to be incredibly inspiring. Her New Year’s post is equal parts inspirational and motivational.  

Taken from FaceBook
Taken from FaceBook

As we head into the New Year, we are often looking backward into the year before or even further back to mistakes we’ve made, failed accomplishments, or things about ourselves we need to fix. We are seeking ways to “try again” instead of starting over. A new year should be about starting fresh, and I love her idea of choosing a word to focus on instead of something to fix. I am the type of person who can get bogged down in details and lose focus on the whole picture. It’s why I practice meditation, and this is a lot like meditation. You choose one word to be your focus for the year, and then you use that word to set intentions for the year.

“Willpower,” for example, could encompass passing the cheesecake or wine at a party if you are watching your weight; it could include hitting the pavement at 5 a.m. to get that run in; or it could entail setting boundaries and having the strength to say no to a toxic relationship in your life. Another word is “journey.” Maybe you have a goal like finishing school or getting that extra degree. Is there an idea for a business that you want to get off the ground? These are all journeys that we take in life that are sometimes long roads with ups, downs, and detours.

silhouette of man sitting on grass field at daytime
Photo by Spencer Selover on Pexels.com

Your journey may be a physical one, like a move across the country or out of the country. Maybe a trip by plane, train, or car is something you’ve been putting off. Or is this a metaphysical journey of the self or a spiritual journey of the soul? These are all journeys, and while your focus word may be that one word, it can unite with so many different aspects of life, allowing you to delve into different parts of yourself, your life, or your relationships.This is also an invaluable tool for the Spoonie community. These intentions that you set for the year allow you to focus on all these different aspects of your life at your own time and pace. I think it’s a kinder and gentler way to approach New Year’s goals without having a resolution breathe down your neck, that most of the time fail miserably. Let’s look forward to the New Year and all the possibilities that await us and what are you waiting for? Choose that word for the year! Here are few to get you started.

Created by Liza Zoellick w/ texture by Spidergypsy @ DeviantArt

By the way, I chose Grace. <3

Spoonie, Interrupted

(a lil’ bit)

Hello, everyone out there! It has been crazy here, as always, and here we are already looking at the end of July! Where does the time go? There are 92 days till Halloween (as of today, 7.26.22) and 152 days till Christmas! Before you know it, 2023 will be here! Sometimes, I’m bewildered at how quickly time flies by. I remember when I was a wee girl how the days would just drag on and on. Now, I feel like I need a lasso to reign it in. My kids are all grown now and living their lives, even though two remain at home and I have a grandbaby! It’s nuts. I try to purposefully slow things down in my mind and savor every memory.

a person sitting at a table with halloween decorations and a bucket of candies
Photo by Yaroslav Shuraev on Pexels.com

Let’s see, where to begin… Alright. In spoonie land, things have been meh. My recent rheumy appointment has at least supported my belief that pain management could be doing more, but the question remains, will they do more? This is not to imply in any way that my doctor is bad or doesn’t listen to me. He’s quite wonderful, and I’ve referred the family to him. However, amid this ongoing opioid war, my doctor, along with many other doctors, has taken a more conservative approach when it comes to managing pain. We regularly do injections, nerve blocks, and radiofrequency ablation for both my S.I. joint and my neck. I can, and will, bring him the recommendations of my rheumy, but it is difficult to say what he might do. I’ve been very open to procedures of minimal invasiveness. I have two spinal stimulators and I take fairly low doses of opioids. If my rheumy feels like there’s more room to go up on meds, I would hope he is open to listening.

My pain is from both the R.A., Ankylosing Spondylitis, disc degeneration, and failed S.I. joint fusion and failed spinal fusion, but also from fibromyalgia, which is more soft tissue related. There are multiple areas plagued by pain, and I know one pill can’t cover everything, so I’m hoping there is something out there (or a combination of some things) that could help reduce pain. I even brought up at my last appointment the possibility of an intrathecal pump, which would allow the medication to bypass my liver. Pain meds and medications, in general, can be taxing on the liver to filter out, so if there is something that could help alleviate the strain, it would be something to look at seriously. We’ll see what the future has in store for us.

