Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)

Showing posts with label coping. Show all posts
Showing posts with label coping. Show all posts

Sunday

Can wake-up sunshine help with MS?

  

Pulling back the curtains or running up the window shades immediately upon awakening in the morning has become a popular natural elixir for lots of folks. It’s not exactly a new discovery, but lots of health experts are trumpeting the merits of catching a glimpse of sunlight right after waking up.

 Starting the day with a glimpse of natural light can be soothing and cheery at the time, but it also may provide some significant ongoing health benefits.

 


Sunlight (or UV lighting) isn’t just a treatment for seasonal affect disorder anymore.

 Experts agree that, although excessive exposure to sunlight may cause skin cancer, sunlight can aid in resetting the body’s circadian rhythms (internal clock), adding vitamin D, generating emotional well-being (by boosting serotonin and melatonin in the brain), improving vision, easing certain skin conditions (eczema, psoriasis, and vitiligo), treating jaundice, reducing blood pressure, and perhaps helping with weight management.

 Scientific American says it may help with cognitive fog, fatigue, inflammation, lethargy, and other symptoms common to MS. The National Library of Medicine offers support of the theory that sunlight (or light therapy) can reduce MS-related fatigue.

 A 2021 study published in Neurology magazine suggested that children and young people spending considerable time outdoor in summer months might be less likely to develop MS than those who did not.

 Some actually use ultraviolet light boxes to self-treat autoimmune diseases like arthritis, Crohn’s, colitis, diabetes, and more. Oh, and multiple sclerosis.

 

Step outside, if you can!

 Direct sunlight is a known source of vitamin D, which is healthy for everyone, but especially difficult to build up for many MSers. It seems we can’t get enough of it. A short jaunt outdoors (or perhaps a brief stop to read a chapter of a good book) can be just the ticket.

 

Sunshine before screen time

 There’s something to be said for taking a few moments to breathe deeply and enjoy a peek at the outdoors before picking up the phone, tablet, laptop, TV remote, or other screened device. Starting the day with a pause seems like a healthy thing to do – especially as a stress-buster. It’s a way of changing the channel before jumping into the plentiful concerns of the day.

 Personally, I love to open the blinds and let the sunshine in (or just natural light, if it’s a cloudy day) and then crawl back into bed for a few minutes. Sometimes I can spot birds, rabbits, or other delightful sights. It’s a great time to ponder the day to come and think through my plan of attack, so to speak. Even that is likely to start a new day in an intentional and deliberate way.

 Hey, it can’t hurt.

 

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Saturday

Lost my glasses atop my head again!

  

Stop me, if you’ve heard this one. Heck, you may have done it too!

 Blame it on MS fog, if you want. Because vision issues are common among those with multiple sclerosis, we tend to wear eyeglasses regularly.

 How many times have I searched for my eyeglasses, only to find that I am wearing them on top of my head?  (True confessions: I’ve done this with sunglasses too. My kids tease me repeatedly about the time they caught me with a pair of sunglasses and a pair of eyeglasses riding on top of my hair.)

 


Is it really such a terrible idea to wear glasses on top of your head? Maybe.

 Hair products, natural oils and sweat can muck up your glasses. And it’s hard to move those eyeglasses around without leaving fingerprints on the lenses.

  1. Eyeglasses can bend stretch and lose their proper fit by sitting atop your head. No one likes wearing wiggly spectacles!
  2. After repeated wearings, eyeglass hinges loosen and break. (And how can you see what you’re doing with those tiny eyeglass repair kits, if your glasses are broken? That’s right. You need another pair of glasses to do it!)
  3. Too-tight eyeglass frames can give you a headache, and MSers already have plenty of those.
  4. Oops? Glasses tend to scratch and break when they fall off your head too many times.
  5. Hats don’t fit, if they are put on over those glasses on your head.
  6. Eyeglasses aren’t actually helpful, unless they are on your eyes.

 OK, we get it. But we do it anyway. We give our eyes a break and stick those glasses up on our heads, regardless of the consequences. Plus, a pair of eyeglasses can make a handy headband.

