Accepting or Not accepting chronic illness

Your Relationship with Chronic Illness is Personal

Let me begin by stating that I do not have multiple sclerosis, Let me also say that how one deals with their chronic illness is extremely personal and cannot be deemed as right or wrong. However, this is something that people who struggle with chronic illness face, and it is not something that ends after you decide. For example, perhaps you decide to accept your illness. This doesn’t mean that 5 years down the road you aren’t willing to re-evaluate, or vice versa. Chronic illness is a beast, and because it is something you have for the entirety of your life, it can be a very fluid, ever-changing beast.

Be Pissed. Be Accepting. Be Both.

I read the article in Hollywood Life about Christina Applegate’s struggle with MS and how she admits she’s “never going to accept this.” When I read this, I was admittedly a little torn in my sentiments. I have several chronic autoimmune disorders that have absolutely changed the trajectory of my life. This isn’t where I thought I would be and what I thought I would be doing at 48 years old. The last ten years have been turbulent and much of it spent trying to accurately diagnose my illness. In the beginning, I was very much in that same camp of, “No, I am not about to let this defeat me. I am pissed.” But then, after a few years, I migrated toward an acceptance of my illness and how it changed my life. But after another year or two, I realized that you can live in both camps. I accept my illness. After all, it’s not going to change; there is no cure, and all I can do is manage from day to day. But I can still be angry and unwilling to allow this beast to take any more from me.

The complexity of Chronic Illness.

It is also scary. It can fluctuate from day to day. Hell, it can change from hour to hour. Sometimes, it can change so drastically that you look in the mirror and you don’t recognize yourself or your life anymore. Chronic illness means living life “a quarter mile at a time.” Enjoying things you can when you can; taking time to slow down and rest when you need to, despite what anyone else thinks. It also means fighting like hell and railing against your illness when you can. Hating it. Mourning your life before. There’s no right or wrong way to accept this change in life. You deal with it each day in whatever way you think is most effective.

What You Choose Is Enough.

I applaud Christina Applegate’s authenticity and her perseverance through this ever-evolving illness. It isn’t easy for anyone to accept that they aren’t able to function as they once did or to accept help, whether from a walking aid or a human. It isn’t easy to watch your body change helplessly because there isn’t anything you can do about it. After all, your body is fighting against you. There’s no other way to say it, other than it is hard- really hard. There’s no cookie-cutter approach to handling this kind of diagnosis or how you proceed with your life afterward. You do what you need to do when you need to. That is all. It’s enough.

Chronic Help: How to Be There for a Friend With a Chronic Illness

This is a wonderful article by Lexi, detailing easy things that friends or family can do to help those with chronic illnesses. It can be a daunting task to figure out where or how to help, but she offers some simple ways to help you get started. I’m so very appreciative of Lexi’s continued, valuable input. Thank you and enjoy!

by Lexi Dy

Chronic Illness

When you have a loved one suffering from a chronic illness, you want to help
in any way you can. By trying things like helping them get to doctor’s appointments,
providing home upkeep, and designing a stress-free home and work environment, you
can help your friend or family member and create a stronger bond. The following guide
presented below by Love.Karma.Food can help.

Help them get to doctor’s appointments

Your loved one may not be able to drive themselves to the doctor. When this is the
case, offer to give them a lift. Head over the night before to make sure all preparations
are ready. Make sure you have all the right forms of ID, a medication list complete with
dosages, medications needed during the appointment, snacks, and a change of clothes.

Arrive to pick up your loved one early, but don’t rush them out the door. Ensure
everything you arranged the night before is ready to go, then head out. As AARP
explains, you should be prepared to stay in the waiting room during the appointment;
your loved one may want privacy.

Help with home upkeep

Offer to help with cleaning (at least) once a week. It doesn’t have to be a deep clean
every time, but do wipe down surfaces like countertops, appliances, and mirrors. Clean
and disinfect the shower, tub, and toilet. Do laundry, especially bedding and towels.
Make sure that all of these items are on your loved one’s list and tackle anything else
they might ask you to do.
Some tasks will require the assistance of a professional. For instance, getting up on a
ladder to clean the gutters always seems easier than it actually is. Enlist the help of
trained gutter cleaners who have the right tools and knowledge and can inform you of
any issues. This is a task you usually only need to do twice a year depending on your
location.

