A Challenge - what do you say?

[Lulu54]

I get double duty from my massage therapist - she and I talk extensively during my treatments and usually it involves self-improvement, well being, and a psychological component.  It's quite the bargain.

Today she started immediately wanting to know what I say to myself and how I view myself.  I had booked an 1 1/2 hour appt. so I had lots of time to think it over.  :-)  

Her point in the question was to challenge me to stop viewing myself as having MS - to not let my disease be the underlying motivation for everything I do.  To get to that next level in the acceptance of a disease I have no control over and coming to peace with it.

We have all heard the saying ""I have MS.  MS does not have me." and we understand the intent of this message.  The application of its message though is a totally different stretch.  

So I'm wondering and still pondering how I can change my self-talk into something positive that allows me to escape the self-imposed  identity of someone with MS.  

I need to have a long, hard talk with myself about this and it makes me wonder what you say to yourself?  What self-talk got you to the next level of living with MS?

I'm trusting you all can follow my thinking here and will have words of wisdom to share with me and others.

my best,
Lulu

[saveone]

Well, I have a therapist, a clinical psychologist, who I can rant and rave to, get everything off my chest and then go home and start over. :)

In the beginning of searching for a dx I was consumed as some others to find every piece of info I could.  I needed a plan.  Having a plan always made me feel better, in my work, or my finances, etc.  I don't like not being in control. (Sorry Pastor Dan :) Then I realized it, whatever IT is is, was/is so unpredictable I couldn't control it and the doctor appts scheduled at their convenience, that a plan as I knew it just wasn't going to work.  

It was at that point, months into it, that I just quit worrying about it.  A dx would be great because it would allow me to plan some type of treatment or such but as for the effect on my daily life...my life is what it is and I can't change that.  I do however, work to improve it.  I eat right, need to exercise more, keep my doctor appts, advocate for myself, and come to the forum to find some peace.

"Today is the beginning of a new day.  You have been given this day to use as  you will...when tomorrow comes, this day will be gone forever, in its place is something that you have left behind...let it be something good"

That is taped to my computer with  "Be strong and of good courage, fear not, nor be afraid..for the Lord thy God, he it is that doth go with thee: he will not fail thee, nor forsake thee."  The Bible.

The first inspires me, the second comforts me.  I have had these two pieces of paper for years and have taped them to multiple screens, at work or home and I have just carried them in my wallet to look at.  I can't bring myself to replace them.  They are like old friends. They have helped me through some tough times.  This is what works for me.

terry

However, my therapist wants me to try to develop a plan and bring it back for him to review.  He thinks it would be "interesting" to see what I would come up with.  =:0)  Yes those are my horns, I am afraid I might suggest a weenie roast for the neuros and invite you all.

[Lulu54]

On my fridge is a magnet with an ancient proverb that reads -

A misty morning does not signify a cloudy day.

I see this statement every day when I reach for the milk for my morning cereal.  I'm working on making this reminder stick with me each and every day.  :-)


my best to all,
Lulu

[Charley123]

These replies do help.  I've been in the MS pits many times.  My life had been very active and now I cannot do what I did before.  I try to keep focusing on what I can do today..or this hour or this moment and realize if I give into constant despair I will remain frozen in it.  I keep a folder of positive affirmations around.  I am also a Jack Benny lover and have found a free source for the really old radio shows on the internet.  He has always made me laugh and anything that we can do to keep laughter in our lives helps.  I also agree that the losses of our lives need to be grieved.  I worked for Hospice for many years and grief counseled families and others.  It's so different when we go through this ourselves, isn't it?  
So, any help that we get from others to get through what ever it is that we are going through, makes it less fearful.  Some days I need training wheels..some days I don't.
I've used meditation, spiritual guidance, my supportive friends (all of you included)..to help me when even the training wheels fail.  Right now, I don't know what else to do.  Charley.

[Lulu54]

thanks everyone for the honest replies - I hope this helps everyone else too!

be well,
Lulu

[HVAC]

I would like to wake up one day soon and not think about having MS. I have proven to myself I am the same person as before the diagnosis. I am still very active.

Actually I exercise more and eat better. People say I look better than I ever did.

I have other illnesses which took sometime to adjust to but I have. I know I will accept the MS as well. I can't forget those illnesses either because if I forget about them and do not put treatment first I am no good to myself or anyone else.


I have a saying on my fridge. "Its not what happens to you in life its what you do about it". I also have "Play the hand you are dealt".

I hope I can use my experiences to benefit others.