In other news, I’ve also been watching my grandbaby. Mama went back to work and I’m happily watching him so she doesn’t have to put him in daycare. Unfortunately, both of them contracted COVID, and although they are doing well, she hasn’t been able to work and I haven’t seen the little guy. I miss him terribly, and I’m looking forward to being able to spend some time with him again. It’s amazing how quickly you become attached to their little souls. I’ve always loved children and growing up as an only child, I knew I wanted a big family. I wanted to see the relationships between siblings, and I wanted to teach them that, no matter what, they would always have each other’s backs. And they have. Now, I have this little grandbaby-a boy-and I get to share his life in this different role as Mimzy. I’m looking forward to being there for him, giving him a safe space where he can learn and grow. I know all his aunties will be there for him, keeping an eye on him and gently steering him back onto a path of goodness should he veer off the path. I know that they will defend him but also respect his space to grow and experience life and make his own decisions. I’m sure it will be quite an adventure for everyone.

My grandson and his favorite pacifier.

My other “crazy” has been because of mental illness. My anxiety and OCD have been quite active and difficult to manage. This has been affecting my dermatillomania and other body-focused repetitive behaviors (BFRB) that I struggle with. I hate doing it, but sometimes I don’t even know that I am doing it, which makes it difficult to break the cycle. One of my BRFB is morsicatio linguarum—where I bite the sides and tip of my tongue until it bleeds. I can remember doing this as far back as I can remember. It was a way of diverting the pain of childhood bullying and dealing with anxieties. I never knew what body-focused repetitive behaviors were until maybe five years ago, and only a year ago did I dare bring it up to my psychiatrist so I could deal with it. It was shameful and embarrassing. I didn’t know anyone else who did it, and then I began reading about others who struggled with the same thing, and it made me feel “normal.” I use quotes because the picking or biting may not be normal, but I am. I am just a human being who has problems like so many others, and this is comforting. I’m trying to work through breaking the cycle of biting, but it’s difficult. Oral BFRBs are one of the most difficult to break habits from because your lips, cheeks, and tongue are all accessible to your teeth. But I am gentle with myself and forgive myself when I do it, because most of the time, I don’t even realize it. If you think about it, I’ve had this problem for 40 years. It’s not going to stop overnight.

It may seem that I have abandoned blogging, but that couldn’t be further from the truth. I think my previous and more consistent posts way simply be more random. I plan on working on things around watching the baby and everything else I need to do, so be patient with me, please! There are more posts coming!

Epilepsy Awareness

Purple Day

March 26th, 2022 is Epilepsy Awareness Day.

There are about 3.4 million people with epilepsy nationwide: 3 million adults and 470,000 children who suffer with epilepsy. http://www.cdc.gov

It can be a debilitating chronic disorder that affects even the most mundane aspects of your life and can rob you of being able to do tasks that many of us take for granted.

I was diagnosed around 2008 with an unspecified seizure disorder, that took years to be able to control and has prohibited me from driving. Though I have not had tonic-clonic seizures in over a year, I still have absent seizures frequently; this means I have active epilepsy.

Active Epilepsy

An adult aged 18 or older has active epilepsy if they report they have a history of doctor-diagnosed epilepsy or seizure disorder and:

  • are currently taking meds to control it or
  • had one or more seizures in the past year or both.

A child aged 17 or younger has active epilepsy if their parent of guardian reports:

  • that a doctor of health care provider has ever told them they their child has epilepsy or seizure disorder, and
  • their child currently has epilepsy or seizure disorder.

What is a Seizure?

It’s a sudden, uncontrolled electrical disturbance in the brain. It can cause changes in your behavior, movements or feelings and in levels of consciousness. http://www.maycoclinic.org/diseases

Seizure types vary by where in the brain they begin and how far they spread. Most last from 30 seconds to 2 minutes. A seizure that lasts longer than 5 minutes is a medical emergency.

