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MS challenge for life !!!

Mar 05, 2008 - 37 comments
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music and life

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Multiple Sclerosis

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ms

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brain



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MS patient for years © 2006


Having MS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about MS and it's effects on us; and many of those who think they do know are actually misinformed. In the spirit of informing those who wish to understand...

These are the things that I would like you to understand about me before you judge me:

Please understand that being sick does not mean I'm no longer a human being. I have to spend most of my day in considerable pain and exhaustion and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work, and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it for a week or two, but I've been sick for years. I can't be miserable all the time, in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy, that's all. It doesn't mean that I'm still not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say "Oh, you are sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to.

Please understand that being able to stand for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. Just because I was able to stand up for 30 minutes yesterday doesn't mean I can do the same today. With a lot of diseases and disorders one is either paralyzed, or they can move. With MS it's far more confusing: one hour or day or week or year we may have normal - or almost normal - mobility; the next hour or day or week or year we may be unable to sit, stand, walk, think, remember, or even get out of bed, we may be unsociable or depressed, and almost assuredly we are in pain. We have good days and bad, and during our good days we may truly not "look sick", but we are.

Please understand that making plans other than immediate ones is a **** shoot at best, because we can't know how we will feel or what our physical, mental or emotional condition will be. If we seem to hedge about making plans with you, please understand it's because we truly don't know if we will be able to honor them. The same applies if we have to cancel plans previously made or invitations, even at the last minute - it is not personal, and it makes us as frustrated and sad as it does you! That is what MS does to us, and it's how we must live our lives. It is not just a matter of sucking it in, or bucking up, or psyching ourselves up; believe me if we could, we would!

Please understand that MS is variable - with each person and from person to person. It is quite possible and often all too common, that one day I can walk to the park and back, or bicycle 2-4 miles, or swim 12 laps, or even run with my dog; while the next day I may have great difficulty getting out of bed, walking to the kitchen, or be unable to walk at all without a cane, walker or other mobility aid. Please don't attack me when I can't do today what I did before by saying "but you did it yesterday!" or "you did it before!" Your frustration can not begin to compare to our own frustration. The very act of planning while not knowing what condition we will be in is stressful and tiring in itself. If you want me to do something with you, or go someplace with you... ASK if I can. I may well dearly want to go, but simply be physically unable to do so. Understand if I have to say no today, but please ask me again soon.

Please understand that "getting out and doing things" does not make me feel better and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take these vitamins, herbs, tonics and snake-oil cures will frustrate me to tears and is totally incorrect. If I was capable of doing things, don't you think I would? And when I am capable, I DO! I work with my doctors and physical therapists and follow the exercise and diet plans they prescribe.

Another statement that hurts: "You just need to push yourself more..." Obviously, MS directly impacts muscles and ours do not regenerate as quickly as yours do. Pushing ourselves beyond comfortable physical limits can be dangerous and cause a severe relapse. On the other hand, doing what we can when we can is excellent therapy both physically and mentally... and we do! If I work at a part-time job for 4 hours one day, my fatigue level is greater than yours if you worked a 12 hour day. Many days I can still do anything I ever did as well as I ever did ... but only one thing per day or week or month. Everything drains us and exhausts us exponentially more than a normal, healthy person our age (whatever age that is); our recovery time is also exponentially greater. If I go to a party or dinner and show tonight for several hours and have a wonderful time, I do so knowing with 99% certainty that tomorrow I will need all day to rest and recover, much of it spent lying down. MS causes secondary depression in and of itself; our depression may escalate when dealing with days on end of constant pain and limited mobility or cognitive function. We are NOT tired because we are depressed! We are depressed because we are so tired.

When I say I can't do something because I am so fatigued, please don't say "Oh I know what you mean! I am worn out too, but..." because you don't. MS fatigue is not like any tiredness you have ever experienced, nor has anyone who does not have MS or other fatigue-producing disorder. I know you mean well, but it's irritating to hear because it tells me you don't understand me or my MS at all. I may well be just plain tired - we get normally tired during remission phases just as any normal person does - but trust me: we know the difference, and it's huge.


When we are together, please understand when I say I have to sit down, lie down, get a drink, take these pills, or get into a cool place that I have to do it and do it now! No, I can't walk another 5 blocks to the car, or walk back down the hill I just climbed up. Don't baby me, don't hover over me, don't do things for me unless I ask - we are very proud and never want to be a burden. Our independence, or what we can retain of it, is of paramount importance to us! Please help by listening to and believing what we say we need and act upon it accordingly and as quickly as possible. You wouldn't question a known diabetics request for orange juice or insulin, so please don't question us or urge us to 'keep on... we are almost there!' Not unless you are prepared to a) carry us the rest of the way or b) call 911. MS does not wait, nor does it forgive... when we say "please ... now!" it means now.

