The Big (not so) Beautiful Lie

When you are first diagnosed with chronic illness/pain, you are very quickly acquainted with dread and fear which are inextricably linked, in addition to overwhelming anxiety. Chronic illness and pain are something which are uniquely foreign to that which we are accustom to. These are not the flu or a cold, or a twisted ankle from tripping on a dog toy. This is something long term (hence the chronic), for which there is no easy remedy or medicine to cure it. Once you’ve been able to process the diagnosis and conquer the dread, you become more optimistic, regardless if you are naturally pessimistic. I think there is a natural, human desire to want to look at the most positive outcome when you are sick and especially, if you are in pain.

Research mode, typically follows this period of distress and positivity, and when I say research, I mean research. Whatever the ailment maybe you are delving into books, diving down the rabbit hole of Google and looking for anything you can find that might help you battle whatever it is you are fighting. You search for groups on Face Book where you can meet people who are going through the same thing, in hopes of not only finding some comradery, but maybe some clue in how to battle this thing and win. You become a person, previously with no knowledge on the subject- maybe not even knowing it was a disease at all, to someone who might as well have an honorary PhD. However, after all that fervor for learning, what happens next is very anticlimactic; nothing. You may find some things that alleviate some of the symptoms; you may walk away with a few new friends who become an extension of your support system, but you find little in the way that makes a dent in how you feel from day to day. (This can vary from person-to-person.)

Weeks go by; months go by; and sadly, for many of us, years go by with little change. What began as a moderately optimistic journey toward recovery becomes a portrait of self-criticism. What I mean is, doubt creeps into our psyche. Did I do something to cause this? Should I have changed my diet? Become Vegan? Should I have switched all my commercial cleaning agents to essential oils? Stopped drinking soda? Drank more green tea? The questions posed in this self-interrogation are endless and the questioning can continue quite a while, covering your entire childhood through your adulthood. It is this idea that if you were just able to do something different, either through your diet or what you are exposing yourself to externally, that you could get better, or better yet, cure yourself. This is the big, not so beautiful lie. This is what many of us zone in on, trying to assign blame to something, not being able to accept it might be the luck of the draw and that sometimes we simply don’t have control over what makes us ill.

Part of the fall-out from this is when strangers or even extended family members issue us advice on how to get better. There is an inward clenching and mental eye roll as we try to maintain our manners. It’s not their fault that they don’t understand, right? I wish I could be more forgiving when someone advises me on the fine attributes of turmeric, but the fact is, if I haven’t already tried it, it’s likely I know about it, courtesy of my intense research. This isn’t an effort to bash those that mean well, rather, it’s an effort to help them understand and by changing the way they word something, come across less assuming and more genuinely interested to help. Example: “You should be taking turmeric. It will help you feel a lot better. I read…” Instead, “In case you haven’t heard, I read turmeric is really good for inflammation…” or “Have you heard about turmeric? I learned it might help bring down inflammation…”
Lastly, if you are struggling with chronic illness/pain, remember it’s not your fault. Stop telling yourself these big, not so beautiful, lies and be kinder to yourself. You are already going through a lot, and self-blame will not help you.

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Chronic Suffering

To not have your suffering recognized is an almost unbearable form of violence. – Andrei  Lankov

**Trigger Warning**

 

As a community I feel we try to give the validation and understanding that many within our community aren’t receiving on the outside. I can’t say how many times I have read a post on a chronic illness board, and read how truly excited people are that for the first time they are understood and not alone. But while we may feel less alone when we venture to these community boards or Spoonie chats, eventually, we have to return to our reality, and for many of us that reality is incredibly lonely along with being incredibly painful.

