Time – Doesn’t Anybody Really Know What Time It Is?

Occasionally I will post a guest blog – either something someone has sent to me – or something I’ve actively sought out.  This guest blog was one that I solicited from a good friend of FUMSnow.com – Ms. Joy S. Johnson.  She’s a writer, an animal enthusiast (especially her dog Duke) and yes, she has MS too.  And – she throws an “F-U-M-S” out there when needed.  I like her a lot – and her writing is impressive.  I thought this particular post would be appropriate this week since we’re just getting used to our new Daylight Savings Time again this year.  So – do you know what time it is?  Do you care?


Time and Multiple Sclerosis

Does Anybody Really Know What Time It Is? Does Anybody Really Care? *
*(With thanks to Robert Lamm; CTA/Chicago, 1969)

Answer: Yes. Maybe.

“Time” is something Albert Einstein could explain but that never existed until humankind generated ways to measure it. Prehistoric people knew just that it was light and then dark; seasons morphed from cold to warm; hunters waited patiently in the bushes seeking their prey. “Dinner time” was when the meat got home and (if fire had been discovered) was cooked and ready to eat.

Flash forward a bunch of millennia and Time is of the essence. Time heals all wounds. Only Time will tell.
Time is a very concrete and significant part of modern life but it means different things to different people. Different cultures treat time in unique ways. In Jamaica for instance the concept of “soon” is a far cry from what “soon” means in New York. In Jamaica, it’s really not so soon!

As children we measure time primarily by important events: How long until dinner? How many weeks until a birthday? How many days until Christmas? “I’ve got to go to the dentist tomorrow?” Adults may consider those events as well, but adult “time” is broken into smaller, acute increments which must be recognized and obeyed, or else! Or else what? Or else we’ll miss the school bus, be late for work, arrive embarrassingly early or late to social functions, or miss a favorite TV show! (Not all of us have DVR.)

One truism most can agree with is “Time flies when you’re having fun.” A great weekend? Poof! it’s over. But the same 48 hours at work – or in bed with the flu– are likely the “longest” 48 hours you’ve had in a long time.

So it goes to reason that if “time flies when you’re having fun,” it must stand absolutely still when you are NOT having fun. And it does! Ask anyone suffering from a migraine headache how long a minute is. Ask a woman in the throes of giving birth, or someone with a herniated disk, severe burn or any acute pain. I guarantee that for those poor souls time seems to almost stand still. It’s a horrible sensation. It’s the reason many chronic pain sufferers and critically ill people—smart people in their right mind—think about suicide. Because in a state of suffering time stands still. And if time stands still, it feels your pain will never end. And if your pain is never to end, well, can we blame them for wanting an end to the suffering?

Eckhart Tolle, the elfin-looking spiritual teacher and author of The Power of Now, has written and lectured extensively on “living in the moment.” How wonderful to free ourselves of the baggage of the past, to worry not over an unknowable future, but to simply Be in the present– in the moment that is now. I say it depends on the moment. I say it depends on if that burning smell is coming from the candles on your birthday cake, or from the flesh you just burned taking a cake from the oven! Same “now” perhaps, but guess which scenario stops the clock?

I quit wearing a watch when I found myself disabled and at home most of the time. With few obligations outside the home I don’t much need to know what time it is. I wake with the sun, or the dog, or my bladder. I eat at my leisure, I rest when I’m tired, and when I need to know the time I am surrounded by a myriad of appliances that won’t let me forget even when I want to! Smartphone, PC, TV, oven… THEY all know what time it is! But does anybody really care?


Joy S. Johnson


Please leave a comment in the comment section below this blog post.  It helps a ton with our Google rankings which means more MS’ers can find us and join the community.  Feel free to leave Joy a message here as well – she’s an avid reader of the FUMSnow.com blog!!



 Special thanks to www.FreeDigitalPhotos.net for allowing us the use of the cool clock image for this post.  

