What I Hide

(from my friends and family)

About My Anxiety

Though any group gathering can make me worse, what stands out right now is the holidays. That time of year when people have parties, families get together and the stores become a treacherous gauntlet. There are some people who thrive during this insane season, while others, like me, need to ready the mithril armor in preparation.

In my head, I know it shouldn’t be so difficult. Unfortunately, the rest of my body doesn’t seem to be aware of that; they didn’t get the memo, I will have to send a stern letter to management. Oh, wait! That’s me. At any rate, the moment I find out there’s some kind of gathering I have to attend, friends or family, the panic sets in and there’s an incredible amount of mental prep involved. This is partly because I’m ashamed of my anxiety and partly because I feel guilty for it.

1.)  Mental Prep

Here’s how a typical mental prep goes:

“Alright, Liza. Auntie and Uncle are flying in. Mom’s having a bbq and you need to look decent. Enough to pass Mom’s critical eye and enough that I won’t provoke any questions about my mental health. I also have to make sure I fly under the radar of Auntie and Uncle, which I am never certain I do, but they’re always good about not saying anything.” The scenarios will change, but it’s always the same basic idea. I want to appear as normal as everyone else. But I also want people to see that I do have limitations, but that I am still me. I’m a girl. I’m complicated! The mental prep, all humor aside, can be exhausting in itself.

2.)  OCD Worrying

I fret for weeks what I am going to wear. And that is if I know way in advance. If I don’t and it’s something sudden, where I didn’t have time to play, it’s worse. Even when I finally decide on something, I’m not happy. Too tight, too hot, too frumpy, or the always popular, I look fat. Anything to criticize myself and my choice. But no one, aside from my darling Mister, will know how much I worried over everything.

3.)  Gearing up for Conversations

This sounds benign right? I assure you that it is far from it. It’s basically three parts. The first, questions about my health. The second, what I plan on doing with my life. The third, casual, random conversations that should be easy but because I am hyperventilating about one and two, it never is. And, it’s always worse when I don’t know the people I’m around. Alright, so the first question about my health always stumps me. Do I answer honestly? Or will this provoke to much pity? Do I lie and possibly elicit the opposite response which is anything between apathy and skepticism? You might think this is harsh, but t is universally known that someone trying to acquire disability shouldn’t be happy, shouldn’t enjoy anything and definitely shouldn’t laugh. Let’s slide into home with the last, my life’s work- which couldn’t possibly be writing because I don’t get paid for it. Basically, this is just some glorified hobby of mine too keep me busy while I wait for disability. This is truly my least favorite topic of conversation because there is no winning. I could tell them I was being featured in Time or that I was Oprah’s newest favorite thing, and the reaction would still be, “That’s nice dear. When are they going to pay you?” Finally, I don’t do small talk very well. I hate, hate, hate, having to do small talk with someone I do not know. I have no problem sitting in silence and staring at them uncomfortably until they leave.

4.)  Can You Bring Something?

I am lucky that I do not typically host any event at my house. We’re far too small a space for the six people already occupying it so there’s little reason to torture everyone else too. But it usually means I have to bring food and while I don’t mind, I often worry about what to bring. Thinking about it as I write it, I am cognizant of the ridiculousness of this worry and what I put myself through, but it is what I do. I worry about the dish pleasing everyone even though I consider it divine intervention of some kind when I please every palate in my own house. I worry that if it is too simplistic of a dish it won’t be pleasing enough and yet, if I make anything too complex, I know that I will need help or that I will end up exhausted.

5.)  The Anxiety Over Having Anxiety

Finally, and I made this the last thought not because it’s the least of my anxieties, but because I want it to linger in your thoughts.

It’s hard for people who do not understand anxiety to comprehend all the stressors we go through, sometimes just getting out of the house. Yes, just to get out of the house. I’m now sharing a little-known fact about me that not even the Mister knows. On bad days, I can’t leave my house. When I used to work, to compound my misery and guilt over missed days because I was sick, there were days I just couldn’t leave my house because my anxiety was so bad. And, what is worse, is that logically I get it. I’m willing to bet we all do on some level. Stepping out of the house won’t kill me, but my body and the racing heart and the inability to breathe and sickness and nausea I feel, tell a whole different story to my brain. I’ve tried to leave my house and gotten as far as my car, locking the doors as I sit inside and hyperventilate myself into feeling that impending doom. I don’t want to feel like that and I just jack up the anxiety and stress even more when I try to logic my way out of it. I wish there was a way I could be free of it and maybe I will find it one day, but until then, remember that we don’t want this. Remember that before you make fun of someone for being anxious or diminish what they are feeling by trying to rationalize it for them, as though they didn’t already try. Saying things like, “It’s all in your head.” I may know that. I may know it in every cell of my body, but when my heart is pounding and I’m struggling for every breath and the tears are rolling, I just don’t give a fuck. I just want you to hold me.

