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!



Stop Blaming Yourself

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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Forging New Meanings of the Word: Disability

Throughout history, there have been a lot of misconceptions and negative connotations associated with the word disability. To the point where many outside the disability community, have tried to help those within the disability community and began to say things like “there is no Dis in our abilities,” as a way to show people that just because some may have a physical or mental impairment, doesn’t mean they can’t accomplish the same things as someone without them. Some of those people are very driven in life because of those impairments and it is the catalyst that propels them forward in life. They may have to work twice as hard as their -abled counterparts but it’s worth it for the reward in the end. The proof shows that they are just as capable of doing things. The problem with this, in my opinion, is that it’s not the word that is the issue but the negativity of other people and their perception of the word that changes how that word is interpreted by others. Words are just words that are given their meaning by people and we can change that meaning and how they are perceived. We can also allow people to use whatever words they want to define themselves. It seems only right if they are comfortable with the meaning and connotation of the word. 

As a person with a disability, who is only recently disabled within the last few years and has not had to live with a disability all my life, disability doesn’t have the same connotation to me. It means I have limitations, and it means I can’t do the same things I used to, but it doesn’t define me and it certainly doesn’t limit me even though it may limit what I can physically. It doesn’t limit me mentally; it doesn’t limit my imagination and sometimes I can even find ways around the physical limitations to do what I what to do. It just means thinking out of the box which goes to that creativity, which I have a lot of. Now, I understand that some people who live with a disability all their life view it differently. The very nature of the word itself DIS-able has this negative connotation attached to it whereby you are making this insinuation that you can’t do something because you have this flaw. It’s ridiculous. You may not be able to do one thing, but you may be very capable of doing other things. 

Some people don’t like using the word disabled and that’s ok, but others are perfectly comfortable with it. Some people prefer cripple, others don’t. Some people prefer different words to identify themselves and that is okay too. It shouldn’t be up to anyone else to say how we should identify ourselves, or worse, tell us what is right or wrong about how we identify ourselves. This is such a personal decision. Not even under the guise of trying to make things better or more inclusive for the disability community because that is unfair and not we asked for. Words become negative when they are used in negative ways. I don’t believe that words are inherently bad. I think if people in the disability community are okay with words like disable and cripple, then they should be allowed to use them. This belongs to them. 

I believe people in the -able community should be sensitive and respectful of how those in the disabled community want to be called. It doesn’t take that long to ask someone how they identify or what they prefer to be called. Respectfully, I think, because they are the ones with the disability. They are the ones who have been navigating this in their life for however long and if anyone gets to dictate how that makes them feel, it should be them. I know at the beginning I was very much against being called disabled and forget about crippled. That might as well be a curse word. I’m still not okay with that one, but disabled doesn’t mean the same 

You Don’t Adjust You Just Live

You’ll adjust to the pain

Five years later…

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.

screamorenjoy

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.

chroniccat

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?

memories

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.

seesaw2

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.

caregiver

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.

Progressive illness

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.

BeautifulScars

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.

Living Life

Procrastination in Chronic Illness

I have never been one to procrastinate. Never. I am the kind of girl who always got her assignment done in school early. I plan for things. I plan for research and I have time-tables. I like to know how long it will take for me to research before I sit down to write so I have everything in order. I make menus for the week and sometimes for the entire month if there is a surgery that I have to plan for. The point here: I am a planner, not a procrastinator and what chronic illness sometimes creates is a huge procrastinator. Here are some reasons why.

Showers: My Nemesis

showernemesis

Once upon a time, when my world was lovely, I could luxuriate in the bathtub or a long shower. I loved turning up the music sometimes, singing my favourite songs and just relieving some stress. There’s none of that now. Besides the fact that the simple act of taking a shower exhausts me, it’s compounded by the water hurting my skin and making me itch violently and for unexplained reasons. It could be a combination of the fibromyalgia’s allodynia that makes my skin sensitive and susceptible to pain, and my own pressure and cholinergic urticaria that causes unexplained hives when the water beats down on my skin. Whatever the reason might be, showers have now become my least favourite activity and one which I put off because it makes me feel so badly. I hate the way the procrastination makes me feel too: dirty. Which usually sets off my particular brand of OCD, which then causes a spike in my anxiety. I hate that feeling. I lament those days when I could sit in the bathtub for an hour and turn into a prune. Even if the itchies were to go away there’d still be the exhaustion that comes after the shower. The deep exhaustion that leaves me so tired I need to go sit down for a while before attempting to dry my hair. And I dry my hair sitting down! I feel like I’m 100 years old and I’m only 45.