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Survivor’s Guilt – Seeing “The Other Side” of MS

Multiple Sclerosis and Guilt


According to Wikipedia, “Survivor guilt (or survivor’s guilt; also called survivor syndrome or survivor’s syndrome) is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not. It may be found among survivors of combatnatural disastersepidemics, among the friends and family of those
who have committed suicide, and in non-mortal situations such as among those whose colleagues are laid off. The experience and manifestation of survivor’s guilt will depend on an individual’s psychological profile.”

I was familiar with the term which, I’m sure, is why it came to mind the last time I went to see my neurologist.  They had redone the office and separated out the MS population into one office.  I walked in and immediately felt my stomach take a dive.  I checked in and sat down.  Looking around, there were 3 wheelchair bound patients,  several folks with walkers, and a few with canes.  I was the only one chugging on my own steam.  The door to the back office opened and the foot of a gurney started to wheel out.  That patient couldn’t speak or focus and had a lot of tubes coming out of various places on her body.  A healthcare worker was by her side, thanking the nurses and making an appointment for the next month, while the ambulance transport team readied the patient on the gurney.

I had seen all of this on past visits, but it was in a general neurology population office – not specific to MS.  I was still able to tell myself that those people that were the worst off must have ALS or something – certainly not MS.  When I could hold it at arms-length and assume that the patient population that I belonged in was not indicative of what I was seeing – things were fine.  Not anymore.  There is no denying walking into an MS-only practice and seeing a vast array of disability that this is a very real possibility in my future.

I had done such a great job of denying – and assuming – that I honestly had never considered myself at risk for that level of disability.  Healthy denial?  Maybe.  Arrogance?  Potentially.  Whatever the motivation, now that I was confronted with this truth – how would I handle it?  With Survivor’s Guilt.  I actually felt guilty because I could walk unassisted.  I have, thus far, escaped the very worst ravages of this disease – and on some level – I feel guilty about that.  Not guilty like “I deserve it” but guilty like “why don’t I deserve it”?  That sounds so silly now reading it back, but the truth is, I hear from people who are truly suffering with the disease every single day.  I am not.  And while I’m ever so thankful for that, the question of “why am I so lucky” and” will my luck hold out” are now at the forefront of my mind.

One of the great mysteries of MS is it’s choosing of it’s victims, and the course of their disease, without prejudice.  It is an equal opportunity offender.  So the question of why I am so fortunate is one that simply cannot be answered.  Nor can the question of future disability.  It strikes me that while this is so “in my face” – it’s really not unlike life without MS.  Everyone has the chance of developing some disease – and the extent of it is usually indeterminable  without benefit of time.  MS is just life magnified.  And while, in all of humanity, there are those who are better off and those who are worse off, no one should feel badly for falling somewhere in the middle of that demographic.  I wouldn’t wish someone without MS would have MS.  I’m sure those people at the neurologist’s office that day didn’t wish that I had the same issues that they did.  So why put that on myself?  After all – saying I have survivor’s guilt without seeing how this whole thing turns out is a bit short-sighted – or even arrogant.  Who knows if my MS will progress beyond anything I saw at that office that day.

So – dear friends – I ask you:  do you have Survivor’s Guilt?  Do you ever feel guilty when you see someone “worse off” than you?  I’d love to hear your thoughts.  Please leave your comments in the comments section below this post.

And remember, sometimes it helps the stress, just to say “F-U-M-S”!!

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Multiple Sclerosis and Sleep – Or Lack Thereof


All of the studies say eight hours is optimal for adults.  A recent study says 7 is plenty.  But all too often, Multiple Sclerosis is the “thief in the night” that steals sleep and leaves us even more tired than the fatigue that we’re often gifted with this disease.

I hear it all the time: “I’m so tired I can’t drag myself to do more than walk from one seat to another all day.  Then I go to bed and cannot sleep.”  It’s sooooo frustrating.  And it continues to feed that same cycle.  Tired, can’t sleep.  More tired, still can’t sleep.  So tired I can’t function, still unable to sleep.  Get pills from doc to sleep.  Take pills.  Sleep (sometimes).  Feel even more cog fog than usual.