 Complicating matters further, many of us stash our glasses on our necklaces (or neckties), on the front opening of a shirt of sweater, or simply loose in a pocket. Those special specs can get crushed, smashed, or dropped. (Don’t even ask me what happens when the glasses are stashed in a back jeans pocket. It wasn’t pretty.)

 I’ve worn my glasses riding on top of my head, tucked in the neckline of a shirt, or dangling from a necklace more times than I can count. That’s why I sometimes look like I am dancing the Macarena while looking for them.

 Eyeglasses belong in their protective cases, whenever we aren’t wearing them to see. But what if we can’t remember where we put those cases?

 

It’s a quandary for sure.

 Good thing I stock up on those cheat cheater-readers. I’d sure hate to lose or damage pricey prescription eyeglasses!

 Now, if I could only find my car keys …

 

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Image/s:  Adapted from public domain photo

 

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Friday

Chocolate can be the kiss of death with multiple sclerosis

  

Raise your hand, if you love chocolate. OK, maybe not so fast.

 Chocolate is a major trigger for headaches, especially migraines. And migraines are common among those battling multiple sclerosis.

 Sure, that’s not good news, especially during holidays like Christmas, Valentine’s Day, Easter, Halloween, or … well … you get it.


  But identifying triggers that can be eliminated (even disappointingly) can sure be good news.

 Maybe tyramine is to blame. That’s a component of chocolate. Caffeine maybe factor, although that’s also found in some headache remedies (such as Anacin or Excedrin). Whopping amounts of sugar can also lead to headaches.

 For any or all of these reasons, chocolate is not the headache sufferer’s friend. (To make matters worse, chocolate is a common craving during PMS for women – a time when we may be particularly susceptible to headaches anyway.)

 I used to love chocolate. But once I discovered that consuming chocolate would lead to headache hangover, I was only too happy to give it up.

 Here’s a hint. Dark chocolate seems to be the worst culprit, when it comes to chocolate-triggered headaches. White chocolate is the lesser foe, and milk chocolate falling somewhere in the middle.

 So chocolate is the kiss of death for those who are prone to headaches. It won’t exactly kill us, but it can lead to death-defying pain in the brain. 

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Image/s:  Public domain photo/s, Pixabay

 

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Saturday

Too much! Too loud! Overstimulation awakens MS

  

It’s easy to become overstimulated in these busy times. We are bombarded with images, messages, noises, smells, and other stimuli – even in our own home. And when we go out, even if we aren’t agoraphobic or claustrophobic, we often face crowds, traffic, and commotion. 


Overstimulating situations can take many forms: 

  • a rush-hour traffic jam, with honking horns and lane-hopping drivers, while the radio is playing
  • a family dinner, with everyone talking at once
  • a loud restaurant with booming music, clanging dishes, and boisterous diners
  • a grocery checkout line, with PA announcements, impatient customers, your own kids in tow, and a hurried cashier
  • a too-loud TV or sound system, especially if you’re trying to focus on a project
  • multitasking on deadline

 I bet you can come up with even more triggers of overstimulation. Essentially, volume and chaos are key contributors. Even sitting at a computer with too many tabs or windows open at one time or trying to work at a cluttered desk or counter may set things off. Of course, everything goes up a few notches with illness, injury, insomnia, or a crisis in the mix. 

And ladies: Toss in PMS, pregnancy, or menopause, and all bets are off.

 

Sensory overload is a neurological circus, and it is common with MS.

 We may experience this in several ways, such as: 

  • agitation
  • anxiety
  • aversion to touch
  • concentration problems
  • confusion
  • disorientation
  • distraction
  • dizziness
  • feeling faint
  • frustration
  • muscle spasms
  • numbness or tingling
  • overheating
  • oversensitivity to light (especially flashing lights)
  • physical pain
  • speech difficulty
  • sudden-onset fatigue
  • sweating
  • tremors
  • and more.

 You know, it’s basically the whole kit and caboodle of MS symptoms. But they seem to subside, soon after the overstimulation diminishes.

 

What can MSers do about this?

 Turning down the noise is key. But it’s not always possible.