Blog Posts: On Hold!

hiatus1

I love writing. My perfect world consists of a cabin, and writing, drinking hot tea and not much else. But with chronic illness and chronic pain, there are days I procrastinate writing or weeks where it gets put on hold because I am feeling so badly or where I’ve gotten so little sleep that I know stringing two sentences together is going to be a challenge. It bothers me when I procrastinate. Even when the procrastination is not really procrastination but time off, for medical reasons. It makes me feel like I can’t even do one thing, like a “normal” person. And I have to sit down with myself and tell myself sternly but gently, that no, I’m not “normal” but who is? We all have things going on with ourselves that present us with challenges. The art of living is learning how to work with these challenges so that we can live our lives the most abundant way we can. And if that means My work schedule is one week on, one week off, or three days on two days off or however it may look and however unconventional that maybe? So be it. As long as I roll out articles that my readers are happy with, I will keep on doing it because it makes me happy and gives me purpose.

Food is Divine: Unless You’re Gut is Fuc**ed

Crohns2

I love to cook. I love to bake. Bread was once my best friend. Pastries my lover. The holidays had me salivating and planning for months. What to cook? What to bake? Cookies were sent to relatives and friends for gifts. Now, where I once saw food in a vibrant palette of colour, it is grey. I procrastinate with eating and cooking and making my weekly menu for meals. It is no longer with the same enthusiasm that I sit down to eat with the family or go to eat with my husband, and the holidays have grown dismal and lack the flavour I was once accustomed to. This is all because of my gut issue, partly related to Crohn’s and partly to other contributing gut issues like non-Celiac Gluten Intolerance that have made my eating experience something I don’t know what to do with. Cooking for my family was an extension of my love for them and I don’t know how to do that anymore. Eating the food cooked is no longer an enjoyment. I feel like chronic illness has stripped away from me something dear, that made me who I am.

To Sleep, Perchance to Dream: Unless You’re in Pain

sheepjumping

Ah, to sleep. This has been something that has eluded me since I was a youngster. Being the INFJ I am, I can remember reading my mother’s Reader’s Digest, and catching this article about how keeping your room cool, having lavender on your pillow and your bed at the opposite end of the open window so you could feel the breeze would help you sleep better at night. I have been struggling with insomnia for a long time. 35 years to be exact, though these days my insomnia is the result of pain and I procrastinate for bed because I most of the time I lie there in pain counting exploding sheep. They explode because in the midst of my trying to peacefully try and breathe through the pain, I will suddenly get a lightning bolt down my leg and there will go the peace and the sheep with it. Inevitably, I avoid the whole situation by not sleeping. But, not sleeping isn’t exactly great coping skills for someone with chronic illness or someone with insomnia. You need sleep but when you are in pain and you have tried everything, or think you have and haven’t gotten adequate results, it can be more than frustrating. That’s when you just avoid everything. Goodbye sleep. It was good knowing you.

All of this is part tongue-in-cheek but truly heartfelt. Your life changes when you are faced with chronic illness and there may be many reasons you procrastinate. It’s not just an unwillingness to do something. I feel a lot of times that we simply aren’t understood. That people haven’t tried to see things from our perspective or taken the time to think about why we might be the way we are. It’s a very rough road we’re on. One that unless you’ve travelled it, it’s unlikely you will ever truly understand it. But it shouldn’t mean that you can’t try and empathise a little. Maybe something cheeky, silly but still real, will help.

 

They Call That Fashion?

