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:

• Ain't nothin' pseudo about a pseudo-exacerbation.
• Just in case: 10 top items to pack for a hospital stay
• Managing chronic illness can mean redefining goals.
• Maybe MS has taught me something, after all.
• MS is like the cancellation disease.

 

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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.

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.

Managing chronic illness can mean redefining goals

People living with chronic illnesses (such as arthritis, asthma, crohn’s, diabetes, epilepsy, fibromyalgia, multiple sclerosis, and more) are often the most determined folks one might ever want to meet. We fight daily battles, as our own bodies betray us in curious and uncomfortable and frustrating ways.

Many of us have streaks of stubbornness. Let me rephrase that. We tend to have firm resolves, when we set our minds to do something. And this is rather remarkable, considering the countless ways chronic illness can sideline us (often without warning).

We keep on setting goals for ourselves. We make New Year’s resolutions. We sign up for advanced degree programs, volunteer opportunities, extra projects at work, gym groups, craft classes, and special-interest pursuits. Once in a while (or maybe more than that), we have to go for Plan B.

Here’s an example.

A year ago, I registered to run a full marathon (nine months ahead of the event). This occasion actually occurred just over 10 years after I was diagnosed with multiple sclerosis. But I signed up anyway, knowing full well I could find myself in full MS flare-up when race day arrived. (Only I wasn’t. I was able to complete the marathon. But it doesn’t always work that way.)

Sometimes our big goals work out. But often, we have to reconsider them and rework them.

Not long ago, I offered to cater a book group gathering. It was sort of my turn anyway. So I agreed to ante up. That day, MS came at me like a beast. I had to phone a friend and ask her to pick up my refreshments from me and take them to the event. She filled right in, and it worked out. But I was sorry I couldn’t follow through that day.

It happens.

I’m all about showing up, if I’ve committed to doing something. But MS occasionally has other plans. I’ve had to pull out of programs and postpone personal projects. I’ve disappointment friends and family members, when I’ve called to cancel get-togethers at the last minute. Those who comprehend life with MS seem to understand. Others don’t.

When chronic illness deals me a mighty migraine, blinds me again in one eye, sets me spinning with vertigo, or lands me flat on my back, my goals have to change. The goal-of-the-moment might become simply making it through that day. It’s pounding through pain to finish that day’s bare essentials.

Living with chronic illness means doing the best we can with whatever life throws at us on a given day.

Bucket lists and to-do lists, be darned. We’ll try to get back to you. In the meantime, we’re doing all we can to hold it together until we get to punch out for the day (whatever that means this time).

Dragons, beware. We hope to come out swinging our swords soon. But for now, we might just hover in the cave for a while. We’re not afraid. We’re just mustering our strength again.

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Public domain image

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