Invisible Disabilities, Awareness: Limitations + Rest + Debilitating Effects

http://invisibledisabilities.org/coping-with-invisible-disabilities/relationships/loneliness-illness-pain/

Although we might think our loved ones with invisible disabilities are lazy and sleep all day, they may be having difficulty sleeping and are feeling sleep deprived. Thus, we need to allow them to rest whenever possible. After all, they are busy trying to maintain their condition and often have to push themselves hard to accomplish a few simple chores. With each activity they give their effort to, another could be forfeited and a price paid. After being limited for a while, they will begin to learn how to juggle their efforts and will discover what and how much activity causes them to hit a wall. 

We need to believe them when they say they cannot do something. Simply because we saw them participating in a task before does not mean they can do it again. “Only she knows her limits and they will likely change from day to day depending on many factors. What she could do yesterday may not be possible today. Don’t question that,” Dr. Rainier says.  Therefore, we must respect their limitations without enforcing a guilt trip whenever they are already trying to do more than their bodies can handle.

Illness does not respect people according to their income or status in life. The debilitating effects force people to make decisions and sometimes even change their dreams in order to focus on their health.

Not my words... Though I couldn't say it any better. 

Pills v Handicapped Parking

Life with an invisible illness has it's pros and cons. The most obvious positive I can think of is this ability to "pass" for "normal" or "healthy" when you're feeling awkward or shy or don't feel like talking about your illnesses. Sometimes it's nice to "pass" because it allows you a moment of feeling like you are not defined by the disease(s). The negatives are endless, but for most of us the worst is the "but you don't look sick" denial other people tell us, as if we have to look a certain way for this to be real to them. To me, in a way, this feels like victim blaming (in cases of sexual assault) or slut shaming. ***I make these analogies with no intent of disrespect to victims of the above experiences. I say this having experienced both victim blaming and slut shaming. It's just my experience that the feelings are similar to the "but you don't look sick" comments. The common thread there is this total invalidation of another persons truth, in this case mine.

I've ranted about handicapped parking on Facebook and I've alluded to it here: http://lifewouldkillme.blogspot.com/2013/08/psa-its-not-just-handicapped-parking.html

You can walk from the back of the lot to here with tiring or fainting?! No, YOU are so lucky.

I try to keep good perspective on it, but that's easier said than done. It really irks me. This is coming back up because of something that happened, or rather didn't happen, on my birthday.

Kevin and I went out to dinner in Little Italy. The alarm he has set to go off every two hours (all day) went off toward the end of our meal. Remember what I said about being able to "pass" for "normal" when you're feeling awkward or shy or don't want to deal with your illnesses? At a nice dinner on my birthday would be a great example of a time when I'd like to enjoy pretending to be normal.

(If you read my Facebook post that night, I was enjoying laughing at the restaurant owner asking if we had a babysitter then 180-ing to 'oh it's your 21st' when I said it was my birthday. I liked that. I don't mind passing for having a kid or two at home, because the reality is I'm not healthy enough to even consider having children at this time. And if my tired face looks like that of a loving mother, then it's a special, beautiful kind of tired-looking.)

Anyways, nice dinner, birthday... I hesitated on pulling out my pills. I told Kevin, as I have a time or two before, that I hate pulling out my pill bag in public. There is nothing that screams "I'm sick!" louder than my pill bag. Figuratively speaking, of course. However my pill bag actually IS noisy. It's a gallon-sized Ziploc freezer bag. And then the cases that the pills are in crack open and snap shut. And the pills jingle-jangle up against each other. There's no subtlety to it at all.

The view from one side. My 4-dose-a-day pill dispenser. If the alarm goes out in public, this is the bad boy I have to pull out. And I always do it awkwardly, shamefully announcing to the room that though I don't look sick, turn me inside out and it's a different story. In this you'll find nerve blocks, muscle relaxers, extended release pain pills, short release pain pills, anti-virals, probiotics, allergy meds, etc etc etc...

