I Hate "Good Enough"

Growing up, I learned several things: take care and pride in the things that you do, pay attention to details, follow established or recommended procedures, but be creative and flexible enough to find more efficient and effective ways of accomplishing tasks. In other words, don’t expect things to just happen on their own and be willing to improve upon past efforts.

Each of us have responsibilities and must take an active role in the world around us. No matter what that role is, it’s nice when everybody is able to do their best and helps to make things work well together. But sometimes, aiming for “your best” can lead to a distraction called perfectionism.

I have to admit that I’m somewhat of a perfectionist, in an all or nothing sort of way. It’s always been difficult for me to accept something as being satisfactory, good enough, or almost right. And when I do make a conscious decision to simply do what needs to be done, and no more, I find it challenging when others around me may want to go back to the planning stages and do the work over again. Argh, once I’ve let something go, physically and emotionally, I don’t want to revisit it.

But one thing which I’ve had a really hard time learning to accept is the concept of good enough. When living with chronic disease, sometimes you don’t have the luxury of spending tons of energy perfecting every little detail. Sometimes you just have to simply ensure that things are okay, safe, or clean.

In my previous life, when I used to live alone, I was entirely responsible for everything that happened at home. If the floor needed to be vacuumed, I did it. I even moved light furniture so that I could run the vacuum wand along the floorboards to remove the cat-fur dust bunnies before they grew to adulthood. A bit of prevention helped to keep things from getting out of control.

If the dishes needed to be washed, I did them by hand and scrubbed every metal surface till it shined. If the cat became unsatisfied with the condition of his litter box, he was not shy about letting me know by doing his business on the floor of the bathroom. In that case, I needed to focus more on the prevention stage. Although I was swamped with graduate classes, working two library jobs, and performing in at least four ensembles, I was able to stay on top of routine household chores most of the time.

Now that there are three of us in the house, in addition to our three loving fur babies, and I do not need to do everything all on my own, it seems that nothing is quite as clean as it used to be. Items are often not where I left them and there’s always a pile of dishes to be cleaned.

Face it, I no longer live alone, nor do I have complete control over my surroundings which I’ve come to accept. But that’s not all, I also don’t live alone in more ways than one. My roommates now include multiple sclerosis and rheumatoid arthritis.

These roommates, MS and RA, are messy slobs. They don’t do their own laundry, nor do they sleep when I’m tired or get out of the way when I’m busy working. But these roommates are doing their darndest to teach me patience, to teach me how to accept “good enough” when it really is enough, and to learn how to appreciate imperfections. It makes me appreciate a freshly washed countertop, or a pile of clean laundry which I didn’t have to fold myself, all the more.

What types of things have you learned, or are learning, to accept after living with chronic illness for any period of time? Please share your stories in the comments section below.

Read this post in its entirety:
Acceptance: A Tough Lesson to Learn

Carnival of MS Bloggers #134

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Ignorance is Bliss
by Alison of Beauty and meaning in a broken world

When I was 28 I was living up a steep flight of stairs, and I noticed that my one leg was weaker than the other. It carried on for a while so I went to the doctor to have it checked out. The doctor looked puzzled and told me that if it carried on she would like to have me tested for MS. Well, I was horrified and felt that she must be a terrible doctor, rather than thinking that it may be true. For of course I could never have MS, not me! The obvious course of action for me was to never see her again }: (

I then forgot all about it.

Well of course I was wrong and she was right, but in some ways I am glad that I didn't know until my 40's as there was not much that could have been done back then and it saved me a lot of anxiety. I didn't have many problems, mainly tiredness. I found it hard to ski or skate but I just thought I was unco-ordinated and it wasn't a problem. I also suspected that I had a problem with my immune system, but put it down to having had a bad case of mono as a teenager.

Now MS is affecting many things and I have come to terms that this has happened to me. But I am glad that I had less to worry about and that I was able to tackle some other tough things while oblivious to the time bomb that was ticking away. I do feel for those that have know for much longer and have had worse symptoms than me. MS can make life such a struggle and I know that I have been spared from something that could have been much more difficult.

 

This concludes the 134th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on March 14, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 12, 2013.

Comments for this post.

Becoming Comfortable with Disease

Sometimes living with chronic illness gets, well, tiresome.  Sometimes thinking about chronic illness gets to be monotonous.  But living with chronic illness is a chronic situation.  One which can never be forgotten nor neglected.

Once you have been diagnosed with multiple sclerosis, life will never be quite the same.  First of all, there are doctor’s visits.  Then there are medical treatments and lifestyle changes.  Finally, there is the need to learn about the disease and how it may affect you on a personal level.

Even after seven years post-diagnosis, I am still learning about MS and how to best live with the disease.  As a health writer/blogger, I read articles on the latest MS-related research.  I try to follow the latest news and blogs.  Every once in a while, I get saturated by it all.

Read this post in its entirety:

Are You Bored of MS? A New Year's Resolution

Carnival of MS Bloggers #120

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

The Future with MS and Jello Legs

"Am I going to die?" well yes, but probably not today....

by Jamie at Newly Diagnosed with MS

Being newly diagnosed with Multiple Sclerosis is scary business.

I remember the day I got the diagnosis.  It was heart breaking.  I thought my life was over.  Now that I have been on this ride for more than a year I realize that it is not over, I have been given a new life.  In the midst of all of the uncertainty with MS, I realized that I do have control over some things and that is what I can do to keep myself as healthy as possible.


One of the first things I hear when I talk to people who are newly diagnosed is “I’m not ready to die!”

Well, the good news is, most likely that really does not need to be an immediate concern.  The fact is while we are more likely to suffer from disability in some form or another; our average life span is quite in line with the national average.  MOST people diagnosed do not die from MS but other causes, just like everyone else.  With the treatment options that have become available in the last two decades life expectancy for MS patients has steadily increased over the last 50 years and the progression of disability is able to be slowed in many cases with consistent treatment and modification of lifestyle.

Well what does that mean - Modification of lifestyle?  It means pretty much what every doctor tells everyone.  It means you should eat more healthily, get as much exercise as you can tolerate and avoid stress.  Oh and you should take your medication regularly, not just when you feel bad or cannot function properly.  MS is described as disease with symptoms that come and go so just because you cannot see or feel an attack does not mean the disease is not progressing.  It is possible to have progression without outwardly visible signs.

So, if you are “not ready to die!”  Listen to your doctor!   Take control of what you can in this crazy ride.

• Make healthy menu choices; avoid high fat, high sugar foods.

• Exercise – Keep your body in the best physical shape possible.  The blood flow is good for the brain and memory retention and the physical benefits are paramount when you have a relapse.

• Avoid stress – I know this one can be the most difficult.  Most people don’t look for stress, it finds them.  You have to learn to walk away, say no, stop and smell the roses and enjoy the moments you have.  All of that sounds so easy (and like a bunch of cliches thrown together) but it is essential for your health.  Take it slow, eliminate one stressful thing from your life, adjust and then do another.  It will pay off in the long run!

• Take your medications regularly – If you have vision problems, do you stop wearing your glasses/contacts because you can see well when you have them on?  No!  They are working so you keep wearing them!   So why would you stop taking your medicine if you feel better and fewer lesions/plaques are forming!? It is doing its job!  Let it work!

So yes, it is a scary, crazy ride but you have  the ability to take control of some things along the way to make it a better than expected trip!

