Micro Documentary “You Don’t Look Sick to Me”

Hi All,

For my final project this semester I had to make a documentary that related to my blog. I choose to base my project off of the life of a chronically ill person, particularly focusing on the story of one person who lives with chronic pain. The link below will take you to my documentary. I tried to upload the video directly onto wordpress but I don’t have the right type of account for it. I hope you will take the time to see the work I produced and I am grateful to those of you who have supported me during this time.

Best,

Kimmi

Micro Documentary

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A Morning Like Any Other

Hi All!

This is an assignment from my Multimedia Composition class that is called a visual narrative. It is a story told through words and pictures. It is about a morning in my life. I hope you enjoy it 🙂

A Morning Like Any Other

“BEEP! BEEP! BEEP!” I open one eye and paw around until I find my cell phone that is on my night stand; it screeches like a banshee and blinking bright red numbers, that are almost screaming, read 5:00 am. I begin pushing buttons in vain as I have set the alarm up so that I have to put in a password to turn it off. Why did conscious me have to be so annoying? I finally manage to type in the password and make the noise stop. A new day has started and I begin to claw myself out of the fog that is my mind. I quickly run today’s intended events through my head as to wake up my brain in preparation. In reality the list is short since it is Monday, my “easy” day: Neurobiology at 8 am followed directly after by Immunology and then technically I can come home. Although, ideally I will also be able to check-in to my online English class and do some studying for my other science courses for the next day. Also, if all goes relatively well I can spend some time with my boyfriend or my friends before continuing on with the school week. Just thinking about my day seems to awaken the fibromyalgia that runs through my body. My muscles begin to tense at the thought of too many activities but I push those thoughts aside determined to keep on moving.

Fog Walking

I sit up, still with only one eye open, and stretch carefully as I don’t want to over exert my already sore muscles. I feel my morning migraine begin to creep in, slowly like a shadow it overtakes the left side of my head with a rhythmic pounding and then just as silently it starts moving towards the back of my head where it settles for the time being. I throw my feet over the side of the bed carelessly and I instantly regret the motion as my foot bumps into my dresser with a loud thud which instantly sends a shooting yet numbing pain into my foot. The noise wakes up my therapy dog, Teddy, and he glances up at me suspiciously with only a sliver of light highlighting my face. I apologize for waking up the royal dog, as I like to call him, and finally place my feet on the ground so that I can shuffle the short distance from my room to the bathroom.

migraine

I grab my cell phone and note the time; this whole ordeal has only taken a total of three minutes yet I feel exhausted. My body droops as I force myself into the cold hallway and I shiver as my bare feet touch the freezing tile that has been cooled by the open window. In a heroic attempt I turn on the bathroom light in one beat and turn it back off in the next. It was only a few milliseconds that I was exposed to the bright fluorescent lights but they have overwhelmed my eyes and my migraine has elevated. I stumble around the bathroom and tenderly massage my scalp as I turn on the shower and find the perfect ratio of hot to cold water. As the water falls I quickly brush my teeth and moisten my mouth in an effort to get rid of the dry mouth that is a result of my evening medications. I run my tongue over my teeth and feel satisfied with their cleanliness. I hesitantly and cautiously step into the warm stream of water that welcomes me into the best part of my morning routine. As the water cascades over my aching body, rushing to flood my senses, I feel uplifted by the sensation and I smile at the peace I feel when I can accomplish a simple task such as showering. Taking longer than necessary I go through my shower and finally step out, reluctantly, and wrap myself in the biggest towel I can find.

waterfall

I run back into my room fleeing the cold and dive under the covers, silently promising that I will only stay for five minutes before getting dressed. I have to laugh at myself because I’m not fooling anyone. Both my bed and I know that I will end up staying for a minimum of fifteen minutes as I rationalize that I can absolutely get dressed in only a few minutes. Finally I get out of my bed, sadly leaving the covers that have cocooned my lovingly, and start rummaging my drawers for clothes. After an eternity of searching I find some acceptable jeans, a top that is attractive yet not too tight that it is uncomfortable but most importantly is cotton and breathes well as my skin is quite sensitive. A short wrestling match ensues between my jeans and I but I come out victorious as the denim is finally on my body. I start to search for my shoes. I need something comfy yet cute. I reach for a pair of colorful converse… no, too tight for this day. Instead I settle for some flats that will be easy to slip on and off throughout the day. If I could I would wear my panda slippers but alas society frowns about that.