[image: Getty Images]

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.

chronicadvocates

Being Your Own Health Advocate

It’s Not as Easy-Peasy as it Seems

As long as I’ve been sick, and as long as I’ve been blogging, I’ve either been reading about or hearing about being your own health advocate. While being a self-advocate is something that seems easy, and is something that we have been doing since we begin seeing the doctor on our own, it’s not always easy. I’ve wondered why that is and how we can improve on that, to become better self-advocates, because there may come a time when ourselves is all we got.

 

Difficulty Being Assertive with Your Doctor?

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You’re not alone. Many people find that being assertive with their doctor can be a difficult undertaking. We can find ourselves at our most vulnerable when we are with our doctor, both physically and emotionally, but hoping that with all their education and experience, that they have the answer we are so desperate to have. However, when their diagnosis or treatment plan goes against what we may have in mind, we have a great deal of difficulty telling out doctor this. Why?

 

Many of us feel that if we question a doctor, we are somehow questioning their expertise and authority. We don’t see ourselves as equals when sitting with our doctor, even though we are both adults and equal as human beings. This seems to make us feel, in a sense, like a child and a “questioning of expertise may lead to retribution in the form of a lower quality treatment from their doctor somewhere down the road.” We’ve all heard doctors as possessing God complexes. There’s a reason for that and challenging their authority is one of them. But there are ways you can have a relationship with your doctor as an effective communicator- self-advocate. [1] Wagner, 2019

 

 

Non-Negotiable with Doctor

susie signs a contrat

 

Trust: Once you have a doctor, establish trust. Without this, you can’t proceed. Good doctors listen, don’t make you feel rushed and have patience. But doctors can have a bad day and staff can be off, so remember to have patience too.

 

Respect: Everyone starts with respect in my book. You don’t have to earn anything with me. But once you lose it, it’s gone. If a doctor disregards a legitimate complaint; if they tell you it’s nothing and to just lose weight-game over. Find a second opinion and start again.

 

Serious surgery/treatment: Any experimental/trials, surgeries, cancer treatments or whatever, get a 2nd or 3rd opinion if necessary. Do your research and see what trials they did for it; see what other patients said about it, and how they are feeling now. It’s very important to do your homework. If you don’t like what is said, find another doctor.

 

 

Tips for a Good Self-Advocate:

advocate

Communicate: It’s not just about talking. It’s about being effective. Any advocate out there will stress the importance of clarity with your doctor, and communicating your concerns and desires over the progress of your treatment while maintaining a professional relationship is essential. It’s important to be able to discuss treatment with a doctor without feeling like you’re going to hurt an ego.

 

Assertive: “Being pushy without being annoying.” You won’t find that definition on the dictionary, but I like it. In order to be an advocate for yourself, you need to learn how to do this for yourself, because there are going to be many instances you find yourself needing to use it. Whether it’s calling up the insurance company and finding out why a bill hasn’t been paid yet- and as my grandma once told me, you catch more flies with honey than vinegar, it pays to be persistent but not a bitch on the phone. They’re only doing their job and they don’t know any more than you know them.

 

Passionate: Oh, energy and enthusiasm! Chronic illness and chronic pain is a long struggle. You have to bring your pom-poms with you for you, to fight this. Ain’t no one gonna fight harder than you. Remember this when you feel like crap when you’re tired and you hurt and remember when you just don’t want to do it. You gotta look out for number one.

 

Knowledgeable: Research the Issue. It’s easy to Google something but it’s better to research. Google doesn’t mean it’s true, but if you research it and you find five or ten articles that say it’s true, you have a far better chance of the information being true. I’m a big proponent of research and being armed with research when going to the doctor can only strengthen your case when you bring your ideas for certain treatment before them. You may not have a degree but you have the right to consider what treatments you want to try.

 

 

 

[1] Wagner, 2019

Arthur’s Place

Today I wanted to share with you a special website that is geared toward helping young adults cope with arthritis-related illness. Andrea McBride is a Rheumatology nurse specialist who set up this site called: Arthur’s Place, a private social group that has a global reach for young people age 18-30 with Arthritis and related conditions.