Curse or Blessing? 

by CJ at my MonSter stories

I don't think it's wrong to ask "Why?". I don't ask "Why me?". Sometimes it's painful and difficult, but I try to look for the positive or the good, or at least a life lesson, in the seemingly "bad" things that are always happening to me or those I love. Struggles, trials, pain, difficulties, rejection, betrayals, illnesses, tragedies, heartaches...all these have had a major role in making me the person I am today. Some of the things I've been taught or made stronger in include unconditional love, compassion, mercy, grace, kindness, patience, self-control, endurance, discernment, contentment, joy, gentleness....wow!, as I write this I just realized...a lot of the "fruit of the Spirit"!

Much of my thinking on the subject of common human struggles has been written about in songs, and as music speaks to me and for me in so many ways, certain songs quickly come to mind, including this one that I would like to share:

( © Post by CJ ~ please do not copy)

Jello Flavors

by Janie at PasstheMSplease 

I got up and walked across the floor. It may not sound like much, but if you’ve ever tried that with Jello legs, you know how awesome it is. Believe me, when you have Jello legs you don’t want to do this…….the floor is very hard when you hit it.

I have also tried to get up with NO legs. That is also a no-no. When you try to stand up and there seems to be no muscles in your legs, you don’t get very far…...well, actually you do…..but it is not in the direction you wanted to go.

Those of us with MS go through a lot of phases with different parts of our bodies. My legs are one part of me that is so unpredictable. Some days I can walk fairly well. I bump into the wall and the furniture, but I usually get where I am headed. Other days, I sit in the recliner or lie on the sofa because my legs won’t go where I want them to. Some days, I am blessed to get out of bed because my legs won’t hold me up.

I usually use a cane to walk out in public. Open areas scare me. There is nothing to hold to and if I start to fall, there is only one way I’m going. I really don’t like the cane because I don’t feel that it gives me the support that holding on to my husband does. Most of the time, I am holding on to his shirt, his hand or the back of his pants at the waist. This seems to work for both of us and makes me feel more secure.

My husband is trying to talk me into getting a walker with a seat and a storage area. Many times when we have been shopping, I have wished I had one. I could just turn it around and rest for a moment on the seat. It is a hard decision for me to make because it means that I probably NEED it rather than just wanting it. I guess we all hate to think we are getting to that point and fight it as long as possible.

I am thankful that there are these aids available to most of us. We have a Hospice store nearby and can often get things there without spending so much. Unfortunately, things are not always there when we need them and we end up paying ridiculous amounts of money at a drug store or online for something that really should not cost that much. For many of us who are not on Medicare or have not been approved for disability, these costs are out of reach and we do without.

I used to have a recipe for a lime Jello dessert bar. It was fabulous! I wish I could find it……….I like that use of Jello much better!!

This concludes the 120th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on August 16, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 14, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #118

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

MS in the Movies, Best and Worse Things to Do After Diagnosis

Movie Time!

by Thomas at BiPolar, MS, and as handsome as ever

You know, there are days when you think you're doing real well with these disorders. This morning I was up early, shared breakfast with my wife, sent her on her way, and then did some reading. Following a chapter of a Buffy the Vampire Slayer story (yes, I enjoy the classics), I did my stretches, exercises, and then hit the road for a mile walk, headphones and all. Back home, I grabbed the newspaper, plopped on the couch, opened the paper and immediately fell asleep for one hour. This set back all other planned activities. Yesterday MS/BP let me ride my bike to run errands, then work in the yard, and get a lot of reading done, including Chris Matthews' book on JFK. Thought I could get two days in a row. Silly MS boy. Now since I'm all messed up and foggy as a London night, I'll try this.

Let's go to the movies!

It's Tuesday as I write this and I usually take in a flick today at one of the local movie houses. It's also two dollar popcorn day, and if the person taking the money and giving you your ticket is "of a certain age", I can squeeze in as a senior. Once you hit 55, and have a pension to live on, the words "early bird special" start coming out of your mouth. So over this summer I've seen everything from Prometheus to Abraham Lincoln, Vampire Slayer. I'll leave reviews of those epics to others, but just a note to the Abe Lincoln producers - please remember to keep that mole on his face all the way through the film, and by the way, during his Presidency, he had two other kids aside from Willie. I know, I know it's all made up. Alas, that's where some kids get their history from.

Anyway, below is a list of movies (and TV show) that featured a character who was either diagnosed bipolar or with MS. No one would ever figure on someone who had both, right?

Bipolar disorder: Splendor in the Grass (1961), A Woman Under the Influence (1974), Mr. Jones (1993), Michael Clayton (2007), Observe and Report (2009), The Informant! (2009), Shine (1996), 3 (2012), Homeland (TV) (2012), Lust for Life (1956), Frances (1982), Cobb (1994), Call Me Anna (1990), A Fine Madness (1966), Bulworth (1998) (for the rap scene alone)

Multiple Sclerosis: Hillary and Jackie (1998), Duet for One (1986), The West Wing (TV) (1999)

Bipolar is winning the race for most characters, probably because if you need someone manic, you can get it, if you need someone depressed, eventually you'll get that. Now these lists are not complete certainly and are from various sources around the web. You can find most if not all at Netflix or Amazon. I have seen some of these films and I intend to see more, but here's the one I'd like to talk about:

Duet for One. This is a small film, and is really based on the life of Jacqueline du Pre', so I guess you can watch either of the MS films noted here and get the same idea (See, it's not that Hillary and not that Jackie - it's the du Pre' sisters, Hillary and Jackie). Anyway, Julie Andrews was nominated for a Golden Globe for her performance as a concert violinist who contracts MS, and the movie is about how the decisions of her life after diagnosis affect those around her. You also get to see Julie undress, have sex with Liam Neeson, and say the F word a lot, which to a mind that still sees Mary Poppins and Maria from Sound of Music is a little disconcerting, but Ms. Andrews is a fine actress, and is supported by such greats as Max Von Sydow and Alan Bates who I think was in every British movie during the 70s and 80s.

But here's what bothered me. The character Ms. Andrews plays, Stephanie, constantly refers to herself as "a cripple." Now this movie was made in 1986, and since we're looking at 25 years ago, there were limited treatments, if any, and so she deteriorated at a faster pace, but a cripple? Perhaps I'm looking at the film (and before that a successful stage play) from too far away, or perhaps its a British thing.

But take a look at it yourself....

The whole thing is on You Tube. 10 parts but easy to follow.




Do you think we could ask Martin Sheen if he'd like to be President again? I'd rather have the guy with the MS than what we've got now on either side. Heck, we did pretty well with the guy in wheelchair. Oooops, no politics. Sorry. I'll be viewing Hillary and Jackie this week and will add some comments later.

Of course, these diseases are always good ones to flare up just when the story needs a push.

I'd like to close with a bit of dialogue from the film, this being said by Stephanie to her doctor.

"Sitting there year after year listening to miserable people like me tell you how the world does destroy them. Have you ever once felt anything like the pain they feel? All the despair, all the fear? You make your living from their suffering and you don't understand a shred of it. Anyone of us is more qualified to speak than you because we have been there. We're still there."

AKA-If you ain't got it, you don't get it. Other films? or TV shows?

