HELP is a four-letter word with invisible illness.

Living with an invisible illness (such as multiple sclerosis, fibromyalgia, lupus, Crohn’s, chronic fatigue, or any of the variety of others) takes guts. Those of us who battle such conditions daily often seem to have a certain amount of independent spirit and spunk. That’s important, as it keeps us fighting.

 

But it also makes it tougher for us to ask for help, even when we need it.

 Consider a holiday like Thanksgiving, for example. Have you ever tried hosting a large family gathering, only to find the angry hidden beast of invisible illness attacks in a frenzy, sapping energy and making even routine daily tasks a whole lot harder?

 Maybe we’ve all been there.

 Or perhaps the occasion isn’t marked by a full-scale exacerbation, and we feel pretty good. So we do and overdo. We work and overwork. We keep going and going and going.

 

Eventually we run out of gas, even if it’s the next day.

 Again we chastise ourselves, “Why didn’t I ask for help?”

 And we know it’s because “help” is a four-letter word with invisible illness. We are reluctant to enlist assistance. We may even reject help when it’s offered, claiming we can do it ourselves. We might have pleaded for help before and been denied, so we’ve stopped asking.

 

Color me thankful today.

 A few members of my own family have really clued in lately, especially in the past year or so. After a long time of relatively smooth sailing (as far as MS is concerned), I started experiencing a ramping up of some difficult symptoms. My energy and activity levels dropped dramatically. Like any other invisible illness battler, I wanted to keep on doing life in all the ways I always had.

 For years, I’d been like the Little Red Hen in the well-known children’s story, offering to do it all myself.

 But how refreshing it was to find these special people stepping in and stepping up. This year, they insisted on coming over and cooking Thanksgiving dinner – right in my house. Sure, I did some assisting, but they did all of the heavy lifting, proverbially and practically speaking. It was amazing, and we all had a blast, sharing my little kitchen to pull the whole thing together.

 Maybe I should have invited such help long before now. But you know, “help” is a four-letter word with invisible illness. We hate to ask.

 

Related items:

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• Hold on! Having MS, I'm thankful for ...
• How do you manage MS for the holiday season?
• Learning to plan down-days
• Mama’s not faking … or bellyaching.
• Should you tell people you have MS?
• What if a spouse urges an MSer to file for disability?
• Who goes with you to your MS appointments?

 

Image/s:  Adapted from public domain image. Word cloud generated by this user.

 

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What is it with MS and sleep apnea?

 

Sleep can be a common concern among those with multiple sclerosis. Possibly up to 60 percent of MSers struggle with some sort of sleep disturbance. Sleep apnea is a frequent contributor to this issue.

 

What is sleep apnea?

 This is a condition that causes a person’s breathing to stop and start unpredictably during sleep. During those intervals (which may last for several seconds or more), the body is deprived of ample oxygen. An individual may gasp and awaken, or slightly stir and resume breathing. Each time this happens, it’s called an apnea, and it can occur many times each hour throughout the night.

 Experts say approximately one in five American adults may suffer from sleep apnea, although many may not be aware they have it. (Often, it's identified after a sleeping partner complains enough about intense and sudden spurts of snoring that a person seeks medical advice for it.)

 

What are the symptoms of sleep apnea?

 People with sleep apnea find themselves extra tired during the day. They might wake up with frequent dry mouths and nagging morning headaches.

 

What are the risks of sleep apnea?

 Untreated sleep apnea can be deadly, or at least add to potentially fatal conditions. Some researchers claim it can take as much as 10 years off a person’s life, largely because it increases a person’s vulnerability to high blood pressure, strokes, and heart attacks. (This has something to do with decreased blood oxygen levels that occur during each apnea episode.)

 

How does sleep apnea play into MS?

 Specialists have identified two types of apnea.