I am impressed with the site, the information it provides and the quality of articles within. If you are a young adult, newly diagnosed with a rheumatoid illness, I think this website could give you a variety of information that you would not get from a doctor as well as being able to connect with other young adults across the globe via social media. They are also a non-profit, so any merchandise that is purchased goes directly into funding Arthur’s Place, which is helping the rheumatoid community.

 

Check it out!

The UN-Glamor of Anxiety

Are you looking at UN-glamor and wondering why? Does it bother you from a purely grammatical perspective or is it causing you to pace and pull out your hair, possibly making you twitch?

Anxiety can range from mild to severe, some people function very well with it and others don’t, but the interesting thing about it is that we’ve all experienced it. It may have manifested in the anxiety we often feel as children when we are first separated from our parents or before texts. These are things that are common to feel anxious about. But anxiety can quickly become a problem which is all-encompassing and one that can make day-to-day life, difficult. Anxiety before a test, that causes the individual to vomit repeatedly, is not average anxiety. The anxiety that comes over you like a dark cloud and makes you feel as though there is some great, threatening danger and prevents you from going to work (which I have felt), is not average anxiety.

Anxiety can also be a by-product of other things like chronic illness or OCD (Obsessive Compulsive Disorder).  Why you might ask, would chronic illness spawn something like anxiety? In my personal experience with it, because of the unpredictability of my symptoms, never knowing how I would feel from day to day and the possibility of needing to call off work sick and lose my job, made me incredibly anxious. In dealing with OCD (Obsessive Compulsive Disorder), there was the anxiety brought on by shame.  It was being cognitively aware that my feelings were irrational but unable to stop feeling it. It was being afraid to go in public and carry on with my normal activities because I was afraid of having a panic attack brought on by my anxiety of certain situations. It was anxiety brought on by just attempting to carry on normally, and knowing that my attempt at illusion was failing and shattering beneath the weight of it all.

The-Side-Effects-Of-Anxiety

What angers me most about the perception of anxiety is that it’s somehow this adorable little quirk in women, which women use as some kind of sonar device to attract potential mates. Because of course, women need saving, whether it’s from the “bad things” outside, or ourselves. Pardon me while I eyeroll a moment. None of my anxiety, panic disorder, bipolar or OCD ever helped in the guy department. In fact, I actually attribute it to the disaster of my first marriage, which other than producing two, beautiful children, was toxic in all ways. It’s difficult to find someone who can see past the messy of mental illness and find you, under it all. I felt broken. I felt very UN-glamorous and not at all cute.

Although my focus here is women, I wanted to comment on our male counterpart. I think that because anxiety and mental heal issues are romanticized with women that it is actually the reverse for men. If we think about our society for a moment, and how men are the tall, strong, handsome ones who do the rescuing, that this idea puts men who are struggling with anxiety and mental illness in quite the conundrum. Not having any statistics handy, I would wager that many men try to cover up their anxieties much more than women, trying to appear normal and trying to have relationships. I can imagine the difficulties that this brings them and the sheer exhaustion of trying to keep up with this illusion, before they, too, shatter.

I still struggle with anxiety. Going out into stores is possible but I still wouldn’t ever step foot into the grocery store on weekends. I can’t recall the last time I was physically at the mall. I am unlikely to ever do any of the brochure-highlighted tourist attractions, and will instead opt for something more rural, less popular. My education has been something of an odyssey, I am painfully aware of my test anxiety and as equally aware of my social anxiety. My OCD is better than it was, but I freak out a little when we have to divert from a familiar route to any place we go. This can include heated arguments and tears. The bipolar is a different breed of the monster of mental illness but I am in a good place. Some days it’s harder than others. I do not view my life with my anxieties or mental health issues as glamorous, nor do I think you would. It’s been a rough, ugly road to get to the place I am now. If you are in that rough place, I would ask you to get help and stick to it. If you know someone in that place, don’t give up on them and keep trying to push them closer to help. If you don’t have these issues, I would tell you not to fall for the glamour of how they try to sell it in the movies or T.V. because it’s not anywhere close to that. Lastly, I’d ask everyone to advocate for positive mental health discourse. It shouldn’t be something anyone is ashamed of and being educated about it may mean you get help for yourself or someone else sooner.  

 

*The image is me and I used Photolab.

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