When I talk about loneliness I do not necessarily mean the state of “being alone.” Many of us have family, kids, spouses and friends who are supportive and many of us have jobs and other hobbies and interests that keep us busy. The loneliness I am speaking of transcends beyond that which we associate with absence of people in our lives. This loneliness is insidious and pervasive because even in a room full of people we can still feel incredibly isolated and alone.  It’s a loneliness born from the isolation we feel as we endure the constant assault of pain on our bodies. This pain is not limited to the physical either, but the violence that takes shape through the neglect we feel, as our suffering goes unrecognized by so many, including those who love us and a medical community that is supposed to care for us. To a certain extent our effort to try and be normal, to buck up like good little soldiers and press on, to smile when we’d rather be crying and to sugar-coat how we are feeling to others when asked, has not done us any favors. It has left the perception among the “non-chronic,” that we aren’t quite as bad as we seem and worse, that we are lazy drug-seekers, looking to milk the system through disability. The indifference that we feel from those outside our chronic community is lethal.

Just for a moment, I want you to imagine with me this: You go from being a vibrant human being with friends and family, a great job and fulfilling hobbies, until one day you wake up sick. At first no one can tell you what is wrong even after test after test. Then, they tell you it’s all in your head and that you should get outside and exercise and you will feel better. Another doctor tells you to see a psychiatrist because he’s given up on finding anything and later on, pain management treats you with flagrant suspicion and red flags your chart as a drug seeker. In the mean time, your spouse (though they may love you) doesn’t know how to help you because they don’t understand what’s happened. You aren’t running a ridiculous fever and covered in lesions so why do you always hurt and why do you always feel so tired because you really do nothing all day? Your friends drop you like last season’s faux fur and if family wasn’t family you are pretty sure they would too. Working is reduced at first before being cut to part time before you can’t at all and you have to fight for disability. Anything else you once did for pure enjoyment is drastically reduced. You find yourself attached to the computer because it is a lifeline to normalcy, where you can talk to other people who understand this new reality. Then, when you are forced to leave those who have become surrogate family and friends, to be thrust back into an apathetic world you realize just how much you have lost and the knowledge of that can be too much to bear.

A few days ago I lost a friend I’d made on a chronic illness board. We’d been chatting back and forth and learned we were in the same city, planned on meeting after the holidays and then the holidays passed and I didn’t hear from her. But holidays are taxing and we all understand there are good days and bad days so I really didn’t think much when we celebrated New Year’s and I hadn’t heard from her. So when I received the message from her husband that she had reached the end of this battle with her illness and took her own life, I was devastated. The devastation coming from the intimate understanding of why she chose to end her life. This does not mean I am suicidal, or that anyone with chronic pain who has considered at some point, ending their own life is suicidal. I think that when you are living with pain that no one can control and you realize one day that it could be like this for 20-30 years, it can be an extremely daunting and terrifying thought. Also, let me say, that I am not condoning the act of suicide, merely saying that as someone who struggles with chronic pain and loneliness, that I can empathize with her thought process.

Her death is a tragedy. It is both a personal tragedy and human tragedy.  Her family will have to continue without her, enduring all those life moments with her  but it is  still  also reflective of something much larger. Her death sheds light on  the inadequate efforts taken to both understand and effectively treat chronic illness/pain, that may have prevented this entirely. Perhaps each and every suicide that is driven by interminable pain and loneliness, should be a teachable moment for those within the medical community and also, those making opioid laws, that they might endeavor to do better for those patients suffering. Perhaps, a picture of her face, and one for each of those countless others who have believed that their only option was to end their life should be assembled before lawmakers and hospitals and doctor offices, that they can see the true suffering that stole their life away.

*Written for National Pain Report 1.18.18. I chose to share it again because suicide among those with chronic pain is very real. No one should feel suicide is a better alternative to living because of the pain they’re in. No one should be pushed to suicide because they were force tapered from their medicine. We are not addicts.

When Calling the Doctor Feels Like You’re an Inconvenience

Scenario: It’s been roughly three weeks since you’ve seen your doctor. He/She prescribed new meds and you think you aren’t tolerating them well. The scenario could be anything you like, but how you question yourself remains the same just as your reluctance to call the doc up.

