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Tips and Tricks to Fight the Fog

Let me begin with a brief story. Some of the details are changed because I can’t remember clearly, but here is the gist. I was looking over what to cook for supper and realized that I needed some chicken out from the deep freezer we have in the garage. It goes something like this: “Hey! Could one of you go into the [draws blank] the…uhm…[insert expletive] that white thing, you know, in the garage…it keeps the food cold?” Children reply, looking at me like I lost my mind: “The freezer, Mom?” YES! Freezer! Why couldn’t I think of that? This is my life. And my brain fog seems to be word related which I find amusing because writing is what I do. It does stretch out to other things. Sometimes it’s just a general fogginess or feeling like trying to access anything is like running through pea soup.

Brain Fog: often described as feelings of mental confusion or lack of mental clarity. Quite literally, it can feel like your brain is submerged in that thick, soupy mix that makes it difficult to drive home in, only it’s your brain. It is a symptom that is common in many auto-immune disorders and is by far, the most frustrating. It’s a symptom that is not addressed by doctors which often leads us, the patients, feeling like we are going a little crazy and pushes us in search of others who are experiencing it. It is here, we learn of tips and tricks to combat this most frustrating symptom. Let me share with you a few I have found most helpful. Not all may work for you, but it might be a jumping off point to giving you some ideas that would work for you.

13 Tips and Tricks to Beat Brain Fog

Don’t Trust Your Brain: I know that sounds ridiculous but I don’t mean for everything. What I mean is when you go to the grocery store to pick up those five items you really need, don’t trust your brain to remember because I promise you it won’t. It’s a bitter pill to swallow but your brain is not the efficient, infallible machine it used to be. Just accept it and move on. It doesn’t make you less of a person It just makes you human and all humans eventually encounter a struggle with memory. The sooner you accept it the better you will feel about yourself, especially when you use some of these tips and tricks.

List! List! List!: Grocery list, Things to do list, random lists of any ideas you might have for any project you want to get to, lists!  I love lists. It is a simple way to keep track of things that doesn’t take a lot of time or effort. The only problem is if you get distracted and forget to put it on the list. This has happened to me before. The only way I know to combat that is writing it down when you think about it. I’ve had to tell people to leave me be for a few minutes so I could write it down right then and there. There’s nothing like staring at a list of let’s say, items you need to bake a cheesecake and knowing you are missing one thing but can’t recall what that one thing was. Maddening is what it is.

Post-it Notes: Something a little easier is the old-fashioned post-it. I love them because they are small and they can stick virtually anywhere. If I am writing and my mom calls me and I can’t break away because I know if I do I won’t remember what the heck I was doing, bam! Post-it note: Call mom! I’ve even gotten to using One Notes too, which is great, but I’m pretty slow in techie related stuff and I am very tactile so there is something for me, about the act of writing and where I am sticking the note, that I will recall everything better. Whatever helps!

Planners:  Sadly, planners are not my thing. But they can be help to some people and therefore I included it. Maybe I just haven’t found my perfect planner yet? We do use Time Tree App as a family, which is a planner. Pretty basic in terms of planners but it helps everyone in the family know where everyone is going to be at a given time. This is huge because there are times I need someone to take me to the doctor or someone to pick up a sibling and know I know where everyone is. If you are managing a family and sinking into the chaos that can be when having kids and activities, give this app a try!

White Board: Yes. The infamous white board that you see as part of Dorm Room Must-Haves. It’s okay to have in your 30’s or 40’s or older. I promise no one will judge and if they do, who cares! I have been utilizing the white board since my 20’s when my kids were younger. I have a huge one in my kitchen where everything from Chores for the Day, Things I Need, and Random Notes gets slapped on there. I keep the dry-erase markers in a draw right next to where it’s hung up and sometimes even very random thoughts get written on there because it’s so handy. It is by far my most favorite item on this list. If you don’t like white boards, I know they have really cool chalk boards too! Easy DIY frame up and you have something sweet to hang up wherever you are inclined that will help you keep things together.