Alex

[supermum_ms]

Interesting question, i've been wondering how i would answer and truth be told i'm not sure i'm happy with my answer. Without knowing my dx i think MS is consuming my every thought and wakful moments but not in the 'omg what will become of me, my life is ruined [insert depressed statement here]' comsuming. I'm talking about finding out every little bit of research, the good the bad and the ugly so that i know what the heck MS really is and what this thing called MS means to me. So, I'm consumed because knowledge to me has always been empowering, i am not freaked out by the news, I feel more incontrol within this uncontrollable body, and i want to know because thats how i deal with things usually. I actually dont think it is that unusual for a person with a condition to know more than the 'experts' because its not theory to that person, its their reality and for me a lot more reliable.

So MS has me for the moment, and i will ride it out, as i do with everything thats been thrown at me but i dont think its necessarily a negative thing, sometimes it is empowering to be consumed by the process and of self discovery. I do know through this experience that i am stronger than i ever imagined, and thats not really a bad thing to discover about your self.

Cheers......JJ

[ErinZoe23]

hey lulu! As for only knowing i have ms for a few weeks or so i dont let it really get to me. Dont get me wrong I have fallen and been broken by the disease but for the most part I kind of make it into a joking manner. Like when i run into things i just laugh at myself and call myself a dumass or when I cant remeber things I just laugh and say to myself or family probaly something I didnt want to remember anyways..I dont know i just always joke with it cause I'm kind of alright with having MS after all the other things it coud of been MS doesn't really sound to bad  to me...I just live day by day now enjoying eevrything and having a blast I still do the same things i did before and actaully alot more healthier  besides the ms part lol So yeah i tell myself it's my life and it all depends on how I want to live it and what kind of person i want to be  the same way i would think before ms

[uk2]

lulu
I guess we all go through the stages and i think when we dont get dx it gets stringed out abit but i think i'd still have the same old problems even with a dx not that stops me seeking why i am like i am after being so active for so long and i hope a dx will bring the right drugs so i can get my life back but its not who i am and i need to move past that and focus on doing as much as i can when i can.

good post. sam x

[uk2]

You have a good outlook on life, i used to be like that when i first got ill but all this with my ex has dragged me down i need to find me again!! Its hard on the bad days though and i feel i have to find myself again but really i never went anywhere! I just function different now! i find new things i love like hydrotherapy and my faith whatever works i guess. Your a breath of fresh air x

[PastorDan]

One word: bedsores.  No, we need to be as physically active as we can handle, because that's the way we're made.  I have days, though....

[borntolose102]

As for me it really doesnt phase me that much. MS is kind of like a cousin of mine. Doesnt exist till it bothers me. I have been dealing with it for so long that I compare it to going to the bathroom. I honestly have more bad days than I do good, but seriously after awhile you dont look on it and frown, you are thankful you are breathing. Things could be so much worse. You cannot adjust your life to satisfy your disease. Whining and saying I cant do this because this is how I feel or the fatigue is too great. That is just another excuse to procrastinate. If you didnt have MS you would find something else to blame it on for why you dont feel good and also why nothing gets done. MS is not a conversation piece of mine as to why I cannot do something nor is it an introduction to who I am. It's something that has happened and oh well. Smile and deal with it. Dont make it the focal point of you..that is truly a waste...

[MsWobbles]

Lulu,

I just figured out a way for me to have my condition instead of it having me:  I could fully outfit my bedroom so that I have a huge flatscreen TV on the wall facing my automatic adjustable bed, have a computer desk right there at bedside so the monitor and keyboard could be pulled over my bed on a tray, with a VCR within reach for use with the TV,  well-stocked bookshelves within reach, a small frig nearby, a phone etc.  Then to my condition I could defiantly say, "Ha! I have YOU rather than you have me!"  Because then I could just stay in bed all day, conserve energy, and yet still lead a somewhat active life connected to people in the outside world while doing thing I enjoy!!  And the masseuse could come to me!!  

Lol!

WAF

[MsWobbles]

I'm still a Limbolander, but whatever it is I have at this point certainly has me!  I don't know how to think it doesn't when I feel so weak and lack the energy to do much of anything!!  I trip over things all the time, put glasses down wrong so they spill (as in grape juice all over the carpet) etc.  It has me for sure!!  

I do agree with you about massages though!!  I feel so much better, more chilled out etc. after mine.  I stay with hour-long Swedish light-touch massages because I have found that when I book an hour-and-a-half massage, usually the masseuse just ends up spreading an hour's work over an hour and a half.  Like you, I get double duty from my massage as my masseuse is also a wonderful person and we spend the whole time talking, bouncing from one subject to another.  The sad part is she will be leaving her job for school this fall.  But I encourage everyone here to get massages - they seem to cut down on the muscle spasms and I have a much better week following one!!  Look for a locaI massage school where you can get a cheaper massage. I use a massage school where the massages are very good, but are greatly discounted.  The masseuse I use there is fully licensed, but she is way cheaper than the general price elsewhere.  She is a gem and I will miss her!!

