Monday, April 9, 2012

The Madness of MS...

Okay all y'all who suffer from the ups and downs and ins and outs of an ongoing ailment/illness, it's time to set the record straight.  It's been a bad month... well, few months.  But the past few weeks have been the worst.  The onset of the TN was in itself a huge flair, but it was only the beginning.  I have talked about the crushing.  But then there's the other physical crap:  I feel like I just need to catch my breath; the girdling pain that goes around the uppermost part of my abdomen; my back hurts from my ribs to my shoulders; burping; fingers are asleep (making it take all day to do these posts); pains in my chest (heart?); tired - not sleepy - just so tired; my memory sucks so bad that some days I have to look at my drivers license to remember how to sign my name.  And what can you say about vertigo?  Then there's the effect of this flair:  overwhelmingly thirsty and smoking more because it makes the pain in my face a little better for a little while (?); because I still hurt and it just seems to get worse and different,  I can't remember if I've taken my meds; stressed even more because I think I'm having a heart attack; depressed even more because I can think of a hundred things I need to be doing but don't feel like it.


Now the good news.  I have had all these symptoms before - I can remember that, but I'm not sure if I've ever had them at one time.  When I was admitted to the hospital last year (for a bleeding issue, not necessarily MS related (?)) I actually told the doctor that I was sure I had lung cancer and that maybe we should test to see if it was spreading.  He asked when I had been diagnosed... well, never, I just know.  (Yes, I actually said that).  My admitting doctor came in and did me the service of testing for cancer (I've dealt with him several times with my folks and singing his praises would take 2 posts!).  He came back later and said that all those symptoms are the MS... that I did not have cancer nor an abnormalities with my heart.  Another thing I want to mention - I believe whole-heartedly that fibromyalgia is a qualified illness:  I know many people with it and even doctors say that it's a real ailment.  So I asked Dr K when I was there if I could have fibro since many days I seem to hurt all over.  He explained that no, I don't have fibro, I have MS.  Fibro is ascertained after all other diagnoses are ruled out.  So I have all the symptoms of fibro in addition to the cancer, heart disease, electrical shocks and other manifestations of MS.  It's a grand life we lead!


You learn to ignore the subtext and deal with the subject.  You learn to stop thinking you have lung cancer because you have pain around your ribcage.  You learn to discount heart disease because you have muscle spasms around your heart.  You know you can't sit, or stand, or even lay down for more than a few minutes before you have to find another position to see if you can alleviate some of the pain (you can't!). You learn to put all of today's meds in a dish on the bookcase and/or write down when you take them so you don't over take your meds everyday.  You bookmark a thesaurus on your computer because you can't remember any of those words you used everyday a few years ago.  You even learn to smoke a part of a cig at a time so that you're not chainsmoking because of the pain or the meds (non-smokers don't get this reference!) and to line up the pop cans, or drink mix packets, so you can keep up with how much junk you're putting into your body.  I'm saying that we cope.  We try not to climb on top of the roof and scream "Please make this shit stop!!!" even though we want to.  When we can, we scrapbook or read (a chore when the neuropathy affects your eyes) or paint or garden (when weather permits).  We try not to say, "No, I can't cause I just feel so bad." even though it's impossible not to say it sometimes. 

But I wonder, "How will I know?". I can't go to a doctor all the time because of my current financial/social security situation. But even that's irrelevent to the question, "How will I know?".  Because MS externalizes itself with all of these symptoms, what if I do have something else and the symptoms are just blown off as part of the MS by me as well as a doctor?  What if I'm sitting here with the crushing pain and it really is a heart attack (because women's symptoms are different than men)?  What if the pain in my ribcage is actually the start of something bigger?  What if the that tingling/burning feeling in my hands and feet are poor circulation? 


I know how lucky I am.  I know that so many people end up in wheelchairs or worse because of this awful disease.  I know that the fact that I can still spend a day going back and forth to this laptop and read what I've written and pick up the pieces for a few minutes is a gift.  I know that I can still have good days when I can do what I love.  I know that I have a wonderful mom who, despite her own illnesses, does whatever she can to help and worries about me (though I wish she wouldn't-it doesn't change anything and it just puts more stress on her).  I know I get to see my grandchildrens faces and hear their laughter.  I know that I do have good days when I can help out those I love.  I know that on many days I can still drive.   I thank God every day for these blessings and more. 

And I know I'm not alone in this.  I get MS magazines (these are free, look at the organizations on the web) and I know so many other people that deal with their own diseases.  But sometimes the loneliness sets in - no matter what you know in your head, sometimes your heart doesn't get the message - and the loneliness stems from the fact that it's so hard to communicate how you feel.  That sometimes saying these things is almost as hard as feeling them.   That communicating how you feel just doesn't come across because it's not just the physical (which is the easiest part to explain) but there is so much mental that goes along with it.  And then there's the fact that none of us want to sound like a whiner or make people uncomfortable or cause them more worry.


You probably know someone, if not yourself, that have to deal with their own issues of symptoms/questions/insecurities.  If you are a friend, don't try to get to the brass tacks of how this person feels, just let them know that you're there for them to talk to if they need a sounding board or even just someone to cry on.  If it's you, write it down.  Really.  Writing down how you feel today can make you feel better mentally... it's like a weight is lifted because you've actually told someone  and nothing you write has to make sense (because often it doesn't) as no one has to read it.  It's abpit  the sheer act of 'saying' it.  Another thing is the "Creativity Heals" project that is featured in the CK magazine.  A minibook or project about how you feel and how you deal with your illness.  I'm working on mine (I know I work on a lot of projects, a little ADHD maybe!) and on the days when I can't sit and scrap, I make notes in my journal about the pages I want to put in it.  But I mostly work on this project when I'm feeling bad - it's therapeutic when I want to let out my rage or depression about everything I hate in my life (yours may take another direction, like why you feel blessed even while dealing with the aspects of your illness).  However you want to do it, find a way to express how you feel and you will take some of the burden off your mind regarding whatever it is you're dealing with.

I hope this posts helps in some small way by knowing that you are not alone and taking somethiing away on how to deal with those day-to-day ups and downs and ins and outs.


"Well that's essentially how I feel about life - full of loneliness and misery and suffering and unhappiness - and it's all over much too quickly."  - Woody Allen

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