 Noise-canceling headphones can help. (I frequently wear the big old-fashioned headphones while working at my own desk at home. And I don’t even plug them in. They help to cut the overstimulation clutter in my own home, where loud phone conversations and high-volume TVs can become uncomfortable and overstimulating.) Playing calming music through those headphones is a plus for others.

 Wearing sunglasses and selecting glare-reducing eyeglasses (if you wear glasses) may minimize some visual overstimulation. Night-driving anti-glare glasses are available. Also, polarized glare-reducing sunglasses can be found to fit over regular eyeglasses.

 Softer-glow light bulbs (or dimmers) ease some of the harsh stimulation of the brighter ones.

 Stepping away from chaotic situations may be an option sometimes. I’ve left often left crowded rooms during noisy gatherings (even for a few moments) or stepped outdoors for brief walks and fresh air.

 Simplifying our schedules can help as well.

 Stress management techniques do wonders for those who must deal with overstimulation. A lot of these involve finding moments of privacy and quiet. Some folks practice prayer, quiet time, meditation, gentle exercise, yoga, slower and deeper breathing, singing, reading, and other means of reprioritizing their attention and reducing sensory clutter for a while.

 The hardest step is often to recognize when we are growing overstimulated before it throws us into MS turmoil. There are times when it simply happens without warning. But even identifying the problem can make it a bit more manageable.

 Turning down the noise is a sound decision, when we can. 

 

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Image/s:  Public domain photo/s, Pixabay

 

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Hot tubs can put MSers in the soup

  

Jumping in the Jacuzzi may sound appealing when muscles spasm and joints ache. Whiling away time in a steamy whirlpool can sound soothing.

 

  Lounging in a steamy hot tub may rejuvenate some folks, but it can utterly wipe out someone with MS.

 

Not so for anyone living with multiple sclerosis.

 The hot tub can be one of our worst enemies, when it comes to managing life with MS. It’s pretty much on par with a sit in the sauna, when it comes to triggering MS troubles.

 Heat is not our friend. (Actually, extreme temperatures in either direction can set off our symptoms.  But overheating is a big baddie for us.) 

 Is a sauna soothing for someone with MS? Not so much.

 Uhthoff’s Phenomenon (aka Uhthoff’s Sign) is a classic experience among MSers. When the body temperature goes up, our neurological symptoms generally increase too. That means a cozy dip in the hot tub can invite extra balance problems, blurred vision, confusion, dizziness, fatigue, numbness, pain, tingling, weakness, and other MS woes.

Once our bodies cool down again, some of those symptoms may subside, usually within 24 hours.

 Is it worth all that, just for a short jaunt in the jetted tub?

 

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Image/s:  Public domain photos, Pixabay

 

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Friday

16 simple tips for hosting guests while battling MS

 

Living with multiple sclerosis can be stressful enough by itself, and the idea of hosting company may feel like the proverbial last straw. Maybe that’s why MSers might be reluctant even to offer. And that’s not unreasonable, considering how suddenly a flare-up can sideline us. It’s hard to commit to taking on extra tasks or responsibilities when we cannot predict when or how quickly our bodies will betray us without warning.

 At the same time, anyone with a long-term and potentially debilitating medical condition can quickly feel lonely, isolated, and out of touch with others. We may even sense that it’s our turn to have the family, circle or friends, or office mates over for a luncheon, cocktail party, barbecue, or other gathering.


 

 What can the MSer do to de-stress the prospect of hosting guests? Here are several suggestions. Maybe you can add more (in the comments). 

