The Spoon Theory written by Christine Miserandino

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 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

Get worse with activity and improve with rest Myasthenia Gravis September 30, 2015 Lussy williams

Myasthenia Gravis (MG) can affect any of the muscles that you control voluntarily. It can affect muscles of the face, hands, eyes, arms and legs and those muscles involved in chewing, swallowing and talking. Muscles that control breathing and neck movement also can be affected.

MG does not affect involuntary muscles such as the heart, smooth muscles of the gut, blood vessels, and uterus.

The hallmark of weakness related to MG is that is worsens with sustained activity of the involved muscle(s). Eye muscle weakness worsens with reading, and double vision may improve with a brief rest. When speech is affected, symptoms worsen with prolonged talking. Extremity weakness if often noticed when holding arms over the head. Drooping of the eyelids, neck weakness and other symptoms are usually worse at the end of the day.

Symptoms, which vary in type, severity and combination, may include:

• Drooping of one or both eyelids
• Double or blurred vision
• Weakness in arms, hands, fingers, neck, face or legs
• Difficulty in chewing, smiling, swallowing or talking
• Excessive fatigue in exercised muscle groups
• Shortness of breath, difficulty taking a deep breath or coughing

MG is often called the “snowflake disease” because it differs so much from person to person. The degree of muscle weakness and the muscles that are affected vary greatly from patient to patient and from time to time.

For most people, the first noticeable symptom is weakness of the eye muscles causing drooping eyelids or double vision. In others, difficulty in swallowing and slurred speech may be the first signs. The onset of the disease is usually gradual over weeks or months, but may be more sudden. Symptoms may come and go over time, and even resolve completely for months or longer. Symptoms often are not immediately recognized as MG, especially if they are subtle or variable.

Most individuals do not develop all of the symptoms of MG. In some patients weakness remains limited to the eyes for entire course of the disease. These patients have ocular MG. Most patients have generalized MG where symptoms also involve muscles besides the eyes. When muscles involving speech or swallowing are involved, this is sometimes called bulbar weakness.

MG symptoms differ somewhat for MG patients who test positive for MuSK antibodies. Most MuSK MG patients are women, and tend to have more severe symptoms. Researchers have found that this group of patients often require higher doses of prednisone, and tend to improve more with plasmapheresis than IVIg treatments.

The course of MG during pregnancy is hard to predict. For some women, symptoms worsen; in others symptoms stay the same or improve. Because MG increases risk during pregnancy and MG medications pose risks to an unborn child, a woman with MG should discuss pregnancy with her doctor in advance.

If a person’s ability to breathe, cough, or protect their airway becomes insufficient, it’s called a myasthenic crisis. These patients require prompt treatment, and may need mechanical breathing assistance in a hospital for a period of time until their strength improves. While most myasthenics never experience a crisis, those who have trouble swallowing and talking are the ones most likely also to have trouble breathing. Progressive warning signs that swallowing, talking, and breathing are becoming compromised should be addressed immediately.

Myasthenic CrisisAdded by Matthew M Hastings , last edited by Matthew M Hastings on Feb 01, 2012

Monitoring

• IF IN ANY DOUBT, GO SEE THE PATIENT!!!

• Monitor respiratory parameters every few hours.
  • NIF (it should be more negative than -30 in general)
  • Vital cap (concerning when <10-12 mg/kg)
  • Other ways to assess respiratory status
    • Quality of cough
    • Ability to count out loud in one breath
  • These are partially driven by patient effort, so use these in combination. No single number or sign can substitute for a good exam and your general impression.

Time to move to the ICU?

• If you are worried about the patient's respiratory status at all, get them to the ICU. Myasthenia gravis patients can crash quickly and without much warning!

• Do NOT rely on the O2 sat or ABG to predict a crash. This may not change until it is too late!

• Consider BiPAP in ICU to try to avoid need for intubation.
  

  Work-up

• Perform infectious work-up for every myasthenic crisis with:
  • Blood cultures
  • Urine cultures
  • CXR
• Consider non-contrast chest CT for thymoma

  Treatment

• Acetylcholinesterase Inhibitors
  • Pyridostigmine (Mestinon and Mestinon Timespan (extended release))
    • Symptomatic treatment only.
    • Unnecessary in intubated patients; in fact, increase secretions.
    • You can provide mestinon, but not mestinon timespan, via dobhoff
    • Conversion of PO pyridostigmine:IV pyridostigmine is 30:1
• Glycopyrrolate (Robinul) to decrease secretions
• Steroids
  • High dose steroids can initially cause worsening! But later can help suppress immune response.
  • If already intubated, start high dose steroids (prednisone 60 mg PO qAM or solu-medrol 500 mg IV qAM)
• IVIg
  • Used acutely in crisis or for maintenance
  • Typical load for MG
    • If old, renal insufficiency, or severe cardiac disease & hypertension: 0.5 gram/kg over 4 days
    • If young and no renal or cardiac disease: 1 gm/kg daily x 2 days
  • If the patient has known renal disease and you must use IVIg:
    • Use the lysine based Gammagard formulation
    • Avoid concurrent use of nephrotoxic medications
    • Avoid concurrent IV contrast
    • Aggressively hydrate the patient during IVIg treatments
• Plasmapheresis
  • Used acutely in crisis or for maintenance
  • QOD x 5 treatments, and then reevaluate for need for further series
  • See AIDP section for more information on apheresis.
• Other immunosuppressants for maintenance
  • Mycofenolate mofetil (Cellcept)
  • Azathioprine (Imuran)

Myasthenia Gravis Early Sings and Symptoms October 5, 2015 In category Womens Health

Myasthenia gravis (MG) weakens and fatigues the body’s voluntary muscles (those we can move at will). It doesn’t damage the musculature of the heart or the gastrointestinal tract.

Early in its course, MG tends to affect the muscles that control movement of the eyes and eyelids, causingocular weakness. Consequently, a partial paralysis of eye movements (ophthalmoparesis), double vision (diplopia) and droopy eyelids (ptosis) are usually among the first symptoms of MG.

Weakness and fatigue in the neck and jaw also can occur early in MG. This bulbar weakness — named for the nerves that originate from the bulblike part of the brainstem — can make it difficult to talk, chew, swallow and hold up the head.

Bulbar weakness tends to give speech a slurred, nasal quality. It also can lead to frequent choking spells, and make eating unpleasant and tiresome.

In generalized MG, weakness tends to spread sequentially from the face and neck to the upper limbs, the hands and then the lower limbs. It may become difficult to lift the arms over the head, rise from a sitting position, walk long distances, climb stairs or grip heavy objects.

In some cases, weakness may spread to muscles in the chest that control breathing.

Disease course

Weakness and fatigue in MG tend to fluctuate from day to day, and even during a single day. People with the disease are often strongest in the morning after a full night’s sleep and weakest in the evening.

Over a longer term, the symptoms of MG usually progress, reaching maximum or near-maximum severity within one to three years of onset in most people. In about 15 percent of people, the disease remains ocular, but in most it becomes oculobulbar or generalized. If the disease remains ocular for three years, it usually doesn’t become generalized.

Weakness serious enough to require full-time wheelchair use is not common in MG. Most people, when properly treated, find they can remain physically active.

Remission, a reversal of some or all symptoms, occurs in about 20 percent of people with MG. Usually, the remissions are temporary, with an average duration of five years, but some people experience more than one remission during their lifetime. A few people have experienced apparently permanent remissions, lasting more than 20 years.

Compared to adult-onset MG, juvenile MG tends to progress more slowly and has a higher incidence of remission. Historically, many children given diagnoses of juvenile MG turned out to have a congenital myasthenic syndrome.