Comparing Lockdown and Chronic Illness

How have you been feeling lately? Are you not doing as well as usual in the face of worldwide lockdowns from the COVID-19 pandemic? Is your life filled with new concerns and uncertainty with underlying anxiety? Doing a little too much symptom checking? Are you overwhelmed by the sense of isolation? Do you have a newfound fear of contagion? Has getting out of the house for grocery shopping become much more difficult than usual? Are you beset by a lack of energy, fatigue, and consequential boredom? You are going through aspects of daily living that are “normal” for many people with chronic illness. In this blog post I will compare similarities between COVID-19 lockdown and what has always been true in the lives of many chronically ill individuals.

Anxiety and Isolation

When comparing lockdown to chronic illness, even the most well adjusted person has probably suffered at least some anxiety since news first broke of the COVID-19 Corona Virus first spreading overseas. Maybe it started with predictions of a coming pandemic. That anxiety probably increased greatly as this prediction became true. Then lockdown was ordered from one county to another, one state to the next.

Comparing Lockdown and Chronic Illness; blog; Living with Myasthenia Gravis; COVID-19; anxiety
Anxiety is common for many during COVID-19 Lockdown

For many chronically ill people this feeling of unease, sensitivity, hyper awareness, and worry is a daily fact of life. Lifestyles become attuned to and adjusted around illness. Fears for ones own well being and safety can be a great source of anxiety. For some this anxiety becomes a personal lockdown order from their own psyche. Mingling with the outside world becomes intolerable due to the extreme effort needed and sense of risk this causes. This can be true, even when the individual might still long to be social. It’s just too hard.

When you are chronically ill, isolation is often a fact of life. For many, it’s a daily fact, even with no official lockdown order in place. In comparison to lockdown, isolation from chronic illness is a long term sentence, because there is often no end in sight. The isolation from being homebound is often compounded by a lack of visitors to homes of the chronically ill. While often not being in the work force, attending school regularly, or able to join in repeating social groups or community activities, we are often forgotten and overlooked. It often seems like a case of out of sight, out of mind.

Fear of Contagion

Since my diagnosis as a chronically ill person with Myasthenia Gravis, I have had to be aware of keeping away from people who have colds or are sick. This is another aspect to consider in comparing lockdown and chronic illness. Chronic illness worsens when exposed to new contagions. This is why the chronically ill are considered high risk individuals in the COVID-19 pandemic. Comparing COVID-19 lockdown to chronic illness, the general population has experienced a heightened fear of contagion that the chronically ill deal with daily.

Comparing Lockdown and Chronic Illness; blog; Living with Myasthenia Gravis; COVID-19 lockdown;
With new of virus spread, fear of contagion grows.

COVID-19 is especially tricky, because many carriers are asymptomatic. I’ve heard people confidently state that they don’t need to wear a mask, because they have no symptoms. This might have been advised at the onset of the virus spread, but current knowledge has changed. Each and every person who does not wear a mask in public risks infecting another person. This is what caused the need for lockdown in the first place.

Hypochondria

When all you hear every day is news about illness and its symptoms, it’s easy to start feeling ill yourself. As defined by the Oxford English Dictionary, hypochondria is an “abnormal anxiety about one’s health, especially with an unwarranted fear that one has a serious disease.” This is something I will call “hypochondria” in quotes, because in times like these worrying that you are sick is not so unusual. It’s not exactly the same thing, but a worry and sensation that heads in the same direction.

I liken this to when I was first diagnosed with Myasthenia Gravis, and I did not yet know my ebb and flow of symptoms, much less what the disease actually was. To tie in with the first paragraph’s anxiety and oversensitivity, every little physical change or hiccup was terrifying. I was having to educate myself about my disease, and I was sorting through a lot of information from both good and bad sources. A lot of things made me worry about getting worse that were actually nothing at all.

Comparing Lockdown and Chronic Illness; blog; Myasthenia Gravis; Coronavirus
We are all on edge about getting sick, which makes us feel bad.

I’ll compare that chronic illness newbie experience to what many are currently experiencing with the pandemic hitting the US right as Spring is arriving. I am certain that every allergy suffer has had to take a step back at least once to keep themselves from thinking pollen irritation is the beginning of a bout of COVID-19. Such anxiety is completely natural and understandable.

