MS Life

I’d like to direct your attention to Indaba Love, a website that was created out of love while working on a song geared toward raising money for Multiple Sclerosis research. Bianda, an online super-group of active Indaba members, created an alternative platform for their work while our site was under construction for its relaunch this past summer. Now that Indaba Music is fully operational, Indaba Love remains out in cyberspace as a promotional tool for Bianda’s cause, and as a profession of love for Indaba.

Bianda (the letters of “Indaba,” rearranged) contains 16 talented Indaba members—artists who truly embrace and embody the Indaba Music spirit.  It’s a group that believes in the idea that music can make a difference.  They work to spread goodwill, and on a more specific level, raise money and awareness to battle Multiple Sclerosis.  They currently have ties with the National Multiple Sclerosis Society (a foundation that provides support for diagnosed individuals while pursuing research for prevention treatment and cure), the Make-A-Wish Foundation (a well known organization that helps realize the wishes of children with fatal illnesses), and the Smile Train (a group that works to provide cleft lip and palate surgery for children in developing countries).  In addition, the group is backed by headphone company Skullcandy and the publication Electronic Musician.

Bianda was founded by Shyface, an Indaba member who wished to make the world a better place through his musical talent. He reached out to one hundred hand-picked fellow Indaba members, imploring them to help create music with the intention of donating every penny to charity. Shyface was soon overwhelmed by a flood of responses from artists who wanted to be involved.  “My room turned into a NY Stock Market full of action,” says Shyface.  “Messages, e-mails in different accounts, texts, and it was all coming from Indaba Music members who had made the decision to jump on board without compensation.” They got right to work on a piece as the group was whittled down to 16 core members, eventually forming the virtual band Bianda.

Bianda decided to set their sights on fighting the disease Multiple Sclerosis (or MS) after the passing of beloved Indaba member Annie Thorogood.  It seemed particularly appropriate, as band-mate “Momma” Magdalena Obert also struggles with the disease.

Multiple Sclerosis afflicts between 2 and 150 people per 100,000.  It affects the body’s ability to send information (via the nervous system) from the brain to the spinal chord, and can be extremely disabling.  There is no known cure, nor do scientists have a firm grasp on how a person can contract the disease.

Bianda’s song “Indaba Love” is an eight minute epic.  The tune seamlessly sweeps between feels, jumping back and forth between hip hop and rock, with some world music flavors, showcasing the talents of its amazing contributors.  They plan to release it in a campaign with a video and a launch party, with all the funds going to the National Multiple Sclerosis Society.  “Indaba Love” was released in December, and they have more projects that will benefit other organizations currently in the works.

Peace, Family and Love are common ideals spread throughout the pages and profiles of Indaba Music. Time and again, our members prove that while they are motivated to succeed and make great records, many also harbor deep-seated desires to spread peace and goodwill outside the website’s borders, while supporting the Indaba family.  Bianda and their Indaba Love movement is one of the many examples of artists from across the globe coming together in the Indaba community to share, make friends, and work towards change for the better through music.

Check out all of the users that make up BIANDA:

Shyface
BINK
MK2
Dale Crowley
Mike Stone
CherieO
Magdalena Obert
Solid State
Robyn & VJ Phiri
Dubbz
Stephen May
John Faustus
Ben Evolence
SebassBeats
Akara Etteh
DJ Shyine

The last few weeks have been difficult.  I have Remitting Relapsing MS.  I thought for awhile there as did my doctors, that perhaps I had moved on to another stage, but I don’t think so now.  The signs are all back that I’m having a relapse.

It starts out with me feeling out of sorts.  I feel crabby and impatient.  These things are unlike me.  Then I start feeling sad and depressed.  I get so down and out and I hate it.  No matter what I do to try and get out of the depressive state, I lose interest in it very quickly.  Suddenly, every thing that I spend my time doing during the day becomes boring and pointless.

Cabin fever sets in with tremendous force.  I want to go out.  I don’t care where I go as long as I’m out of the house.  I feel trapped in the house, like a bird in a cage where no one ever opens the door.  I go up and down my cage looking for something to do with myself but can’t find it within the confines of my environment.  So I decide that perhaps there is something in the great outdoors to amuse me and get me out of the doldrums.  The only problem is, is that I know I can’t do it, at least not for long.  I can’t walk for more than a short distance without becoming fatigued and having to stop every few steps.  I don’t have my scooter or chair with me because I don’t have an adaptive vehicle and can’t afford one.  If I go out, it has to be by the use of my own strenth, which I don’t have, particularly now.

