So WordPress has this e-book that has 365 post ideas – I believe that it might be a fun thing to try to do one every day. Now I might not get to one every day, because like I said I am trying to be present in my life. BUT, I might be able to write down in my journal, and then post about it later and do one or two at a time depending on their length. Plus I will still be putting in my reviews, crafts, camping, cooking and life stories in here and there as well. But I feel like to really connect and share with you guys, I need to dig deep, and I hope that maybe this e-book will help me do that. And I don’t have to do each and every one – but – its nice to set a goal and attempt to meet it.
So – starting Jan 1st – I will do my first post from the e-book:
“365 Days of Writing Prompts” A prompt to fire your imagination, each and every day
for a year…
Enjoy this year-long collection of writing prompts geared to
get you writing each and every day. We made them for you,
Check out The Daily Post for writing inspiration, tips and
techniques on making blogging a habit, and how to nurture
your audience and grow your traffic. You can even get some
friendly moral support from the blogging community.
– The Editors, WordPress.com
I hope you all had a Happy Christmas – and I hope you have a blessed New Years!
The 22nd of Dec was my 4th year anniv of being in Al-anaon. For those of you who don’t know what that is, it is a recovery group for those of us who love or are close to an alcoholic or an addict. For me it’s my husband. He has 4 and a half years of sobriety and I have also been sober for 4 years with him, it was easy for me to give up any and all alcohol, it was nothing but a migraine trigger for me anyways. I never really drank that much, never could because I had to take care of him. But I never much cared for it anyways, it made me throw up and gave me a blinding headache before I even really felt a buzz. So I can’t say I miss it one bit.
I am thankful for AA and Al-anon, for they gave us a safe place to share our feelings, a place that showed us we were not alone. A place that was full of love, faith, HOPE, guidance, prayers, FRIENDSHIPS and kinship. They had all been through what we were going through, they had all walked in our shoes at some point, some had even gone a little further or had it a little worse off, or hit there bottom a little lower – we even had some friends die while in the program and it just showed us that sometimes rock bottom for someone was death.
My brother-in-laws death still is something that feels like a bad dream, like we will wake up and he will still be here, but it was his poor choices that took him from us. HE made those choices and no one could talk him out of them. I thank God everyday that my husband is still with me, I can be thankful, I can be kind, I can give to others.
But enough about that – I have a whole other blog dedicated to that subject and you can hear all about it there if you like : https://chipinmyheart.wordpress.com/
I am taking the rest of the time off till the 1st when you will get my first post of the new year – till then – Be well, Be blessed, BE YOU!! Wishing Peace, Love and VW’s!
The Spoon Theory
by Christine Miserandino http://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 your self 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
I’ve been thinking a lot about why stigma is so insidious and what we can do about it. A big part of the problem is in the way that everyone talks about Migraine. The way we talk about Migraine influences how we and others view the disease and we’ve been doing it incorrectly.
We talk about Migraine as if it is something that comes and goes, like a headache. We’re all guilty of saying things like…
“I’m getting a migraine.”
“The migraine is over now.”
“My migraines last for days.”
“Bright lights trigger my migraines.”
“How can I stop a migraine?”
“I’m getting too many migraines.”
These statements leave the impression that Migraine is periodic problem. People assume that when we are “migraine-free” we are as healthy as anyone else. Yet we all know this isn’t true. Migraine is a genetic neurobiological disorder with no cure. It never goes away. Yet we talk about it like it has a beginning and an end. There may be a lucky few who are able to achieve remission by controlling trigger exposure or through preventive medication. Yet the fact remains that Migraine is always present. To refer to the episodes of pain, light and sound sensitivity, nausea, and cognitive problems as “a migraine” simply isn’t correct. There is no such thing as “a migraine”. Patients with Migraine disease experience episodes during which they experience the four phases of an acute attack.
Let’s look at this idea another way. We wouldn’t say someone with diabetes is “having a diabetes” when their blood glucose is too high. And we’d never refer to a seizure as “an epilepsy”. We’d say, “That person has epilepsy so they will have seizures sometimes.” Someone with cardiovascular disease can have a “heart attack” but we don’t call it “a cardiovascular”. By calling our periodic attacks “a migraine” we perpetuate the stigma that harms us all. Our disease will never be taken seriously if we can’t even describe it accurately.