The Five Worst Things I Have Done Since Being Diagnosed with MS 

by Marie Cooper of MS Renegade 

Although I am a relatively smart person, I can admit to having done some pretty dumb things in my life. A lot of the dumbest things came after finding out I had MS. I thought if I listed the top five, it might save someone from repeating my blunders.

Mistake #1: Not immediately making long-term financial plans.

I was eight weeks into a brand-new job in 2005 when I was hospitalized with transverse myelitis, which was followed by a diagnosis of MS. I should have looked into disability right away, even if I wasn’t ready. I should have learned everything I could have about it.

Instead, I went back to work way too soon and focused on keeping my job instead of maintaining my health.

Despite worsening symptoms that were seriously compromising my mobility and function, I kept pursuing a high-stress career that I was both good at and enjoyed. I ignored the handwriting on the wall regarding my own future.

After two frantic years of working 12-hour days, being on call 24/7, determined to prove that MS would not impact my performance, my position was eliminated and I was out of work. Before finding a new job had never been a problem. But things were complicated now. I couldn’t “pass” any more. Now I needed assistive devices, a cane or a walker or more frequently, a wheelchair, to get around. Huge red flag for hiring managers, although, of course, there is almost no way to prove that.

Two years have passed. Realistically, I am unlikely to ever return to the work force. I am just too sick. I have finally applied for disability, now that my savings are gone and I am in dire financial straits.

Mistake #2: Not immediately looking into more accessible housing.

I adore my cozy, 1930s seashore home. It is my dream house. I bought it completely on my own, with no help from anyone, and I have been inordinately proud of it. When we moved in I pulled up ratty old carpet, painted, plastered, fixed, planted, you name it. It is a charming place, full of sunshine and color, where guests settle in and are reluctant to leave because it is so comfy.

I used to be able to blow through the house in an hour, vacuuming, dusting, mopping. While running a few loads of laundry. While setting the sprinkler out for the garden. While dragging garbage out to the garage.

I never anticipated that one day it would take monumental effort to get up the three small steps from the back door to the kitchen. I can no longer do stairs. Or clean the house. Or dig in the garden. Or paint or do any of the things I so reveled in when I bought my house. I, quite simply, cannot take care of it anymore.

If I had made plans early on to move to a smaller home or apartment, one that would be easy to clean and could accommodate my wheelchair, my life would be so much simpler. Yes, I will miss my house and mourn it forever. But the stress of trying to maintain it is sucking the life out of me. And now that the market is horrendous, I will be lucky to get any equity out of it at all.

Mistake #3: Not having a frank discussion with my children about my illness in the beginning.

I have four grown children. They are good people with good hearts and I know they love me. But they are really struggling with accepting the harsh reality of how sick I am. I have done both them and myself a disservice by not forcing us all in the beginning to sit down and talk about what MS is, what might happen and what we were going to do about it. I have always been The One In Charge, strong, bossy, doing it all. My husband died when the kids were little and I have misguidedly tried to shield them from pain ever since. By pretending I was fine, by acting as though there was nothing wrong, what I’ve done has caused even more pain.

So do whatever you have to in order to get your family on the same page and to an understanding of the potential progression of the disease. You might never get to a really bad place, but being prepared together is so important.

Mistake #4: Not taking people up on their offers to help.

My amazing friends and my wonderful sister have stood by me for decades through sorrow and joy. And through MS. They were there for me from that first hospitalization. Always, always, always offering help. “What can I do?” they would ask. And what have I replied? “Oh, nothing, I’m good.” I have said this when I am up to my eyeballs in laundry, dishes and housework that was getting harder and harder for me to do.

It has taken me years to finally admit I need help. And lots of it. I am incredibly lucky that everyone is still around offering, because those offers do tend to fade as time goes on and people tire of asking when they are repeatedly turned away.

Mistake #5: Not taking care of myself.

I found out I had MS. Did I start eating really wholesome food? Did I do whatever exercise plan fit my abilities? Did I take my myriad of medications regularly and carefully? Did I rest and avoid stress as much as possible? Did I make sure I got plenty of sunshine and fresh air? Did I force myself to get out and socialize so I wouldn't get depressed?

No. No, no, no, no and no.

I kept working incredibly stressful jobs and hours. I did not focus on nutrition. I swam for a while, until I broke my shoulder. But when I couldn’t swim any more, I did not look for an alternate way of staying fit. I avoided friends and stayed in my room, in my bed, with the shades drawn. Medication?!? Tuh, (I spit on the floor), I don’t need no stinkin’ medication.

That is how you spell D. E. N. I. A. L. With some stupidity and stubbornness thrown in. Yeah, really helpful coping mechanisms.

BOTTOM LINE: You don’t need to panic, but do yourself a favor and make plans. You might never need to use them, but get your safety nets in place. My denial has cost me dearly.

The Five Best Things I Have Done Since Being Diagnosed with MS 

by
Marie Cooper of MS Renegade

As I noted in last month’s post, the mistakes I made since being diagnosed with MS were all pretty big and dramatic. The best things I have done since diagnosis are mostly small and practical, banal even, but they helped all the same.

Best Thing #1: Writing my blogs 

Hands down, blogging is the best thing I’ve ever done for myself, period.

I have been writing since I was old enough to know what it meant, but I never made the time or had the courage to put it out there or try to have anything published.

Then came blogging. I had been thinking about writing a blog for a while, but I was really apprehensive. I took my time, did a lot of preparation and then, nervously, took the leap.

Well, I have had the best time writing these blogs! My readers are utterly wonderful and many have become true friends. I have received feedback that is so touching, so kind and so encouraging it has been a real gift.

My point here is, do what you love. You deserve it. It’s time. When we have a chronic illness, it is easy to fall into a life that is limited. We don’t feel well and everything is an effort. But try and ask yourself, what is the passion that you have been too busy for? This is the chance to cultivate the things that are most meaningful to you.

Best Thing #2: I acknowledge what my body is telling me. 

Me? Listen to my body?!? Hahahahahahahaha. The only thing I ever listened to was the voice in my head that ran persistently into the future, telling me all the things I had to do. It. Never. Stopped. For. One. Minute. Then came MS.

In the beginning, I ignored my symptoms. I DEFIED them. I kept working, cleaning, shopping, doing, doing, doing. And I paid the price with regular relapses, needing a course of IV steroids to get me functioning again. I had more and more residual deficits each time. It took forever, but I finally allowed myself to respect the fact that I needed to listen for cues and anticipate my needs before they got to a crisis point.

Best Thing # 3: My “overbed” table

Go ahead, laugh. It is, after my laptop, my most treasured possession in the world. After my diagnosis with MS, I was juggling my entire life on my bed and nightstand. Juggling unsuccessfully, I might add. So a friend suggested getting “one of those tables like they have in the hospital.” I am a nurse and I have seen unspeakably disgusting things on bedside tables. I can cope with these things professionally. But I certainly didn’t want those memories lingering near my own bed.

So I resisted. And I spilled things and lost things and sat on things because my bed was a disorganized mess. In desperation, I priced what are called “overbed” tables. I was delighted to find they had a different name: laptop tables!! Well, these didn’t conjure up memories of basins or bedpans for me. What’s more, they were reasonably priced. So I bought one. And I love, love, love it.

It has a tilt top side for my laptop, a solid side for books, cups, plates, etc., and wheels that allow it to be pushed out of the way. The wheels are probably the weakest link as they will not roll over anything thicker than a human hair, but that is just a quibble. I stitched up a big tote bag with half a dozen pockets that hangs over the side of the table to hold my knitting, my iPod, my mobile phone, CDs, pens and notepads. It is like another limb.