I can drive!  But no, that can be dangerous as well.  What if I have a sleep attack as I call them.  Not only that, where would I go?  Once I got there, I would still have to get out using my own strength.  So then what?  Just drive around?  My psychiatrist told me last week that I disassociate.  What this means for me is that I suddenly don’t know where I am, where I’m going, or how I got there.  The same thing with conversations.  Suddenly I don’t know anything at all about what I’ve been talking about.  Nothing.  Not even with the help of someone trying to help me remember by recalling what I just said.  I still don’t know what the conversation was about or why I was having it.  My psychiatrist had a good way of explaining it to me.  He said that sometimes when you’re driving and you’re thinking hard about something, you suddenly become aware that you’re home already or wherever but you don’t really recall the drive there.  You’re just on autopilot.  So going out driving around is not a good thing. 

Next comes the varying degrees of fatigue but always more intense than normal.  It is unrelenting and everything becomes an arduos task.  Vision becomes a problem.  I’m seeing double these days.  Lastly, the dizziness and the “boat walking”.  Boat walking is what I call it when I feel as though I’m walking but the floor is moving beneath me.  My equilibrium is all off kilter.  My drop foot becomes more of a problem.  If I don’t use my walker, I go reeling into the walls. 

So here I am, sitting here underneath the blanket of my disease, but trying to crawl out from underneath.  What do I do?  How do I handle this?  I handle it!!!  That’s what I do.  I don’t give in to it.  I won’t crawl into bed and wait it out.  I try not to land up in the hospital on IV Prednisone.  I cope.  I don’t like myself very much at this time, but I cope.

As difficult as it is, I keep moving.  I keep trying.  I’m afraid of not trying.  If I don’t try, then I’ll give in and then what?  To what degree do I come back from this?  If you know anything at all about MS, you know that with each attack, you do recover but you come back with residual problems.  You don’t come back fully yourself or fully recovered.  Each attack takes a little bit more out of you until one day, I know that I’ll have to give in to it.  I simply won’t have the strength to keep moving.  I probably won’t even have the desire to fight.  But that’s not today.  No, not today.

I will perservere until next time.  Then I will try it all over again, to keep trying, that is until that day arrives.  It’s inevitable for me.  It’s a long process from beginning to end.  By this I mean, that the symptoms come up suddenly, but the process of realizing it takes me awhile.  Self denial?  Probably.

So I’m here.  Today is not the day.  I’m blogging, I’m knitting, I’m writing music. My heart isn’t in it with the exception of music.

I’m tired, so I’m getting off of here.  I’ll try and come back tomorrow.  Today is not the day to give in to it.

I’ve been feeling guilty about not blogging but like I said before, I probably need to see my neuro.  I’m past due.  I may have to go in the hospital for IV prednisone and that takes about 5 days or more.  I don’t know.  I just know that I’m probably relapsing right now and in a sort of I don’t care mood.  You know? 

I have no get up and go and no drive right now.  Music is the only thing that keeps my attention.  People don’t.  I try to reach out to some so that I can come back but I usually come up against brick walls.  Everyone has a life and they are busy.  No one feels like saying nothing we me, which to me is saying a lot.  Do you know what I mean?  The best conversations I’ve had with people or the best communication with people is when two people sit in a room and not say a word.  It’s the perfect balance of comfort and communication.  You don’t need the damn words to say what you’re thinking.  I’ve never been the kind of woman who needs vocal assurances although they are nice when received.

I’m not feeling that way these days though.  Zip, nada, just emptiness.  It’s so unlike me that it frightens me.  I’ve become the dirty socks sitting in the corner of the room that everyone walks around.  At least for right now.

I have such few needs and I get upset when those needs are ignored or denied.  The glass runs empty after a period of intense giving and driving people to do better for themselves and the same for me, driving me to do better.  Sometimes I need nurturing as well to fill up my glass again, so that I can gleefully empty it out.  But lately, I just can’t find any resources to fill me up with.  Tis not a happy feeling.  Everyone feels so far away.

My kids are gone with two of them denying me my place in their hearts.  The other is just young, ignorant and self important although sweet.  David is consumed by work.  My ladies are chitter chatters that bore me although sweet and good huggers, and that’s about it.

My days are like this:

I get up in the morning after about 2-4 hours of sleep.  I always wake up cheerful, wide-eyed and bushy tailed.  I run off to the bathroom and then very carefully walk or crawl down the stairs on my bottom to get to the kitchen.  I head straight for the coffee, my cigarettes, and my computer.  It’s usually around 5-5:30 a.m.