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High Functioning and Disabled

What you see

is not how I feel.

A carefully crafted exterior

ghosting past 

friends, family and strangers

with that perfect smile-

doing everything I’m supposed to,

or close to it.

While in private, I collapse.

In private, I cry.

In private, I fall to pieces.

But before you see me again,

the pieces are taped together,

the smile arranged into place,

and the carefully crafted façade

is all you will see.

 

I first realized how dire my personal battle with pain was almost 15 months after I stopped working and I didn’t feel a noticeable difference. There had been some hope I’d been harboring, mostly in secret, that a little rest and relaxation would somehow, miraculously cure me. That truly brought the complex nature of my chronic illness/pain, into sharp focus for me. What was worse, was that now that I was considered a “house-wife” (and while I could write a whole other blog on the misogynistic origins of that term, what I simply mean here, is: not working outside the home) it seemed that I was even more busy than when I was working. There is this pervasive idea, that not being employed outside the home makes your life easier, when in fact, it does not. It does afford me some luxuries that working did not, such as: being able to take a nap when I need it, or the ability to spend a lot of time in the bathroom when I need to, but much of the time I am just as busy, or busier, than when I was going out to my job. Oh! And I do not get paid! However, this ill-descriptor leads both men and women to look at you with a measure of contempt, as though some great weight has been lifted from your shoulders and you should be elated and profoundly grateful for your situation. Oy…

 

Let me start by saying that I do not feel any resentment toward my “outside-working-counterparts.” I can’t fault them for their perceptions, however skewed it might be, partly because of how all facets of the media portrays those of us who stay home. I’ve mentioned before that lovely, turn of phrase, “staying at home and eating bon-bons.” Makes me grate my teeth till my jaw hurts, but I get it. At the same time, it’s those ill-conceived notions that make life so much harder for us who are struggling with chronic illness of chronic pain and spend the majority of our time at home. To bring this all together (finally) is that people, including friends and family and a good number of strangers, see me and many of us in the chronic world, as “high functioning.” Let me add here two things. The first, is that those who actually go out to work have an even harder time than I do. Their peers only see an individual who functions at work like a healthy person. The second, is that I added my situation within this definition of high-functioning because I consider my blog and my free-lance writing, my work and I also manage my house and everything that goes with that, from grocery shopping to cleaning and I also have all four of my children still living at home, in various stages of adult-ing. We are all seen as “high-functioning” though I would use “surviving” in its’ place. Many of my fellow warriors have no choice but to work. I have the luxury of being able to stay home, though “luxury” is not the word I’d use because we struggle a lot. I have a good partner, an empathetic partner, who knows that working outside the home was not only physically difficult, but mentally draining. I don’t want to be the kind of employee who misses work all the time or can’t keep up with my share of the work. It kills my self-esteem.

 

My biggest problem with “high-functioning” is that it fails to acknowledge my daily struggle. It fails to acknowledge the vast number of us that are defined this way solely because we’ve mastered the art of blending in. We’ve become as adept as a chameleon in masking how we feel because life does not simply come to a halt because we are having a bad pain or flaring. There is also a fear, for some, that if they are open with their situation that they might not have a job in the future or, that their employer may begin to scrutinize their work, looking for an excuse to let them go out of fear their job performance will eventually suffer. Slyly hiding within all this is the blind-eye we also feel from family members and friends and even strangers, with regards to our pain/illness. It never fails to surprise me how even those closest to me, evade the obvious.  It’s as though if they ignore it, it’s not there. There is also the continued attempt at comparing how I feel to how they feel after they’ve had a bad day. It puts me in quite a pickle because on one hand I am mentally screaming at how obtuse they are while on the other hand, I don’t want there to be this conversation about how I feel so much worse and ticking over the infinite number of symptoms and reasons why it’s not the same thing. Finally, there’s the pity that seems to be the go-to when they don’t know what else to say. I don’t want your pity, I don’t want to hear some cookie-cutter sympathy. I want you to stop for a minute and try to have some empathy. I want you to try to understand that while I might look “fine,” I’m far from fine and you don’t have to be psychic. What I have will never go away. You sprain your ankle or twist picking up a box, you might hurt for one or two weeks. I won’t ever wake up and feel better. You ache and feel miserable from the flu. A week later you’re up and around feeling better. I flare and feel like a train hit me sometimes and that won’t go away. It might for a few weeks, but it will happen again and again, no matter how hard I try. But I’m “high-functioning.”