Memory Book: This isn’t your arts-n-crafts type of memory book, but you could definitely decorate it if you want to. It’s where you write down anything you think you might forget, however you want to write it down. So, if you’re a bullet point kind of person, go crazy! You write things like: Oct. 22 Put my keys on the shelf because I have to go out and pick up Bobby from band practice in an hour. That way you aren’t like me, and you are hearing the chime of the clock saying you have to go, and you can’t find your keys. And it works for anything. Have a meeting? Jot it down? Need to pick up eggs? Write it down? Hiding those holiday presents early, so no one will find them, including you three months later? Write it down. It can be as much or as little as you want, and as decorative as you want.

Routine: This can be difficult if you aren’t a routine sort of person. And let’s face it, not all of us are. My husband very routine oriented. His wallet and keys go in the same spot. He goes to bed at the same time. Gets up at the same time. He is a well-oiled machine and it makes me jealous. Me: It depends. I have a skeleton outline of a routine, but there is nothing set in stone. I blame my chronic illness, but maybe it’s me. I’m not the kind of girl who just decides to see a movie on a week-day because I can, because there are too many variables health-wise, but I don’t have a rigid writing schedule or work schedule or anything schedule. About the only thing that is set in stone is dinner, and guess why that is! If it works for you, great! It can help with some of the memory issues, like if you forget where you put your keys or tennis shoes, but for me, other than that it just doesn’t work.

Sleep: Here is another that you shouldn’t go crazy over if you can’t do it, but having a set time to go to bed and set time to wake up where you are getting your allotted 8-10 hours of sleep, is great for you and your brain fog if you can manage it. Me, on the other hand, I have begun telling people I am on Cthulhu time. Or possibly on Australian time zone. I never know when I might go to sleep, though I tend to wake up early no matter what. I’m sure this exacerbates the ol’ brain fog, but I have found it drives me nuttier if I try to be like my husband and retire at 8:30 and fall asleep at 8:35. It just doesn’t work.

Unplug: Do it for an hour. Do it for a day. Be daring and do it for an entire weekend. It may take a little getting used to, after all, we live connected. But if you look at how we are connected, it’s not in the healthiest of ways. I do see the benefit to being connected, unlike some. Many of us live isolated from the world because we aren’t able to get out and if we did, we don’t have the friends to do it with because we lost out friends when we got sick. Social media is how we stay connected and how we maintain relationships outside of our immediate family. Still, I don’t think any of us can say we haven’t gotten angry at our social media, or been harassed or degraded by some troll. This can have a huge impact on our brain fog because if we are in a tizzy over what someone may have said, or something we’ve read, what little focus we have goes out the proverbial window. Do yourself a favor and try and unplug for at least an hour a day. Listen to your favorite music, read, or partake of your favorite hobby. You’ll be surprised how by giving yourself a little time away from things can really improve your focus.

Multi-tasking, it’s over-rated: This is the reign of the multi-tasker. How to get the most done in the least amount of time, which, to the proponent of multi-tasking, equates to being more efficient. But hit the brakes for one moment and ask yourself a question. Is multi-tasking doing what it claims it can do, for you? Some people thrive on doing eleven different tasks at once. I am guilty of it. I may even live under the illusion that I do well at it. I have often joked that my brain functions like a laptop with ten different tabs open, two are unresponsive and I have Spotify and Pandora playing at the same time. In other words, chaos. I know that when it’s just me and my writing and maybe some instrumental music in the back ground, that is when I perform the best. You can apply this to all parts of your life. If you are running around, trying to do laundry, pick up around the house, get some play time in with your kids in between loads and vacuuming and watching that latest episode on Netflix, you are going to forget in-between, half of what you were trying to do. Streamline your life a little bit and you may find it helps with the fog.

7- minutes to a less foggy day: Exercise is known to boost oxygen and blood flow and therefore boosting your brain power. All it takes is 7 minutes. That’s it. This is not a 30-minute workout condensed into 7 minutes where you feel like you ran the Empire State building 3 times. You do what you can, within your ability and capability, to where you feel like you’re revitalized and call it done. It can be stretches in bed- yes, I mean it, right from your cozy comforter and heating pad. You can sit on the edge of your bed and do some leg lifts, some stretches, anything. I’ve started doing yoga again. I was a yoga instructor. Then, my body failed and I felt like I’d never be able to do it. Then it occurred to me that the whole joy about yoga is doing it for yourself. Not doing it because I want a better physique, or because I want to be able to contort myself into a pretzel. For me and for the pleasure and peace and balance it brings me. So, I started again, and it’s slow, and I hurt but I did it. At my speed and with my modifications and that is my 7 minutes.