Best Thing #4: Reach-y thingies

Whether because of the numbness and weakness in my hands or because I am simply clumsy, I do not know. I just know I drop and/or knock over everything. And, because of being so spastic and weak, I have the darndest time picking up the things I have pitched to the floor.

It took years before it occurred to me, but with a lightning strike of brilliance (yes, that is sarcasm), I finally bought several reach-y thingies. I do believe that is the technical name for them. [Note: the technical name is reachers.]

I bought ones that fold in half for the kitchen and bedroom, and that have wide, rubberized tips so I can pick up a variety of things. For the den, where I sew, (this was extra brilliant) I bought one with a magnetized tip because I am sick of playing 500 pick-up with the cups of pins I am perpetually spilling. Voila! Now all I have to do when I need a pin is stick my magnetized reacher on the floor and I come up with a dozen. I usually come up with a dozen other things as well, but we won’t talk about that.

Best Thing #5: Admitting I have MS

Crazy, huh? That having MS would be on any sort of “Best Things” list? Having MS certainly isn’t the best of anything.

I resisted the MS label for a long, long time. Denial is a great protective mechanism for a while. It is a good place to hide while the shock registers in your brain. But, when you’re in it, it is really hard to discern when denial goes from protective to destructive. For me, it was damaging when I wasn’t taking care of myself or accepting help because I refused to accept that I was sick. MS has no tolerance for not taking care of yourself. It is a punishing disease that punishes you even more if you disregard it. By admitting I have it, I am free to take better care of myself.

That is the uniting theme here in my Five Best Things – do what is best for you. What is best to make your life simpler, happier, healthier. I am not a fan of the saying, “If life gives you lemons, make lemonade.” Life is hard enough at the best of times. My opinion is, if life gives you lemons then you have too many dang lemons. And I don’t even like lemonade. But we are stuck with this disease and taking good care of ourselves is the best way to cope. I suppose that could be considered a form of making lemonade out of lemons. Although if I have to make something, then what I’d really like is lemon vodka. :)


This concludes the 118th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 19, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 17, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #112

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Acceptance: Anger, Uncertainty, and Murphy's Law

Get Mad, Get Really Mad 

by msrecess  

“That’s so annoying.”  Those were the words I found myself saying to Mom today on the phone while she talked about an issue she was having with her ankles today.

As I was talking to her, something happened.  Instead of trying to solve her issues or getting sad myself, I told her ”that’s so annoying, Mom.”  And I just kept at it, like I was talking to a friend who was having a whole bunch of bad luck.  Taking the MS out of the equation.  I chimed in with her frustration and you could hear how frustrated I was for her in my voice.  Strangely enough, I think it helped.  In that moment I was on her side.  I wasn’t saying you should do this, you should try this, Mom it could be worse.  Instead I was on her side and I was mad at MS for her.  I was mad at life for her.

If I think of when I am having a period of bad luck and people tell me “it will be okay”…sometimes you just really want them to get mad with you.  Show you that you’re not alone and your feelings are justified.  As a self proclaimed ”problem solver” I have a tendency to try to fix these things before I allow myself to sometimes really understand what someone needs.  Sometimes people don’t need a solution, they don’t need a positive spin, they just want someone to get mad at life with them.  Without knowing this you actually help them more by not trying to fix their problem than fixing it.

So today I got mad at MS.  I got mad with Mom.  We chimed in together about how this is so annoying.  How much this sucks.  How Mom just can’t win.  It felt good.

Lesson learned: I think I will get mad at MS more often.

I Want to Scream 

by msrecess 

I feel overwhelmed. I feel frustrated. I feel upset. I feel mad. I feel hurt.  I feel so many things that my initial reaction to them is to ignore them.  I like to think I am pretty good at dealing with problems head on but this one won’t go away.  There is also no end in sight.  It’s a problem that I can’t discuss with many people nor do I want to discuss it with many people.  My mom has MS and it sucks.  It absolutely sucks.  I can’t get a handle on it.  I can’t.  I am admitting it.  I don’t even know where to begin to get a handle on it because it is constantly changing.  There are new symptoms, new emotions, new issues to tackle, constantly new.  They also aren’t my symptoms.  They also aren’t symptoms I totally understand.  They are new terms and phrases.   MS also brings decisions that aren’t mine to make.  They are Mom’s to make.  I have no control over a situation that is infiltrating every ounce of my life.  My lack of knowing what to do is driving me crazy.  I literally sit as my head fills with thoughts and have no idea what to do.  I just want to curl back into my shell and do nothing.  I just want this to go away. I just want to scream.

I Feel the Earth...Move... 

by CJ of my MonSter Stories

Today was one of "those" days - when it seems as though someone might be sticking a probe in random areas of my brain and saying "Watch what happens when I do this!"  It was a very active day for what my neurologist calls "paresthesias", odd sensory disruptions that include tingling sensations and numbness, feelings of vibrations and/or electrical sensations in one or more body parts or my entire body, reduced sensation or heightened sensation.

At times, walking was difficult due to the intermittent numbness of the front part of my right foot combined with the sensation that I was stepping on golf balls.  Because of tingling and incoordination, I couldn't get my thumb and fingers working well enough to  pick up the dime and nickel to use for the parking meter.  Talking on the telephone was a problem because I was getting a shrill sound coming and going in my left ear and then my hearing would be diminished for several minutes at a time.

Sometimes the vibrations were so noticeable that I watched to see if other folks would say anything because I was sure we must be having an earthquake!  While sitting in a chair it felt as if the floor were vibrating beneath my feet and I could feel the sensation go through my body.  I was certain that everyone else had to be experiencing it too.

While preparing for bed, I was standing in the bathroom brushing my teeth.  Suddenly I felt the familiar rush of fatigue and weakness wash over me and it felt as if my entire body, to the core, had turned to Jell-O.  I've learned that it can happen at anytime, regardless of my level of activity, and there is nothing I can do to prevent it, fight it, or stop it.  I must lie down and do nothing...and so...I am.....

(Reposted by permission © Post by CJ Taylor.  Photo from NASA)

Grocery Shopping with MS Meets Murphy’s Law 

by Dave of Dave's ActiveMSers Blog 

I’ve never liked that guy, Murphy, always showin’ up at the most inopportune of times in multiple sclerosis. Like last week, when I ventured out to grocery shop for a 10-person dinner party (one that catered to a) vegetarians and b) people allergic to onions, but that’s for another story). All seemed pretty darn smooth when I arrived at the store. I even got the chance to park next to an empty handicapped spot, which I always try to do if one is available—someone may need that extra access far more than I do. And then that dude showed up. Murphy. There was just one available scooter… and the battery was just about dead.

When I grocery shop these days I usually use one of the store’s Hoverounds. It saves the MS legs for needed work later in the afternoon and it prevents me from having to ask the staff to hunt down a chair for me if I bonk an hour into my shop. And that conversation always goes like this: “Chair? Why? I don’t think we have one.” I nod. “That’s okay, I’ll sit on the lettuce. It’s softer than the apples or potatoes.” A chair usually shows up rather quickly.