Now, if I'm fumbling with that 4-dose-a-day guy, this is the side you are seeing. My "extra" pill jars that aren't daily takes, but pills I have to carry around just in case. My large 1-dose-a-day pill dispenser for bedtime (because my nighttime medications are way too large to fit in the smaller boxes of the 4-a-day case). A thermometer. Purell wipes. Bacitracin. An antibiotic super-strength version of bacitracin (because with my immune system, cuts aren't normal cuts--they are little vestibules for massive infections to grow in). Nasal spray. Eye drops. Chapstick (dry mouth/lips is no joke). Headphones for when I go to PT. Ponytail holders that I usually wear on my wrist, but sometimes take off because of swelling. Oh and that manilla envelope visible on both sides of the bag, that is my most recent letter from the Social Security Administration denying me coverage for disability. (I don't save it because it makes me feel good; it has instructions for what to do next.)

Anyways, the point is... I get really embarrassed to take out my pill bag in public. I tell Kevin if strangers mistake my gained weight for pregnancy I'll go along with it rather than go through the awkward correction. I tell Kevin if strangers mistake my pills for cancer medicine I will go along with it, rather than trying to explain my actual illnesses (which no one has heard of and few take seriously). I don't mean to make light of cancer, it's just that people understand cancer. Cancer, unfairly, hits people of all ages. So strangers can wrap their heads around that. Also, some types of cancers have cures and that innately makes people more comfortable with illness. But with my illness, people desperately try to find a cure and do the research I long ago gave up doing, because it's too hard to accept that it doesn't have a cure. I imagine it makes people feel very helpless that there isn't a cure, because that's the part a lot of people get stuck on.

The thing that hit me when I finally took my pills at my birthday dinner was no one had ever asked. On the average summer day, I start taking medication at 8:30 am or 10:30 am. From there I take medication every two hours, no matter where I am. The number of people who potentially see me taking pills is exponentially higher than the number of people who see me getting in or out of a car with a handicapped placard. Yet I can't count the number of comments or looks I get over my handicapped tag. That number shouldn't be higher. Isn't there some law of averages? 

You know that feeling of being watched? Similarly, you know that feeling of walking into a room and all conversation stops, so you know you were being talked about? Well, call me paranoid if you want, but that's what happens. You can feel people staring, for half a second, and then diverting their eyes away. Only it's every stranger in the dining room at the same time. Conversations momentarily stop. If the waiter was on his way to my table he U-turns for the kitchen. 

For some reason this all hit me at my birthday dinner and I got really upset about it. I started ranting to Kevin about it. "Why do people ask about my handicapped pass but not my pills? Why does that happen? What is the difference? No one has ever come up to me and confronted me on taking my pills. No one has told me shame on me for taking my medicine. No one has ever asked me to justify my medication to them, though people feel entitled to ask that of my handicapped tag. And there's no way I just happen to encounter nosy, judgy people at the car but not anywhere else. No way. So what the fuck is up with that?"

And then I answered my own question, and the answer was even more upsetting to me. "Pills, in strangers' minds, are tangible proof that I'm really sick and it makes them feel awkward and intrusive to ask? Because it's real to them, that amount of medication is really real and I look too young to be this sick so they get uncomfortable. But the handicapped tag, I could just be some punk illegally using her mom or grandma's tag. Fuck that."

So, this is both a rant and I guess an repeat PSA like the old blog post I linked earlier. Think. Be kind. Stop judging what you don't know.

Today, just for right this moment, I'm going to use the faceless disconnect of the internet for mini-bravery, or at least not being ashamed. 

These are my pills (minus a few bottles). 

This is MY handicapped tag. My nighttime pill case is blocking the numbers so you don't steal it :)

And this is my inspiration today.

Spoon Theory

Please take the time to read this story. It has become the universal language of chronically ill people. The story below was written by a woman with Lupus, but it works for all of us. (I don't have Lupus, in case you're new to my blog.) We refer to ourselves as "spoonies" and through this brilliant story we are able to help our loved ones understand our struggle a little better.