Zen your way to less fogginess: Meditation is good for the soul and good for your brain and good for the fogginess. I know, it’s hard. But you don’t have to cartwheel into 20-minute meditation periods. Start with 5 minutes. Seriously. Meditation is about being present and being aware and not about thinking about the casserole you have in the oven while you are meditating. Take some time out, where nothing and no one will disturb you and meditate. There are plenty of books, plenty of places to start with simple meditation. My favorite jumping off point is candle meditation. It gives you focus and you can work on length of time. Do it a few times a week and jot down if you notice differences in your brain fog.

Food Triggers: There is a lot to be said for food that triggers brain fog, however, I have not done enough research to understand who or what the culprit maybe. There are a whole range of auto-immune disorders that can cause brain fog as a symptom and depression can also have the symptom of brain fog, as well as other mental disease. But looking into what and how you eat is important so I’ve included three foods which are guilty in causing or worsening brain fog.

1.)    Gluten: I know, everyone is hatin’ on the gluten, but in all honesty, even if you don’t have celiac disease, gluten can be a huge issue. You see, over time consumption of gluten can lead to low or even high levels of inflammation. This can greatly impact brain functions and one of the symptoms is brain fog. I’m not saying ditch the gluten entirely, but ditching it maybe 50% of the time can make a huge difference in how you feel.

2.)    Refined sugar and carbs: As with gluten, long term and chronic intake of carbs “white flours” and refined sugar and corn syrup, this can lead to glucose problems as well as systemic issues. The yeast over growth can cause symptoms like fatigue and brain fog.

3.)    Caffeine: The dangerous pick me up that we all crave. It can lead to brain fog as you spiral into a habit of more and more caffeine to give you the same pick me up as it did the first time. Ever have a caffeine withdrawal headache? Talk about a bad day… If you are consuming more than 100mg of caffeine a day you should try to break the habit. Look at how much sleep you are getting first off. You are more likely to fall into this vicious cycle if you are not getting at least 7 hours sleep. If you just like the taste of coffee, for instance, try blending caffeine and decaf until you can go completely caffeine free and also try a darker roast for a more satisfying cup.

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Self Triage

In the whole spectrum of the chronic illnesses that you manage, do you ever feel like you have to triage yourself? That some issues get more attention than others because they are the more ‘serious’ of your diagnoses? Then you find yourself maybe a year later, realizing that you still haven’t even tried to seek help to sort out that particular issue? Welcome to the madness of multiple chronic illness.

When I first began this journey I really had it planned out. Not figuratively, but very literally. I was going to start with the first issue and work my way through everything that was going on and I was going to systematically go through each and every one of them. The reality, however, is much different, at least for me. The reality of the cost of medical care, even while having insurance, is sometimes staggering. The idea of having to add another specialist that costs $35 each visit and that sometimes requires more than just one, monthly visit is incomprehensible. Add on to that the cost of medicine, that may or may not work and the need to try one after the other, after the other, until maybe you find one that works. Don’t forget that not all may be generic and you may spend $45-150 on a medicine that you throw out after only taking a week or two worth. There’s also any testing that needs to be done to help the doctor diagnose the problem which can be anything from blood work to MRI’s and can cost a frightening amount dependent upon your insurance. Insurance feels like it’s changing regularly now. Ours used to be excellent and now I find I have to pay for things or meet a deductible for things I never had to before. And the expense has made me think about what is important or not, what can wait or not, no matter how it is affecting me and my ability to lead a relatively normal life despite my conditions.

I’ve dubbed this a sort of personal triage. The way nurses do this in a hospital waiting room. Weeding out those who are in dire need of assistance and those with problems that can wait. For instance, I can never rationalize the cost of a hospital visit even during a bad migraine episode or when my pain levels are uncontrolled. It does make sense to me to pay $250 (plus whatever they might give me that is not included in that $250, that you get billed for later) to get a drip of medicine or even turned away because they can’t do anything for me. It’s not like I’m having chest pain and I don’t know what is going on with me and I need a doctor to see me. I know my diagnosis, I even know what might help me in terms of medicine, but the cost is too steep. I know many in this situation too. It becomes this game you play when things get bad where you are pretty much taking things hour by hour, seeing if you can get through the next and next and maybe things will get better. This doesn’t just have to do with hospitals either.

