Time Flies

It's been a while since I've posted I know!!  As I've mentioned in the past  I volunteer as an MS peer with National MS Society (basically, I just listen and help people get through their first year of diagnosis with support and my own experiences)  and I had a new MS patient that was assigned to me.  After a few chats she was thoroughly disgusted with her quality of care and lack of knowledge about MS.  I'm sure my vague answers about my experiences didn't help.

As most of us MS'ers who have had Multiple Sclerosis for a while we now KNOW

what a gray area (pun intended!) MS is.   There are so many variations of symptoms and everyone is different blah blah blah.  Well, this particular subject was frustrated not know what to expect and was scared (we've all been there) of the unknown future.  And proceeded to tell me that "thanks for trying to help, but I'm opting out of the MS community"

I was stunned.   Opt out??  Was that an option???  Nobody told me about that one. Where the hell was the check box for that one?????

 Well these last few months have been kind of crummy with my personal MS experience.   I've had a small exacerbation with eye pain, dizziness, numbness and pain.  Small in the sense it's still going on after a month  but has gotten no worse like I've had in the past and is tolerable.  Yay! Lucky me.......

I haven't felt like posting on my blog because of me feeling yucky and the last thing you want to do when your having MS symptoms are talk about them.  At least for me. Plus, my son was coming in from overseas in the Navy and would be home finally after 3 years. And,  my other 2 teenage boys had all kinds of things going on.  It has taken all I've got to act "normal" and conserve my energy so I could keep up.  I had a lot going on and it dawned on me.  I wanted to "opt out" of MS too.   At least for a while.  So I did.   Sure, I had daily reminders that I have it but I had enough to keep me distracted.

So I get it.  Everyone is entitled to "opt out" for a while if they feel like it. Doesn't make you a weak person.   Sometimes we just have to concentrate on ourselves.  

So here are some examples of me "opting out" since I've last posted.                I hope you enjoy!

Bring on The Heat Meat

Happy Summer!   I hope everyone is having a fantastic summer!!!   And for all you MS'ers I hope your staying a cool!  

This summer has been just the opposite for me as far as summers go.  My summers normally consisted of lounging by the pool, swimming and going to each and everyone of my son's baseball games including all local games and also as many Atlanta Braves games as I can.  Hot?  You bet. Muggy Tennessee heat.   But unlike most MS'ers heat didn't bother me it was the cold that did me in.

So every summer my motto was "bring on the heat Meat" (classic Bull Durham line)   

And then like most things that change I started noticing my leg going slowly numb when I was out at pool.  Then my arm.   Once I was inside it SLOWLY resolved itself. Always right at that 48 hour mark before I freak out and think it's a flare up. Then if I did  a full day of outdoor fun or yard work I slowly realized a long day outside in the heat meant a few days down( really down) later on.

So, this year I consciously stayed in more.  Interestingly enough I didn't have as many symptom issues.  And I'm pretty pale.   Hahah  A little vanity.

My husband has taken over yard work.  Very graciously I might add.  The way he was acting I thought I was dying or something for a week or two!

So, just another slap in the face that things can change. Or have to change for health's sake.     And that's ok.  

Going to Disney at night instead of during the day.  Kind of cool. 












https://www.youtube.com/watch?v=ZaLdrVWDdQU

Twitter Away

Wow!  I had no idea I would have such  terrific response from my last post.  Who knew just talking about Twitter would generate such interest.

I have had people email me and say that they have newly discovered Twitter as well.  And that they have been amazed at  all of the MS followers that can be found on it.  

Really broadens your circles huh?! 

Since then I have tried to keep up with all of the MS people and sites that are on Twitter.  Almost impossible there are so many!!  It's wonderful that we aren't as alone as we may feel sometimes right?!

So, Twitter away!  Let our MS voices be heard and make new friends along the way.  :)

Twitter

So I've been fooling around with Twitter.  By "fooling around" I mean actually learning how to use it!  I've had a Twitter account for a year or two personally but not a specific account concerning my MS.  Recently I have discovered there are an amazing number of Twitter users with MS.  And they are just as interested in you as you are of them.  Refreshing!

For those who like to post updates on their MS progress or for MS advocates Twitter is an amazing tool.  At times it is nice to know there are so many other people out there who are experiencing symptoms right along with you.  

If you don't have Twitter try it.   I guarantee it will make you feel not so alone.....

You can find me on Twitter @myfablifewithms  

Hope your week is fabulous!

Teresa

Show Your Love

I read an interesting blog the other day that really stuck with me for some reason.  This daughter was shocked to discover upon her Mother's death that she (her Mom) had MS.   The mother hid it from her husband and children for many years so as not to be a burden.....