Uncertainty

A good deal of chronically ill individuals are on disability and fall prey to the whims of government policy for having income and coverage for necessary medical treatment. I compare this to the current pandemic population relying on the government to provide financial relief and also to have a system in place that insures sick people get the treatment they need. A great deal of the world is living in economic uncertainty during the pandemic.

When you are chronically ill, the only certainty is that there is no cure. That is a one to one comparison between chronic illness and COVID-19 at this writing. Chronically ill individuals will usually have fluctuating symptoms with some good days and some bad. In some diseases, remission (as is possible with my diagnosis – Myasthenia Gravis) can occur. Even in remission, you still have an underlying illness.

Living with the uncertainty of the type of day you’ll have symptomatically from one day to the next takes a lot of getting used to and accepting. That said, looking forward to the good days and not constantly dwelling on the downside is imperative. A proactive outlook during pandemic lockdown is also key. It’s kind of a glass half empty or half full conundrum. The COVID-19 pandemic has definitely changed our perspective, if only for the time being. It’s still best if we at least try to make the best of things.

Virtual Communication

I bet you are communicating via Zoom or Skype more than usual in lockdown. Virtual communication is always a must with chronically ill individuals as it is now to you in COVID-19 lockdown. From social contact, to support, to virtual doctor’s visits, the almost complete dependence on virtual communication that you are now feeling during lockdown is a way of life for many chronically ill individuals. Otherwise many are faced with a life in social isolation.

Comparing Lockdown and Chronic Illness; blog; Living with Myasthenia Gravis; COVID-19; Coronavirus; blog
Social Media is both a blessing and a curse during Lockdown.

There is a drawback to virtual communication, of course. When using social media, one must be increasingly wary of its affect on one’s mental health – especially in lockdown and true isolation. We all know about how difficult it is to navigate the field of “friends” on social media.

In addition to that obvious roller coster, fact checking is more important than ever, especially when relying on media sources for health advice. Even specific health forums and groups can be an unhealthy outlet. I can never say it enough, getting your mind away and off of illness is usually more curative than obsessing about possibly dicey information or being party to social drama in the guise of medical advice. A culture of illness is not always a good thing, even when approached in a fact finding sense.

Feelings of Uselessness

People under lockdown are feeling what it’s like to be ripped from a productive routine, which can be compared directly to the lives of the chronically ill. Most of us would probably like to help make things better somehow in the face of the pandemic, but how? That is how I feel at least one day a week in my normal life, and I am generally thought to have a good handle on the situation. Even though I create and promote art almost daily, and blog when I can (usually during IVIG treatment), the feeling can be almost overwhelming. Why am I even here now? What good am I to anyone? Will I be forgotten? Complete anxiety from isolation. The feeling of uselessness lurks constantly.

Comparing Lockdown to Chronic Illness; blog; Living with Myasthenia Gravis; COVID-19; Coronavirus; Melasdesign

Ironically, many chronically ill people are actually sailing along fairly unfazed during the pandemic. What the rest of the world is experiencing as new is the same old, same old for us.

Fatigue and Boredom

I’ve been hearing from almost everyone I know that they have been fatigued, or sleeping far more than usual in lockdown. This is often a response to stress and uncertainty. Chronic illness causes stress and uncertainty just like being in lockdown. Aside from that, some illnesses themselves and the medications that treat them can cause fatigue and sleepiness. One important way (for everyone) to battle this is to keep a schedule. The worst thing you can do is get your circadian rhythm mixed up – or have your days and nights reversed.

In closing, most people do not want to be as much of a homebody as the chronically ill person is forced to be. Combine the factors above, and it can boil into a helpless feeling, very bored person in lockdown. Most of us feed off of at least some contact with others for interaction and activity rather than choosing isolation.

Comparing Lockdown and Chronic Illness; blog; Living with Myasthenia Gravis; blog;
The gift of imagination that spurs on creativity rather than boredom.

A theme throughout my blog that I am now seeing over and over again on social media and in the news is that this is a fantastic time to start a hobby. A lot of folks fight boredom with television, but even it is facing a deficit with no sports on and no new material being filmed for shows and movies. Try something new. It IS possible. Look ahead. COVID-19 lockdown will most likely not last forever. Be good and stay home in the meantime.