The one diagnosis I have that I have only been treated minimally for is IBS-d. Irritable Bowel Syndrome of the Diarrhea variety. I have seen two different gastro-docs, had a number of tests done and have been branded with this particular diagnosis. However, because it is the -d type and I take opioids for pain, there is little they can do. The popular brand of medication to treat this can inhibit the opioids from getting into my system, which means they can treat the -d problem but my pain will go through the roof. This is what happens with comorbidity. So, the IBS-d has gone into the ignore pile. It’s there, but I have felt that in the grand scheme of things wrong with me that the IBS-d can wait. In the meantime, I have to deal with unpredictable, painful flares that truly inhibit my freedom and typically make me feel like a ticking time bomb. Things most people take for granted in the “Chronic-free world” like, going out to lunch, might as well be some Mission Impossible themed task. It doesn’t matter what I try to do, what I try to avoid, how ‘stress-free’ I try to make my life or what IBS-themed diet I try. It happens without warning and therefore truly complicates my life in ways that these more important chronic issues, don’t. It is frustrating all around and on some level, I realize that it is ridiculous to put off maybe finding someone creative enough that can offer more ways to help me, but it’s a vicious circle of complicated, chronic illness that continues to shuffle the IBS-d into the “It can wait” pile.  The IBS-d isn’t the only issue that has been largely ignored.

Since the beginning of my treatment at pain management I have expressed multiple “pain areas” to my doctor. However, in this case, it was the doctor who triaged me, saying from the get-go that he only treats one issue at a time. It’s been two years that I have been seeing him and he is still focused on my sacro-iliac joint pain, for which I tried numerous ways (both non-invasive and surgery) to deal with and here I am, still with the same pain, maybe even worse and still waiting for him to address everything else. Every time I go to see him I fill out this questionnaire on a tablet, which asks me to highlight my pain areas (about 4) and we are no nearer to addressing them. Recently, I was talking with my husband about it, trying to sort out what I should do about it but there is basically nothing. I am forced to continue with this treatment plan devised by the pain specialist because I don’t have anywhere to go. I’ve seen other pain specialists who were horrendous and he is the last on my insurance close enough for me to drive to. If I want any semblance of treatment, for which I am acutely aware many in my situation don’t have, I need to stay put and have patience. It’s just a vicious cycle of triage, on our part and the medical world, never really getting treated as a whole, but piece-meal and ultimately, never really feeling better.

As always, thank you for continuing on this journey with me.

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How You Get Through Is Enough

In my most recent blog post, which you can find here: https://lovekarmafood.com/2018/08/03/chronically-comparing/ I talk about the pitfalls of comparing ourselves to those not struggling with chronic issues. But I think it is also important not to compare ourselves to our fellow warriors, which is also easy to do. Many of us don’t have the benefit of surrounding ourselves with chronic illness/pain warriors in our daily lives so we surround ourselves with them in various forms of social media, read blogs, and try our best to stay connected. After all, these are the only people who truly understand our plight. The problem I find, which can cause us to struggle even more, is trying to compare how we are dealing with things to how our role models in the community are dealing with them. I’ve found myself on more than one occasion thinking, “Damn. They really have it all together.” Or, sometimes it’s not about having it all together, but how they deal with things emotionally.

The most poignant example that I feel illustrates my point is as follows: I have shared a little about my dear friend who recently passed away from a very long battle with cancer. I met her at work and she was my assistant manager at the time. Initially, I did not know she had breast cancer. She was in remission and was doing well. There is no other way I can think of to describe her, other than “a force.” Older than me by a few years, she had the energy of a five-year-old who’d just consumed 3lbs of sugar. We called her the Energizer Bunny. But more than just her energy was her spirit. She was vibrant and happy and always had a huge smile on her face. When she relapsed with her cancer and was going through chemo, she never missed a day of work and never, ever lost her smile and spirit. She is the reason I have a blog and the reason I started writing about chronic illness and pain. I watched her handle everything with such grace and beauty and be such an inspiration to so many people, I wanted to be like her. And here is where the but- comes in. But, I am not her.