1.  Obstructive apnea occurs when the muscles in a person’s throat and nose relax (usually during sleep), blocking the airway and stopping breathing momentarily. This is the type that is commonly associated with loud, sputtering snoring and most often with obesity. Smoking is a risk factor as well.
2. Central apnea occurs when the brain fails to direct the body to breathe for a short interval. This may be more of a neurological issue. (That concept sounds familiar to anyone with MS and how it can pay tricks on all sorts of body part and functions.)

 MSers are widely regarded to be at higher risk for both kinds of apnea. Neuroscientists have pointed to reduced brainstem function issues as possible reasons for this, such as may be caused by demyelinating lesions that may be caused by MS over time.

 Whether obstructive apnea, central apnea, or some combination of both, this sleep disorder wreaks havoc when it strikes someone living with MS. Even without MS, sleep apnea tends to make people extremely sleepy all day long, due to the diminishing of quality sleep overnight. MSers already face bouts of (or ongoing struggles with) a crushing fatigue that is nearly indescribable.

 When sleep apnea prevents quality sleep, it considerably complicates this battle. The lack of rest can also aggravate memory loss, increase accident risks, lead to depression, and worsen diabetic symptoms (for MSers with that comorbidity).

 Certain medications frequently used to alleviate MS symptoms may make sleep apnea worse. These include those prescribed for insomnia, pain, spasticity, and more.

 

What can be done about sleep apnea?

 Once sleep apnea has been diagnosed (usually through an at-home of in-lab overnight sleep study, ordered by a neurologist or other physician), the patient will likely be prescribed treatment using a CPAP (continuous positive airway pressure) machine. This regulates breathing during sleep, piping humidified air into the person’s airway via a special mask. In many cases, sleep apnea may also be lessened somewhat when a person stops sleeping on his or her back.

 It can take time and practice to adjust to CPAP treatment, especially the wearing and breathing through the mask while sleeping. (Trust me. It can take weeks or even months to get used to it!) But this adaptation has been shown to reduce sleep apnea episodes (as well as their duration), and eventually to improve restorative sleep and rest.

 That’s worth plenty to an MSer.

 

 Related items:

• 15 things never to say to anyone with multiple sclerosis
• Got up. Got dressed. And got back in bed.
• Learning to plan down-days
• MS comorbidities: Welcome to the party!
• MS has made me more body-conscious.
• The perfect storm can bring on an MS maelstrom
• Thermostat wars and MS

 

Image/s:  Public domain photo

 

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MS comorbidities: Welcome to the party!

 Multiple sclerosis is a wacky disease. Ask anyone battling it. The constellation of possible MS symptoms is baffling to contemplate. Experientially, MS brings a host of surprises, as the MSer’s body seems to betray him or her in all sorts of surprising (and seemingly unrelated) ways. 

 

 Vision disturbances can crop up. A limb may go numb for a while or longer. Incontinence may sink in. Spasticity might strike. Walking can become difficult. Vertigo could stop by for a spin. Fatigue might suddenly become overwhelming.

Once diagnosed, we find it’s easy to blame all sorts of health complaints on MS. On the other hand, MSers can be prone to several other illnesses and complications. That’s called comorbidity.

 

What are the most frequently found comorbidities with MS?

Here’s a garden variety:

• anxiety
• arthritis
• asthmatic bronchitis
• cardiovascular disease
• chronic lung disease
• cognitive/memory issues
• deep vein thrombosis
• depression
• diabetes
• high cholesterol
• inflammatory bowel disease
• migraines
  
• obesity
• psoriasis
• sleep issues
• stroke
• thyroid disorders
• urinary tract infections
• and more.

 In many instances, medical experts aren’t altogether sure whether MS causes a certain comorbidity or vice-versa. For example, MS can cause a person to live a more sedentary lifestyle, which could lead to (or aggravate) blood pressure issues, diabetes, heart or lung disease, obesity, and other ailments.

 Additionally, comorbidities may arise together, perhaps randomly. And lots of medical conditions share symptoms, so it may be difficult to pinpoint whether a symptom stems from MS or from an existing comorbidity. 