The daughter was hurt because she grew up thinking that her Mom was cold and distant.  Apparently the mom thought that she was doing everyone a favor by not doing things with the family that she wasn't physically capable of doing. Or not explaining why she couldn't.

Wow.  I guess I understand? No, not really.  I for one could never do that.  My family has given me the support, courage and drive to do everything that I am capable of doing right now.  

We don't talk much about my MS at home.  We all know it's there. No biggie. Taking care of my family and wanting to do as much possible with them makes me take care of myself. Reserving my energy when needed so I am able to keep up with them is important.  Sometimes I forget that but crazy enough someone else around me does and reminds me.  Just the same as I do for them.  Which I think is pretty cool. 

We are a family.  We take care of each other.  That's what families do. If your loved ones don't know what's going on with you how can they understand you?  And vice versa.

I would hate to think that one of my boys thought I didn't love them very much just because I let my MS dictate my life and they weren't aware of it.

Everyone handles things differently I guess.  I understand what that mom was trying to do, but my opinion is don't let MS or any disease keep you from letting those around just know how much they are loved.  

Vertigo Fun

Yay.  It seems that I have a nasty touch of the dreaded vertigo.  For 2 days I have felt like a pinball in my home banging from doorway to doorway down the halls.   For those who don't understand my lame example of vertigo here is the technical description:

Dizziness is a common symptom of MS. People with MS may feel off balance or lightheaded. Much less often, they have the sensation that they or their surroundings are spinning -- a condition known as vertigo.

These symptoms are due to lesions—damaged areas—in the complex pathways that coordinate visual, spatial, and other input to the brain needed to produce and maintain equilibrium.

It is one of my least favorite MS symptoms.  Just because it makes me queasy and hard to walk and get things done.  Usually I have to lay around until it passes which a) drives me crazy doing nothing and b) it is a direct slap in the face that something is wrong with me and not as ignorable as other MS symptoms.

Well, on the bright side this should give me time to finish up some of my Netflix series I've gotten hooked on this winter.   Breaking Bad or Revenge anyone??!

See, I try to always have a back up plan or a bright side for everything MS throws my way.  That way I win.  

Winter Time Blues

Ugghhh,   those winter time blues.  You know what I'm talking about.   Cold days, stiff muscles, stuck indoors etc..... 

My least favorite season.   After a month of wallering (that is really a word here in the south)  in my pitiful depressing state I pulled myself up.  I started exercising more at home in addition to the classes I take outside home.  I also started a journal.   Which sounds so old fashioned in this day.  But start one I did.  Believe it or not my secondary neurologist suggested it.  Once I got the hang of writing "my feelings" about anything I want it got easier.  Kind of like blogging but with more details and honesty!!

I even (gasp) started back on anti-depressants.   I know that's a touchy taboo subject to throw "out there" where anyone could find out that me or anyone else is not perfect.

I've been on them a couple of times since being diagnosed with MS.  And I thought that once I got a handle emotionally and physically on my disease I wouldn't need them.  

Wrong.   On both counts.  For me at least.  I have come to terms that you can never have a handle on MS.  You can cope and move on but that's about it.  

Emotionally is another story.  There are so many factors that contribute to you emotional well being and having MS. It's not just you that makes your emotions scatter daily.  It's MS.   I won't bore you with the dry facts and diagrams.  I won't waste your time or mine today talking about lesions and myelin sheaths etc.   We can do that another time.  

Bottom line for me.  I take an anti-depressant/anxiety med so I can live my life and not worry so much about the little things. Because worrying around the clock takes a toll.  It's exhausting.  And I'm not ashamed to admit it.  

Overused quote I know but Life Is Too Short

And because I've accepted this and am back on meds I'm able to do this!!

Never Ending Cold Part 2

Ok,  so my "common" cold from last post turned into the cold/virus/flu whatever that lasted oh about 3 weeks.  For my husband as well.   So, I couldn't get the holidays over fast enough.  And of course after 2 weeks I start to panic thinking of all the stories of people with the flu dying or it turning into something worse. And the ever present fear of a virus turning into a full blown MS flare up.  Yeah,  good times.

But, now it's finally gone except for a few lingering coughs.  And of course it has turned super cold here in the south.  I already looked like a bag lady for weeks and the look will apparently continue until April......  

Still, the good news is that I have felt "MS great".   I have had Tecfidera flushing more frequently which is annoying but tolerable.   I do hate waking up at all hours with my face feeling like a bad sunburn.  Creepy.

I hope all is well for everyone.  And no I made no New Year resolutions.  Silly.  

Stay warm.