 

It seems ridiculous to label someone “high-functioning” when all we are doing is living. Is there another option? Maybe I am being too sensitive about a label that implies I am doing pretty well for what is going on with me, but when that definition misleads people and gives them the wrong impression? Yeah, I take issue with it. I might look like I have it together, but I’m still disabled, I still struggle and the pain is very real.

Chronically Seeking

I began the day writing about one thing and after a doctor appointment, decided to take a different route and write about something else. Something that I think many of my Spoonie friends out there understand. I am sitting here feeling frustrated and angry and like I am not being taken seriously. I feel like I have little in the way of choices and I wonder how many of you feel the same way I do. I am talking about our doctors.

Don’t get me wrong, I am not on a doctor witch hunt. I have and have had, excellent doctors. In fact, if it wasn’t for a few doctors I have had, I might not be here writing about this. So this is not a hate filled rant against doctors; this is, instead, something inspired by frustration and feeling very much like I am caught between a rock and a hard place.

This doctor that I speak of has not been terrible, either. In fact, for the most part, has been very good and very helpful. However, I feel that we haven’t been on the same page for a long time and in recent months, I’ve felt our paths diverging even more and also feeling as though they, too, are feeling the frustration of a patient with no clear “fix.” There is also a sense that they are focusing on me in parts and not as a whole and the problem with this view, in my opinion, is that these parts cannot be fixed because they are part and parcel to a much broader issue- Chronic illness, which, the majority of doctors do not know enough about. Instead, they look at parts. I can’t tell you how many surgeries I have had that were needless, because no one was seeing the broader issue. While I do have a doctor treating me for the broader issue, I still have other doctors who are integral to my treatment who don’t always have the same opinion.

This is my question and why I am writing this: if you don’t agree, how do you go about getting a second opinion, or looking for another doctor completely? For me, the first place I look is always my insurance. Are they on my insurance? Then, I typically look at where the doctor is located, because I am relying (most days) on my two eldest to drive me. It can be complicated with kids who are working and going to school to find an appointment, but I manage. The next thing I will look at is if there is any kind of feedback on Yelp or other doctor rating sites, because they help in deciding whether or not this might be the right doc for me. I understand that not all the reviews are honest or fair, but I try to come to my own conclusion. After considering all these things, I am not left with many choices. Using this as an example, only three. Two of which I have already seen and have proven to be as horrible as their reviews, and then my doctor. So, what is a patient left to do? Grin and bear it? That seems to be the motto among chronic patients everywhere because I think besides being limited in who we can see, there is also an overwhelming feeling of exhaustion because we have had to see so many doctors. We’ve had to weed out the good from the bad, sometimes after extensive testing, only to have to start from the beginning again. It’s tiring and emotionally exhausting.

What to do about it? I was sitting here brainstorming what I could do and then something funny struck me. Want ads. They should have want-ads or maybe a website catering to the chronically ill who are seeking physicians. I can write a great one. It would go something like this:

I am a 44-year-old, chronic pain and chronic illness patient. I am looking for a kind, empathetic physician who understands my plight and who can think outside the box. Moreover, I am looking for someone who isn’t afraid that I know more about my illnesses than they do, who will integrate a holistic approach, meaning looking at me as a whole person and not just parts that might be damaged. An added bonus would be someone who isn’t offended that I want to be a part of my care and not just simply follow directions based on their advice because I understand my body and how I am feeling better than anyone.

I think that is a brilliant ad, if I do say so myself, but I am not sure there would be any takers. Still, if anyone is considering an app that pairs up doctors to their patients and vice-versa, I’m all in. Until then, I remain, chronically seeking.