Symptoms of a Seizure

These can range from mild to severe depending on the type of seizure. Seizure signs and symptoms may include:

  • temporary confusion
  • staring spell
  • uncontrollable jerking movements of arms and legs
  • loss of consciousness or awareness
  • cognitive or emotional symptoms such as fear, anxiety or déjà vu.

Types of Seizures

Focal seizures

These result in abnormal electrical activity in one area of the brain. These can happen with or without loss of consciousness. This is called Focal Seizures with Impaired Awareness and Focal Seizures without Loss of Consciousness.

Generalized Seizures

These appear to involve all areas of the brain:

  • Absence seizures (previously known as petit mal)
  • Tonic Seizures
  • Atonic Seizures
  • Clonic Seizures
  • Myoclonic Seizures
  • Tonic-Clonic Seizures (previously known as grand mal)

What does a Seizure Feel Like?

Everyone has a different experience with their own specific seizure, however for me, when I experience an absence seizure I just blink out of existence for a few seconds. This is one of those reasons why it’s dangerous for me to drive. When I experience a tonic-clonic seizure it’s frightening and for me, I only have a brief second of awareness of what is going to happen- like when you are on the verge of falling asleep and you feel like you are falling and jerk awake. Except I am not conscious during these episodes and when I come back, I can be disoriented and almost always feel nauseous. You can read about Destiny’s Experience here.

Common Causes of Seizures

The most common causes of seizures is epilepsy, however, not every person who has a seizure has epilepsy. Some types of seizure disorder may be caused by genetic mutations and:

Other Triggers

  • High fever
  • Lack of sleep
  • Flashing lights, moving patterns or other visual stimulants
  • Low blood sodium (hyponatremia)
  • Medications, such as certain pain relievers, antidepressants or smoking cessation.

If you have Seizure disorder or Epilepsy, know that you are not alone. Seek out epilepsy support organizations to help you deal with the struggles of having epilepsy.

Epilepsy Alliance America

Epilepsy Foundation

Cure Epilepsy

September is Chronic Pain Awareness Month

Credit: Inktastic

Chronic Pain: is an unpleasant pain that persists for three months or longer. It is different from Acute Pain: which comes on suddenly and usually results from an injury and can be treated. Chronic Pain may be related to several different medical conditions and more often than not, cannot be cured- only managed.

The list that follows is not comprehensive by any means, but here are some medical conditions that can cause chronic pain.

Arthritis & joint problems (Rheumatoid arthritis, Psoriatic arthritis, Ankylosing spondylitis)

Migraine headaches

Back pain (spine & hip issues)

Fibromyalgia

Neuropathy and other nerve-related issues

Lyme Disease

IBD (including Crohn’s and Ulcerative Colitis)

Endometriosis

Cancer

Postsurgical pain

Multiple Sclerosis

Myofascial Pain Syndrome

Trigeminal Neuralgia

Diagnosing Chronic Pain

Credit: The Blue Diamond Gallery

To be diagnosed with chronic pain you may need one of the following:

CT(computer imaging topography) is a powerful X-ray that makes detailed pictures inside your body.

MRI or magnetic resonance imaging. It uses magnets and radio waves to make pictures of organs and structures inside you.

X-ray uses radiation in low doses to make images of structures in your body.

Sometimes, it takes several doctors to diagnose chronic pain and you may have to conduct one or more of these tests several times before you receive the right diagnosis and can move on to treatment.

Treatment

As for treatment, there are many ways that doctors can tackle chronic pain to make a person more comfortable.

They may use transcutaneous electrical nerve stimulation, or a TENs unit, applies to the affected area.

Breathing and meditation techniques.

Biofeedback

Nerve blocks

Spinal cord stimulation

Pain meds like NSAIDs, muscle relaxers, anti-depressants, anti-seizure meds, and opioids.