Coronavirus and Myasthenia Gravis

This blog post is short and sweet. Is the Coronavirus still circulating and you have Myasthenia Gravis? If so, social distancing is imperative. It is an absolute MUST that you stay indoors at home, while also not inviting people in. Self-sequestering saves lives and lightens the load on your area’s health system. If you do venture out, be sure it is away from the public. Take advantage of any opportunity to have groceries and necessities delivered, or at the very least, travel along with someone to go shopping, but send them in with the list. The following post briefly explains how the virus and MG may interact while also suggesting some positive ways to get through this rather unusual and unfortunate epoch.

This blog post is short and sweet. Is the (Novel) Coronavirus still circulating and you have Myasthenia Gravis? If so, self-sequestering or at least social distancing is imperative. You are an immunocompromised high risk subject. It is an absolute MUST that you stay indoors at home, while also not inviting people in. Self-sequestering saves lives and lightens the load on your area’s health system. If you do venture out, be sure it is away from the mass public. You must practice social distancing. Take advantage of any opportunity to have groceries and necessities delivered, or at the very least, travel along with someone to go shopping, but send them in with the list. The following post briefly explains how the virus and MG may interact while also suggesting some positive ways to get through this rather unusual and unfortunate epoch.

As with any other virus, all-over Myasthenia Gravis symptoms may worsen. Even more concerning is the aspect that the virus is hardest on the respiratory system in any patient. In the virus’s worst cases, folks are having to be put on ventilators, with even that not helping in the end with a minor percentage in the overview of sufferers. Myasthenia Gravis can lead to the need for a respirator in Myasthenic Crisis, even when the lungs are free of mucous and viral activity. I can only imagine the strain that Coronavirus symptoms would put on an already weakened body already having a propensity towards failing lung strength from MG. Should you start having virus symptoms as a high risk individual, go see your doctor. Use a mask when cold or flu-like symptoms appear to keep contagions from spreading. Do all you can to keep that non-MG induced ickiness to yourself, and work on getting help.

For some people, self-sequestering seems like a terrible fate. My advice is the same as for folks who are mainly home based with Myasthenia Gravis (as I am). Get a hobby. Read a book. Call friends. Learn to cook. Truly, seriously with that one. Eating pre-prepped stuff out of boxes from the store really isn’t great for anyone’s health. Do that home project you’ve been putting off. Reorganize. Someone once said “If you’re bored, then you’re boring.” Don’t be boring. In my next blog post I go into an in depth comparison of how being chronically ill is similar to a life under lockdown. See if you agree.

Try not to rely on social media and questionable television as your means of breaking the monotony that inevitably arises when stuck at home to avoid catching Coronavirus on top of your Myasthenia Gravis diagnosis. As much as we all want to keep posted on developments locally and across the world concerning the virus, there’s still such a thing as only tuning in now and then. Stop. Center yourself. Look around at all you still do have, and hopefully the virus-free level of health you are still at. Follow the advice of the paragraph above and distract yourself. I’ve heard many healthcare workers say that people who obsess about the virus and all the news being constantly churned out about it are inevitably the people worse struck by illness. Fear and worry weaken the immune system, which would make any MG patient an even more high risk potential COVID-19 victim. Don’t add extra strain on your natural defenses by obsessing or becoming a victim of fear mongering.

The Truth About Being a “FALL RISK” with Myasthenia Gravis

I am a Myathenia Gravis patient reporting my inpatient experiences regarding misunderstandings and occasional inaction by medical staff when weakness symptoms suddenly developed with this “invisible disease.” I explore the realities of being a “FALL RISK” for those who have Myasthenia Gravis. Experiences which risked injury from falling and collapse occurred both in hospitalizations specifically for Myasthenia Gravis and for non-MG related inpatient stays.

An Invisible Disease

On good days, Myasthenia Gravis is an invisible disease. On strong days when ptosis is not out of hand and other facial and neck muscles are behaving, MG patients look like healthy individuals. We function as healthy individuals. Only a possible scar from a thymectomy serves as a visible sign that something might be amiss with our health. People even misinterpret the scar as being from a thyroid operation, rendering Myasthenia Gravis even more invisible.