shoesWhen the chaos of getting dressed ends I am faced with my least favorite part of my morning routine. I avoid this part as much as possible because it is painful, it is frustrating, and it is interminable. I grab my hairbrush, a detangler, and some anti-frizz serum. Callously I impregnate my hair with as much detangler as it will accept and begin the treacherous task of running my brush through the tangles that drape themselves off of my head like a mess of vines. My scalp screams at the agony that it is enduring and the very follicles of my hair beg for mercy. As quickly as possible I detangle and run my brush until it can pass by smoothly. This small victory allows me to put some effort into moisturizing my hair with the serum that will make a valiant effort at keeping humidity out. I’m far too tired to even attempt an actual hair style so I settle for two clips pushing back my bangs and continue with the rest of my morning.

tangles

I sit down for breakfast which consists of a bowl of cereal with a side of pain medication. I swallow the pills quickly not even bothering to take them one at time but instead all at once. I finish breakfast and as I’m putting my dishes in the sink I glance at the clock. After everything I’ve gone through and it is only 6:15… I still have a whole day to live through. I have a day to look forward to though, a day in which I will pace myself but do as much as I can. I have another day and that’s enough for me.

breakfast

I will go through this day in pain, but I will also do so with a smile on my face because even though this last hour has been an eternity, I know that I am lucky to have made it this far. I persevered against the alarm clock, the dry mouth, the shower, getting dressed, a detangling, and even breakfast which is more than I can handle on many mornings. I will go on to my classes and learn about the complexity of the brain and the intricate wiring of our immune system. I will fill my head with what I love most, knowledge! I will see my family, boyfriend, and friends as they walk beside me through the pain, the struggles, the small victories, and the big triumphs. This morning has no sympathy for me and I don’t expect it to, instead I will keep moving forward, one minute at a time.

keep moving

Stress

Stress. What is it good for? Absolutely nothing. Okay, before I go on ripping off rock songs (badly I might add), let’s admit it, we all have stress. It is something we all have to deal with on a regular basis. Whether it be stress with family, friends, school, work, holidays, or anything else, that little thing called stress will weasel itself in and ruin everything. So how can I relate stress to chronic illnesses?! Oh well, I don’t want to get you too overwhelmed because honestly, I could go on for days, but I want to keep it short. Stress in the life of a chronic illness patient is something that initiates a cruel cycle. I can sometimes be a very visual person so let me first give you a visual that will allow me to better explain this terrible cycle. This is the cycle for my fibromyalgia.

Capture

So if we refer to the cycle above we can see how stress can just fuel itself based on the pain and then the fear of the pain. So stress becomes this detrimental third factor that has to be considered because if it isn’t managed then it can cause serious damage. How can we stop the cycle? Well we can’t. So that’s the wrong question. How do we manage the cycle? That’s a better question, I suppose. We manage the cycle by understanding our pains better. If we are worriers we learn which pains are worth worrying about. If we have had pain for a few days then we put time lines on them—if a pain lasts more than “x” amount of hours, days, or weeks then we will visit the doctor otherwise we will not worry. That will allow the cycle to be put on hold. If we are not sleeping then we will take steps in order to have better sleep—even if that means taking medicines that we don’t like (and trust me I hate extra medicines as much as the next person). Again, that puts the cycle on hold. It’s the little things that we need to do in order to put the cycle on hold. We can’t stop the cycle, we can only manage it. Sometimes we will fail at managing the stress cycle but when we are successful it will feel great.

Stress is a life annoyance. It is a life occurrence. We can’t avoid it. We can’t stop it. We can manage it. We can handle it. We can learn how to make it a part of life instead of letting it be our whole lives. With chronic pain we just have to make a bigger effort, but it is an effort that is worth it. Manage the cycle.