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my family and friends suggest something at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even markedly helped, all forms of MS the world would know about it. If you still insist on promoting 'cures' to me or giving me 'this will make you better' advice, do so; but understand I won't rush out and try it though I may well continue to research it on my own and discuss those findings with my doctors.


In many ways I depend on you... people who are not sick... I need you to visit with me when I am unable to go out; sometimes I may need you to help me with shopping, cooking or cleaning; sometimes I may even need you to do those things for me. I may need you to go with me to my doctor appointments to help me remember and understand their direction, or I may just need a ride. I need you on so many different levels... as much as possible, treat me as normally as possible, enjoy me and allow me to enjoy you as much as possible, and.... as much as it's possible...

I need you to understand me. !!!!



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by Rena705, Mar 05, 2008
BOY DOES THAT HIT THE NAIL ON THE HEAD!!!  

I wish we all had a copy of this to hand out to all our loved ones just so, for once, we wouldn't have to explain AGAIN, one or another of these issues!

My hat is off to you...I Understand...

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by PSG, Mar 05, 2008

   I think this the most wonderful thing that I have ever heard, I have always wondered how to put it into words and  you just explained it perfectly..........  Thanks

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by athlyn, Mar 05, 2008
What great insights. It can be so frustrating trying to deal with others' misconceptions. I've had a spine problem for years and your part about: "you just need to push yourself" really hit home. I've had people telling me for years that if I just would get more exercise I would feel better. What they don't understand is that with many chronic health conditions, exercise isn't a cure-all. In fact, it can aggravate existing conditions. These conditions won't go away simply by becoming more active.

It's hard enough to deal with chronic sickness, even harder to deal with people who don't understand what we go through and who then make insensitive remarks.

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by nuggetone, Mar 05, 2008
I will pray for you!  And the way you expressed yourself was well done.  

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by DON439, Mar 05, 2008
Thank you all ... You are the cyber family and  DO understand.

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by petra49, Mar 05, 2008
As a diagnosed M.S i cried while reading your beautiful letter it is spot on. I will print it out and keep. Thank you for sharing your thoughts.

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by Heather3418, Mar 06, 2008
Don,

You speak for so many of us.  But you also speak for people with all kinds of disorders.  What a powerful statement you make.  I intend on copying this, if you don't mind and handing it out to a few of my relatives that really do NOT understand.

Thank you...your words speak volumes to many..

Heather


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by spastic, Mar 06, 2008
Don,


Thank You for such a beautiful letter.  It made me cry.  It is so honest and sincere.  You are so right about the cyber family, we are here for you night and day, and we love you no matter what, because we are family. I would like to have my husband read this so maybe he can understand this a lot better.  You are a wonderful, articulate person, this definately should be published!

Lots of Love,

Ada

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by funmonkeytoes, Mar 14, 2008
Don439,

I would like to have everyone I KNOW read this.  I have been suffering (lots of suffering) with MS for eight years.....probably much longer, but I didn't know what was making me sick before all of the poking, prodding, and MRIs.  I thank you for putting so plainly into words what I try to tell people, often times without success because they keep coming back with the same [well-meaning] advice.  It is truly, truly agonizingly frustrating to have the people closest to you not understand you anymore.....sometimes to comment that you should be "trying harder".  Those words are incredibly hurtful; wouldn't they think if there was something you could do for yourself to make YOU better...you'd do it?  Well, I could go on and on commiserating and agreeing with your words, but I'll just say thank you and wish you energy, happiness, and love. I look forward to knowing and hearing more of your experiences and sharing mine with you.

Funmonkeytoes (Debra)

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by debcts, Mar 31, 2008
AMEN, AMEN, AMEN!

I was  a vibrant person, alive with energy and dreams of the future. Everyone I knew said I was so much run to be around. I always had people coming to visit me and hang out for conversations.  I had dreams of being successful and conquering the world. I had drive and ambition. I had high hopes like anyone elsewho dreamed of a life of fun and happiness. Then one day something happened and my life changed. It was years before I found out what took away all those aspirations I once had, My life as I had envisioned it was gone and this person I saw looking back at me in the mirror was no longer the person I once knew. Suddenly my hopes were different, they changed in an instant, and I didn't know what happend. I couldn't understand why I wasn't able to do, be, say, and act the way I used to. MS

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by Vicki68, Apr 06, 2008
I'm new to this board and came across this post.  Wow, you have said what I have been trying to explain to my friends and family for years!

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by wilmawatson, Apr 17, 2008
my husband says i am not tired from the ms because my nurologist told me i was in remission, if i am in remission im cured i have it but its in remission and i should feel normal.  is this true am i a lazy unmotivated person.  please some one give me an answer.

