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 there was no mention of her MS in the funeral service.  What a gift – she had lived with this debilitating disease – everyone in her sphere had – but in the end, it wasn’t even acknowledged. I guess that’s the final, great FUMS!  She had lived a very full, productive, love-filled life and that’s what was the message for that day.  Not that MS had won.

So often I come across obituaries (yes, I read them everyday – weird?  Maybe.  I do it because I feel like I can pay my respects to someone I never met – honoring their life by being aware of it.  AND – I’m happy to find my name conspicuously absent from that particular roll call!!) that seem to highlight that aspect of the deceased’s life.  The debilitating, progressive nature of the disease is seemingly pervasive in most of the obits I’ve seen pertaining to someone with Multiple Sclerosis.  The funeral I attended was in stark and happy contrast to that view of  life.

I feel as if I’ve been kicked in the gut each time I see that someone has died “of complications of MS.”  That’s the way it’s most commonly phrased.  I read with rapt attention to see how old the person was, how long they’d had it and, if I’m lucky, a mention of just what it was that finally did them in.  Morbid, I know.  But is it really?  Isn’t it natural to want to know what others within your population are falling prey to – if for no other reason than to somehow watch for and avoid that very ailment??

Wait a minute.  I just re-read that last line of drivel.  Just who in the hell do I think I am?  If that isn’t the height of arrogance.  Do I really think that I have some control over the course of this disease?  Of my life, in general?  Of what is going to take me out?  Why yes – I do.  It may sound arrogant, but I think that awareness of what to watch for and be careful of – and a constant desire to learn more about myself, my body and my disease is – well, healthy.

Reading that someone has died with or from MS is tough.  I can’t get over that initial breath-taking moment.  Going to the funeral of someone who has succumbed to something that you have – pretty deflating. I don’t think that will ever change.  The choice, then, is how to cope with it and what to do with that feeling.  I’m choosing to channel that fear and negative energy into something positive:  I’ll continue on my quest to care for myself, to learn more and do better, to raise awareness and money, and to be a part of the solution.  The cure is out there – we just need to find it.

How do you deal with bumping into the disconcerting obit or funeral for a fellow MS‘er?  Please, leave your comments in the comment section under the blog.  By sharing our thoughts, experiences and solutions – we all benefit.

I’m including some really great articles I found on the subject of MS and dying.  These are thoughtful looks – often with excellent resources – into something that we all need to spend some time thinking about – albeit uncomfortable:  Death From Complications of Multiple Sclerosis; Can I Die From Multiple Sclerosis?; Celebrity Deaths from MS; Multiple Sclerosis Prognosis and Your Life Expectancy.

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

Special thanks to www.FreeDigitalPhotos.net for letting us use the sweet photo of the grave marker.  

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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 itself first, but either way – HELL YES, MS PAIN IS REAL!

I’ve heard from other FUMS’ers that they, too, have been told that there is no pain related to MS.  I don’t know where the medical community comes up with this fallacy or how it behooves them to perpetuate that myth, but I hear it quite often.  Well, I’m here to tell you – don’t believe it.  MS pain is real and all too prevalent.  So prevalent, in fact, that there are definition of various types of MS pain.  Let me give you a little glossary of terms:

Lhermitte’s sign (lair-meetz sahyn) – this is that “electric shock” deal that runs from the back of you head down your spine – particularly when you bend your neck forward.

Dysesthesia (dis-uhs-thee-zhuh) – this is that burning or aching nerve pain that likes to settle in different areas of your body – especially at night.  Did I mention it tends to be constant?  It’s particularly fun when the “affected limb” feels cold too.  Good times, good times.  BTW, the “MS Hug” and that intense itching thing are also classified under the “Dysesthesia” column.

Trigeminal Neuralgia – “It has been described as among the most painful conditions known to humankind.”  It’s intense facial pain that’s often misdiagnosed as TMJ or other dental issues.  This may be the mother of all MS pain.  None of them are good – but this might be the worst.  It affects mostly women and is more typical found in people over 50.  Did I just mention I had a birthday recently??  Happy 50th to me!!

Spasticity  (you’ve got the pronunciation, right?) – this is where the muscles tighten to such a degree that it’s like a knot in whatever set of muscles is affected.

Bugcrawlingomania – okay, I made this one up but – you know what I’m talking about, right?  When it feels like there are bugs crawling on you and you swat at “them” repeatedly, bringing about further pain and suffering.

Greased Lightening (again, you got this one, right?) – this is where a lightening-like shock hits you – seemingly out of nowhere – and shoots from one area (i.e., your head) to another (i.e., your toe).  You don’t dare move or breathe for a moment in sheer terror it’s going to come back.

 

This is certainly an incomplete listing of all of the different types of MS pain, but I wanted to get it started.  Also to be included would be headaches, bowel and bladder issues that result in pain and let’s not forget the emotional pain caused by MS.