Comorbidities can also delay and complicate a person’s initial diagnosis of MS, as symptoms of other conditions may mask MS’ appearance. They can also make MS treatment more difficult to manage and may even set the stage for MS to progress faster in some patients.

 It’s a crazy world out there, especially with the less-than-pleasant bonus of comorbidities with MS.

Related items:

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• MS is like the cancellation disease.

 

Image/s: Public domain photo and user-created word-graphic

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Dizziness isn't always all-ears

 

Whirling vertigo often begins in the ears … but not always. Ask anyone with multiple sclerosis or migraines. Better yet, ask anyone with the double bonus of both. The combination abounds!

 Vertigo can be a symptom of migraine. And it’s extra special when it comes from an MS migraine, which is an entity (or agony?) all its own.

The American Speech-Language-Hearing Association put it this way:

 Specifically, vertigo, which is the sensation of perceived motion without actually moving, is reported by up to one third of people who have migraine, and general dizziness or unsteadiness is reported by up to three quarters of all patients with migraine.

The folks at Johns Hopkins Medicine point to vestibular migraine as a frequent source of vertigo and related symptoms:

 Migraine headaches are a common neurological condition. Although common migraines are characterized by a moderate to severe pounding or throbbing headache, vestibular migraine may or may not involve headaches in combination with vestibular symptoms such as vertigo, imbalance, nausea and vomiting.

Stanford Medicine agrees:

 Unlike the classic migraine, which is described as severe, throbbing headache, vestibular migraine has no pain associated with it 50% of the time. Vestibular migraine causes episodes of dizziness described as rocking, spinning, floating, swaying, internal motion and lightheadedness. They most often occur spontaneously, but can be triggered by stress, sleep problems, skipping meals, dehydration, other illnesses.

 Wow. So it’s possible (and not even unlikely) to have a migraine without suffering a severe headache.

Finally, someone’s talking my language!

 After years of going around and around (See what I did there?) with my primary care physician, in which he insisted that my frequent and severe vertigo / lightheadedness / dizzy / off-balance symptoms were caused by inner-ear crystals (including multiple physical therapy sessions for this diagnosis, which proved unfruitful and actually aggravated my symptoms, I found this migraine-related information to be a complete game changer.

OK, for the vast majority of vertigo sufferers, a simple physical therapy maneuver can work miracles. (Got vertigo? Try this first!)  But for the MSer (or anyone with central vertigo, rather than benign positional vertigo) or the migraineur, it generally proves a bust.

 I’ve had migraines since my Junior High years. But they always used to include major headaches. And apparently vestibular migraines (and the frequently associated vertigo) are most common among those who were particularly susceptible to motion sickness, especially as children. Bingo! That was me.

 Enter MS. Within the past few years (especially since hormonal changes kicked in with a vengeance), my migraines have evolved. Sure, I occasionally have the head-in-a-vise pounding variety. But more often, I battle a dull headache behind the agonizing whirling and unsteadiness of vertigo.

 Thankfully, my MS doctor affirmed my description of symptoms and flat-out said the frequent (sometimes daily) vertigo I face is related to migraines, which are common with MS. As such, she recommended avoiding food-related migraine triggers (as I already do), getting much-needed rest, drinking plenty of water, and taking travel-sickness medication when vertigo strikes. (See Simple OTC product helps vertigo?)

 That means no more neck twisting, which only aggravated some of my existing MS demyelination and didn’t fix the lightheaded spinning problem anyway.

 

Related items:

• Ain't nothin' pseudo about a pseudo-exacerbation.
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• MS and vision: How many types of glasses do I need?
• MS is like the cancellation disease.
• MS makes me clumsy sometimes.
• Not all nose-dives are MS' fault.
• Self-advocacy: When therapy is not therapeutic
• Simple OTC product helps vertigo?

 

 Image/s: Excruciating Headache, M. Egerton, 1827, public domain

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Learning to plan down-days

 Multiple sclerosis can really get you down. You can almost plan on it. That’s why plenty of long-time MSers recommend planning down-days.

