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

counting-sheep

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 speaking and advocacy work, the Digmanns have inspired countless friends, colleagues and perfect strangers with their amazing love story and passion for life. See for yourself in their book “Despite MS, To Spite MS,” a compilation of their heartfelt essays, accented by haiku-style poems by Judy Williams.

Click here to order a copy now:

Chair of the club

by Jennifer Digmann

I belong to an exclusive club. It’s unlike any other club to which I’ve ever belonged.

It is not like the Delta Phi Epsilon sorority I was a member of as a student at the University of Michigan-Flint or like the Immanuel Lutheran Church group my husband, Dan, and I meet with each month.

No, this club is something special because membership in it was not by my choice.

I am a member of the “wheelchair user” club. And for as much as I do not want to be a member, I consider myself fortunate to include myself in this group.

I did not immediately gain wheelchair user membership upon my diagnosis with Multiple Sclerosis  back in 1997. MS signed me up in 2002 when it took away my ability to walk. At first, I didn’t think my wheelchair dependence would last.

“Certainly this is a bad dream. As soon as I wake up, I’ll be back on my feet,” I naively thought.

Twelve years later, I’m still in my chair. I hate just about every single aspect of my wheelchair reliance, including the continued concerns about accessibility, decreased circulation, risk of pressure sores and the invisible barrier that surrounds me and prevents me from getting close to just about anything.

But then something like the recent conversation I had with a complete stranger reminds me just how lucky I am to be a member of this club.

As Dan and I were out with some friends at our local watering hole, a fellow wheelchair user I had never met rolled up to me and frankly opened the conversation, “So, how long have you been in that thing?”

There is no need to pussyfoot around the subject. Really, if I’m going to be offended by a no-nonsense question like that, I’m not dealing with my condition as well as I thought I was. And besides, who doesn’t like chatting with someone interesting in a bar?

Undeterred I answered him, “Twelve years. And you?”

He introduced himself as Bill and told me his story. Bill explained his near-paralysis caused by an accident almost fifty years ago, his successes and failures, and proudly talked about his two sons and the love of his life, Nancy. They’ve been married for 58 years.

He then attentively listened as I answered his question about how I ended up in my wheelchair a dozen years ago. When I told Bill it was because I have MS, he sympathetically grimaced as he said, “That’s a bad deal.”

I agreed, but then went on to explain how I’ve worked to make the best of the situation, found strength in my friends and my church (which interestingly is only two blocks from Bill’s home), and in my husband.

When he asked how long Dan (who also has MS) and I have been married, I boasted that we will celebrate our ninth anniversary this September.

Just like that, I met another wheelchair user who can relate to my mobility challenges, frustrations and triumphs. These are among the reasons I am grateful I belong to such a group of open and understanding people who are eager to listen and share stories about how we all were initiated into our exclusive club.

Before Bill rolled out of the bar, he made sure to introduce me to Nancy, his wife, who he calls his angel. And I introduced them to Dan, my husband, who is my angel.

In making fast friends like Bill, I see another way us reluctant members of the wheelchair user club, in an ironic sort of way, are truly blessed.

 

Special thanks to Jennifer, for this guest post, for your wonderful, inspirational book, and for being such a great example of all that MS‘ers can accomplish “Despite MS, To Spite MS“.  To catch up with Jennifer and Dan, please visit them at www.danandjenniferdigmann.com

 

Remember, sometimes it helps the stress, just to say F-U-M-S.

Special thanks to www.FreeDigitalPhotos.net for providing the cool wheelchair clipart.  And the background is orange.  How cool is that!!??!!

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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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My Friend Has Multiple Sclerosis

I got a text  from a friend the other day.  It said that he was sorry for contacting me out of the blue with a bomb like this but – his wife had an MRI last week and they just left the neurologist’s office where they learned she has MS.  I could hear the anxiety and […]

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