To Sleep or Not to Sleep…

Have you ever had a night where you couldn’t sleep very well? Have you ever had a week you couldn’t sleep very well? What about a month? Do I hear a year? If you have then I offer you my sympathy, and if you have not then I can honestly say I am extremely jealous. Sleep is such a beautiful prospect each night when I  lay down and go to bed, but unfortunately the reality is that I can’t sleep—not well anyways. The sad reality is that this is the case with many sufferers of fibromyalgia and each night is a battle. Now there are many reasons why a fibromyalgia patient may not get much rest at night and I could go on for days about the many reasons, but instead I would like to discuss something’s that I have been taught about sleeping with fibromyalgia.

There is a funny little phrase that my doctors like to throw around whenever I complain of lack of restful sleep: sleep hygiene. Sleep hygiene is a variety of things that can be established in order to have a nice and restoring sleep. Keep in mind that I practice every single item on this list but I still do not get fully restorative sleep, they are just tips that help at least clean up some aspects. This list and more tips can be found on the National Sleep Foundation website. (Their tips are in bold and my comments are below in normal font.)

  • Avoid napping during the day; it can disturb the normal pattern of sleep and wakefulness.
    • If you are a napper, and trust me I am, this one is particularly difficult. It’s hard enough getting through the day without sleeping much but when you are too tired to function a nap seems like the obvious remedy. Try to not nap but if you do I’ve been told to only nap for about twenty minutes or so if I need it, no longer.
  • Avoid stimulants such as caffeine, nicotine, and alcohol too close to bedtime. While alcohol is well known to speed the onset of sleep, it disrupts sleep in the second half as the body begins to metabolize the alcohol, causing arousal.
    • For me this one is easy because I don’t drink any caffeine (regularly) or alcohol (at all) but I know many people who cannot function without their morning cup(s) of coffee. I don’t drink coffee but I love tea and of course some teas have a lot of a caffeine, I learned my lesson the last time I had a caffeinated tea and came to the conclusion caffeine after 5 p.m. is a terrible idea. TERRIBLE. So try to avoid it the evening. As for alcohol I don’t know…
  • Exercise can promote good sleep. Vigorous exercise should be taken in the morning or late afternoon. A relaxing exercise, like yoga, can be done before bed to help initiate a restful night’s sleep.
    • The first thing I am supposed to do in the morning is go for a twenty minute walk because my doctors say that will help me wake up but also get my energy flowing so I don’t need a nap even if I am tired. Realistically, this only happens on days I have morning lectures. But I do have a regular exercise regime that is every day which is helpful. *Caution: Do not exercise too close to bed IF it causes a lot of pain, this will just cause you to lose more sleep*
  • Food can be disruptive right before sleep; stay away from large meals close to bedtime. Also dietary changes can cause sleep problems, if someone is struggling with a sleep problem, it’s not a good time to start experimenting with spicy dishes. And, remember, chocolate has caffeine.
    • I am always hungry before bed, always. But I’ve come to compromise my bedtime snack so it is not too heavy but adequately filling. I enjoy a glass of milk and a banana, it’s a great snack and is yummy, too! If that isn’t for you then a small bowl of cereal is always good too. I also enjoy a Greek yogurt with some granola. Yummy!
  • Ensure adequate exposure to natural light. This is particularly important for older people who may not venture outside as frequently as children and adults. Light exposure helps maintain a healthy sleep-wake cycle.
    • I am not one to sit outside and take some sun but I do try to get some time outside. This isn’t just for the sun for me though, I spend a lot of time in classes and science labs so being outside and getting fresh air is so nice. Do try to get some sun otherwise you end up like me and Vitamin D deficient which is not good either.
  • Establish a regular relaxing bedtime routine. Try to avoid emotionally upsetting conversations and activities before trying to go to sleep. Don’t dwell on, or bring your problems to bed.
    • This one is hard for anyone because stress likes to sneak up on you at all the wrong times. Try to leave all your worries at the door. This includes stressful phone conversations or emails.
  • Associate your bed with sleep. It’s not a good idea to use your bed to watch TV, listen to the radio, or read.
    • I find this one to be difficult too and I do tend to be flexible with this one. However, if that is the case with you too and you like to fall asleep with the TV here are my suggestions: watch a show you know well (I watch The Golden Girls), set the brightness level and sound level low, and set the TV to “sleep” within half an hour. Those little things help me a lot. Also, if you like to read before bed put a chair in your room, not a really comfy one or you’ll sleep there which is worse, and sit there to read. When you feel adequately tired then try to get in bed to sleep, if within 20-30 minutes you cannot sleep then try again, don’t stay in bed for longer than that if you’re just lying there.
  • Make sure that the sleep environment is pleasant and relaxing. The bed should be comfortable, the room should not be too hot or cold, or too bright.
    • This one is key in my life. I have very heavy curtains so that there is no light in my room before I’m ready for it and it doesn’t wake me up. I hate, I mean really hate, if my room is hot. My home doesn’t have air conditioning so I have a big fan that serves two purposes. 1) Cools me and the room down which makes me get cozy in bed. 2) It provides with nice neutral white noise which is very relaxing and highly suggested.