WAF

[Heather3418]

I simply say, "The MS."  I never say "My MS."  I have been trying to do this since the diagnosis of MS, in 1995.

I realize that worrying about 'tomorrow' is not going to change the course of the MS.  I truly believe that God will not put on me, more than I can bear.  There are even somedays that I forget about the MS.  It's not often, but it has happened.  I rejoice on those days.

Heather

[Lulu54]

Julie- I fell good too, but fortunately not often!  :-)

Everyone else,
The answers here really touch me in a variety of ways. I'm not looking for validation of myself, but wondering if you all have faced this type of realization as well.  

It was a good week because I had a wonderful session with my neuro, which I feel almost guilty about sharing because so many of you have dinks as doctors.  Don't ask me what a dink is .... I haven't a clue ,but it isn't good.  I will post something about that eventually because he made a lot of observations and comments that I believe are worth sharing.  And he began my week by challenging the health of my mental state as well.  

Then I had three days of being away from home, DH was busy with work and I could indulge myself with doing what I wanted to do.  That doesn't happen often in any partnership.  Checking into the hotel a young man stopped me and declared that he had MS.  I had the book Managing the Symptoms of MS on the luggage chart and he had spotted it.  He came back to my room later with his email address and other information, and included the "Ms doesn't have me" statement on his note.  So that continued my thinking.

To wrap up the week with the lengthy session with Anita was wonderful.   90 minutes would be too much phsycially if it were Swedish massage, and pounding on me.  But she does postional release, which is akin to accupressure and is a very soothing, almost passive treatment.  Because of the long time, she finished with 15 minutes of sacro-cranial work, which put me to sleep.  There's nothing like being attuned to the rhythms of our own bodies.  AAAAHHHHH.....

I should share that Anita has been there with me from the beginning of my falling apart after my heart attack (physically and emotionally), and she can read my moods and needs almost immediately. She was part of my therapy 5 months before I got my MS dx and knows me as well as friends who have been with me for 50 years.It is a relationship built on trust and I treasure it immensely.  

I have said it before and will say it again and again - if you can afford the cost since insurance doesn't cover it, take the time to find a good massage therapist to help with the MS issues.  It is worth it.


So perhaps that sheds some light on why I am ruminating over this - I'm appreciative of your willingness to share your own experiences here.

my best to all,  I feel good! :-)
Lulu

[PastorDan]

HAHAHA!!  I fell good just yesterday!!

[Sarahsmom46]

I am reading the responses and they are wonderful.  I hope others chime in soon too.  

As for my iinsight, which is a few posts up, my silly brain and fingers kept typing "fell" instead of "feel".  So, I'm not waking up to James Brown singing "I fell good"  because I'm not thinking that there is anything good about "falling" - LOL!  I Feel Good! That's what I am saying to myself.  

Rereading that post made me wonder if the typo was a Freudian slip or what.  Anyway...I feel good period.  

OK, Please someone else come up with some great responses to Lu's post.

Julie

[sllowe]

This must of been an interesting 1.5 hrs.

For me, it's a matter of what comes 1st and the MS falls in line after that.  I'm still busy being a mom, a wife, an employee and so on and though the MS tries to take 1st alot, I keep shoving it down the pole.  It's the only way I get through the day.

This is a good topic

[PastorDan]

Super question, young lady!

Now, how to answer?  My perspective is obviously different from yours, being undx, male, etc., but hey, we're both Buckeyes and believe in God, right?

Many, many times I've stood beside or held the hands of persons or families coping with the loss of a loved one, either impending or recent.  I've also spent countless hours on the phone or sharing snacks with someone who was trying to cope with circumstances created by forces outside their control, the consequences of which were equally beyond their sphere of influence, at least as far as they were able to discern.

Let me be totally honest here.  I've spent as many hours with my most difficult client, the guy typing this reply, going over the same or similar issues.  For me, there are a couple of approaches that have worked together to help adapt my own perspective.

First, there is a strong thread in my background of persons whom I considered "control freaks."  From the micromanaging new and inexperienced supervisor to my first wife, I have sometimes been confronted by persons whose need to direct everything and to allow nothing to occur without their foreknowledge and deliberation was simply maddening.  In the case of most, the obsession was maddening not only to those whom they sought to control, but also to themselves above all others.  I know that we often behave in ways that we have learned, but we also sometimes have the ability to perceive the faults of others with sufficient clarity that we can see and correct similar attitudes in ourselves.  Because of my experience, I can truly say that I've learned to let go when the reality is such that I have little or no choice.