It was during my time still working there that my health took a dive and I went through surgery and was searching for answers and trying to deal with my health and work and I was frustrated with myself because I was not dealing with it like she did. Here I was, not struggling, as I perceived then, on the same level as her and cancer, and I was flailing badly. Instead of power-housing through it like she seemed to, I was crying and beating my fists against the wall wondering why me. And then, I learned my most important lesson from my friend that I would only truly come to understand later. Talking to her at work, all before I would receive my two most impacting diagnosis, she would tell me very matter-of-factly, like I should have been aware of this all along, “You aren’t me. And I’m not you.” I’m pretty sure I laughed and maybe scoffed a little. Of course, we weren’t the same, right? I knew that. She continued to tell me that everyone deals with things a different way and that it was okay to scream and cry and ask, why me? She’d done enough of that too, but that she’d always been an inherently happy person and so it was natural for her to continue in that same vein and be optimistic. She added that it does help to look on the bright-side especially when the deck of cards is stacked against you but that I shouldn’t feel like I wasn’t measuring up because my way of dealing with things was different.

If it isn’t clear by now, her words had a profound impact on me. Even more-so now, writing for my blog and writing for sources whose primary readership are those battling chronic illness and chronic pain because I have read the comments left for me. Things like: “You are an inspiration to me.” “Your words are exactly my thoughts and feelings.” “I don’t know how you do it, I’m struggling just to get out of bed every morning.” I hear those words and many times I will write back and say I am just like you. There is nothing magical going on here and I struggle every day, just like you. I think sometimes people read these blog posts and wonder how I have the time, or how I manage my family on top of writing. My secret, that I will share with all of you reading in your little corner of the universe, is two-fold: 1.) I don’t manage every thing that needs to get done all the time. Sometimes chores sit undone. Sometimes I can’t write and need a long break. 2.) Sometimes I write to the detriment of other things that need to get done because it is therapeutic for me. When I get it out of my system, I feel a little better and feel like I can take a breath and tackle life again. I don’t want people who read my blog or other writings thinking I am Wonder Woman, because I’m not. I’m just a girl trying to keep herself afloat the turbulent waters of chronic illness.

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Chronically Comparing

Sometimes I get really, really depressed. It’s not because of my bipolar, or because of the many chronic issues I have, it’s because I went to Face Book or Instagram and I scroll through all the happy pictures of all the amazing things that friends and strangers are doing. My Twitter still remains relatively untouched by these things because my Twitter is comprised of about 95% those dealing with chronic issues. But I still have to navigate other social media and I find that many times, when I am finished, I feel hollow. I feel as though life has really dealt me a pretty crappy deck of cards and I lose the optimism I try to have and start wallowing in why-me? Worse, I start comparing. Comparing my life to my friends and strangers and punching myself in the gut because I feel like my family is really getting gypped.

Example: A friend of mine recently went to Antigua with her family. They posted dozens of happy, beach photos with smiling faces, holding enormous drinks and my heart sank. Traveling is by far, the most difficult thing for me to do. So much so that it is something we only venture to do once or twice a year. I am already panicking over a trip to Virginia to visit my sister-in-law over the Thanksgiving break. About a thousand what-ifs start circling my brain like rabid vultures, eagerly trying to sabotage my trip. Even the most seasoned of us warriors can only prepare for so much and as my husband would comfortingly try to advise me, “You can’t worry about things you can’t control,” but I still try. You don’t want to be the one that says, “Pull over…” You don’t want to inconvenience your sister-in-law who is going to have a house full of guests with your sucky issues. You don’t want to be the “needy one.”

It’s easy to get drawn into comparing your life to someone else’s. I do it and I’m sure more than a few of us do it too. In fact, even those of us without chronic illness and pain can get drawn into it so don’t be too hard on yourself. Instead, try to focus your attention on that which is good in your life and the strides and headways you have made. My friend may have gone to Antigua with her family, but I spent a wonderful weekend with my husband in San Antonio, that was completely spur of the moment. We didn’t sight-see, and spent a lot of time in the room, but you know what? It was GREAT! Also, put in perspective that what see on Face Book and Instagram is not all it’s cracked up to be. I recently wrote about what we hide on social media and that fits in here as well. Social Media is like an eternal first date. We’re always putting up our best smiling photos, our achievements and all our fantastic first-times. We don’t ever see pictures of our friend’s holiday with cranky, crying kids in the photos. We don’t see the four-hour car ride where one kid is crying, the other one is sick and mom and dad are exhausted.