Of all days I really needed to save the legs, today was that day. I couldn’t wait and come back later—the rest of the afternoon was slated for mandatory cooking and dinner prep for the weekend. Worse, I had a big haul to get and Laura had just run out of allergy medicine at the peak of allergy season. So I came up with a plan. Using the near-dead scooter, I’d hit the pharmacist (located at the opposite end of the store from the fresh fruit and veggies) and then switch to a push cart and hustle. No prob, right? Wrong.

“Your prescription isn’t ready.” Fudge. The scooter was wheezing and I was at the wrong end of the store. So I plugged the scooter in at the pharmacy and waited. “The doctor hasn’t called us back, so we’ll page you when it’s ready.” Holy bat guano, Batman. So off I go back to the front of the store to drop off the electric slug only to get paged midway. Mother Mary Joseph Stalin. Turning around, I crept back to the pharmacy, plugged ‘er back in, and picked up the allergy meds. Could I make it back with the extra few minutes of bonus juice? Would I stall out in the middle of store, stranded? Should I cut my losses and just hit the beer aisle?

I finally made it back to the cart corral averaging 0.2 mph; I could have crawled faster. But I saved my leg gas for the main shop and I was ready to motor. And motor I did. It didn’t even bother me that they were out of cans of chicken broth—how does that happen?—and the first 48-oz box I picked up leaked broth all over me. (And for those wondering, “Dave, chicken broth has both a) chicken and b) onions,” don’t ask. The vegetarian makes an exception for broth and for some reason processed broth does not trigger the other’s onion allergy.)

So I swept down the aisles in blazing time, tossing items in the basket like Jordan raining threes. I finished, forgetting not a single item, and my legs still had ample power. Screw Murphy, I thought. I didn’t even have to pee. Oh, wait—I shouldn’t have thought that. The bathroom is on the total other end of the store. By the pharmacy. Murphy is such the a-hole.

“What are you doing back here, Mr. Bexfield?” I shooed off the smiley pharmacy staff as I focused on my destination. AND THAT DUDE WHO WAS ABOUT TO TAKE THE ONLY BATHROOM. “Dude!” He let me go first. Murphy, finally, had officially left the building.

I strolled back to the front, checked out with a gazillion Monopoly pieces (part of the store’s promotion), certain that one held the $100,000 grand prize. “It’s a million dollars, actually,” the clerk said. Double cool. And then I saw a woman my age with a family member (brother, husband?) who was in wheelchair unable to control it himself. “Are you playing Monopoly?” I asked. She was. I gave her my stack of tickets and walked out to my car. She soon followed me out… to her accessible van in that last handicapped space.

Thanks, Murph, sometimes you aren’t so bad after all.


This concludes the 111st edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on April 26, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 24, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #103

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Mothers, Love MS, Job Accommodations

Clinging

by LauraX of Shine the Divine

Even life forms we consider to be simple are uniquely rich in their complexity. They cannot survive alone, but must cling to something else for nurturance. Solitude is precious, so too is connection. Finding a balance between the reality of inter-being and our cyclic desire for separation is a dance we are ever engaged in.

I am watching this in the relationships between my two teenage daughters and me, their mother as they become increasingly more independent —- “Mom, are you kidding? (exasperation) Leave me alone!” —- “Mom (in tears) what should I do?” -- a back and forth, not so gentle tug on my heart.

I see this in my own need for assistance from others due to the physical challenges resulting from Multiple Sclerosis and my longing (like my children) to do things on my own, to be by myself, and to figure things out in my own way in order to continue my human development.