Surgery to treat the conditions that caused the pain.

Life with Chronic Pain

Living with chronic pain may be the most challenging part after diagnosis. There may be feelings of loneliness; feelings like you are suffering alone and that there is no one out there who understands you or what you are going through. You may find that you aren’t able to keep up with chores like you once did and you either have to learn to let things go for when you are having a good pain day and can do it on your own or, you may have to enlist the help of some family members or even an outside source. Some of your friends may not understand when you have to cancel engagements because you are dealing with more pain than usual and you may end up finding who your true friends are. Work may become increasingly more difficult and you may have to consider going part-time or perhaps changing your profession, or maybe going back to school. Some days might be more painful than others; you may need a walking aid or a wheelchair and other days you may be able to go out and do your errands or gardening or even running. This does not make your pain fake or diminish it any way. Pain patients experience good days where their functional ability may fluctuate.

Life with chronic pain is difficult and you may have to adapt quite a bit during the course as things change in your life. You need to maintain hope even when things feel hopeless. There are still many things in this life to live for and many joys to be had, even while battling chronic pain. A support system is incredibly important and even though you may not be able to get out and be with people, the internet can be used for good and fill in that social gap. There are many communities across the internet, including Twitter and Instagram, where you can meet people who are in very similar situations and can understand what you are going through. Having these communities can boost your morale, give you something to live for and remind you that you aren’t alone in this world which can mean so much. Chronic pain can affect your mental health, so it is important to keep engaged and on to hope. If you find you are having difficulties and having suicidal thoughts, please contact someone you trust and let them know or reach out to National Suicide Prevention Lifeline.

National Suicide Prevention Lifeline

Hours: Available 24 hours. Languages: English & Spanish.

800.273.8255

So, what; You Can Handle It Better

How it should be.

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

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

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

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

I have a mouth.

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

Namaste y’all, until next time.

Despite it All

And here you are living, despite it all. -Rupi Kaur

When you are struggling with mental illness and/or chronic illness and/or chronic pain, life can be overwhelming. Every day feels like a battle with mood or symptoms that keep you from feeling your best. You struggle with guilt over not being able to do the things you once did, or not being able to do them as often, or sometimes, criticism from friends/loved ones who don’t understand this seemingly new person that you’ve become, when in actuality, the imposter was that person they saw before it became too exhausting to put on a façade of wellness. Too, there’s confusion about how some days you might actually be feeling well enough to be a glimpse of that person you were, smile, be happy and people wonder, then, why you can’t be that person all the time. And if that weren’t enough, there are those who will criticize you or question the legitimacy of your illness because you have days where you are happy.

But this post is not about all that. It is about this:

“And here you are living, despite it all.”

If you can, take a moment and consider everything you have gone through in your life. Think about the stress and anxiety you have felt before knowing a diagnosis or the continued stress you are feeling because you have yet gone un-diagnosed; think about all the anxiety and pain your mental illness has caused you; think about all the symptoms you’ve had to deal with because of your chronic illness and think about the physical pain you’ve experienced because of your chronic pain.

You are still here, despite it all. You are alive and important to those around you, and you have gifts of your experience and perseverance that you can pass on to others. You didn’t give up, and even if you did for a while, you were able to push through and continue. These experiences can sometimes be gutting but every day you fight back you are giving yourself the opportunity to live and touch other lives by connecting with them through similar experiences. It doesn’t mean you have to start a blog or try to become an influencer on Twitter or TikTok, but just opening yourself up to the idea of sharing your experience with someone who you think might benefit from hearing it. Sometimes, it can be the simplest act that can save someone from the edge of despair, and because we have been there, we might see the signs before someone else notices.