Help them find assisted living

Deciding to move to an assisted living facility is a major life decision, and it’s important
to consider all of the pros and cons beforehand. If your friend has decided this is the
best course of action, spend some time helping them find a facility that suits their needs.
There are many websites dedicated to listing area assisted living facilities throughout
Houston. Not only can you check ratings and look at the services they provide
(transportation, pet-friendly, hospice, etc.), but you can also request pricing information
to see if the facility fits their lifestyle, medical needs, and budget.

Always invite them out

AgingCare notes that you shouldn’t let your loved one be defined by their condition.
Treat them as you would anyone else and include them in activities whenever possible.
Simply put, always invite them and don’t be offended if they don’t come. Let them know that it’s OK if they can’t make it and ask if there’s anything you can do to help. Don’t, however, get the idea that if they came to more events that they’d be “better.” Don’t try to fix them. A little encouragement to join in is fine, but don’t push too hard.

Be empathetic and compassionate

More than anything, you want to be an excellent listener. Don’t just sit and nod, really
listen. Avoid interjecting; it’s important that your loved one knows they can vent to you
without interruption. Ensure they know that you’re there because you love them, not
because you feel obligated. Validate their concerns; if they’re worried they didn’t
complete enough work that day, just note how frustrating that must be. Don’t offer
suggestions or try to pep them up. They’re allowed to have a bad day like anyone else.

Help design a stress-free home environment

The state of one’s home can have a major impact on mental well-being. Start by
removing clutter, especially in places like the bedroom, kitchen, and home office. Items
needed the most should be out in the open, while items that are used less should be
tucked away. Further, make the most of natural light.
If your loved one works from home, it’s especially important to make their office a calm, relaxing space. Ensure their technology is up-to-date, particularly if you’re very tech-savvy and you know shortcuts. Check that their desk chair is ergonomic and comfortable.
For some, an unsupportive chair can increase pain from their illness.
Supporting a loved one with a chronic illness is vitally important to your relationship.
Just be there for them. Whether you transport them to doctor’s appointments, help them
find assisted living facilities that suit their specific needs, invite them out regularly, show empathy and compassion, and design a stress-free work and home environment, you can show your support and love.

Photo by Unsplash

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

I’m Not Used to It

There are some out there in the land of healthy who believe that because we’ve been in chronic pain and chronically ill (or perhaps one or the other), for X- amount of time, that we should be used to the constant torment. I’m here to tell you that this is a false-hood. We don’t become used to our situation simply because we have been in the same situation for years- we adapt. Adapting here means that we do things to make our lives easier; we adjust how we sleep in order to attempt a restful night, we shorten our work-days in order to ease the stress of long days on bodies that are already stressed from illness or pain; we change our diets to attempt to quiet the wrath of symptoms for digestive disorders; we take supplements in attempt to strengthen our weakened immune systems; we do so many things in a futile attempt to lessen the wrath of pain and illness, but we never, ever get used to it.

I envy this kind of sleep.

In some ways I can understand the logic behind that particular thinking. When we do things over and over again, for example exercise, we become accustom to how it feels. Eventually, we aren’t as sore as we were the first time, we hit the gym or when we attempted yoga for the first time. Our muscles become accustomed to the rigors of lifting weights or doing planks or squats. But chronic illness and chronic pain are just not the same. It doesn’t matter how many times I get a migraine, it’s always like the first time. It doesn’t matter how often my Crohn’s flares up; it always feels like an assault on my intestines. I am in chronic pain all the time from the fibro and back issues I have, not to mention the pain from the rheumatoid arthritis and while some days might be a little easier, it’s never something I get used to. It’s frustrating and painful and it simply takes so much out of you to just try and function every day. I am always finding myself lamenting the body I used to have (and no, I don’t mean figure-wise), and wishing that I could do the things and be the person I was.

Yoga is great, but does come with consequences, no matter how much I do.