Personally, I’m typically fine unless something wakes me.  Whether it be a child or a pain (sometimes one in the same!!), once awakened, I’m done for the night.  I’ll lay there as long as I can stand it – until I realize that I’m telling myself to relax and go to sleep and and my shoulders are up around my ears and I’m squeezing my eyes shut!


What To Do

So – what do you do when you have trouble sleeping?  The first step should really be to identify the cause, if possible.  So – are you waking up to go to the bathroom?  Because of spasticity? Are you stressed about something (we have MS – yep, we’re stressed alright!!)? Are you depressed (again, we have MS – you do the math)? Inactivity?  If you can identify what the issue is – you can begin to address it.  For instance, if you’re having to go to the bathroom several times each night – there’s a good chance that our old friend UTI is in town.  Call your doctor and get on the meds immediately.  Give the UTI a ticket out of town and hopefully your sleep will return. BTW – I’ve noticed a huge drop in UTI recurrence since I started drinking cranberry juice.  It really reduces the recurrence.  Worth a try, right?  Spasticity?  I have a heated mattress padthat I turn on for those nights that I’m all “bunged up”.  I know that this is counter-intuitive since heat is not our friend – but this truly helps my spasticity calm down and allows me to get some sleep (sometimes).  There are also medications and alternative therapies – think massage and essential oils.  Stressed?  Well now – that one’s a bit tougher.  Is there something going on in your life that you can address during the day to help reduce or eliminate your stress at night?  Is the stress the fact that you have MS and you’re concerned about that?  Well – denial is a beautiful thing and has worked wonders for me!!  Alternatively, see a therapist.  It really does help.  Just saying things out loud that concern us – unburdens the mind and may be enough to allow you to get some rest.  And –  the therapist may have some solid suggestions that can help address some real life issues that will, in turn, alleviate the stress and let you get some sleep.  Additionally, here’s a book that I’ve heard good things about.  I haven’t read it, but if you do, I’d love to hear your thoughts: Quiet Your Mind and Get to Sleep: Solutions to Insomnia for Those with Depression, Anxiety or Chronic Pain (New Harbinger Self-Help Workbook).

Bottom Line

Sleep is important to every one – even more so if you’re battling a disease like MS.  Don’t just ignore the problem – identify it and deal with it – get help if you need it.  Getting the right amount of sleep can make a huge difference in another of the most common co-morbidities in multiple sclerosis – depression.  When we sleep, chemicals and hormones are excreted in our brain that actually do a lot to maintain brain health and provide mental clarity.  So – darken your room, go to bed at the same time every night, go through a routine that will signal to your body it’s time to wind down, NO SCREEN TIME an hour before bed and utilize the suggestions found in this article.

Do you have any tips and tricks to offer your fellow FUMS’ers?  Please – leave them in the comments section below.  Thanks for sharing.


Sometimes it helps the stress, just to say F-U-M-S!!

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Chair of the Club

Wheelchair used for Multiple Sclerosis

I’m so happy to introduce the FUMS audience to Jennifer Digmann via her guest blog today.  She and her husband Dan are both incredible human beings – and both happen to have Multiple Sclerosis.  Jennifer was diagnosed in 1997; Dan was diagnosed in 2000. She has secondary-progressive MS. His is relapsing-remitting. Through their writing, public […]

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MS, Obituaries and Funerals – Oh My

Death and #MS

I recently went to a funeral for a friend’s mother.  This woman had had MS that had steadily progressed for the last 30 years.  I remember thinking of her in her wheelchair, having to be “attended to” and “done for” when I was diagnosed.  Would that be my path? I found it so interesting that […]

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Is Multiple Sclerosis Pain Real??

Pain from Multiple Sclerosis

  I remember when I was diagnosed, the neurologist told me I had nothing to fear in the way of pain.  “Multiple Sclerosis doesn’t cause pain,” he assured me.  Did I mention that he’s my FORMER neurologist?? I don’t know if it was the tingling pain, the searing pain or the shooting pain that presented […]

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