Sometimes the comparison making is a little more insidious and we may not be as aware we are doing. For instance, several of my friends are in tip-top shape even after two or more kids. I click on post after post of how they’re keeping in shape: kick boxing, running 5k’s and the almost religious experience of- CrossFit. My idea of a 5k is scrambling to 2-3 doctor appointments in one day, after which I am exhausted. CrossFit is going to the grocery store and zig-zagging back and forth, isle after isle because I forgot something and probably will still have forgotten something when I get back home where part two of CrossFit is putting groceries away. But instead of sitting there thinking “Why me?” Which I have no shame in confessing I have done and probably will still do- think about what you do accomplish in the course of a day and week and be proud. You have to remind yourself that what you see on social media is only part of things, the things people want you to see. We all have our struggles and some might not be visible.

The last thing is more complicated. I don’t think anyone should compare what they have or what they have accomplished to someone else. We are all unique and we all have had to over come our own unique struggles. It is unfair to compare yourself and I think it takes something away from what you have accomplished if you’re suddenly comparing yourself to someone who did not have your life. I think it is even more important not to compare yourself to someone else when you are struggling with chronic illness/pain. I sometimes think people use comparison as some kind of bar for which they haven’t met when I think the bar should be set from within. For example, I used to compete in gymnastics and I used to run cross country. Though both were competitive sports, my sole focus was a better score than the last one in gymnastics, and a better time than the last one in running. The competition was always internal. So don’t worry about the things they can do just worry about the things you want to do and get there.

Chronically Expensive

I think the majority of Americans can agree that many major illnesses, let’s say like cancer, can be expensive. Even with insurance. There are many things that insurance won’t cover and even the best insurance can leave a person struggling. I had a friend who passed away from breast cancer recently, and some of her treatments, for shots alone, were in the thousands of dollars. I remember we had a go-fund-me page for her so people could donate and help her out. I don’t think many people understand the expense of chronic illness. People don’t understand chronic illnesses well enough to be able to attach a cost to it and sometimes the expense isn’t doctor or insurance related. It’s in the pursuit of things to make us more comfortable that begins to rack up the cost or, in the loss of time at work if you have to miss days or, groceries purchased with all intentions of cooking but are unable because you aren’t well.

The expense does begin with doctors. The complication of insurance. Things they will and won’t cover. Things they used to cover but for whatever reason now, only cover 50%. Sometimes I think those of us with chronic illness should also take some kind of crash course in insurance just to be able to make heads or tails of it. I wanted to come up with an estimate but sadly, it really does fluctuate. What I spent this month or even this year on doctors and tests may not be what I spend next month or next year because it depends on how I am feeling or even the meds I am taking. An example of this is the Tegretol I was just put on to manage my OCD, Restless Leg and Seizures. I need blood work every 3 months to monitor the levels to be sure it isn’t killing my liver or damaging my bone marrow. I only just started taking this about 2 months now, and my insurance only covers 50% of the blood work. So that will be an added expense I did not have before.

Now, doctors and blood work and other random tests aside, there is the private expense of products in hopes that it might make us more comfortable and ease the symptoms of chronic illness. I’ve probably purchased hundreds of dollars’ worth of products in this last year alone with the grandiose hope of easing my symptoms. Everything from bath salts, to creams and balms, pillows (I have an insane number of pillows and I know my husband thinks I am crazy); a heated blanket that I do not use to cover myself with but to lay on so it acts as a giant heating pad and additional heating pads and let’s not forget the other random things like allergy creams and eye drops and various teas to help with chronic symptoms, the list goes on. Much of what I purchase is holistic in nature. I’ve had very high hopes of making my own products for aches and pains and itchiness but let’s face it, there are many times I can’t even make dinner and am grateful for the fact I cook for an army so there are often left overs when I can’t muster energy to cook. I haven’t given up the dream yet and I figure if I can plan it out well enough maybe I can still.

Oh! And clothes! How many people who don’t have chronic illness or pain realize that many of us require special clothing too? I don’t mean like compression socks either. I’m talking about every day clothing, from bras to undies to shirts and pants and even shoes. Everything I wear has to be light and soft. I have not work jeans in two years because the weight of it and texture of them hurt my skin. For awhile I could get away with jeggings, but then I couldn’t tolerate those either. So, I have like 15 pairs of jeans and jeggings combined that I can’t wear and refuse to sell because I hope I can wear them one day, in my closet. Instead, I live in leggings and joggers and soft t-shirts and light weight, barely-there undies, because even underwear will bother me. And don’t even get me started on bras. I haven’t worn an underwire, back clasping bra for even longer than I haven’t worn jeans. My saving grace has been bra-letts. Best invention ever. My point here is that we incur cost in so many areas beyond medical, just in an effort to make our lives more comfortable and manageable.