 

In my scenario I use the word think as a descriptor in how you are tolerating the medicine because in the grand scheme of the rainbow of symptoms, we, as chronic illness patients can sometimes feel, it is not always easy to determine the why of an onset of new symptoms. It is also difficult for me, to decide whether or not to call the doc and share with them the symptom, out of fear that it is all in my head or not really worth the docs time, and that it will go away in a couple of days. If you are like me there is a certain amount of agonizing before calling the doctor. You have a mental checklist that you have to mark off, nearly all the boxes, before it is deemed legitimate enough to call the doctor. Alright, maybe it’s more like guidelines, but ultimately, it’s a way that I feel my concern is serious enough to call the doctor.

But what is serious? What is serious to you and me are probably different, and what is serious to a doctor is definitely different. I’ve also seen enough doctors that I feel I can make the statement that, male and female doctors can see things differently. This isn’t a blanket statement, just an observation from the many doctors I’ve seen for myself and on behalf of my children. This confusion, as a result of differing bodies and differing doctors can make navigating what to do when something new crops up, very difficult. So difficult in fact, that I spend quite a deal of time stewing in my own anxiety, working myself up and probably making it worse. I wish all doctors made it easier for chronic illness and chronic pain patients to come to them when they had concerns. For example, my rheumatologist gave me her email. This is a great source of relief to me because I can bypass the staff and nurses, trying to explain what is going on and just  leave a message for her. Then, she can email me back advising me if I should come in for a visit, or something else I can do to ease the problem. This may not be something every doctor can do for every patient, but there should be some way bridge this difficulty. Life is already so difficult trying to manage chronic illness/pain. The majority of us come with comorbities that include a staggering number of symptoms that aren’t always there but fluctuate. It’s also pretty common to experience new symptoms that weren’t there before. For instance, I have developed an allergy to adhesive. Never had an issue before and I’ve had a lot of experience with them. It’s annoying.

I wish there was a way to improve the doctor/patient relationship so that the patient doesn’t feel like they are bothering the doctor and the doctor doesn’t feel like the patient is calling all the time. I do understand the need for a doctor to have some off time where they aren’t on call every day and every hour. I also think it is important that the patient feels they can come to their doctor with issues and not feel like they are troubling them. I don’t mind waiting until the end of business hours when they are not busy caring for other patients to get a call back. I don’t even mind if they just leave me a message. But I’ve had doctors not return my call for days, after which I had to take myself to the clinic, where I ended up needing additional meds. I’m not saying I know how to fix this issue, but I think it would be great to open up a discourse with the input of patients, to see how it could be fixed.

 

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.

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.

Relationship Between Chronic Illness and Assault

A personal experience #MeToo

I have done a lot of reading about how stress can affect the immune system and how it can have a pretty hefty hand in our over-all health. There are even some doctors who believe that stress is a major contributing factor in autoimmune disorders. This is not to imply a direct cause an effect, but something that I think is interesting and may warrant further review. In my own case of rheumatoid arthritis and fibromyalgia, I can see where stress throughout my life may have had an impact, however, in my daughter’s case I do not seem the same correlation and she also has the same diagnosis. Something to mull over.

My reason for writing this is many. The Kavanaugh hearings and controversy surrounding it has been very difficult for me. In fact, last week was probably one of the worst weeks I’ve had in a long time. The painful memories this brought back affected my mental health, emotional stability and physical well-being. Even I was surprised by the totality of it. Something that I haven’t thought about much in roughly 30yrs, was brought into acute focus. Not only was it brought into forefront of my memory, but the discussions surrounding the Kavanaugh case and the arguments on both sides made me question decisions I made when I was no more than a child. So, I am writing this as a survivor who supports and believes other survivors and as someone who struggles with many aspects of her health posing the questions: 1.) Did the stress of my assault predispose me to chronic illness? 2.) Did it predispose me to my mental health struggles? 3.) Does reliving the experience via these hearings cause more harm?