I know that list is extensive and I don’t know how much of it will help you or not. However, I would give them a chance for a few weeks at least and of course find your compromises like I have. Also, look up more tips which could be helpful for you! I hope you have at least a few happy hours of sleep and if you have any other tips then please let me know!

Happy Dreaming 🙂

“You Don’t Look Sick To Me”

This week I would like to focus on a situation that plagues many people with disabilities.

Last Sunday when my mom got out from church she found a note that said: “You don’t look handicapped to me!” This was in reference to the fact the she has handicapped plates and parked in a handicap parking space. But here is what they don’t know: 1) My mom had an accident that destroyed her lower back and nerves that left her without walking, at all, for four years; 2) My mom almost died in a three part neurological implantation surgery that took place over a month; 3) My mom has had and continues to have extensive physical therapy that is helping her regain her balance, her ability to walk, and ability to control her movements; and finally 4) In the last year my mom was able to finally get rid of her cane that she used for so long. Here is what they do know: 1) My mom is young woman who goes to church every Sunday to do the translation for the Spanish ministry; 2) My mom walks without a cane, walker, and does not sit in a wheelchair; 3) My mom dresses like a young vital woman, wearing beautiful clothing, wears make-up, and always smells of sweet perfume. And 4) She talks to people and laughs with them never letting on about her pain. Alright, here is what I know: 1) My mom is in extreme pain all day, every day, there is no vacation from this pain; 2) My mom has days were she can’t sit, stand, or lay down comfortably because of the pain level; 3) I have days where I have to help my mom get dressed and tie her shoes because she can’t bend down or she can’t move anything below her waist; and 4) I have watched over the last seven years as the most vital and energetic woman become broken down by a disability that has overtaken her life in a way that I can’t imagine. But no, she doesn’t look handicap to some people.

Now I know what these people meant, but honestly I find it to be pure ignorance. So I ask you: What does a handicap look like? Let’s be truthful, they don’t look like any one thing. They look like the girl with Down’s Syndrome who you see at the store, they look like the blind man who crosses the street cautiously, they look like the girl in your 9 am lecture who sits in a wheel chair, and maybe, just maybe, they look just like you. As a person with fibromyalgia and chronic migraines, I know what it felt like to be my mom in that moment when she got that note. I’ve been told the same thing, the same notes have been left on my windshield, and I’ve even had family ask me if I wasn’t making it all up. The feeling is awful and makes you feel smaller than a bug on a leaf. Believe me when I say, I would rather be as “normal and average” as I look but the truth is I’m not. There is so much more to me, but there is also unimaginable pain in my life and it is debilitating. I have days when I look handicapped or sick (refer to picture below) and I have days were I am the peppiest and giggliest person in the world. I don’t have to look sick to be sick. So next time you question a person who is claiming to be handicapped but doesn’t look it, remember you cannot see the whole story with one glance.

So tired of being sick and tired…

The last two weeks have been particularly hard on me when it has come to people. I’ve met new people who have never heard or dealt with fibromyalgia so I’m their first experience. Now, that isn’t a bad thing but I do get frustrated when they ask questions that are of no help to others. My favorite this week was: “Why don’t you get to bed earlier to get more rest that way you can have a regular day the next day?” If only it were that simple…

Do you have those days where getting out of bed is a chore in itself? Oh boy, I do! I have days where rolling over to turn off my alarm seems like too much to bare and that I may just die if I’m forced to get out of bed. What about that week when you have the flu and are stuck in bed for the week? Then by day three we are so tired of being in bed we are dreaming of the days filled with work and school. Well, if you can remember your feeling during these two types of days/weeks then you now know a bit more about what it is like to live with fibromyalgia.