 

What are down-days?

 These are those days when we lighten our calendars on purpose. We might stay home and pursue low-stress calming activities. Maybe we do some simple crafting, read a book, binge a favorite TV series, or even take a nap.

This isn’t slacking.

 We’re recharging our batteries, stepping away from stresses, and setting ourselves up for future activities and responsibilities. Essentially, we are becoming better stewards of our own bodies, particularly with MS playing non-stop in the background. Even when we aren’t enduring a full-blown exacerbation, most of us still combat symptoms. And the possibility of a flare-up always lurks nearby.

 Down-days are extra important for the MSer. Even while we are stepping back for rest, we are still at war with this crazy disease.

 

When are down-days most needed?

 Personally, I have found that I can pretty much count on needed a down-day (or more) after a busy week or a full weekend.

 Here’s an example. Last weekend, I went to an evening movie with a friend on Friday. I participated in a choral music festival on Saturday afternoon and evening, followed by chugging my way home (solo) in a blizzard. Sunday I vended at a saddle and tack sale. All this came after a full week that included some important meetings, plus a couple of medical appointments and a funeral for a friend.

 These were all worthwhile activities with people I appreciate.

 Still, it was no surprise that I was completely trashed on Monday. MS had me whirling with vertigo. My head throbbed with migraine. Various muscles were cramping, and that weird tingly nerve pain came alive again. Worst of all, the classic MS fatigue was at full peak.

 Fortunately, I was able to clear most of my calendar for Monday and part of Tuesday. That need was easy to anticipate.

 Occasionally, life becomes complex enough that we can’t just simplify our schedules. We know we’ll be overwhelmed by a few overdone days. But we go ahead and slug things out the best we can anyway. That’s when down-days become especially essential, if we can just hold on long enough to reach them.

 

Down-days are easier when they are planned.

 Ask anyone battling MS, and you’ll hear that it’s a whole lot simpler to set aside preventative rest days than to wait till the MonSter sidelines us with serious symptoms.

 

Forgive me for preaching to the mirror again.

 I’m still not so good at this. It’s hard to sit out of amusing, interesting, or exciting events. It’s tough to turn down projects. It’s disappointing to miss out on fun gatherings. Deliberately declining any of these isn’t easy. But it’s important.

 People with invisible illnesses like to talk about the Spoons Theory. Basically, this holds that each of us starts each day with a handful of spoons. The spoons represent the energy we possess for that day. We never know how many, and this varies with each day. When the spoons are done, so are we. The trick is to pay attention and budget those spoons wisely.  

 

It’s a challenge. It’s hard to say no – even to ourselves.

 With this in mind, it stands to reason that planning frequent down-days can help to set us up to greet upcoming days with a few more spoons.

 

People will struggle to understand our need for down-days.

 MS is known as an invisible disease, because it can be difficult for onlookers to notice. (Other invisible diseases include chronic fatigue syndrome, Crohn’s, diabetes, fibromyalgia, lupus, Lyme, migraines, narcolepsy, rheumatoid arthritis, and more.) As a result, many folks may have difficulty understanding or commiserating with MSers, even during flare-ups. What’s more, people may not comprehend why we might suddenly bow out of a social commitment, cancel a business meeting, opt out of a trip, or decline an invitation.

 They may suspect we are merely making excuses. Some will even say so.

 Whether folks get the picture or not, we have to find ways to manage our lives with MS.

 

Sometimes we just have to step away, whether we plan it or not.

 By dedicating portions of our future scheduling to down-days, we hope to set ourselves up to manage MS triggers ahead of time. Fatigue and stress are universal precipitants for MS symptom aggravations. And down-days help to stave those off.

 

Remind me again.

 The tricky part is that we tend to want to make the most of our best days. When we feel pretty good (as in, when our worst MS symptoms are not raging), we like to pack all of the projects, errands, outings, and other highlights into our schedules. But when we overdo it, we almost always pay the price later.