As you get into the story please note that the author's experience is true for me. She talks about having to overthink and over-prepare for everything; this is how life is for me: I cannot just get dressed and go. I have to consider everything. I have to worry about the weather and which symptoms are flared up the most. I have to dress for that. My level of personal hygiene depends on how I am doing each day. I am a night showerer because showers take too much out of me--if I shower in the morning I can't do anything that day; if I showed at night I can collapse when I am finished. Is my bad foot swollen? Can I put a sock and shoe over it or do I have to wear some type of flat that is open on top. (This results in me wearing Sperry's to physical therapy and exercising in them.) Each day I look in the mirror to see if the bags under my eyes look like black eyes, and some days they do. Cold aggravates my symptoms terribly. Even in the summer, I bring a sweater everywhere, just in case. But at night I have to make sure the room is frigid because I get terrible, awful night sweats.

This is a state of existence that isn't normal for most people; even my husband forgets, at times, that I have to process life that way. My husband and I don't use the language of "spoons" day-to-day, but we are talking about the same thing. The author speaks about having to worry about doing too much today and borrowing spoons from tomorrow. When making plans, Kevin and I talk about how I'll be "dead" or "crashed" or "useless" the following day. And this is truly how we make plans: "Well, if we go to dinner with your parents after PT on Wednesday, I'll be dead Thursday, so we can't go shopping until Friday..." Recently I was overzealous in planning a three day stretch. Day 1 required walking more than I typically do in a whole week. The following day I had to take a morning shower (eek!), go to a doctor, and I had plans to go out and be social that evening. Day 3 included a morning appointment and dinner plans with my 91-year old grandmother & 90-year old great aunt. This is, for me, an impossible schedule. I don't know what I was thinking (that I was normal?) when I scheduled this, but I couldn't do it. I was completely dead by the end of day 1! But I had to keep going--both doctor's were appointments that I couldn't miss. After showering and dragging myself to my appointment on day 2 I crashed and couldn't go out that evening. I had to accept that in order to make my appointment on day 3, I had to stay in the night of day 2. I hate it, but that's my reality.

Despite hating some aspects of living this way, I agree with the author about the benefits: living with limited "spoons" forces you to prioritize. We don't waste time on unimportant things. The people we make time for are precious to us. We don't have the luxury of taking anything for granted. So enough of me relating to the story below. Please, please, please read it!   

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said, "Here you go, you have Lupus." She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons." But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said "No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons," but just think how hard tomorrow will be with less  "spoons." I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons," because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared."

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons."

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted "spoons" and I chose to spend this time with you."

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons."

© Christine Miserandino

CFIDS & HIV/AIDS; Makeup or You Look Sick

When I describe my illness as an "immune deficiency" people sometimes think I have HIV/AIDS. I understand why that confusion happens. But I've never been able to explain it, because I don't have HIV so I can't speak to what it's like.

I cried when I watched HBO's "The Normal Heart" back in May. The story is about HIV/AIDS in the 80's, but it felt like my story. Some of the symptoms are the same, but it was more than that. Their struggle to be recognized is mine. Their fight to get real research done is mine. Much like HIV/AIDS then, CFIDS is still--now--ignored by much of the medical community. The funding toward research is a joke. And many people do not take the disease or patients seriously. By the end of the movie I was enraged thinking of those similarities. Am I three decades away from seeing a movie about the journey of CFIDS sufferers?

Through my sad and angry tears, I was able to choke out, "It's not fair! They get to die at least; we have to live like this forever." I said that to Kevin privately and it wasn't a statement I thought I'd share widely. I don't mean to trivialize something so painful and shattering as AIDS. However, the sad truth is that I, along with millions of other chronically--but not terminally--ill people have learned one of life's deepest secrets. It is this: There are things worse than death. Death can be a reprieve from horrific, endless, incurable pain. Some diseases have the ability to strip every bit of "quality of life" away from a person, but leave them aware of being alive without really living. We fight and hope and pray and wish for cures. We try every experimental solution. We don't want to die; we want to actually live. But we know that if given a guarantee of life staying this way until an old age death or dying young from it, we wouldn't choose decades like this. Death isn't scary, living like this forever is. 

So why did I decide to tell you about that "it's not fair" statement, the one that I was so sure I wouldn't share publicly? I came across a few quotes from medical professionals qualified to compare HIV/AIDS, and just like that my feelings were validated...

"My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."

Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

"[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades."

Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University

http://cfsresearchcenter.org/index.php?option=com_k2&view=item&id=70:about-cfs&Itemid=721

Crazy, right? So yeah, it's kinda a big deal. It's pretty serious. Let's move on to Chronic Illness Cat and one of the classic spoonie-life struggles.

This is what some days look like:

But, why? Why does my face look like this? Why do I have black eyes? Why do I have a rash? Why is one eyes partially swollen shut? Whyyyyyyyyyyy?

(I woke up like this.....lol, Queen Bey.)

This is what I do to hide it, if I have the energy or give a damn, and it does result in the inevitable "why are you wearing so much make up?":

(You can still see the tired, but at least it's a little disguised.)

And this is humiliating and infuriating:

Oh btw...

The idea and motivation [to get over myself] to use a wheelchair came from this wonderful article: http://m.huffpost.com/us/entry/5548406

CFIDS in NYC

Dear friends who read my blog,

As part of my health care and my fight for disability I have started seeing a new specialist. CFIDS specialists are rare finds. When I was younger I had a doctor at Johns Hopkins. He is one of the leading researchers in the country and keeps remarkably busy trying to balance his research schedule with his treatment of patients. Since I stopped seeing him for a long period of time, I would be a new patient if I went back and he is not currently accepting new patients. As a result, I had to go on quite an adventure to find a new doctor.

I saw her yesterday. This is the text I sent out to update a few people on how it went:

"For starters I've officially been re-diagnosed with CFIDS (fucking duh). Every time I get a new doc that happens. So, it has been confirmed again. Still got it. (Conveniently I woke up looking and feeling like hell today: puffy black eye looking bags under my eyes, non-stop sniffling & stuffiness, and my left arm can't hold anything. It's like my body knew what was happening today and wanted to make sure I couldn't pass as healthy.)

The doctor is very kind. She certainly will be a good advocate for me with the disability fight. She ordered two tests that should help prove my case: one proves that I have that heart/fainting thing, one to disprove that I have MS. She took bloodwork, 7 vials. Mostly we discussed my history and what life has been like for me, health wise. I completed a few record release forms so she can get info from my other docs to finish putting together a comprehensive picture of my medical life. After the bloodwork comes in she may add a new medication to my cocktail. We will discuss where to go from here on August 11 after she returns from vacation and sees my bloodwork. She will try to accommodate my living in Virginia and do as much as possible over the phone.

It was crazy being in her clinic. It was a maze of junky rooms and files upon files. Over the 2 hours I was there at least 10 other patients, all women, were in and out getting blood drawn or getting some kind of IV treatment. I want IV treatment. I've never seen so many CFIDS patients. There's a whole community here. In NoVa there's a "support group" via email. And that unscrupulous doctor who doesn't take insurance and charges $800 per visit.

She had signs up for clinical trials and studies. I filled out some paperwork for one that wasn't advertised, but it was studying the cells and genetic make up of us patients. (They pay healthy people $100 to donate their blood for comparison.)"

So that's the latest update. Hopefully this is the beginning of some positivity and changes for the better. 

Catch My Pain: Making My Invisible Illness Visible

I have this amazing app on my phone. It's called "Catch My Pain" and it does exactly what it sounds like. It allows me to track my pain very easily. I shade the areas of my body that hurt with a range of colors, the darker the red the more pain, yellow is little pain. It lets me write notes about my pain or body during that time and it has a checklist of what type of pain I'm experiencing.

It's a free app, but you can buy an extra feature that allows you to give a range of emotion, stress, and fatigue. I just make those notations in the "notes" section rather than paying for it. This app also allows you to list all your medications and when you take them. You can set alarms for taking any or all of the medications. And best of all, you can send yourself a printable collection of the whole thing to take to doctors. Or you can just email your info to anyone you want. It's amazing. 

So I took a bunch of screen shots and decided to share them here. It's basically one week's worth of entries. I like this concept in that it will allow my invisible illness to become visible in a way. But, this is only one aspect of my invisible illness. So keep that in mind, this is just a glimpse into the invisible part of my life.

Also, you'll see a LOT of different areas with pain. Some is caused by TOS. Some is caused by CFIDS. And some is caused by CRPS. If for some reason you find it interesting to know which is which, feel free to ask.