 

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The Trouble with Spoonies and Fun

Prepping for a Concert and the Flare to follow

Every Spoonie out there understands the consequences of doing too much. I think most of us try to balance work and home and any fun we do so it won’t stress out our body and we won’t have a flare. But sometimes flares are unavoidable. There are things in life we have to do, even fun things that we want to do and we weigh the options and go for it despite the likelihood of a flare. For instance, a recent early Anniversary gift from my hubby that I have known about for months: Evanescence and Lindsey Stirling tickets. The concert was this past Saturday and I’m still recovering. It was well worth it the seats were amazing and I enjoyed every minute of it, but the venue was difficult for me though it is a beautiful place. It is outdoors, the grounds are sprawling and unfortunately, I found their accessibility lacking. Handicap parking was first-come-first-serve and even our very early arrival, several hours before the first set, we still found nothing. The venue is out-doors and from the drop-off point to the actual pavilion where the concert takes place was quite a walk for me with my cane. It is also August, in Texas, which means it feels like you are just a few inches from the surface of the sun and I fall into a category of people whose body is not agreeable to the warm temperatures. I am not sure if I am in the minority, especially when you are talking about the heat here in Texas, which I think could offend even the most tropical of people but, I seem to fare better in cooler weather. I think I must have sweat about a gallon, no joke, even after 8pm when it was dark, it was still around 85 ̊. Even after living here almost 23 years, the heat just takes your breath away. You don’t get used to it, you just tolerate it and are grateful that most of the time you are in a/c. After the concert there was some difficulty in picking me up because I had wandered too far in migrating with the throngs of people leaving and I ended up having to walk around quite a bit in meeting up with the hubby, who ended up having to park in BFE. This post is a combination of two things that occurred to me afterwards: Things you can do to ease a flare the day after and, how you can prepare for an event (like a concert) better than I did.  I don’t go out much, in truth, so I suppose that is why I’m pretty shoddy at preparing. But where I fail, you, my friend will reap the benefit of hindsight!

5 Ways to Prep Before a Concert

1.)   The Venue: Do your homework! You can’t determine where a concert will be held but you can recon the venue so when you show up it’s not all a big -inconvenient- surprise.

2.)   Parking: Make sure you know where the disability parking is if you are able to use it. If you don’t have a placard or plates, try to find the most convenient place to park that day.

3.)   Call the venue: This one is the most challenging for me. I don’t like feeling like some prima-donna who needs special treatment. Don’t be like me. I mean it. I may have suffered quite needlessly all because of my own stubbornness something that may have had a solution had I called. Having a disability and needing special accommodations doesn’t make you spoiled. You are just wanting the same, reasonable access as everyone else. So, call the venue and see if they offer any services that can assist you in getting around better.

4.)   Clothing: Make sure you are comfortable for the event and season of the event, if it is outdoors. I must have changed four times before I settled on something that I felt would keep me the coolest and I am grateful I did. The black leggings that was my first choice, while comfy, would have been the death of me in the heat department. You want to enjoy yourself so don’t sacrifice comfort for style.

5.)   Ear Protection: This is huge. Typically, we always bring ear protection with us but this time we forgot and by the end of it I was not alone in my ear pain. Not to mention it triggering a migraine that luckily, I had brought meds for just in case. We use the squishy ones for the shooting range and they do not impair your hearing of the concert, just your ears. Even two days later, I am still experiencing ear pain.

I’m sure there are more ways to prep before a concert that I haven’t addressed. Please, feel free to share them with me.

5 Ways to Self-Care the Day After

1.)   Rest: This is the biggest and most important thing you can do for yourself. There is absolutely no shame in it and your body will recover faster if you take the time out for it instead of just trying to jump back into life.

2.)   Crock-Pot-Rescue: When you plan your meals for that week of, make sure to include a crock-pot dinner, or something equally easy, for the day after the concert. This is part of self-care and resting.

3.)   Netflix and Cuddle: Or Hulu, or Amazon or Crunchy Roll! It doesn’t matter, just grab your favorite cuddle bug, sprawl out and indulge in your favorite movie snack and relax. It’s amazing what cuddling can do in combination with relaxation.

4.)   Bath or shower: Grab your favorite essential oil or bubble bath and sink in. If sinking in is not an option you can still drop some essential oils into the shower and just luxuriate in the hot water and soothe muscles and psyche while inhaling the fragrant scent.

5.)   Pamper yourself: Pick that one favorite thing you never indulge in and do it. It doesn’t mean you have to go out anywhere either. Love getting your nails done? Grab your favorite color and set up a comfy spot and paint your nails. Never have time to read? Here’s your chance! Make a nest on your bed and curl up with that book you’ve been meaning to get to. Sky is the limit and remember, you don’t need to wait for a flare to do these things either. Self-care can be any day of the week.