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by Fluffysmom, Apr 17, 2008
Thank you.  I am undiagnosed, but am arriving where you are, and I was crying as I read, because you speak what is trapped inside of me; the uncertainty, my humanity, desire to be understood, the need to respect what my body tells me, the need to have others respect this, the wish to communicate this to others.  Undx, I can't hand out copies of this great statement, but I feel better knowing that you, and others, speak out what is trapped inside me.  I have steadily lost the ability to do the things I did before, and my ability to make plans is shaky, but my closest friend tries to understand.  She sent me to Palm Springs for a week to relax and do whatever I could or wanted.  I had a good week and did stuff a few hours a day, and then planted myself on my bed with books and music and water.  I ate sandwiches and salads, and no one was there to tell me "go to water aerobics" when I couldn't drag myself out of bed, or to say I needed veggies when all I could do was slap some almond butter on bread and open a bag of sliced apples from Costco.  My doctor's numbers were programmed in my phone, and I checked with my insurance about what to do if I needed to be seen down there.  It was liberating and reassuring.  I will print out your statement, your manifesto, and keep it to help me find the words when I need them, and to remind me that I, that none of us, are alone.   Merci, gracias, danke, etc.

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by DON439, Apr 17, 2008
Hope you feeling better soon.we get normally tired during remission phases just as any normal person does  but trust me We know the difference, and it's BIG ,huge.



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by worrymom766, Apr 18, 2008
I am new here and would like to know how I can print a copy of your Journal entry.  My whole family needs to read it since my son was diagnosed with MS last year and none of us know anything about the disease.  Bless you for helping me to understand.

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by LLWB, May 01, 2008
Wow, What a wonderful, inspiring post. I have degenerative disc diseae, fibro, and type 2 diabetes, among other things. Your post hit the mark so well. Most Chronic illness could substitute instead of MS. I rarely plan things in advance anymore, as friends don't understand cancelling aat the lat minute. On Wed I might feel well enough to say yes to a Sat plan, but by Sat am lucky if I can get out of bed.

Can you copy & paste this to the forum? (I don't know how!) I thing everyone would benifit from reading this......With thanks, love, and prayers to YOU, not your condition.tearfully, Maggie

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by burby6867, May 01, 2008
hi i am new to the board and would like to say that letter was beautiful. i now understand what my sister has been trying to tell the family. i have a younger sister who has ms and for a while the entire family including myself did not understand the disease. it was not until i researched it and spent more time with her and went to her doctor visits that i began to understand what the disease was and what she was going through. but my question to you is what is remission that is the only thing i have yet to get a clear understanding on. no one has been able to fully explain ms remission to me.  will there be a time that she will get better or will the disease slow down.

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by DON439, May 01, 2008
MS can progress steadily or cause acute attacks (exacerbations) followed by partial or complete reduction in symptoms (remission). Most patients with the disease have a normal(?)  lifespan.
Every patient with MS has differential symptoms,for some very lite and other worst .



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by flowerfloosey, Sep 29, 2008
This is amazing. It is exactly how I feel....with your permission, I am going to personalize it and give it to my family and friends.

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by DON439, Sep 30, 2008
I have put it also under my bookstore www.lulu.com/filikos

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by montrealmoon, Jan 25, 2009
Thank you.  I don't have MS, but I have post polio syndrome, along with other debilitating illnesses which cause me great fatigue, weakness, unbelievable, indescribable pain, for which I must daily take morphine, and I must either use a cane or my electric wheel chair.  I also have days when I must stay in bed, and there are days when I will sleep all day.  I go through exactly the things you describe.  I, like some of the others here who read your letter, cried, especially when I read the parts about those who told you to go just a little further-that has personally caused me to collapse several times, myself, once in a store, once in a parking lot.  And again when you were speaking about when people say you seem like you are better as if you are getting over a cold.  I know in some ways it is fear on their part and lack of understanding.  They want us to be better, so they take false hope when they see us seemingly appearing more normal, but it can be so irritating.  I find one reason it is irritating is that  I know that tomorrow I will be worse off most likely because I will over do it today to try to please my husband who is enjoying my so called improvementl Or I will over do it myself, even if he isn't home, if I feel better, then pay for it for two days. I think MS and post polio have some parallel signs and symptoms, although they do diverge down the line, of course.  Best of all to you, friend, and thank you!

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by truelove47, Feb 18, 2009
                                    THANK YOU SO MUCH

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by ChunkyMonkeysMommy, Feb 18, 2009
Wow, thank you so much! Knowing how this disease affects me, I'm sure that this took you a while to think out and write out. I know how difficult it can be to think of the words that you want to say and I must say that you've done a WONDERFUL job of expressing all of my frustrations. If you don't mind, I'd love to share this with others, with your permission. Thank you for sharing this!