I mentioned time off from work, but what about when you can’t work at all? That is a huge loss! It is a huge financial strain when it’s a two-home income, but what about if you are single and what if you are a single parent needing to provide for children? Suddenly you are not only distressed about your health but distressed about finances and the basic ability to keep food on the table for yourself and children. And we all know stress is horrible for chronic illness. While I do not claim to be an expert in disability, I am fighting for disability in my home state of Texas. If I were single with my children to take care of it would not be possible for me to even contemplate disability as Texas requires proving you have been out of work 6 months due to your disability. I don’t even know how this is possible. How you would pay rent and pay utilities and maintain a vehicle and buy food (and let’s not forget medical insurance) and all the other things that go along with providing for a family if you can’t work while seeking disability. I am beyond lucky that my husband is able to work and care for us all. However, I am very keenly aware of the hardship it places on him though he never complains. We get by, but some months it is very hard and we have to sacrifice a lot. I stress out about finances all the time and again, my husband is there to remind me that we will be okay.

My final thoughts: chronic illness/chronic pain is expensive and it sucks being sick. You are never able to just think about yourself because there are so many things that your being sick, affects. It’s a constant vicious cycle of expenses and a constant worry of “where am I getting the money for this,” and an ever-fretting over how much your significant other (in my case) is having to work to pick up the slack for you and feeling guilty because of it that- it’s exhausting. And if you are on your own, I can only imagine the worry is amplified. Being sick is expensive and it doesn’t look like that is going to change any time soon.

Fear in Chronic Illness

I often wonder if there was something I did that caused my chronic illness. Did I not take good enough care of myself? Did I not eat right? Too many chemicals and dyes in foods? Not enough vegetables? Too much meat in my diet? I drank milk as a kid. And if it wasn’t that was it deeper? Did I do something hurtful to someone? Is this a punishment of some sort? Or even more profound, did I do something in a past life? Was I a rotten human being who had to pay the price for crimes I don’t even recall? As ridiculous as that might sound, I would bet more than a few of us have considered it.  It’s hard not to consider it when you are facing so many chronic issues and are feeling beaten down by them.

As I maneuver through this thing called chronic illness I am often left with a chilling fear that no one can assuage because we each walk this path in our own unique way, and that is what happens 5, 10, 15 years down the road? I am lucky in many ways, I know that. I know people younger than me whose combination of illnesses has left them in much worse shape and unable to get around as good as I can with my cane. While I am grateful for what my chronic illness has not yet taken from me I fear the future and those things it might take away. There’s no way to predict. Even talking to those I know with the exact same issues, there is no way to know how far it will progress and debilitating it will get. I fear that unknown while trying to remain optimistic and grateful for everything I still have. It is not like I want to dwell on the negative. And I have had people tell me, “Oh, don’t think that way. You’ll cross that road when you get to it.” It sometimes makes me laugh when I hear that because I wonder if it were them would it be so easy?

I’m 44 years old. I have an amazing husband and four, amazing daughters. My husband and I have these dreams for our retirement and the things we’d like to do. On one hand I fantasize about those dreams and how we will achieve them and live them and on the other, I fear they might not ever be realized because I might not be able to. Which naturally progresses to thoughts of, what then? Will my husband love me still if all these things we’ve been working toward, all these dreams we’ve been slowly trying to see realized, are never experienced because I am unable? It’s a foolish fear. I know he is not going to abandon me because things aren’t as we planned. Knowing him he will try to figure out a different way to do things so I can experience everything. But this is one of the fears that eats at your soul when you have a number of chronic issues.