To answer the third question first, I actually feel that while it has been a very painful experience to listen to the testimony of Dr. Ford and Judge Kavanaugh, that it has in some ways brought further healing through discussions with my husband. A question that re-surfaced not only because of these hearings, but because of the #MeToo movement itself, has been the price of my silence. I never said a word of what happened to me as a kid to anyone. I was far too frightened of my assailant and moreover, I was terrified of what bringing it to trial could mean for me and my reputation. Not because I was a promiscuous teen-ager, but because I’d flirted with him, he was older than me and I felt it would be used against me like “I was looking for it.” Thirty years later, the question that arises from all of this for me and the pain with it is: “Did my silence lead to more girls being assaulted?”  “Should I have said something?” and, “If I saw my assailant was about to be nominated to the Supreme Court, would I bring it all back up?” No easy answer there. And as my husband comforted me he reminded me that not only was I just a kid who was scared, trying to protect my parents from the grief and anguish of not being able to protect me and the ordeal of a trial, but that even if I had said something it would not necessarily mean I could have prevented further attacks. I don’t think that the reliving of the experience through these hearings has caused more harm, but I do think that hearing the issue of assault as a partisan matter has caused some harm. It not only re-injures the child-victim within me, but also the adult who struggles with how assault can be seen as anything but abhorrent and wrong. Not Republican or Democrat. Not something chalked up to boys will be boys or wild antics of a youth. Because while the boy who may have drank excessively and tried to assault someone or did assault someone grows up, never held accountable for his actions, and revered for successes as an adult, the survivor of that assault never forgets, deals with the emotional injury done to her for a life time and may end up with life-long struggles because of that. Though I understand there is only a small window of opportunity to be able to criminally charge someone, and that after that time there is no way to really hold someone accountable, I think the true crime here is that women feel and have always felt, that if they say something they will be the ones to stand trial, they will be the ones to be picked apart, not their assailant.

Jumping to my first question, did my assault predispose me to chronic illness? Sadly, I am unsure. One of the things I believe my assault did, was predispose me to thinking that this was supposed to be how I was treated. There was no longer a boundary between allowed and dis-allowed behavior from boys and later on, men. In High School I was constantly touched when I didn’t want to be, whether it was the juvenile “snapping of bra” or slapping my rear that sent boys into fits of laughter, especially and even more heartily, if you got angry about it. I did not have healthy relationships with boys and that would eventually land me pregnant and married at 19. This was an abusive marriage that I stayed in for four years because not only did I not know how to get out but I believed it was deserved. The job I held during that time was also ripe with sexual harassment, something I felt was just par for the course and all women were treated this way. No one said anything and I simply tolerated the behavior of men who would touch me without permission and just chuckle about it. There was stress everywhere in my life and I can’t even quantitate it. So, while the initial assault may not have predisposed me to chronic illness, it predisposed me to consistently being in environments where sexual harassment pervaded and where I was under continual stress, which may have made me more susceptible to chronic illness.

Looking at my second question, and whether or not it had a hand in my mental health issues, yes. I believe that my assault caused severe depression.  While my brain may have been hardwired for bipolar, I believe that the assault and continuous environments of sexual harassment, coupled with a marriage that was abusive in all ways, exacerbated my mental health and caused my OCD and anxiety and left me with PTSD. It has taken many years to come to terms with things that happened to me and to be able to function as well as I do and more importantly, be happy. Much of it was done without clinical therapy though I do see a psychiatrist who monitors my health, I’ve used writing as my therapy and sharing my story when I can. I’ve never shared my story as publicly as this before, but I felt that with everything going on it was high time. My whole purpose for my blog is sharing my experience of chronic illness with others, so they know they are not alone. My assault left me with chronic memories and I felt emboldened by others who are sharing their experiences to share my own so men and women who have experienced an assault know they are not alone.