There is a healthy clinging, we must acknowledge, in the midst of blossoming into who we are becoming; sometimes it is subtle, other times gripping, still despite yearning to detach, differentiate, be “ourselves,” we inter-are, and that is the way it is.

~~~~~~~~~~

It is official. I am no longer a "cool" mom. Not even to Rosie:-( --almost 15 and for Belin being almost 18, this is not news. Somehow it is harder with the youngest, more surprising, though you'd think it would be the other way around. I am in the thick of it now! I'm not sure exactly when the turning point happened, when I became more exasperating, annoying, irritating, tear-provoking instead of the fun, funky artist mom to be proud of, the go-to hugger and comforter with absorbent shoulders for tender tears (ok that still happens, occasionally). I suppose it has been gradual, and is of course developmentally appropriate. That doesn't make the poison dart comments, eye rolling or extreme sensitivity and misunderstandings of pretty much anything I say any easier to sit with, but having been a teenager a long time ago with the same feelings about my parents back then (we are very close now!) and having taught teens for years, listening to them complain to me (I was still "cool" then, I wasn't their Mom) about their perfectly loving and admirable parents (my peers)...I get it. When I think of all that I know about child development as an educator and my own experience, it IS a relief to recognize that none of this has anything to do with Multiple Sclerosis. While it certainly has an impact on our family life, these are all par for the course growing pains that every family must endure. The really good news, and there is some, is that like all things in life, everything changes...and gauging from my relationship with my own parents, in 10 or 20 years, give or take, this too shall pass:-)

Death of a mother is the first sorrow wept without her

by Heidi of Journey with MS

In the midst of moving and starting a new job, my mom passed away.  My wonderful, happy, amazing mother.  She drove me crazy, but she always cared 100%.  I was her only child, and she cherished me.  I don't think I ever realized how much I cherished her until she was gone.  It's been 9 days now.  There have been 9 days of my life that she has not been on this planet. 

I miss her terribly.  I would give anything just to be able to talk to her one more time.  To hug her one more time.  To listen to her ramble one more time.  To deal with her pack-rat tendancies one more time. 

I love you mom....I hope you know how much. 

http://www.legacy.com/obituaries/hartfordcourant/obituary.aspx?n=barbara-j-gutekenst&pid=154426008

STOP FIGHTING YOUR MS. Be a Lover.

by Diane J Standiford of A Stellarlife

A reader asked me to write a post about what it means to "fight" MS. She said it is "...beating the crap out of her..."right now. The phrases "fight MS," "fight Cancer," "fight Hunger," are, in my mind, too overused. Simply put, it would mean to do something to try and stop whatever, from having the upper hand; don't crawl in a corner and say, "I give up. I just will die. This is more than I can do anything to stop." It also is used to imply a gathering of troops to do battle against an enemy. Note, however, that we don't say we will "fight bullying," no, that we say we will, "Stop." Again, stopping that which is hurting us. Why don't we have the slogan, "STOP MS?" or "Stop Cancer?"

The reason we don't use the word 'stop' is because we know that we can not stop those diseases. Only science and medicine can stop a disease. So, with MS, the only option contrary to crawling in a corner and suffering, is fighting. Well, I am a lover, not a fighter. My view is a bit different.

When you learn martial arts, you learn to move with the kick, punch, or throw, that comes your way. In acting class you learn it is the receiver of a slap who moves with the slap before it strikes, as it strikes, like a dance. In yoga, you learn to move INTO each pose, into the tightness, and relaxation will follow. I am not a "MS Fighter." I am a MS Lover. I move with my symptoms to lessen their blow. I look into the mirror and love who I see; if I hated who I see, how could I expect anyone else to love that person?

Within hours of hearing, "You have MS," I accepted that MS was now a part of me. I told my family, friends, and co-workers as soon as I could. If any of them couldn't accept me with MS, then they were not going to remain in my life. Maybe because I am gay and had spent too many years not being, in Oprah's words, my authentic self, this new aspect of me was not about to shove me back in a closet. That was that. It was never an issue. The positive response from my friends and co-workers was overwhelming. But, understand, I didn't need their support to fight MS, I needed their support to LIVE with MS.

Yes, your doctor can give you medicine to help and in some cases stop certain MS symptoms. But nothing stops MS and do you REALLY want to fight with yourself all your life? You think you are exhausted now?! EMBRACE. There is nothing you can't embrace that is a part of you. When MS slaps you, move with it. If it takes away your vision, get free books on tape. If it makes your hands unable to hold a book, grab a magazine. EDUCATE yourself about MS symptoms and make a plan. (My blindness took me off guard and I was scrambling in the dark --pun intended-- to find agencies that could offer ideas for continuing with my life. I learned about free phone services, free books on tape, many, many services as you can imagine. And chances are strong that YOUR MS blindness will go away. Just a punch you can embrace and move with instead of fighting. While legally blind, I continued to work, enjoy books, take walks, even care for my quite ill partner, oh, and BUY A CONDO!) I can't imagine wasted time "fighting" during those days. I had too much TO DO!

When I was too weak to lift a paperback book, I starting lifting a pencil as if it were a 10lb. weight---every day. How embarrassing would that be at work, if you had not embraced your MS? After awhile I could lift a pen, then a rebar chunk paperweight---get the idea? Now, I don't call that fighting MS, I call it learning ways to live with it. Every symptom MS threw my way, I thought up a way to improve what it took from me. Little by little, and all the while building my overall health in all areas. I start with lists. I am a lister. It helps keep me focused.

When you are so depressed about your lot in life, EMPOWER YOURSELF. How do we do that? By first accepting personal responsibility for our lot in life. Look at Christopher Reeves, wow, could there be a worse lot? He blamed no one, not even his horse! Once we stop blaming something else, we can use that energy to focus on how WE can help ourselves. Humans need water, air, and, in my opinion, laughter. We NEED to laugh. Find your inner laugh-a-thon and pursue that. If you can't laugh at yourself, now is the time to change that because MS can be damned hysterical. Going to feed the dog? NO you are not! You are going to KISS the floor! Hello floor, just wanted to touch base! First time I fell I thought it was the end of the world. The last time (so far) I fell I thought it was all over. I cursed the TV! (yeah, that's how bad I felt!) But, I reminded myself that what goes down must come up and that made me laugh. My own silliness made me laugh. One finger typing? SERIOUSLY? Hysterical! My typos are so funny, I often want to leave them!

A killer MS punch? My 'wedding ring' can no longer fit over my contractured ring finger. I just was so down over that for YEARS! Then I looked in the mirror and said, "Diane! Wake up! It is just a symbol." And I figured out I would wear it around my neck. Now, I can't believe I wasted so much of ME by feeling sad about such a simple to change symbol. CHANGE. MS is so changeable, unpredictable---so...since I have embraced it as being a part of me and since I want to love me, I now must love change. Not my natural personality, but wait---how much do you hate to hear, "That's just the way I am!" I always hated hearing that and swore I'd never say it. Well, now I must LIVE it as well. (Walk the talk or roll the goal, as we in wheelchairs say.)

Find a purpose. MS took my job from me. I felt so fulfilled at my job. What was I to do? So much fatigue, weakness, slurred speech, weakness, cognitive losses, fatigue, I KNOW, I'll try a blog. My readers won't know when I type one letter and have to nap or type a sentence then call my caregiver for a toilet break and maybe, just maybe, I can help others with my stories, my ideas, my silliness---and now I am a published author. My sense of purpose has returned. We all need that. Face book has given me a platform to address my political issues and to make new friends. The Internet is a friend of people with illness--no need to ever feel all alone. Make friends.

Fight MS? A waste of energy. Learn how to live with it. Embrace. Love. Educate. Plan. Execute. Laugh. Fall back with the punches, you will be amazed at how few fights your opponent wins!

Ask an MS Navigator: What are job accommodations and how do I get one?

by Kris Graham of National MS Society Blog

We recently received a question about how to obtain accommodations when MS starts to get in the way of doing your job. What perfect timing! I was just about to write my first post on employment and MS …

First, you need to know whether or not the ADA applies to your situation.  You can request reasonable accommodation under the ADA if:

• You work for an ADA-covered employer
• You are “qualified” to do the job; AND
• You are a person with a disability as defined by the ADA.n>

ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions.

“Qualified” to do the job means that you have the “skills, experience, education, or other requirements” of the position, and you “can perform the essential functions of the position with or without reasonable accommodation.” (See Disability Law Handbook - Employment and the ADA)

Person with a disability, according to the ADA’s definition, now includes most people with MS, thanks to the passage of the ADA Amendments Act and updated Equal Employment Opportunity Commission regulations.

Accommodations can be things like new equipment or changes to existing equipment. Another example is a change to your work routines, such as hours worked. Read a few real-world examples of accommodations that have worked for people with MS.