It’s not always easy to sit down and reflect on everything that has happened to you or is still happening to you and feel good about still being here. There are times where it’s such a struggle and such a painful existence that you wish it were over and yet you fight because there’s that shred of hope that tomorrow or a month from now won’t be as bad. You look for things that bring you joy and peace and you hang on to that for dear life. And sometimes, you are lucky enough to have a few hours, or a day or a week where you feel normal and unburdened by your health. You are able to enjoy things and you are cognizant of that and you savor each and every moment. These are the things we have to pass on to people who find themselves in similar shoes. The hope that is possible. The hope that can be. The hope that despite it all, you will survive and the hope that despite it all you will thrive.

5 Ways to Reset Mind and Spirit

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

The “little” Lies We Tell Ourself

“I’m okay.” “I feel fine.” “I can power through this headache.” “I’ll just pretend my tummy doesn’t hurt.” “I’m not depressed.” “I’m not manic.” “I’m over exaggerating how much I hurt.” And so on…

These are just a few of the “little” lies we tell ourselves daily to get through the day and not feel like we’ve failed somehow, or that we tell ourselves to power through our day and not have to lay down and rest. 

“I’m normal. I can do anything anyone else can.” 

I tell this to myself repeatedly, like a mantra. I envision myself the way I was in my 20’s when I felt bad but the feeling had no name and I had little children and a house and there was no time to worry about I felt; when I was too preoccupied with making sure everyone else was cared for and that they had lunches for school and did their homework. I will sometimes wonder if I was that busy again, would I have time to dwell on all my ailments or would I just push through and not worry? I will contemplate life without knowing about my chronic illness- what if they didn’t have a name? Would I just shrug it off and pluck away at life quietly? Or would it continue to be so debilitating? 

I’m a Star Wars Nerd.

“You aren’t as bad off as some…”

Even though I advocate others to never say this to someone with chronic illness, in the back of my head I will hear it. I will see others who are chronically ill, and how they can do so much more than I can and I become frustrated. It makes me feel like I have to be comparable to them, which is something I tell people with chronic illness NOT to do because it just isn’t healthy. Don’t compete with those others you follow on Instagram or Twitter or that you know personally. Even those of us with the same illnesses will experience it differently because we are unique. It doesn’t do us any good to try to keep up with someone else and can make our life worse. Just do you. 

“Feeling pretty good- must do everything I need to get done today because tomorrow I may feel like hell.” 

Why, oh why, oh why, do I tell myself this? I could just facepalm every time I do it because I know I’m going to feel worse. But, Jesus H. Roosevelt Christ! – (who gets that reference?) it never fails that I will go crazy cleaning and then regret it afterwards. It sucks. The ramifications of overdoing it should be enough to deter anyone from overdoing it ever again, and yet, NOPE, I still do it. Am I alone? This is something else I’ve preached in my blogs because I know in my head how nonconstructive it is to do this- how much better it is for your body to do a little bit at a time, and yet when I feel good, there is this intoxicating lure to clean and make sure everything is sparkly, until I just flop. 

Things just get on my nerves and I have to do it. It’s like Satan whispering in my ear.

“I’m FINE

Or as my husband will tell me, “Fucked up, Insecure, Neurotic and Emotional?” To which I will just give him the side-eye and huff. He knows I’m not “fine” and I know I’m not “fine” but I continue with the pretence because surely if I say it enough I will “will to be true.” I’ve done this repeatedly, with regards not only to my physical health but my mental health too. “I’m fine. I’m not depressed.” Or “I’m fine, I’m not manic.” But that “little” lie can do BIG damage, especially with regards to our mental health and trying to deceive yourself that you are okay and don’t need to ask for help or tweak your meds. In the long run, it’s just safer, to be honest about how you are feeling. Talk to your doc about feeling worse because of new symptoms, while it may make us feel “low-key hypochondriac”, new symptoms or feeling worse could be a real sign something else is wrong. 

Still a favourite movie. Love Melman.