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Mistakes Made When Traveling

With Chronic Pain/Illness

 

We have friends who have a ranch about 5 hours from here, give or take with traffic. The drive, from my point of view, isn’t too bad on a mild pain day and we typically stop mid-way for snacks and just to get out for 2o minutes. The problem, however, is that even someone who writes about chronic pain/illness all the time is bound to make a mistake when traveling. Here are a few of mine from this past trip (I’m sure there are more).

 

  • Cover your bases: In effort to travel light I didn’t pack a sweater or jacket. Though I do better when the temperature starts dropping, I also seem to feel temperature changes more acutely, so when it drops below 70֯, I typically need a sweater. We left home at 90֯ and then arrived at the ranch bringing the rain with us and a drop-in temperature to about 60֯. I was freezing my butt off and miserable so that I couldn’t enjoy myself outside as much as I wanted to without shivering.
  • Don’t be a slave to fashion: I’ve been lamenting my jogger and legging wardrobe and wanting to wear my jeans again. I’ve never been stylish, but constantly in leggings and joggers has begun to wear me down a little and I do love jeans. I found two pairs in my closet that seemed to fit comfortably, but I only wore them for about 30 seconds. That didn’t stop me from bringing a pair along and instantly regretting it after the first 30 minutes. I was so very uncomfortable that I wanted to cry and realized how stupid I’d been to give into a sense of fashion when pain is involved. I have to take care of me and part of that is dressing in clothes that don’t make me want to cry.
  • IBS Doesn’t Go On Vacation Even When You Do: I had a good week in the IBS department so I was pretty optimistic for this little weekend excursion. But IBS doesn’t take a holiday and that second day, right after lunch, all hell broke loose. There is nothing more embarrassing than having a diarrhea flare up in someone else’s house. I did have medicine, which helped, but those damn jeans- ugh, I was so uncomfortable!
  • The Perils Of Eating On The Road: I’ve talked about before how stressful eating is when you are dealing with something chronic like IBS. My situation is like many others where it’s basically Russian roulette. I toggle between trying to be careful of every bite and not giving a damn because it doesn’t seem like there is any rhyme or reason to it. When you are traveling and maybe needing to eat on the road or perhaps like me, at a friend’s home whose cooking you are unfamiliar with, it can lead to issues. This experience has caused me to consider perhaps bringing some things in a cooler that I know don’t bother me so that I up the odds in my favor and maybe don’t have a flare.
  • Feeling High-Maintenance: I said no to bringing my heated blanket or an extra pillow or two. Seriously, WTF was I thinking? I’ll tell you what I was thinking: I’m so complicated. I’m so high-maintenance. I can’t just travel a weekend without bringing half my house. Slap-self-silly. I know it’s only a weekend, but it’s not something I can go without. I know I’ll hear that horrible term, high-maintenance, in my head, but if I’m going to travel I need to practice what I preach, right? I need to bring those self-care items with me or be left unnecessarily miserable the entire time.

 

I think the biggest issue is not wanting to inconvenience everyone. When I look at myself and these chronic issues I deal with life has very much become about things I can do to make my existence more comfortable. However, when I step outside that little box and I look at all the things I do from perhaps the perspective of someone who has no idea I deal with chronic issues, it appears that I am a spoiled brat, or high maintenance. Almost worse than that is the perception that I’m so sickly that I need all these things which can lead to being excluded from activities, or not thought about being included because surely, someone who needs all these extra things to be comfortable couldn’t do that. My husband is very active and has friends who are very active and I hate being seen as his wife whom he needs to take care of. There are a lot of things I can still do, I just have to think about how to do them. And sure, there are things I can’t do, but I want to make the decision myself. Thinking about how you might be inconveniencing other people diminishes your importance and also your enjoyment of the trip. The whole purpose of getting away, for a short period of time or long one, is being able to enjoy it. So bring the extra sweaters, bring the heated blanket, bring the cooler of snacks and drinks so that you can enjoy the time away.

 

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