Unfortunately this status of normalcy can change at a moment’s notice with little to no warning. The sudden development of weakness provides for true shock value to the average observer when our muscles cease to function on a day that has thus far been a strong one. Occasionally the MG patient might be met with disbelief that anything is actually wrong when sudden weakness sets in. Surely we’re faking! This disbelief can actually be dangerous for the myasthenic patient with this invisible disease. Although there are surely doubters in every walk of life, the group I will focus on here are medical professionals. To be even more specific, I write of misunderstandings with techs and nurses.

Photo by David Gavi on Unsplash

Fall Risk and Myasthenia Gravis

A year and a half ago I checked in to the hospital for emergency IVIG treatment. It was my first run-in with medical professionals who were more inclined to believe I was faking not being able to walk than they were inclined to actually help me with the problem. I alluded to the event briefly in my blog post “A Bit Too Close to Myasthenic Crisis.”

As appalling as it was to face plant (thankfully into a bed) as an unbelieving nurse looked on, I only wrote a word or two about it. As awful as it was there also to have techs apparently think that I was simply wanting attention (or ?????) in needing help to get to the bathroom for two entire days, I did not write about it. Surely that was just a terribly odd and unusual experience, despite the fact that during that stay I was actually hospitalized FOR Myasthenia Gravis treatment. I wrote it off as a fluke. I tried not to be overwhelmed with the grim reality that the healthcare workers caring for me did not recognize the ins and outs of the very illness that had hospitalized me.

Other minor run-ins occurred at outpatient private medical practices. Without the hospital hustle and bustle, doctors were close at hand to identify my stumbling and weakness more quickly. None of these incidents compare in severity to another in-patient experience I had earlier this month. This time I was inpatient at yet another hospital for a health issue unrelated to Myasthenia Gravis. The only indicator given that I had Myasthenia Gravis other than doctor’s notes was a yellow wrist band that said “FALL RISK.”

Unexpected Weakness

After several days of good mobility (with only so far to walk), I found myself slowly collapsing half-way down a hallway. At the head of the hall, I could walk fairly normally. Halfway to my destination I sensed my last successful step. Despite my yellow wristband “FALL RISK” status, I was provided no cane, but had managed until then. Now I awkwardly pressed my knees into each other to keep my legs from completely buckling. My hips and pelvic floor were painfully the only truly functional supporting muscles. A nurse standing nearby, buried in her chart, ignored my pleas for her attention.

via GIPHY

The first time I called out, she completely ignored me. After trying once again to move, it just wasn’t happening. I began to waver, and the pain of stressed hip area muscles was smarting. Once again, I called to the nurse saying “I don’t know your name, but please help. I can’t walk.” She dismissed me, saying she was busy. I would have waved my “FALL RISK” banded wrist around, but I knew such motion would result in imbalance and crashing. At this point my voice became more urgent and I begged for her to please help me – that I was collapsing. At this point, all of the patients present were looking on in rapt attention, forbidden to interact physically.

In behavioral health institutions, patients are forbidden from having any physical contact. All of my fellow patients wanted to help, but these things can be misinterpreted by staff. It was against the rules. I was also not allowed to have my cane, due to its status as a weapon thanks to its construction with a hard resin knob atop the wooden stick. This made my invisible disease even less obvious. I never managed to get a cane or wheelchair from the hospital. Such a thing is more difficult than it should be in physical health hospitals even. In a psych hospital it’s near on impossible.

Once my tone of voice and the audience grew, I finally got a smidgeon of the nurse’s attention. She came the few steps towards me and said, “Of course you can walk! Just move your leg.” By that point I was getting very angry and was in great pain from compensating for my leg weakness, but I knew that any show of negative emotion could be interpreted as aggression. As best as I could without actually falling over, I made a tiny hip motion as a pseudo attempt at taking step (which I decidedly could not manage). By this point I was straining my pelvic floor muscles. She then said “why do you think you can’t walk?”

via GIPHY

You must remember, I was in a MENTAL hospital. Of course, it was “all in my head.” Admittedly the nurse had not yet seen overt symptoms of my invisible disease. I replied that I have a neuro-muscular disease called Myasthenia Gravis. At this point my locked knees started giving way, and she still looked on in disbelief. Finally I broke the cardinal rule and called directly to the other patients for help. They immediately started running, having believed the situation all along, while looking on in horror at the nurse’s inaction. The “FALL RISK” wristband (even without knowledge of Myasthenia Gravis and the weakness it causes) said enough to alert them.