It’s not easy being chronically ill. We want to be like everyone else, normal, even though that is an illusion. Normal truly doesn’t exist and everyone out there has their own, personal struggle. We tell ourselves the lies because we want to get through our day; because we need to get through work, we want to have enough energy to advocate; we want to give other people (friends and family) hope and reduce their worry about how we are feeling and we want to have fun. The list of reasons we may lie to ourselves and others goes on. Everyone has a different motivation for what they do, but I feel much of it stems from guilt. Guilt about not being who we once were, for letting people down when we can’t go somewhere, or when we can’t clean or cook the way we once did. There’s a lot of guilt because we remember ourselves before chronic illness- even if it’s just a glimmer- and we wish we could be that person. And if some has spent the entirety of their lives with chronic illness and can’t remember a day when they weren’t sick, they watch people who live their lives in healthy bodies and want to be them. They will even pretend they are not sick so they can do the things their friends are doing and not be left out. It’s difficult being a prisoner in your own body because we have our minds that are vital and healthy and allow us to imagine life without sickness- and that imagining can almost be cruel. 

Hahaha! Couldn’t help myself. I always think, “Here’s your lasagna and a nice helping of guilt!”

I’m not telling you not to tell those “little lies” to yourself. We’re going to do it, but try to recognise it when you do- acknowledge it and move on. Try to carve out time when you can be honest to yourself about how you are feeling and what is going on in your health that should be brought to your doctor’s attention and then, go back to life. Your health is the most important thing and if you continue a habit of taking advantage of yourself and asking your body to do more than it’s capable of, you may end up in worse shape than you originally started. No matter what you may think, you are important.

Yes, you are.