Let’s face it, death comes to us all. But, as humans, we don’t like the idea of death. It is something that we usually avoid until we are faced with it. The intellectual part of our brain understands death is imminent from the day we are born but we are naturally inclined to want to live and want our loved ones to stay with us for as long as they can. This is why there are any number of ways to stay healthy and attempt at living longer. There are diets and vitamins and advice from those who have achieved longevity, but in the end we all die. So, the goal becomes quality of life. Having the best time, we can on earth while we are living. That has been something I’ve recently had difficulty trying to grasp. I’ve always attempted a healthy lifestyle and until my body failed me, I was making good strides in being active. However, since things have gone a little downhill, I have not been able to lose the rest of the weight I have gained over the time of my inactivity. I know that losing another 20lbs would go a long way in helping me out but it doesn’t seem to matter what I tweak in my eating habit, I still can’t lose the weight and, because of my chronic issues, about the only thing I can do without being in ridiculous amounts of pain is yoga. I’m not talking about the Jillian Michaels Yoga Meltdown either, I’m talking about the Rodney Yee gentle, relaxation type yoga, which is great but not conducive to weight loss. I feel somewhat powerless in giving myself the best outcome in quality and longevity of life because I’m at a natural disadvantage. Not to mention the medications I take, some of which can have the potential to have devastating affects on the body and the fear that these issues have shaved, five or ten years off my life frightens me. I find myself worrying often about the time I have left and I am only 44. That may have seemed old when I was 15, but there have been many things, not to include my own growth, that make me realize that it isn’t old at all. And like most humans, I want time. I can’t help an accident or some random thing that might take me but I feel like I should have some kind of control over how I age and how healthy I can be going into older age. I feel that chronic illness is the huge road block that I can’t get around.

These are a few of the fears I deal with and I am sure others with chronic illness fear. I’m also sure there are other fears I have not covered and I would be very glad to hear any of your fears that you want to share with me. I think opening up a dialogue about these things can help. Sometimes we get stuck in our own way of thinking that it doesn’t allow another avenue of thought. Like when you keep getting a math problem wrong over and over again because you keep doing the same thing wrong. I think I am caught and I think if there are ideas about how I can get some control back and give myself a better outcome and more time, I would be glad to hear it.

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Self-Imposed Hermitdom

I have a secret and I am going to share it with you. I don’t like to “get out” very much. In fact, if I was going to be truthful on the subject, it would be closer to never. It’s a complicated issue and one only exacerbated by my chronic illness. I have a bit of social anxiety and coupled with the unpredictability of my illness I decided some time ago I was better off at home. It made it easier I was never a social butterfly, but it still often puts a damper on what few plans we may make. The majority of our fun revolves around our home. We play a lot of games and watch a ton of movies and I’ve been lucky that despite our four girls growing up, they enjoy spending a lot of their free time at home. It has kept any loneliness I might feel at bay.

The brief time I was working was difficult even with the minimal things I had going on in my health because I could not be there a 100% of the time. As things progressed, and my health deteriorated further, the sick calls became more frequent and my anxiety sky rocketed because I have a very strong work ethic and while I knew there was no way I could go in and be productive, I wanted to be. I hated having to call and tell my boss I was sick. It left me with a feeling of self-loathing and feelings of being inferior and unworthy. Let’s tack on to that a wish that I had simply been created normal with the ability to do things like everyone else.

Sometimes, I feel that I am lucky because I have imposed this self-hermitdom protecting myself from these difficulties and then things come up like holidays, when we visit family out of state and I find myself panicking in July because I am wondering: Can I make the trip? Once there, what happens if I flare? There’s a dozen of things going on with me that can truly sabotage a trip and I cannot predict nor plan so precisely, that I can make sure none of them happen. My extended family is amazing, but they are not here enough to see how bad things can truly get. Am I going to inconvenience people because I suddenly have something going on with me that prevents me from participating fully in certain plans? And this is when I think that maybe, self-hermitdom has handicapped my ability to deal with these social situations.

I am sure I am not the only one who loathes the idea of inconveniencing people. More so, I am certain I am not the only one who panics at the idea of getting sick outside their home. Whether it is at a friend’s house, restaurant, or on a family trip, flares are real and can seriously put a strain on everyone’s attempt at relaxation or fun. So how do you do it? Do you try to prepare for anything that might come up? And I realize that how much you can prepare is dependent on how much time you will be away from your house and maybe how much you can bring with you. But I would really love to know, because I am seriously worrying about our trip in the fall and the 999 ways things can go horribly wrong. I am reaching out to my spoonie warriors, I know you can hear me- shoot me some ideas that might make this trip go a little more smoothly or at least slightly less panicky!