  1. Choose a date that fits easily into your own schedule. Try to keep your calendar clearer than usual right before and after the event.
  2. Plan to host during your best part of the day, when your own energy is likely to be at its strongest.
  3. Invite another person to co-host, if that works with your guest list.
  4. Keep the menu simple. There’s a reason potlucks are so popular.
  5. Look into catering and take-out options, if those could fit the bill.
  6. Complete as much of the food preparation in the days leading up to the event, so you can pace yourself. Consider what items you might make and freeze in advance.
  7. Try to get plenty of rest ahead of the event, including an early bedtime the night before.
  8. Check the thermostat in your home. Turning it down a notch or two may help to prevent you from overheating, especially with extra people around generating extra heat and excitement. We all know what heating up does to MSers.
  9. Be sure to take your regular medications. You might even take your rescue medication, just in case, if you are concerned about sudden symptoms (like a headache, GI issue, or anxiety attack) cropping up.
  10. Pick out a no-fuss comfortable outfit to wear for the occasion.
  11. Go barefoot (in your own home) or in your stocking feet. Or at least, wear comfy no-slip shoes.
  12. Step away for mini-breaks, as needed, after guests have arrived. Even an extra restroom break or a moment in the garage or fresh air can help you to relax a moment and clear your head.
  13. Allow guests to pitch in and help, especially if they offer. Don’t try to do it all alone.
  14. Remember to drink plenty of water and to eat something, instead of simply serving others. Hunger and dehydration are no-no’s for anyone, but particular for MSers.
  15. Avoid the alcohol and any food triggers you might have while you are hosting. (For example, chocolate can be a migraine trigger. High-fiber foods can set off any GI issues, common to MSers.)
  16. Sit down whenever you can. Let the dirty dishes pile up in the kitchen sink, while you take a breather and enjoy your guests.

 If the idea of hosting company (even family) in your own home still sounds overwhelming, remember this mantra: 

Go out to eat instead.

 You can always put out the proverbial welcome mat without actually having people come into your home.

 Dining out usually costs a bit more than having a meal at home. But it may be worth it. And you can always ask for separate checks, if that seems appropriate with the present company. After all, the main point is gathering with colleagues, friends, or loved ones. It’s probably more about the people than the venue.

 

Hosting guests is a treat. But it shouldn’t have to be a trigger to an MS exacerbation.

  

Related items:

·        Despite MS, sometimes we just have to take it to the limit

·        Learning to plan down-days

·        Managing chronic illness can mean redefining goals

·        MS comorbidities: Welcome to the party!

·        MS is like the cancellation disease.

·        That’s not the kind of hug anybody really wants

 

Image/s:  Public domain image.

 

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Monday

MS can be a ticket to de-stress

 

Life with multiple sclerosis can be exhausting. Add the occasional (or frequent) sudden onslaught of MS-related fatigue of biblical proportions, and it’s almost unimaginable.

 High-energy people may find it difficult to empathize or understand what the MSer means, when he or she describes a titanic tiredness that saps all strength and sends energy and motivation limping away.

 Physicians may call this lassitude, and it's a hallmark of MS. It’s physical and mental weariness, a crippling sluggishness. And it can come on suddenly, seemingly without warning.

 One thing we know for sure – MS hits us the most when we are tired and stressed.

 


Maybe it’s time to let MS be our ticket to de-stress and recharge.

 Here are a few strategies for minimizing the stress that can aggravate and increase the fatigue that goes with MS (and that can leave the MSer extra vulnerable to a full-blown flare-up).

  1. Clutter is confusing and chaotic. Simply clearing off a kitchen counter, putting away clean laundry, or tossing out junk mail helps remove stressors.
  1. Multitasking can be unmanageable. Efficiency is lauded as a virtue, but too much multitasking can send our minds awhirl and our energy away.
  1. Tackling to-do lists reduces stress. Sometimes it helps to make to-do lists and then knock off one task at a time. By listing even the smallest chores, we can gain satisfaction with each completion. At the end of the day, we can review what’s done and feel a bit of accomplishment. If MS has us homebound, sidelined, or otherwise restricted, this strategy can be extra important.
  1. Realistic goals are our reality. Sure, we like to stretch ourselves, often past our own limits. But setting more reachable objectives can be rewarding and simplifying. The net result is often less stress. The tricky thing is, MS can change our energy resources spontaneously and unpredictability. (Ever heard of The Spoon Theory? We never know how many we’ll have in a day.)
  1. Learning to say “no” is life-changing. Boundaries can be a new best friend to the MS warrior. They don’t come easily, because we tend to want to volunteer and participate and be active helpers. That’s one way we get worn out extra quickly, so we have to choose carefully when to say “Yes,” if someone asks.
  1. Granting ourselves permission to rest is powerful. Stopping our self-expected activities isn’t easy. Who doesn’t want to feel productive and useful? Yet those living with MS may need more rest than those whose myelin isn’t threatened and compromised? We may need to curl up with a book, stretch out under a blanket, or even catch a catnap to regather ourselves and avoid the overdoing that can invite MS to wreak its havoc on us again.