Above and beyond that, I have come to the most important realization of all, one that is central to the concept of letting go.  I am not the center of the universe.  Life is not about me.  Not even my own life is about me.  It is about the One who gave me life, and there is much about His plans and aims that I have no ability to comprehend, much less influence.  Isaiah speaks of His thoughts and ways being as far above ours as the heavens are higher than the earth.  Job finally sees his own sufferings in the light of God's omnipotence, omniscience, and omnipresence, and decides to zip his lip.  Jonah becomes fish puke, and reluctantly says to the One who directs the fish, "All right, already!  I'll go where you send me!"  Damascus still has a street called Straight, and in my spirit, I have found it to be a wonderful place for contemplation of my role between here and the New Jerusalem.  It is a bit part, nothing more; top billing belongs to the Lamb.  After years of wandering in the wilderness of willfulness, charting my own path, I've finally figured out that I can't chart a day without bumping into something.  A lifetime is one of those things beyond my comprehension.  Instead of directing my own steps, I let God.

Let go, and let God.

Now, having said all of that, I like what I have seen of your approach, one of engaging the enemy on the field of battle.  Your deliberate involvement in activities such as this forum shows that, whether or not you've reached that place of acceptance, you're not going down without a fight.  The challenges that you face each day, each month, and each year will count for something, something of inestimable value to countless unseen souls, long after you have received your wreath at the end of the race.  MS, cardiac issues, and caffeine-driven preachers notwithstanding, you run well.  In short, LL, you are a child of God, making the most you can from the hand you’ve been dealt by a world that has yet to see how to order itself according to His principles.  You may be short, tall, redheaded, green-eyed, left-handed, or speak only Portuguese, and you may have MS, ALS, CHF, ABC or XYZ.  Your neighbors might win the lottery, and your grandchildren could grow up to be neurologists.  Regardless, the life on your plate is the one to which you will sit down and feast.  You are who you are, and that includes quite a lot besides any physical ailments.  After all, those things, things we can see, are only temporary.  The things that are unseen are eternal.

[Sarahsmom46]

I get it, loud and clear.  Or at least I hope I get it.

One thing we all have in common is that we have to go through the grieving process of being told we have a chronic progressive illness.  Perhaps you have heard of the stages of grief or DABDA (denial, anger, bargaining, depression, acceptance).  We all go through the stages maybe some quicker than others, but eventually we do end up at acceptance.  

However you decide to get through this process depends on the resources we have around us.  Some go to therapists, some go get long massages, exercise and the idea and even self-talk works great.  So no matter how we get to that level of acceptance or how long it may take, whatever helps us move forward through the stages is what is most important.  

As ror me, I wake up every morning to the song by James Brown "I Fell Good".  Then I look in the mirror and even though I look and fell like you know what, I look in that mirror and say "Yep, I feel good and today is going to be a great day"!  Sounds corny but it works.

Thanks for bringing up this interesting concept up.  And, I'm jealous about the 1.5 hour massage.  My therapist wants to schedule marathon massages too, but I didn't think I could physically handle it.  Butl, now I just might give it a try.  

Have a good rest of the evening.

Julie

[ShadowsSister]

We have talked before about this, but not in deapth.
For me it took a lot of looking inward, I finally asked myself, who would I be if I didn't have MS.? for me the answer was just who I am now, on the inside. I just do things different and pay more attention to what my body needs like more rest, less stress,(if possible}.
I think MS stopped me in my tracks and made me look at the things I NEEDED to change and how to do that without throwing out the good parts of me.
I don't feel any different inside where it counts except I am stronger, more honest, and not scared to show my true feelins and I like to think I deal with stuff when it comes up and than try to let it go.
It is different with everyone, we come from different places and stages in our lives. One of the tricks is to believe that in each moment we all just do the best we can, sometimes it's enough and other times we fall short. But we just never give up.
I am sure you will figure out what it means to you to not let MS control who you are as a person, so far I think you have it handled, but only you knows that for sure.
{{{~!~}}}

[Sailorsong]

That is a very interesting guestion! I think it was fairly easy for me to reach the "I have MS, MS does not have me." point because my dad had MS. This made a great example of how to deal with the thought of having MS. For the last 40+ years of his life he wore braces on both legs and used a cane. But despite this he reamined very active in his life. Many a time we went golfing, bolwing, etc. together. And even when he was 80 years old together we build a porch with a ramp on his house as he then needed a chair to help him get around a lot of the time. This made a good example for me of how NOT to let MS get you down. To this day I still try to keep somewhat active and push myself to do things. Right now I am in the process of remodeling my entire house. It may take me a longer to do things because of my health problems, but I just keep plugging away at it.

Dennis