I want people who don’t suffer from chronic illness and chronic pain to know that we never become used to this state of being. That every day is a challenge to simply function on a semi-normal basis. That you don’t have pain and symptoms from your chronic illness for 15 years and just become used to it over time. Our bodies are not static and every day presents new challenges and sometimes, new symptoms and frustrations. Pain medicine is something that doesn’t always work or only takes the edge off the pain leaving you at a seven rather than at a nine. It’s having side effects from the medication that is supposed to be helping you, or having to determine if it’s worth trying certain medications because of the side effects associated with that drug. It’s missing out on going out with friends (if we have any at all, because most people become tired with waiting around for us to feel better), it’s missing on going to events because we suddenly flare up, it’s the anxiety that we have because of our illness and pain (which exacerbates anxiety that we may have already), and it’s the surgeries that we may have in order to try and help our situation that sometimes ends up making us worse. No, we do not ever get used to it.

Oh the reality…

In finality, I offer this: if you are a family member or friend to someone suffering from chronic illness or chronic pain, try to understand them better; try to understand what it is they are going through better; be a better friend or sister, brother, mom or dad. Our lives are complicated and messy and we didn’t ask for this.

Sadly, so very true!

Thank you for reading, sharing and following my blog. It really means the world to me.

If You’re Lucky to Be Healthy, Don’t Take it For Granted

We take a lot of things for granted in our life. Some examples of things we’ve taken for granted recently- going out to the store whenever we want, going to school, work, out to eat or (without a mask). Movies and concerts were cancelled and other public events that have been tradition were also cancelled. We’ve taken these things for granted never thinking how easily they could be stripped away or reduced. However, for those of us in the chronic illness and chronic pain community, life didn’t change very much during this crazy time except for the necessity of wearing a mask. At least for myself, I only felt a little bump of change to my life, whereas healthy people felt a definite jolt of change.

Why do we take certain things for granted in the first place? Sometimes, it’s just because a certain thing has always been there. Many people take for granted their parents, because they are always there- until they are not- and then we realize what we have lost. We take for granted our freedoms and liberties because they are always there, until suddenly we are forced to walk around with masks, and are restricted in our movements even if it is for the safety of those around us. We’ve heard the chorus of many who feel their personal freedoms have been violated. But, what about your health? Is your health something that you take for granted? Is it something you feel will always be there? Or maybe you don’t feel like there is a threat until you are much older, say your 60’s or 70’s?

I think we all felt like we had to stay 6ft apart even inside our house.

The Mask

If you are lucky to be healthy, take it from someone who isn’t, to not take your health for granted. I can’t say that I was ever “healthy.” I came into this world with sickness and I grew up with asthma, chronic sinus infections, allergies, chronic migraines and chronic bronchitis. It felt like every time the leaves began to change, I was already sniffling and sneezing, which would, in turn, affect my asthma and then would invariably turn into a sinus infection that would eventually manifest itself into bronchitis. Later on, I would develop structural issues; ankylosing spondylitis, rheumatoid arthritis, psoriatic arthritis, gluten intolerance, Crohn’s and a bevvy of mental health issues from anxiety to bipolar. Most days I accept that this is my life. Most days I power through doctor visits, blood work, infusions, tests, pain and symptoms that keep me from ever feeling truly great. But there are those days that I lament my body and its various weaknesses and I wish with all my heart, that I was healthy.

Lamenting my body…

I’m very active in social media because of blogging and I see the active lives of many people I once knew or currently know, who are my age or maybe a little older or younger and I wish I could be doing some of the things they are doing. I wish I was able to go hiking; I wish I could go running like I used to; I wish I could plan a vacation without worrying that my health will get in the way of me and my husband having a good time; I wish long car rides didn’t hurt me so we didn’t have to stop so much on my account; I wish I was able to be more active and I wish there weren’t so many days that I dreaded getting up. It’s painful to know that so many things you once enjoyed have been stripped from your life. It’s difficult to reconcile how things were to how things are.

If you are healthy, don’t stop taking care of yourself. Don’t become negligent of your health because you think you have time. I may not have been in stellar health to begin with, but I certainly never thought things would evolve to where they are now and it was always something I envisioned would happen when I was old, like my grandmother. If you have your health, fight to keep it for as long as you can. It’s true that you can do everything right and still find yourself with some illness, but I figure it can’t hurt that you’ve done your best to take care of yourself. Life is too short as it is. Live your best life and keep yourself as healthy as you can so you can enjoy it until you are a ripe, old age.

Living life until you old, not feel old!