Two important things to remember about accommodations:

1. You must be able to perform the essential functions of your job. The ADA does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function. Usually employers decide which job functions are essential.
2. Your employer does not have to provide you with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available—so be ready to discuss alternatives.

Be prepared! Before you request accommodations, make sure you can answer all of the following questions:

• How is MS affecting your job, potential job, or application process?
• Why are you requesting accommodations?
• What accommodations or changes to your work will be effective?
• What information will you need to provide to your employer (or potential employer)?
• When should you speak with your employer (or potential employer)?
• Who should you involve in the conversation?
• How should you follow-up on your request?
• What are your rights if things go wrong?

These resources can provide more help and information:

• The Win-Win Approach to Reasonable Accommodations
• ADA - Your Employment Rights as an Individual With a Disability
• Employees' Practical Guide to Negotiating and Requesting Reasonable Accommodations under the Americans with Disabilities Act (ADA)
• SOAR (Job Accommodation Network’s Searchable Online Accommodation Resource)

Not sure if your employer is covered by the ADA? Contact your regional ADA Center and the Job Accommodation Network (JAN) to make sure. Both organizations are free and confidential resources. JAN has staff trained in exploring possible accommodations for your particular situation.

If your employer is not covered by the ADA, contact an MS Navigator® at 1-800-344-4867 for assistance in exploring other possible legislation that may protect you.


This concludes the 103rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 22, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 20, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #100

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Living Fiercely, Sexy Limps, S and M or MS?, Acceptance

Telling my Mom

by silver lining of ladeedah-msandlife

My first thought when I got diagnosed with multiple sclerosis in March was, how am I going to tell my mom - my loving, high blood-pressured, easy to stress out mom? I want to keep her calm and her blood pressure low.

She knows I have medical stuff going on, I had to cancel my Spring Break plans to go home because the doctors said I am not fully diagnosed although it looks like M.S. and I'm not medicated also travel can be stressful on M.S. They want to do another MRI. So she's waiting for more medical answers about what's going on with me. Then I got the final diagnosis.

I was nervous about telling her. She's gonna be shocked and upset, it doesn't run in the family. This will be weird news and difficult to share.

One thing about MS it messes up my memory and I get words mixed up often. I told a friend the doctor prescribed me Aveeno. After her laughing hysterically she corrected me, “Aveeno is bath soap, you mean Avonex.”

When I did tell my mom I was prepared with a friends suggestion to tell her all the help that's provided and the good things. That will help keep her calm. My friend and I practiced and I got to a point where I felt that my delivery of the news would go well. I call her. Deep breath, I can do this. I had a pleasant, calm tone, made fun small talk for awhile and then decided I was ready to calmly tell her.

“Now I finally know why I'm tired all the time and keep running into walls. I've been diagnosed with S&M”...shocked I realized what I said.

The mind has the ability to go 100 miles an hour in analyzing, calculating, weighing ratio's, outcomes and carefully planning how to get through a crash landing like this. The mind can think multidimensional novel chapters in nanoseconds. I ran through several options of how to correct what I said without drawing attention to it upsetting my Southern Christian, quiet mom who sings in the church choir.

Gosh, out of all the people I make this mess up to. She was so quiet about it I thought, whew, she doesn't know what S&M is. I decided to correct it by saying the things I practiced with my friend and end the sentence correctly in same calm tone rather than correcting my mistake which would bring attention to it and then having to talk about cognitive challenges with M.S.

So I continue, “and it's OK. There are support groups, community and lots of help with ” [remember, remember, think, M&S runs through my head, then I mentally run through it again dropping the &. ] “M.S.” It's amazing I could do that much thinking while saying the sentence, so no pause before saying the word. I said it smoothly.

Now what can I tell her next, oh the books I have read about M.S. “There are many informative books at the library that talk about cures, treatments and living life with it.” Then suddenly I remember a scene from the original 9-5 movie when the newly divorced character played by Jane Fonda sees her x husband and to show how much she's changed and is a different woman, she states “...now I'm into M&M's,” not really knowing what she's talking about.

Remembering this scene makes me want to laugh. I feel it in my throat like a slight vibration, I swallow and try to suppress it. In the suppression of laughter and continuing to speak my voice gets tight and a little higher pitched. I can feel the tickle of laughter tempting my throat as I try to continue with my calm soothing attempt and say, “there are friends, people to call and web sties.” My voice is noticeable different. What if she thinks I'm really upset and about to cry. Darn my plan to keep her and me at this point calm is not going as smoothly as I practiced with my friend. Trying to suppress the laughter causes me stress, telling her I have MS is stressful and stress is bad for M&M's...I mean M.S.

OK reclaim my calmness and confidence that this is going OK.

“My life isn't over, it's just changing. It will be OK.”

If you could see past disability

by Mary K. Mennenga

To see the person

Who isn't willing to quit or given up

On living life, hope and love

Life is about

Making the most out of what I've got to work with

It's not about what I can no longer do

Instead it's learning new ways of working within the limitations

Living life has brought to all of us

Pride is a force that will need to be dealt with

It's one of the things that can defeat anyone

Remember I'm are still in control of my choices

Will I make mistakes of course that's how most learning gets done!

All I ask is your understanding that

If the reason you're helping is because you think you have to?

That kind of support feels more like pity to me

Instead of being something you want to do with me

Honestly pity is just another form of guilt

That has nothing to do with me

Walk This Way

by Kim Dolce of Doc, It Hurts When I Do This...

Long before we girls leave the crib, we sense that boys watch the way we move.

Once we become ambulatory the game intensifies. Puberty attaches language to this preoccupation as girls learn whether guys are leg men, butt-watchers, or hypnotized by hips. In adulthood, women discover the power to influence an admirer with a simple movement. We choreograph our own signature dance. Fully in control of our youthful bodies, we emulate the panther, the gazelle, our favorite Motown group, or in a goofy moment, a decrepit great uncle.

Developing MS is a real game-changer. When I added foot drop to my choreography, I felt clumsy and unattractive. Augmenting my routine with a cane was the finishing blow; a cane did well by Fred Astaire and July Garland, but I don’t sing “Swanee” or tap dance on ceilings. I gave up on grace and worried about tripping or falling. My dance morphed from jazzy Gwen Verdon to Chevy Chase doing Gerald Ford. Convinced that men observed this with either sympathy or disgust, I abandoned my desire to be desired.

One day, I noticed my husband, Mark, standing behind me beaming lasciviously.

“What are you looking at, you silly man,” I asked.

“You,” he said. “I love the way you walk.”

“Limp,” I corrected, “I don’t really just walk anymore.”

“It’s a geisha two-step,” he observed. “You take these feminine little mincing steps and then swing one hip. It makes your butt look great. You’re so hot.”

I peered suspiciously at his face, searching for irony. But he was still looking at my ass with that unmistakable gaze of desire.

He seemed to sense my overall low opinion of my physical affect in society. “I see how men look at you when we’re out in public,” he went on. “They can’t take their eyes off you. I know how men think, honey. You don’t even see it—and that’s the beauty of you.”

The geisha two-step. I do still have a dance. Maybe not the one I was hoping for, but it’ll do.

connection…

from erin jennifer griffin

after a rough week my friend, Lori, reminded me about patience today.

I realized this morning that I have been denying patience with myself.

a lot.

all the time, in fact.

Lori says “the opposite of patience is anger.”

that caught my attention. fast. goosebumps.

I started mulling this over and realized that I have been angry at my body for most of my life: there has always been something wrong with some thing God gave me.

I can count on both hands and feet the number of things I don’t like. from my nose to my toes.

and now, there’s even greater reason to lash out at my physical body: it hurts, it buzzes, it won’t move the way it used to move…or the way I want it to move.

my body is fighting back. at me. finally. and in a big way.

wow.

need to do something about this. my husband always asks me how I can see beauty in everything, everyone around me, in people I don’t even know, but not in myself?

I don’t have a good answer anymore.

intentions for the week: become my own thought watcher. interrupt when necessary. rest until it’s time to play. play until it’s time to rest. repeat. get out of God’s business.

Living Fiercely

by Nadja at Living! With MS