No Faking

Once the nurse saw their willingness to help, her eyes got big. The realization had finally hit that I was actually in trouble. She was then of zero practical use in helping, not even knowing how to offer proper support for me to walk once she actually deigned to offer a hand. Psych nurses apparently aren’t as directly trained in physical maladies as much as a physical nurses are.

Two patients helped in the end, and I managed to avoid any injuries from falling, but for strained pelvic floor muscles. I managed to get to a chair in a nearby room to finally collapse fully. The nurse then asked why in the world I would try to walk if I couldn’t. I declared that Mestinon (an oral medicine for Myasthenia Gravis) would help. She then simply declared that the nurse’s station was at the other end of the hall and walked off.

Last year there was another such hospitalization (don’t get me started about Easter and triggers) at a different hospital. During that stay I also unexpectedly collapsed in weakness from Myasthenia Gravis symptoms. I received prompt help in that case from a psych nurse nearby. A few months before that I collapsed at a private doctor’s office. The confused office staff helped me fairly quickly. It just shows that it’s a roll of the dice as to what type of staff you’ll get at any hospital or even doctor’s office.

Injury from Falling

One thing I have learned from collapsing from Myasthenia Gravis is to stay calm. Generally as long as I’ve stayed put afterwards, symptoms have not worsened any further. I always make sure I have Mestinon on me (which is not permitted in hospitals). As long as I haven’t been in a hot room or outside in sunlight, I’ve been fine after collapsing. I just accept that I shouldn’t try walking for a while. Nonetheless, falls can cause injury. That is why patients with Myasthenia Gravis are tagged as FALL RISKS. Once I got a concussion once, collapsing into the seat of a car. The short walk in a hot parking lot was too much. Another time I twisted my ankle while collapsing forwards towards a place to sit.

Yell for Help

I unfortunately don’t have a good answer as to how to prevent such misunderstandings. Misunderstandings are inevitable with this invisible disease – even when collapsing from weakness. One would just hope it wouldn’t be from medical professionals. Inform your nurses and techs of the FALL RISK when you meet them. When you’re sick in the hospital this is not always easy to do. Sadly it seems that there truly are enough patients purely seeking attention that there is often reason for healthcare workers to be skeptical. In hindsight, I wish I had just started screaming “HELP!” during the incident. In a setting that requires calm and quiet, this can be disruptive. I shouldn’t have had to resort to any of this, but in any type of hospital, medical workers often completely ignore wristbands.

Should I Get a Scar Tattoo?

Tattoos decorating scars are a bit trendy now. I sometimes dream of a tattoo with the words “Myasthenia Gravis” inked onto me in a suitably “street” font. My thymectomy scar would be the text’s baseline. Now I’m thinking getting the words “FALL RISK” might be more prudent.

Georgetown University Hospital MRI Music

Wondering about MRI noise level at Georgetown University Hospital? As of June 19, 2019 Georgetown University Hospital Radiology offers music during MRI tests via FM radio only. It is not possible to bring your own music. There is no iPod / Device hookup and no CD player. For tests that require your head to be still, no music is usually possible. The earphones that provide the FM radio sound are big enough that most patients cannot wear them due to space limitations. Together with headphones, the cushions used to immobilize the patient’s head for a clean scan cause uncomfortable crowding. I was not able to get this information on the hospital website or from the radiology department phone operator. I hope this might help other patients who are wondering about how to best handle a long scan. All that said, the hearing protection provided plus barrier cushions for head immobilization made my scan experience entirely bearable. For some reason, MRI noise at Georgetown for a lumbar spine scan was much louder than upper spine and brain. My MRI experiences at Inova Mount Vernon were much louder than my Georgetown University Hospital MRI experience. That might have been blamed on lesser hearing protection. Just a tidbit from a gal dealing with a somewhat rare disease and getting some other mighty odd stuff looked into. Be well and healthy, and have a good test with Georgetown University Hospital Radiology.

Caregiver Guidelines for Myasthenia Gravis

Interested in better caregiving for those with Myasthenia Gravis (or even yourself)? This disease is better not faced alone, and caregivers may not know what a diagnosed person is going through. It’s an invisible disease that is not very commonly known, so read on for my informative tips on Myasthenia Gravis care. The emphasis of this blog post is general advice in caring for someone with Myasthenia Gravis with minor to medium levels of symptoms written by someone who has the disease themself.