 Self-management is tough, especially with the ever looming challenging that the MS MonSter brings to our lives. And it’s not like we want to cop out of life, escape all responsibilities, and sit idly by. But it’s critical to be deliberate about our mental and physical exertions, if we are to reduce stresses and build ourselves to battle the dreaded beast as best as we can.

 Preaching to the mirror here. I know. Remind me again … soon.

 

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Image/s:  Adapted from public domain image.

 

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Saturday

MS can do a triple whammy on vision

 Any multiple sclerosis battler knows there’s a lot more to MS than meets the eye.

 Here’s what the National Multiple Sclerosis Society has to say about MS and vision:

“Vision disorders are the first sign of multiple sclerosis for many people. The 3 most common disorders are optic neuritis, diplopia (double vision) and nystagmus. While these conditions can be frightening and uncomfortable, the prognosis for recovery is good with treatment.”

 


Here’s a quick peek at each of the most prevalent vision-related issues for those living with MS.

  1.  Optic neuritis – Caused by an inflammation of the optic nerve, this can be a painful and troublesome symptom of multiple sclerosis. It usually shows up suddenly as blurred vision (often tunnel-like) or dimmed vision, often with blind spots and blurred colors. Affecting one or both eyes, optic neuritis also may bring sensitivity to bright lights and a flashing sensation with eye movements. Untreated, it can last months, although it may abate sooner for some with steroid treatment.
  2.  Dyplopia – Commonly known as double vision, diplopia causes blurriness and decreased depth perception. This can affect one or both eyes, and it can be uncomfortable or even painful. During a bout with this, a person may be extra vulnerable to falling and is unlikely to be able to drive or operate machinery safely.
  3.  Nystagmus - This condition is marked by rapid involuntary eye movements, which can be rhythmic and may move up and down, side to side, or round and round. Vision (in one or both eyes) becomes blurred and distorted. This can result in dizziness, a feeling of disorientation, and headaches. Nystagmus may result from issues with the brain, ears, or eyes – all of which can be affected by an MS flare-up.

 I’ve had personal experience with all three of those – and sometimes at the same time. Such flare-ups are usually accompanied by vertigo and often a feeling of motion sickness (with nausea), and they generally bring on or aggravate a migraine headache.

 

What about recovery?

 For many MSers, recovery can happen, at least until the next exacerbation or relapse. Then the symptoms (including vision issues) can crop up in the blink of an eye. (Sorry, had to.)

 For many, these vision symptoms may clear up on their own in time, at least for the most part. In stubborn cases, doctors may prescribe steroid treatments (intravenous or oral or a series of both), as this has been proven to shorten the vision attacks in plenty of cases. Although these can be helpful, they are not without side effects, so it’s important to discuss this option with the physician before taking such treatments.

 MS symptom triggers can beckon back these vision issues, even without a full-blown MS flare-up or new demyelinations/lesions. For example, I almost always experience blurred and bouncing vision when overheated. If I can find a way to cool off, my eyesight improves quite a bit.

 

Can eyeglasses or corrective lenses help with MS-related vision problems?

 Because all of these concerns are neurological in nature, they cannot be eliminated by the wearing of spectacles or contacts.

 Occasionally, a doctor will instruct an MSer with vision issues to wear an eye patch over the offending eye for a while, particularly if double vision and/or dizziness are evident.

 It’s important for each individual to keep an eye on his or her vision (so to speak). Eye pain and eyesight problems can point to many other health concerns besides an MS exacerbation. If these or other vision-related symptoms arise, it’s time to consult a neurologist, ophthalmologist, or other medical expert.

 

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 Image/s:  Adapted from public domain image.


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