I check my emails and respond to them.  I check my usual web sites.  I then check my stocks.  I usually play a game to see how I’m doing in the “how quickly can I respond to things today” area. Then I set my mind to work on music.  It doesn’t sound like much but all of this is time consuming.  Then around 8:00 a.m., I let the dogs out and call my husband to feed them.  He then goes back to bed.

He then gets up about an hour or so later and gets his breakfast and putzs with bills and stuff before going off to work around 10:00 a.m.  I’m still in my room but he checks in to say good morning and asks if I need anything.  Then off he goes.  The rest of my day continues as it began until around 8 or so when my husband comes home.  The only changes during the day are when I keep letting the dogs out or answer the door to get packages that I’ve sent out for.  The phone seldom rings and when it does, I screen the calls.  If the number is from “unknown”, I definitely don’t answer the phone, unless I’m really desperate to hear a voice.

Once in a while I break the pattern by actually going out to the craft store, or for cigarettes and some shopping.  This doesn’t happen too often.  I usually ask my husband to pick up things on the way home from work.  The other break to the pattern is when I have Doctor Visits.

The end of the day finds me making dinner sometimes, occasionally watching a TV program and knitting.  Usually I’m still in my room.  My husband likes dead people and music.  So after his dinner he does his genealogy work and listens to tunes he finds on the internet that he posts on Facebook.  So we’re off in our different rooms on our computers traipsing through cyberspace.  He stays up till about 12 or so then off to bed he goes.  I’m still in my room.

I continue to do what I’ve done all day until around 2-2-30 a.m. then off I go to the stairs again.  They fill me with terror.  I climb up or crawl up the stairs and then to bed I go.  Tomorrow will be like all tomorrows.  Weekends are no different except that now there are two of us in separate rooms.  I do make time to attempt to clean the house and all the other stuff I should do.

Most of my life is handled on the internet.  I shop there by purchasing clothes, books, music, vitamins and groceries that are delivered to my home by Schwan’s.    I live vicariously through interactions with people on web sites such as Indaba.  My blog is good for me because I pretend that there is actually a person sitting there in the room with me listening to me talk.  It’s make believe.

So in my make believe world, there are make believe people and friends.  They are tiny little specks in cyberspace who respond to my typing fingers.  I lurk in different forums and read a lot of interesting articles on the web.  I rarely go on Facebook if only to check to see if anyone has contacted me and needs a response.  I do a lot of planning on the web.  I host one big event every year and that’s the World Wide Knitting in Public event.  With the internet I get my ideas for themes and purchase supplies.  I contact sponsors through the web and invitations are bulk emailed out.  I shop for gifts for the knitters and spend a ton of money throwing the event.

That’s about the extent of it.  I don’t want to make it feel like I am friendless.  I have many friends but they all are busy with their lives and who wants to hand hold a person with MS?  We can’t do much of anything and we have little to say because we haven’t been anywhere.  Quite frankly, their conversations don’t interest me because I can’t remember who they are talking about and their relationship to them, so I can’t connect the dots when they are referring to someone I should know.  Again, it’s make believe.  I pretend to know when I don’t.  This gets old.  I know my friends love me.  They know I love them back because Thursdays is my one day when I actually go out and give classes for free on knitting and crocheting.  Some of these women have been with me for 10 years now.   Every now and then I plan events for them.  We spend the day somewhere else instead of our usual local.

Primarily, my days are spent alone from morning to night and in one room.  So I get down and out at times because I’m always reaching out to people and they often don’t reach back the way I want them to.  I’m reaching out now as I type this to the tiny little specks in cyberspace who are actual people with their fingers on keyboard such as mine.  Our minds intertwine in a dance with no music.  We cautiously check each other out and perhaps we befriend each other.  But its make believe in a make believe world.

I am here because I have Multiple Sclerosis that causes me to withdraw from a former vital and active live.  I am still that vital and active person given half a chance.  I could do more if I had an adaptive vehicle where I could have my scooter lifted into a van and then arriving at my destination, it would take it down for me so that I could mobilize into shops or whatever.  Have you checked out the prices on these vehicles?  There is no way that I can afford one and I don’t want one that’s so old to have it break down on me because I am helpless to do anything about it.  So I would need a newer one. 