Interested in better caregiving for those with Myasthenia Gravis (or even yourself)? This disease is better not faced alone, and caregivers may not know what a diagnosed person is going through. It’s an invisible disease that is not very commonly known, so read on for my informative tips on Myasthenia Gravis care. The emphasis of this blog post is general advice in caring for someone with Myasthenia Gravis with minor to medium levels of symptoms written by someone who has the disease themself. Important note: If weakened breathing or dangerous symptoms are coming into play, go to the hospital.

Care Guidelines for MG Strength

Helping out with strength should be a “no brainer” for caregivers aiding someone who has Myasthenia Gravis. That said, I’ll present another side of the puzzle. The lucky MG sufferer will have many days where they have normal strength and truly do not need help with normal, or even strenuous activities. On such days, try to rely on them actually asking for help if they should feel strength waning and only start to help then. It can become very frustrating to have an overly enthusiastic caregiver actually take away the diagnosed person’s “ability” by not letting them do what they can, when they can.

Typical strength aids include setting up a home environments that can be clearly navigated with the addition of possible safety aids such as railings in the bath / shower. Be sure to keep important objects on easy to reach shelves, ideally at or below shoulder height of the MG patient. Chairs placed strategically in the home are important for days when distance walking isn’t possible. A chair in or near the kitchen is also a big help for breaks during cooking or even simply when brewing coffee or tea. Taking it easy is a good way to stave off symptoms. Resting is a must when symptomatic. An important caregiver guideline for myasthenia gravis patients is to watch that the person you’re helping out doesn’t too hard.

Diet, Strength, and Myasthenia Gravis

Moka Pot Joy by Susan Hicks - A celebration of coffee and caffeine from Myasthenia Gravis Caregiver Information blog post
Moka Pot Joy by Susan Hicks – Caffeine is reported to help improve Myasthenia Gravis symptoms.

When caring for someone with Myasthenia Gravis, diet is an aspect not commonly in the forefront of the mind as far as strength goes, but it can be an issue with MG. Here are some diet care guidelines for Myasthenia Gravis. On weaker days set up your grocery shopping list to avoid hard to chew and swallow foods like nuts and pork. Of course if swallowing is a current problem from MG weakness, Myasthenia Gravis caregiving including adhering to a new diet of pureed moist foods is necessary. As a caregiver, food should be cut as finely as possible, and consumed in small spoonfuls or bites. Liquids should be sipped slowly. One bit of Myasthenia Gravis advice in caregiving is to exercise patience with longer dining times.

Temperature Guidelines for Myasthenia Gravis

In my own experience having Myasthenia Gravis, the most sudden, surprising bad effects I’ve had have been caused by heat. Plain and simple. It is very important that someone with MG stay in a cool environment. Caregiver tip: seek out air conditioned environments. That is a hugely important guideline.

Personally, I start to suffer weak eyelids and fatigue in temperatures above 74 degrees. If I sit near enough to a hot lamp, my eyelids will simply start to close slowly, or at best droop slightly. Once on a day in the upper 80’s I thought I could get away with being outside long enough to pat some dogs and then sit on a bench for about 3 minutes. Imagine my surprise when I then collapsed getting into the arrived car, hitting my head on the side of the car roof. I ended up with a concussion. There was no warning that weakness was coming on, the collapse was so sudden. I had not followed my caregiver’s advice to stay inside until the car had arrived.

Made in the Shade

When outside on warm days, stay in the shade. Myasthenia Gravis care includes using cooling garb (gel pack neck wraps and even cooling jackets are best) in environments where air is warm-to-hot. Gel packs have a time limit on them and are still not as good as just being in a cool place, but they may give the diagnosed person a bit of freedom to get out and about. Drink iced liquids to keep body temperature down – water is best. These are all good items to have on hand in the car when traveling in warm climates. They serve as back-up cooling if a car breakdown occurs. Caregiver guideline for myasthenia gravis: Traveling as a Myasthenia Gravis patient can take planning and coordination.