God bless!

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by DON439, Feb 19, 2009
start with your family members first.The family is always the "home-base" for people to understand what MS means,and feels.Just you have to give "power" and power-filling   to your mind.

Have a good blessing day,
Don

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by truelove47, Feb 20, 2009
Don,   It was so wonderful to read everything that I have been feeling and going thru for quite a long time.

I asked my husband to read what you wrote, and he totally agreed, if I could write, this also would be my thoughts

He seems to be the only one that understands what I am going thru with this.

I wanted to thank you so much for putting this story on paper.  You are truly gifted in writng and I bet in life's curves.

Bless you and thank you again for sharing this,              Linda (truelove47)

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by rendean, Mar 07, 2009
Don,
You have so eloquently captured the essence to any chronic disease but are definitely on point when it comes to MS. I have my tentative diagnosis, to be confirmed within the month. Like others before me, with  your permission, I would like to share this with my family and friends.

I'm new to the forum and don't recall seeing your name before. You express your ideas so well!  I hope that your remissions are numerous and the fatigue days minimal.

Thank you for sharing this wonderful piece of writing . You have provided so many of us with the "perfect" explanation of what is wrong, something that is so difficult to put into words, yet you did it and did it amazingly well!

Rendean




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by DON439, Mar 08, 2009
Rendean ,
We want to show to the healthy people,how we feel and react,and to how to treat us emotionally,and physical.
Life is just BEAUTIFUL ,and no deceases stop us.

Have a nice blessing sunny day,
Don

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by Lulu54, Jun 23, 2009
hi all,
I just saw Don's reply on another post and see he is in our midst again.  This is a perfect time to dust off his classic and share it with all of you who are struggling to communicate with your family and friends how this MiSerable disease is affecting you.  Thanks Don for sharing this post ....

Lulu

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by truelove47, Jun 23, 2009
Everytime I read the post  "It blows me away"      It is soooooooo    Perfect!!!!!!!!!!!!


THANK YOU    Linda

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by DON439, Jun 23, 2009
Summer time is Vitamin D ,and restless,pain symptoms .Enjoy the summer with caution please.

Don

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by shaw63, Feb 05, 2010
I am new to this post also. My husband and children have understood the whole "bad days" and "better days" for two years now. I think it is because they take the time to reflect on how I used to be, think, act etc...They are such a blessing to me because of that. They are the ones always reminding me I am not the same and MUST rest before I feel lousy, not after! Friends are a different story. I get thru the pain of letting them try to "fix me" by always remembering they  are afraid. I know why I feel the way I do. They can't get their head around how I can feel so bad and still be standing. Sometimes I think they stare at me just so they can come running when I lose my balance. It is a huge struggle for them to watch what I go through on a bad day.I often find myself trying to reassure them instead of the other way around.  Don, Thank You so much for being the voice for so many. You will be in my prayers, and the rest of you also. God Bless, and wishing all of you much energy!!!    Stacey

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by DON439, Feb 06, 2010
Life is If we lose ourselves in the whirlpool of reality and in the brutality of life and problems(MS), whether it’s time to redefine who we are?
THANK YOU Stacey  for your good words !!!
Getting stories from other patients,men,women,couples and families,can give me soul straight  to see life with positive  way to recharge the spirit,our society is full with positive,neutral,negative issues,but only God provide us with the correct knowledge about Good blessing life..... Hope for the best to come to our world one day...



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by MisterTimC, Oct 25, 2010
Wow! I've been feeling this way for years, and couldn't put it into words. I don't have any kind of dx yet. But, Wow!

Thank you!
TimC

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by DON439, Apr 06, 2012
MY FAMILY IS STILL NOT KNOW HOW MS HAS DESTROYED ME,HAVE BOOKS AND POSTS GAVE THEM BUT NOTHING !!! I BELONG TO THE MS PLANET . NOT EARTH !!!!!!!!!!!

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by meg321, Dec 19, 2012
Hi Don,

I just dug this up again and read one more time and made a copy so I will have it handy...I lose so many things.
I hope you are doing well ....and thank you again for writing this for us.

hugs, meg

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by beachbaby2, Feb 24, 2013
This was written so beautifully!  I'm copying it for my family.  Thank you so much!!
Beachbaby

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by marie20062010, Jul 02, 2013
I am very glad I came across this letter. I do not have MS but my boyfriend was diagnosed 3 weeks ago and I don't want to be one of those annoying pepole you refer to in your letter. I just want to be there for him like any girlfriend would. This was very helpful. Thank you!

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