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.

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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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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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