 Down-days can help to keep the MS warrior up and running.

 

Related items:

·        Can MS show you how strong you really are?

·        Excuses: Ever played the MS card?

·        Life with MS: Sometimes you feel like toasting, but other times you're just toast.

·        Maybe it's one of those imMeaSurable Mondays

·        Nerve pain feels like coming apart at the seams

·        Somebody stop me. I've done too much. Again.

 

Image/s: Word cloud generated by this user

 

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You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.

Thermostat wars and MS

 

 It’s midwinter, and that means the thermostat wars are in full swing. In our house, it's one of life’s ups and downs. There may be a chill in the air, but our house is hot – way-ay too hot. And it’s turning up the heat on a daily debate.

He turns the heat up.

I turn it down. 

He turns it up. 

I turn it down.

 

You get the picture.

 I’ve explained the ins and outs of Uhthoff’s Syndrome, the medically proven perils of overheating that face those of us living with multiple sclerosis. I’ve even printed out scientific papers documenting this. I’m pretty sure I’m talking to a wall (like the wall on which our home thermostat is mounted).

 He cranks it up to the mid-70s (F). I dial it back to 68 (F). It’s endless.

 Some medical experts say 68 (F) is the ideal home temperature for someone with MS. That’s about 20 (C). 

I must admit: I’m growing a bit hot under the collar over it. (One might say it's getting out of control.)

 

Nope, I’m not nitpicking. This is a real thing.

 You could say I'm venting, and that may be true. Or possibly, I'm simply letting off steam. But MS heat intolerance is factual.

 In fact, before neurologists grew so fond of magnetic resonance imaging and lumbar punctures (spinal taps), they used to put patients into hot baths to diagnose multiple sclerosis. Those who experienced worsened symptoms in this steamy setting were tagged as MSers.

 Heat sensitivity is why MSers try not to sit near heating output vents in restaurants. It’s the reason we choose the beds farthest from the heating units in hotel rooms. It’s why we don’t find high-temperature baths, steamy saunas, and hot tubs to be particularly inviting. It also explains why we open kitchen windows while baking or cooking and why lots of us sleep with fans all year round.

 To a person with MS, a slight increase in body temperature can bring on a whole host of unpleasant symptoms. It’s a real nightmare.

 It may be difficult to help a non-MSer understand our symptoms, because these manifestations of MS frequently come and go. They are unpredictable and hard for even us to fathom sometimes.

 

We’re not making this stuff up.

 One of the curiosities of this crazy condition is the way it jumbles our own internal thermostats. We can feel hot when everyone else is cold. And vice versa. We may be peeling off sweaters, while others are reaching for their coats.

 Even so, a genuine elevation of heat (even a small one) sets the worst of MS in motion.

 

What happens when the house is too hot?

 For me (and many other MSers), my world begins to whirl (from vertigo). My vision blurs. My color perception dulls. Various body parts grow numb or pins-and-needles tingly. Fatigue attacks like a beast. Even my speech can be affected. (Some MSers experience tremors, absentmindedness or even incontinence as part of this well-known heat intolerance.)

 

It’s no fun.

 It can be a sub-zero winter day, and I’ll step outside for a moment of relief. When I cool off, the symptoms usually subside, as long as I don’t heat up again.

 

What about cold temperatures?

 Now don’t get me started about what extreme cold temperatures (or sudden temperature shifts in either direction) do to the MSer. Those days of uber-frosty air conditioning are coming, along with their own set of related MS symptoms flare-ups.

 Meanwhile, I think I’ll go check that thermostat again.

 

Related items:

·        Cooking with MS: It's all about timing

·        Life with MS: Sometimes you feel like toasting, but other times you're just toast.

·        My shower looks like a crime scene

·        Remember hot showers? Not with MS.

·        Remember when bathing didn’t make you blind?

·        With MS, a hot flash may not be a hot flash at all.

 

 Image/s: public domain photo/s

 

Feel free to follow on Twitter. Please visit my Amazon author page as well.

You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.