A person who suffers from fibromyalgia often lives in this constant loop of being so tired and in so much pain that there is no desire to get out of bed; however, this loop also is mixed with days that they are so tired of being tired that they don’t want to be in bed. Wait, what? Yes, fibromyalgia sufferers do not want to be in bed all the time, they do not want to be sick all the time, and they are not being lazy all the time. The truth is, as far as I go, I prefer the days were my pain is minimal (that being said, my minimal level of pain tends to be around a 5, but I take what I get :)) so I can go out and do more. I prefer the days when I can sit through a lecture without feeling a cramp every two seconds and I love the ideas of waking up and getting out of bed without snoozing the alarm twice. The days where I literally rollover turn off the alarm and keep on sleeping are the worst for me, because I feel as if I’ve just lost a day. I can’t help it though and no I can’t just get over it and force myself. I spend my life forcing myself to do things that cause me pain or make me feel sick, so there are days where I just can’t do it. I take sick days just like everyone else, and the worst are when I’m forced to take a sick week. They aren’t fun or relaxing, they are miserable.

Living with fibromyalgia is like living with a constant flu (and worse), which as most of you may know is not fun at all. I know that you can’t imagine living with the flu for more than a week and you’re lucky that you don’t have to. But please, next time you encounter someone who is dealing with a chronic illness, don’t assume you know their whole story, instead take the time to get to know them. We aren’t lazy; we are just sick and tired of being sick and tired.

Fibro-ma-what?

“Fibro-ma-what?” That was usually the first reaction I would get when I told people I had fibromyalgia, but that is the response of the past. The response of the present isn’t much better, “Oh I’ve seen that on a commercial.” Many fibromyalgia sufferers become tired with these responses but in reality it’s not entirely the public’s fault that they do not know what this long word means. The full name of this condition is “Fibromyalgia Syndrome” as it is not considered to be a health condition that only involves one symptom. To begin defining fibromyalgia I would like to express that this condition cannot be simply defined by words because more than anything it is a feeling. This feeling is characterized by chronic widespread pain, sleepless nights, anxiety, fatigue, depression, and that is to just name a few symptoms. If we were to dissect each of the symptoms that arise as a part of fibromyalgia then we would be here all day, so instead I would like to focus on the biggest symptom of all: chronic widespread pain.

While fibromyalgia is still rare, only affecting 2% of the world’s population, a study in Health Tips Colorado Magazine from 2012 shows that 15% of rheumatology patients are diagnosed with fibromyalgia. There is no blood test, imaging, or anything else that can detect fibromyalgia; therefore, it is typically diagnosed based on specific symptoms along with the tender points. There are 18 tender points (or nine pairs) along a patient’s body. If a patient has sensitivity in 11 of those tender points then the doctor will typically examine other parts of the patient’s life to make a diagnosis. This process of diagnosis can be extensive because in many cases doctors like to rule out all other conditions through more conclusive tests but when all those tests come back negative it’s hard to look anywhere other than fibromyalgia.

Now back to the pain. Studies have shown that patients with fibromyalgia experience pain due to central sensitization, an abnormality in the central nervous system. This means that the pain isn’t limited to one area or only the areas of the tender points but instead is spread over the entire body and the sensory impulses are intensified at the level of the spinal cord. Although many patients will say that the pain is in the muscles, there are also many who report pain in their joints as well. Fibromyalgia pain can be affected by environmental factors such as temperature, humidity, dryness, noise levels, sleep hygiene, basically anything that can overload any of the five senses. For some patients heat can make their fibromyalgia feel a little better, while others (like me) detest the heat and feel worse as soon as temperature rises. It’s these everyday aspects that can really affect a patient with fibromyalgia. Another factor that most don’t take into consideration is stress. A person with fibromyalgia that has high stress levels experiences higher pain levels than a person who is in a comfortable stress neutral environment. I could go on for days on the factors that affect fibromyaliga because there are just too many. Also since here are endless triggers that are unique to each person about what affects their fibromyalgia symptoms it is tough to cover it all in one post so I will try to incorporate some of mine and that of others through out the blog as to not overwhelm with one post. However, there is one symptom that is universal and something that all fibromyalgia patients can say is: “I hurt everywhere.”