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The Demoralization of Not Working

I stopped working almost two years ago now. I had been working for the school district for a before-and-after school care program. It was a pretty good gig at the time. It paid well and while I had to be at the elementary school at an un-Godly hour, I was done at 8:15 and didn’t have to come back until 3pm and I liked the kids. It wasn’t day-care and the kids were always engaged in an activity and I really enjoyed it. My reason for leaving was surgery. I had sacro-iliac joint fusion and not only was it a painful recovery, but I did not have the success with it I was hoping for. My reason for not returning was in-part because of the less than satisfactory result of surgery, and because of the nightmare that my chronic illnesses had become and the pain I was in and still am in.

I decided to move forward with disability and (at least in my state) I could not be working while trying for disability. Two years later, and a lawyer involved on my behalf, I still am waiting on a hearing date and have not worked. Making the decision not to work was not an easy one. I think that even those closest to me may think it was the easiest decision in the world, but it wasn’t. It was the hardest decision I ever had to make and I’ve made some pretty tough decisions. Having a job is not only something that provides for your family, but also makes you feel like you are a capable and functioning adult. When you have to decide that you can’t work, not only are you cutting out a paycheck that helps your family live better, you are cutting out something that makes you feel independent and complete.

I deal with a lot of guilt over my decision to quit working because of my health. I see how my husband has to pick up the slack and how hard he works so we don’t feel the impact of my not working as harshly. Still, when life happens and we are faced with unusual expenses like when one of our dogs became extremely and suddenly ill, that absence of a paycheck is acutely felt. It’s not just guilts about the lack of a second income, it’s guilt about not doing my part. I have two parents who worked extremely hard all throughout their lives well past the average age for retirement so they could live comfortably and because all they’ve known is work and if they were hale enough to work, why stop? I think retirement was hardest for my dad and even know he keeps himself busy at 81 years old and volunteers at the local hospital in their ICU. I am 44 years old and looking at disability and feeling like crap because I don’t feel like I am doing my part.

Not working has a unique way in demoralizing you. There are simply so many things attached to having a job or career. Self-esteem and independence and pride you feel when you do well at your job, a paycheck that is yours and that you can spend as you see fit, and the benefits that come with a job that can help to secure a comfortable future when you do retire. Not working at 44 years of age brings skeptical looks from people as well as pity. “Oh, you poor thing.” Or “Isn’t that a shame.” My favorite, “At least you’re married.” I feel as though I am no longer ranked among the adults of my age. I am an adult, sure, but an adult that has to be taken care of. I am a burden on those that I love. And don’t think I haven’t considered some very frightening possibilities, like what happens if something befalls my husband? Would I have to rely on my daughters to help me live? Would I be forced to work despite all my issues and would I be able to keep a job or would I be jumping from job to job because I get fired because I am sick? It’s humiliating and keeps me up sometimes worrying.

As I said earlier, the decision not to work anymore and seek disability was not easily made. I looked at every issue that I struggle with on a daily basis and the many jobs that might be available to me, with my education and skills and determined that the unpredictability of a couple of my issues alone makes it extremely difficult to be relied on as an employee. Debilitating migraines that come on suddenly and cripple me for anything else but laying in a dark room and praying that it will pass quickly. The IBS-d that doctors can’t treat effectively because I take opioids and so every couple of weeks I am in agony and running to the bathroom. The seizures I have, that even though I am on meds I still have absent seizures that make it dangerous to drive. The pain I am in daily, whether it is all over my body because of the fibromyalgia or specific to joints because of the RA make my life unpredictable and makes simple things like getting out of bed hard, never mind going to a job for 8-hours a day. The opioids I take for the pain which make me a risk on the road and dull my mental acuity. There is nothing I can do for long periods of time that don’t cause me pain. Standing, sitting, walking and even laying down for too long hurts. I am at risk for falling because I have balance issues and I use a cane for both balance and because my SI-joint hurts all the time. All of these factors and more were brought into consideration when I decided I just can’t work. The more? Looking at it from an employer’s point of view. Who would want to hire me? And if they did hire me how long would I last before “reasonable accommodations” became tiresome and before my absences became something they could not overlook anymore? I don’t think it would take long. Employers kind of like hiring reliable people. I am the antithesis of reliable.

I suppose my final thought would be extended to those who are able to work, to not look at those of us who can’t with disdain. We’re not being lazy. We’re not sitting around at home all day eating bon-bons. Chances are that we feel horrible about not being able to work. Chances are that we feel extremely guilty that our partner is out there working every day and we can’t help. We make a great effort to do what we can at home so that we can feel useful but it will never compare to going out there day-after-day and working, sometimes over-time and holidays to make up for the other partner needing to stay home. And understand that we are grateful. That we understand the great sacrifice of our partner has made so that we can be home. Staying home is tough.

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.

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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