I’d love to hear your experiences and any additions you’d have to this list.  Please leave your two cents worth in the comments section below this post.  And here’s a couple of links for help with the various types of pain that DO come with multiple sclerosis:

 

American Chronic Pain Association (ACPA)
P.O. Box 850, Rocklin, CA 95677-0850
800-533-3231 (toll free) or 916-632-3208 (fax) or email

TNA- The Facial Pain Association
925 Northwest 56th Terrace, Suite C, Gainesville, FL 32605-6402
800-923-3608 (toll free), 352-331-7009 or 352-331-7078 (fax) or email
* please make sure you state your diagnosis of TN*

Jameson Irish Whiskey (my painkiller of choice)

Bow Street, Smithfield Village, Dublin 7

Tel: + 353 (1) 807 2348/ Email: ojd@jamesonwhiskey.com

 

**Special thanks to www.FreeDigitalPhotos.net for hooking us up with this great picture of a model screaming- like she has MS!!

 

 

 

 

 

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My Friend Has Multiple Sclerosis

Doctor Picture

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 fear in his message.  And I remembered those first days of utter confusion and fear and time spent on the internet gaining new fear and having more questions than there were answers and, and, and, . . . .

My heart broke for them – as it does everytime someone has to hear those words: “you’ve got Multiple Sclerosis.”  I wondered how I could best support these people.  What’s the best way to help ease someone into uncertainty and answerless questions?

Start At The Beginning

I chose to start by telling my friend to take a deep breath.  “It’s going to be okay,” I said.  “It may not feel like it right now, but I promise, this is not the life changer that you think it is right now.”  I tried to reassure him that there’s much that can be done to help mitigate the disease’s symptoms and progression.  I shared bits and pieces of my story – and of many of my fellow FUMS’ers – to illustrate the point:  we have MS, MS doesn’t have us.

I shared my initial symptoms, and how they’ve come and gone over the last 6 years.  I explained that I’ve found coping mechanisms – and had to have my friends and family help me along the way.  For instance, my kids have learned to let mom rest when I need it – and they’ve learned how to clean up after themselves and make themselves a sandwich.  This MS stuff has paid off in certain ways!!!

To Drug or Not to Drug – That Is The Question

The doctor gave my friends the options of medications and 2 weeks to decide what they would do.  It was obvious my friend was hesitant and felt over his head in this decision.  Additionally, he mentioned the 2 week timeframe several times, leading me to believe he was feeling a time pressure in making a HUGE decision.

I explained that most people don’t actually get a diagnosis as quickly as they had (she started with symptoms 2 months ago, saw a doc and got an MRI a week ago and now has a diagnosis!!), and as such, they didn’t HAVE TO make a decision in 2 weeks.  People go undiagnosed for years, and consequently, go without medication for years.  Additionally, I have the distinct experience of having MS both while on medication and now, for the last year and 1/2, while off the medication.  I’ll never counsel anyone to do what I’ve done – especially since this disease is so fickle both between different people and within the same person – but I certainly can share my experiences both off and on the medication.

What Does the Future Hold?

Ahh – the ultimate (unanswerable) question.  As with all diseases – especially this one – the future is unknowable.  And while that can be very daunting and overwhelming if viewed in the negative – it can be a GREAT thing if viewed in the positive.  This woman was diagnosed with RRMS.  This flare may be her one and only.  Or – if she has more – they may be very small and manageable.  Better yet – with all the incredible research that is going on right now – as we speak (or read!!) – the CURE could be found.  Wow – given that kind of pep talk – the future’s so bright, I have to wear shades!

Bottom Line

The bottom line really is that while we don’t know what will happen in each of us – every member of the human race can say the same thing.  We all share the same bad prognosis!  So I’ll counsel my friend to do the research and choose what she feels is the best answer FOR HER.  And then I’ll tell her to breath.  Deep breaths.  Deep, relaxing breaths.  Because, while none of us knows what’s in store for the future – none of us knows what’s in store for the future!!!  :)  Oh – and I’ll be sure to tell her to talk to the MonSter as it deserves:  I’ll tell her to say “FUMS” everyday!

**Have friends and strangers come to you for advice about MS?  How do you handle it?  What do you say?  Is there a resource you send them to or do you just talk them through it?  Please leave a comment in the comment section below this post.  I’d love to hear your thoughts.  Thanks.

 

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

Special thanks to our friends at www.FreeDigitalPhotos.net for allowing us to use this cool photo of a doc reading some xrays!!

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Birthdays and MS

Birthdays and MS

It’s a big day for me:  today, I’m 50.  There I said it.  I feel like I’m at a birthdays anonymous meeting:  “Hello.  My name is Kathy and I’m 50.”  I’m reposting a blog post from a couple of years ago because I read it and it still applies.  Oh and one more thing, thank you all […]

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Quit “Shoulding” All Over Yourself

“I’m so tired, but I should really clean up those dishes.”  “I don’t want to talk to them, but I really should.”   “I should really be resting, but if I don’t finish this laundry, it’ll never get done.” I felt the familiar fatigue creeping up my legs and into my back.  The spasticity in my […]

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Fun(d)raising, Awareness and Help – Oh My!

It’s that time of year again – FUN(d)RAISING TIME!!!.  There are a TON of walks, runs, golf tournaments, bike events, auctions – both silent and loud, etc., going on right now.  It’s all so important and if you’re involved with one in any way – including donating – please let me thank you on behalf […]

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