I still vividly remember a time during the first year after I was diagnosed where life was colorless-- all just a bunch of "what ifs" and struggle to survive. I also remember talking one day with my then husband, and realizing that I no longer had any real dreams or desires. Everything I did was somehow based in fear. I worked so I could pay my bills. I rested so I could be well enough to work, and I fought tooth and nail just to keep what I had--continually wondering if it was even worth the cost to my physical and mental health. He asked me about my bucket list and I was painfully aware that I didn't even have one.

Fast forward three years from that moment... I find myself in an entirely different state of mind. I work to live, but i don't live to work. I still work hard but I am prioritizing my activities. It can be all work all the time so now I go to aerial dance and fantasize about joining the circus. I have stopped saying no to every invitation and every activity outside of my job. I am about to turn 35 and I have a bucket list that is alive and well. My new priority, having fun doing things I love.

Last night I crossed a new item off my bucket list when I performed my first aerial dance routine. When I came home and looked at the photos, I told my roommate, "I look fierce." I love feeling like a bad ass :) If MS has taught me nothing else, "Carpe Diem."


This concludes the 100th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 10, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 8, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #94

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Good Ol' Summertime

Goodbye Rebif

by Ivy at Life with MS and EDS

In a modest white house,
There was a fridge with blue containers
Stocked with hated Rebif shots
and a woman sick of dealing with…

Evenings wasted each week – three
The need to drink water til the constant need to pee

Heat packs and popping two Aleve
Itchy shot spots nothing could relieve

Shot spots that were also black and blue
Constant fears of waking with the flu

An auto-injector that’s too powerful
A medicine’s whose effectiveness is rather doubtful

Goodbye hate and fear.
Goodbye drinking til my pee is clear.

Goodbye Aleve.
Goodbye time thieve.

Goodbye auto-injector contraptions.
Goodbye injection site reactions.

Goodbye flu-like side effects.
Goodbye mounting skin defects.

Goodbye six full sharps containers that live on top of my fridge.
(Oh wait, I’m stuck with those since no one will take them from me!)

GOODBYE REBIF!

Here I come, Gilenya! Hope you and I get along well!
(Obviously inspired by, “Goodnight Moon”)

No Exchanges or Refunds

by Karen of Meandering...One moment please

You know what I've been thinking lately...

...but it's the only one I have,
so I'm going to have to go with it,
and figure out how to make it fit.

Monsters

by Gracie's Mum

About two years ago Grace went through a phase where she believed that there were monsters in her room.

Not just under the bed, not just in the closet or behind her door.

No, she believed that they came in through the night, from where we don’t know, but she believed in them and we let her and we took the necessary precautions to make her feel confident that the monsters wouldn’t be welcome in her room.

We made a sign.

She couldn’t write or read at this point but she knew what it said:

No Monsters Allowed.

She decorated it and we hung it up on her door so that at night, when it was closed, the monsters knew to turn around and go back from where ever it was that they came.

And it stayed there.

It didn’t come down during showings on the house.

It didn’t come down until moving day morning and only then to be re-hung on the door to her new bedroom.

She still believes that monsters are a threat to her sound sleep. To her security. And although she’s never seen a monster, she knows that the risk is far too great to not hang a sign.

It’s astounding how much adults underestimate the intuition of a child.

It’s no secret that I do not have a spiritual, mystical or religious system of beliefs and that I am an agnostic.

But there is something, somewhere deep inside me, that believes that sometimes things are more than coincidence.

Not more than six months after hanging that sign, I, Gracie’s Mum, was diagnosed with MS.

And, it is in fact a monster.

It goes unseen, unheard, unfelt, for months. But you know it’s there.

And it was.

And it is.

And we live with this monster, the three of us, every day.

It lurks behind doors, at the top of stairs, at the bottom of hills.

It laughs as I get in and out of the tub, daring me to slip and fall.

It nags me and taunts me whenever I walk from a smooth surface to rough waiting for me to lose my footing.

It waits patiently in the dark for the last minute before spoiling a long planned family outing with unexplainable  fatigue or dizziness or lack of balance or all of the above mixed together in a toxic cocktail that can only be cured by a few days in bed.

And in spite of all the signs, or ropes of garlic, or crucifixes, séances or exorcisms, this monster, although not allowed, not invited, will still come through every and any open door in our lives.

It’s the in between times that matter.

The time between visits from this monster that matter the most.

Also, the comfort in knowing we are not the only family being plagued by such a terrifying monster sometimes does more than any sign could.

Knowing there are others out there, like us, going about their business, planting gardens, planning trips, getting ready to shop for back to school stuff, all the while looking over their shoulder, under beds, behind doors and in closets, is often enough to get though the paranoid induced moments in our lives.

MS is a monster in our lives, and in the lives of many others.

MS is a monster in Jeff and Sarah's life. And they have a team fighting this monster. And that team raised thousands and thousands of dollars to pay him to get the hell out of their lives.

And our life.

But, we are not hiding him under a bed.

No.

We will continue to show him off and talk about him, and write about him and lure him out of his hiding and take him for a long walk raising thousands of dollars to show him how much we hate his guts.

And if that doesn’t work, then there is always Gracie’s sign.

Happy Hump Day and don’t forget to look under your bed tonight before turning off the light!

Farewell, MS Magnet!

by Tina of MS Keeps Life Interesting

Some time ago, I wrote about my beloved MS Magnet.  Capitalized, because it meant that much to me.  You see...my tailgate magnets tell an abbreviated story.  A story of me!  I think of car magnets as old skool "colorforms", but for grown ups.  Oh how I loved to play with colorforms.

Admittedly, some folks overutilize.  You've seen this, right?  I was behind one today.  They had quite the collection of hot vacation spot abbreviation stickers and assorted magnets.  I can play that game, too!  If they made stickers that said "WORK" and "BATHROOM" and "HOME", I could put 'em on my tailgate, 'cause those are the hot spots I frequent most;-)  Furthermore, there should be ample space for each magnet.  It's cumbersome to digest as I'm waiting for my light to turn green.  I'll bet when they were kids, they used 2 sets of colorforms, thereby overcrowding and discombobulating the scene they were attempting to create.  But I digress...

I had MS Magnet when I walked from my car to the store.  Twenty-five minutes later, I returned with my groceries, reached for the liftgate handle, and saw a dingy outline of where MS Magnet used to cling.  I let out a fairly loud, "WHAT THE!", followed by, "OH COME ON!  SERIOUSLY???"  I rubbed my blurry left eye, hoping it was a trick.  I looked on the ground, hoping it fell off.  I knelt down to look under the car.  I looked closer at the dingy outline and noticed clean smudges on my dirty car.  Smudges in which fingers were.  Suddenly, it became crystal clear.  MS Magnet was...taken.  I was so angry that I wanted to throw my carton of eggs on the ground in frustration.  Because when I get that angry, I throw stuff.  Alas, I forgot the list on the counter again.  The list those eggs were on.  And so I forgot to buy eggs.  Thankfully...

I bid you farewell, MS Magnet:'-(  I had a sinking feeling that our time together would be limited.  So many people commented on you, asking where it was I got you...they knew someone with ms and wanted you to ride around with them in order to honor that person.  Even my husband has one just like you, which surprised me.  You figure...me, him, and ms are stuck together for the rest of our lives.  It's the whole "in sickness and in health" deal.  You'd think the last thing he'd want would be anything ms-related stuck to his truck.  Though he sacrificially offered that magnet to me as a replacement, I cannot accept.  Losing you is hard enough.  I cannot risk a rinse and repeat occurrence.

"Sooner or later in life, the things you love you lose" - Florence + The Machine

"'Tis better to have had MS Magnet and lost than never to have had MS Magnet at all..." - me

accessible fruit: donut peaches

by Patrick of Caregivingly Yours

(re-posted from August 2009)

Accessible fruit! Who would have thought?

With Patti’s Multiple Sclerosis progression holding and eating some of her favorite foods has become too challenging. As her spouse caregiver, I am always on the look out for solutions and options that can enable her.

Stopping at a road side fruit stand I discovered Donut Peaches (aka Saturn Peaches, aka Angel Peaches, aka Chinese Pan Tao Peaches).

Patti loves peaches. However MS progression was making holding and eating a peach next to impossible. That is until we tried “accessible” donut peaches! They were a hit, easy to hold and easy to eat!

Don’t just take our word for it. Mother Earth News offers the top reasons to eat a Donut Peach:

1. They taste better than other peaches. They're sweeter, with almond overtones.
2. They are lower in acid than other peaches.
3. The pit doesn't cling to the flesh, so it's easy to pop out with your thumb.
4. The fruit's thin, red skin has little or no fuzz.
5. Their small size lends itself to being eaten out of hand.

You just have to like a snack high in Vitamins A and C and only 37 calories per peach.

Thank God when nature lends you a hand.

... and unlike the summer of 2009, this summer they are readily available in the produce section of Giant Food grocery stores at least here in Pennsylvania.


This concludes the 94th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 18, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 16, 2011.

Thank you.

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