Hot Hot Hot - Knife painting by Susan Hicks in Myasthenia Caregiver Guidelines to illustrate how heat influences Myasthenia Gravis symptoms
Hot Hot Hot by Susan Hicks – Painted as art therapy for Myasthenia Gravis

Air conditioning is a must have in the home of an MG sufferer. Myasthenia Gravis pro advice: Call and inform your electric company that the household should get priority for getting power restored after an outage for health reasons. They have a form that can be filled out. Indoor air conditioners are a good solution for back-up during possible heating / cooling failures in communities that do not allow window unit air conditioners. If looking for a rental apartment, try to get a unit with individual heating / cooling control, so that you can switch from heat to cool without waiting for a building-wide switchover. Let the management know the rental is housing someone needing this Myasthenia Gravis care.

Guidelines for Less Stress

I cannot emphasize this Myasthenia Gravis aggravating factor enough as a part of MG care. Stress and emotional upset plays a huge factor in causing MG weakness and appearance of symptoms. If you know someone with Myasthenia Gravis, be a Mensch and leave them in peace. That’s really the kindest thing you can do emotionally in caring for someone with Myasthenia Gravis. We all know what general stress is, but as a caregiver you should also be aware of emotional stress.

Caregivers themselves can unwittingly cause stress. If you are caring for someone with Myasthenia Gravis, don’t be a “helicopter” caregiver. The disease takes so much freedom away from the sufferer that any bit of freedom and wiggle room is welcome. Of course it’s awful watching someone you love or care for go through the grim aspects of the disease, but symptoms fluctuate. It’s possible to have a really bad day and then be stronger the next. Let a good day Myasthenia Gravis day be a good day. It does happen. That’s a kind guideline in MG caregiving, and allowing and maintaining hope is an important part of Myasthenia Gravis advice.

It's Chaos Be Kind T-shirt from Melasdesign on RedBubble
Myasthenia Gravis can feel like chaos. Always be kind and patient, with yourself and the person in your care. “It’s Chaos. Be Kind” by Susan Hicks.
Being Myasthenic Can Cause Stress

So stay calm and try to do a certain amount of riding out symptoms. For a newly diagnosed patient, it will take a while to recognize personal symptom patterns and causes. There’s new medicine to deal with too, and some are tricky beasts. Taking too much Mestinon can actually cause symptoms. Immediately upping Mestinon dosage with new symptoms is not necessarily the best way to go. Follow your doctor’s advice until you begin to recognize the ebb and flow of symptoms. Get in touch with your doctor if there is a trend for the worse. Try not to agonize about every change in symptoms. They may ricochet unpredictably from day to day and hour to hour. They also might not. You will learn to recognize when to worry and when not.

Doctors appointments can be very stressful for some MG patients. It is best if two people are at each neurologist appointment. This aids in understanding and can also act as moral support for the diagnosed patient. Another stressful aspect of neurology: What a neurologist counts as “strong” is not necessarily what normal “strong” is. In office visits, the emphasis is more on immediate weakness during testing. In the hospital, they probably won’t want to keep you inpatient beyond the time that a direct crisis emergency is being warded off. Other weakness is to be cared for at home, or out of hospital. Those are some hard facts of Myasthenia Gravis advice.

Caregivers should Respect Limitations

Respect the limitations of the Myasthenia Gravis patient. Another important Myasthenia Gravis caregiver guideline, especially for partners who are more active late in the day is to be patient with waning strength as the day goes on. In symptomatic phases, going out at night might not be the best idea.

Up Down Sideways - Art therapy for Myasthenia Gravis by Susan Hicks - Exploring limitations and care in those with Myasthenia Gravis
Bright cheerful colorful emoji shape abstract artwork with arrows and squiggles in tropical colors. – for sale on RedBubble in the Melasdesign shop.

Pay attention to medicine timing and help keep a regular schedule. In Myasthenia Gravis caregiving, when symptoms are bad, it’s easy for the diagnosed patient to lose track of time, or simply be a bit out of it, because they just don’t exactly feel perky. I always have my alarms for the day set the previous night on my cell phone, starting from my wake-up alarm time.

Long term caregivers should learn the person’s symptom patterns and sensitivities. Myasthenia Gravis care includes respecting limitations of the person you’re caring for. As a caregiver you shouldn’t be pushing them in a direction that might be disadvantageous.

That’s a wrap for my edition of caregiver guidelines regarding Myasthenia Gravis