8 Confessions of Living With a Chronic Illness

Me confessing to you.
  • I Always Feel Guilty: Yes, always. I feel guilty because I don’t visit with people I care about. I feel guilty because I rely on so many people for so many different things. I feel guilty when I don’t cook a decent dinner. I feel guilty because my house isn’t clean enough. I feel guilty because I can’t walk my dogs as much as I would like to. I feel guilty because I can’t do as much yoga as I would like and sometimes, I need 3-4 days to recover from one 30-minute class and that class isn’t hard-core yoga. I feel guilty because my specialised diet forces my husband and family to go without things they enjoy. After all, it would wreck me to cook two meals. I feel guilty because I can’t work. I feel guilty because I can never say to someone that I feel 100% wonderful. I feel guilty because my mental health sucks. I feel guilty and sad because I have passed so many of these genes to my children and they suffer because of it. I feel guilty because I often lie about how I feel, so I won’t worry people. I feel guilty. This only covers a small portion of my feelings, but it can become overwhelming. 
  • I Am Frightened of My Future: My husband is getting close to retirement age. We are steady planning out the future; where we want to live, what kind of house we will purchase and how we’d like to decorate (OK, how I would like to decorate.) We’re both so excited about it and doing things we like to do together, without the children. But when he brings things up, I realise I am terrified. What if I can’t do all the things we’ve been dreaming of? What if I am not there? These are things that could happen to anyone; these are things that have happened to people and I know I can’t predict the future, but I still find the thoughts of my future terrifying. I am a chronic pain patient and with “opioid hysteria” and yes, I will concede there is a problem with certain drugs and those who have abused them because they were misguided by a doctor, there are still those of us who very much need them. But we’re being punished and many have died because they have been left defenseless against their pain and quickly over-run by it. Our resources for pain management because more scarce and I find it as much a tragedy when someone is left to suffer in pain as when someone becomes addicted to the drugs that were supposed to help them. 
  • I Feel Like I am Alone: Logically, I know this isn’t the case. I have friends and loved ones who care about me. I have a truly amazing husband, who I adore and I know adores me. But no one truly gets it. And, while I have many on social media who do understand because they are in the same situation, sometimes you wish you could hang out with someone in that very same place, so you can feel at ease. It’s difficult for me to make plans with people (family or not) because I can’t predict how I am going to feel in the future. It’s always a day-to-day thing and you end up feeling bad when you can’t go somewhere you promised you’d go, or have to cancel plans. Funny thing is, you end up not having to worry too much about it because most people just get tired of it and stop calling and hanging out. 
Me lonely
  • I Feel Like People Don’t Believe I am Sick, Because I Don’t Look Sick: I wish, sometimes, that I looked as sick as I feel- sometimes. The only thing I have going for me is that I don’t look sick or my age. The downside is that no one can see the crumbling immune system that is mine, and no one can see the pain I am in daily, which gives people the false idea that I am just fine. When I remind people that I hurt, or can’t do it because I don’t feel well, I feel like there is a tiny part of them that doesn’t believe me or thinks I am doing it just so I can get out of something. This generally leads me to go on a sporadic flurry of doing chores until I fall over dead because I want to feel useful, despite knowing that my body just can’t keep up sometimes. It’s a vicious cycle that while I have even preached on my blog about moderation and doing what you can, I’m terrible and almost incapable of following myself. 
  • Not All Doctors Understand (but I am grateful for the ones who do): We’ve all been there with doctors ignoring our pleas for help and giving us a litany of excuses as to why we feel the way we do, which can range from “it’s all in our head” to “you need to exercise more.” It can leave us feeling like we are crazy. We know our body and no one should make us doubt our gut. It makes me so angry that I wasted so much time with so many doctors because I chose to believe them blindly. After all, they wore the white coat and had all that schooling. Surely, they have to know, right? Having been writing now for a few years and learning how little “schooling” doctors receive on autoimmune illness, rare illnesses and chronic pain issues, it makes a lot of sense as to why they don’t always pick up on the signs. However, you have to do your due diligence and fight for yourself until you find a doctor who is willing to listen and take the time to figure out what is going on with you. That may mean a rheumatologist, it may mean a neurologist, it may mean a gastroenterologist for you. When you find that doctor, don’t let them go and be grateful that they chose to listen. 
Doctors
  • I Feel Like a Failure: Sometimes, I do. I knew this isn’t an exclusive feeling to those with chronic illness/pain, but the reason I feel like a failure is directly related to those things. I feel like a failure because I haven’t finished school. I feel like a failure because I can’t do many of the things that those in my age group are doing or have done because of my chronic illness. I watch their feeds on Facebook or Imagine Chat and I see these amazing vacations or doing marathons, going hiking, excelling at their job, and it hurts a little. I try to look at those things I have been able to accomplish and feel proud of myself. I remind myself that we are all on a different journey. But it’s still difficult. 
  • I Almost Always Feel Judged Because I Take Opioids: Ugh. This is huge for me. I’ve written about it before here: https://lovekarmafood.com/2019/06/25/i-am-an-un-apologetic-opioid-patient/ However, it’s difficult being a chronic patient who takes opioids in this age of “opioid addiction and hysteria.” I don’t like to feel judged and look on with disdain because I take opioids, and I don’t like to feel like I am contributing to an epidemic that was never my fault. Everyone is different and, unfortunately, there are people whose body chemistry make them more vulnerable to addiction. I am grateful that I am not predisposed to that vulnerability and in the 4 years that I have been using opioids to help me manage my pain I’ve never had a problem. I know I am lucky. What I don’t think, is that I should be judged as though addiction is lurking behind some future door; without opioids, I would not be here.
Opioids
  • I Am Almost Always in Pain: This is not an over-exaggeration of my situation or the situation of many of us with chronic illness/pain. Pain is ever-present. Even with the medication, I am given I am still in pain. There is a reason they call it “pain management.” Every day finds me with some amount of pain and with the meds, I am given it is managed, somewhat. There are days where there is a perfect storm of symptoms and my pain crosses that threshold of managed to unmanageable, but gratefully, those days are fewer because of the pain meds I am given. There is an idea that because I am in pain every day that I should be used to it, but that is wholly untrue. People don’t get used to being poor or hungry or abused. Each day remains a struggle. 
Ouchie Pain