This is an example of how I explain Migraine to people:
“I have Migraine disease. That means that periodically I experience episodes called ‘migraine attacks’ (or ‘attacks’ for short). During these attacks, I have trouble tolerating sensory input because all my senses are heightened to the point that touch, sound, light, and smells are painful. I have difficulty comprehending and communicating. My speech may be garbled or I might forget common words. My reflexes slow down, so it is not safe for me to drive or operate heavy machinery. Sometimes I get blind spots, blurred vision, flashing lights, or zig-zag lines in my vision that are called auras. I also experience excruciating headache pain on one side of my head. Any movement makes it worse. Sometimes I get dizzy, feel nauseous, and even vomit. All of these symptoms are part of the “attack”. Attacks come and go. I have medicine that limits their frequency and other medicine that helps to shorten the attack. They can be as brief as 4 hours or go on for days. Because I have this genetic disease, I must be careful to avoid the things that set off attacks. These are called ‘triggers.’ Triggers can be almost anything from a change in weather, to bright or flashing lights, loud noises, strong smells, and often ingredients in food or drink. When I make a request of you, I’m not trying to be a ‘party pooper’. I really do need to avoid trigger exposure if I am going to feel well enough to join in the fun.”
When I started explaining Migraine in this way, I discovered that people took me a lot more seriously. They understood and accepted that this type of condition could easily disable someone to the point they could not work. The way we speak about Migraine does affect how we and other migraineurs are treated.
So let’s review…
- Migraine is the genetic neurological disease that makes a patient prone to episodes or attacks.
- Attacks include the four phases we experience: prodrome, aura, headache, and postdrome.
- Triggers are the things in our environment that can set off an attack.
We need to adjust our vocabulary so that others will better understand and empathize with us.
|Instead of saying…||Try saying…|
|“I’m getting a migraine.”||“A migraine attack is starting.”|
|“The migraine is going away.”||“The attack is almost over.”|
|“______(trigger) gives me migraines.”||“_______(trigger) will set off an attack.”|
It is going to take a lot of time for all of us (including our doctors) to change the way we talk about Migraine and its episodic attacks. It will feel awkward for a time. But it is essential that we change our terminology so that the general public has a better understanding of what it means to have Migraine disease. By changing the way we talk about Migraine, people will learn:
- Migraine is a disease that is lifelong and incurable. Remission is possible for a limited few, but many people never recover. There is a subset of patients who experience attacks every single day for years without relief.
- It is characterized by periodic episodes of moderate-to-severe one-sided headache accompanied by hypersensitivity to light, sound, smell, and touch.
- It can also include nausea, vomiting, dizziness, vertigo, garbled speech, an inability to communicate verbally, and one-side reversible paralysis.
- Patients experiencing an attack have slower reflexes and difficulty with cognitive functioning. They should not drive or operate heavy machinery during an attack. Nor should they be expected to perform tasks that require concentration, focus, communication, or critical thinking.
- Just before, during, and after an attack, patients may experience mood swings, cry easily, or become irritable. This is because brain chemistry is seriously altered at the start of every attack. It can take hours or days for the brain to normalize again.
- Patients with Migraine disease are at greater risk of developing cardiovascular disease. If they have Migraine with aura, they are at increased risk of stroke. Women who continue to experience attacks after menopause have double the risk of developing Parkinsons.
- Patients with Migraine often experience comorbid conditions (occur at the same time) such as Depression, Anxiety, Sleep Apnea, Fibromyalgia, and many more.
- Intelligent, average people have Migraine disease. It is not a mental illness or moral failure. It is not caused by lifestyle choices. Patients with Migraine disease are born with it. They didn’t choose to have this disease and would get rid of it if they could. Many must take dozens of different medications in order to manage this disease. Rarely are the medicines they take addicting. However, they do have side effects such as weight gain, cognitive slowing, digestive problems, etc.
Help fight stigma by accurately speaking about Migraine disease and its characteristic attacks.
January is Ambition Month at Crowdtap! Snap a pic demonstrating your 2015 Ambition & how you plan to achieve your goal to enter to win a “Sweet Success” gift set!
So – my “ambition” this year is to whip my butt into shape. I want to eat right, get motivated to start working out (and not to get all buff, but drop some wt and build up some endurance) and get to a better WT. I have been in pain for many, MANY years – between migraines, bad back, bad knees and various other injuries – I have not had the motivation or desire to walk, bike, do yoga or palates. And I love all of them.
So I wear “athletic” shoe to work (dr’s note) and plan on doing some walking…already park at the back of the lot to make sure I have to walk a ways – but need to start taking the stairs. Also need to start walking on my breaks. I already pack my lunch, but need to make sure that I don’t over pack, so I can’t over snack. I LOVE food so I am going to have to really be dedicated to this.
Here is my picture for today: (and I know you are tired of seeing my slow cooker, but get over it – it’s so darn pretty!)