I am not make believe.  I am warm, and breathe air.  I am full of love and compassion.  I like myself.  Others like me.  But I am like the music I write.  I exist, but am not heard.  Indaba Music gives me a vehicle for my music, now I need a vehicle for companionship in the flesh during my long days alone.  Don’t get me wrong.  I prefer my aloneness but only if I have the choice to be alone, not if it is forced upon me.  Lately, that’s what I’m feeling and I don’t blame anyone.  Who wants to hang around with a person who can only sit around?  Okay, I’m making myself cry.  So perhaps it’s time to end this blog. 

Loneliness is the saddest feeling in the world.  I’ve been that way since I was abandoned at 3 years old.  Loneliness is my constant companion and no love can erase that feeling.  It’s a part of my makeup and I know that in part the reason I am lonely is because I create it myself.  I am too afraid to give 100% of myself to any one person because I’m afraid that I will get hurt.

I am here because I am not make believe.  I am a person who needs just like anyone else even if I push people away at the same time I’m asking them to come in.  It takes a person who really knows me to know that as I push away, I’m really begging them to be stubborn and hang around.  My pushing away is just instinctively inbred in me.

I am here because I am not make believe.  I am a musician, composer, poet, craftsman, avid reader, and writer.  I am productive and I lead a good life.  I’m not in bed with my woes.  I sit up and go about my business perhaps crying here and there because I’m in pain, but I will not give in.  I just figure out how to do things differently regardless of my pain, regardless of my loneliness, regardless of my sadness.

I am here because I am not make believe as you are not make believe, at least in your world.  If I had a magic wand maybe I could make it so that others like me could bend distance and bring us together and these hands that are typing on the keyboard could then entwine with yours.

I’m in a foul mood today.  What’s funny about that is that when I get this way, I get very productive around the house.  So at least the house is happy.  I guess I just need to burn off some frustration.

I want to talk about “self-fulfilling prophecy”.  Have you heard of this?  It’s sort of a psycho babble term that says that if you believe you are something, then you become that something.  For instance, say you think you are sick; odds are you begin to feel sick although maybe you’re not really sick.  Or let’s say there is an abusive parent who keeps telling their child that they will never amount to anything.  Odds are that child won’t amount to anything because it’s been so ingrained in their minds that they are no good, they feel it’s pointless to even try.

The reason I want to talk about this today is that I’m more than a little frustrated with some people who live their lives as though they are at death’s door.  I’m no one to talk, I realize that.  I mean, who am I?  I have no reason to judge or any right to do so, so I make it plain and clear right now, I’m not judging.  What I am saying is that I am tired of being around people who think this way.  It’s like bad karma.  If you hang around it long enough and listen to it long enough, you start thinking the same way.  Then pretty soon you’ve got your chin dragging on the ground and can’t figure out how it got there. 

I don’t want to think of myself as disabled.  I know that I am.  Knowing is enough.  But I don’t have to think of myself as a disabled person.  If I do, I will begin to behave as though I am.  “Self-fulfilling prophecy”.  The mind is an incredibly powerful engine that controls everything we do and everything we think.  It is influenced by all of our senses.  These are just my thoughts, not something that I’ve researched. 

I’ve had a few weeks now that have been difficult for one reason or another.  This adds to the stress factors in my life.  You already know what stress can do to an already compromised immune system.  It doesn’t help and in fact, if you are burdened enough under these stressors, your body will react. 

Now I’ve been having a heck of a time trying to keep my body away from the influences of these stress elements, but how does one do that?  I don’t know, you tell me.   It is particularly difficult if your friends are having negative thoughts and delivering those thoughts to you.  Now you know I want to be a good friend, however; if day in and day out I am listening to these negatives in their lives, it eventually will trigger negatives in my life.  I know I’ve been there. 

I have worked so hard at enabling myself and try to help others to enable themselves as well.  Yet when you have friends who are determined to set their lives on a time frame of “good days” and “bad days” well, I throw my hands up in the air.  I don’t get it!  Why can’t every day be a good day and if it turns out to be a bad day then TOMORROW, I will say that YESTERDAY was a bad day.  But to start off the day saying that this is a bad day is not a good thing.  You will definitely have a bad day.  You’ve set yourself up for it.  That’s a shame.

So for crying out loud why in the world do you set yourself up?  Life is tough all around.  Life is even tougher for others around you that you are unaware of.  Why?  Because you’re not looking and you’re not listening.  You’re involved in having a bad day.  There is no time for others when your day is so bad.

So go ahead folks.  I am in a foul mood.  I guess you can tell that.  I started out having a good day and it has indeed turned into a bad day.  But you know what?  I didn’t set this day up.  It just happened to turn out that way.  Tomorrow and yes at the end of this day, I can contemplate on what a bad day it’s been.  At least I didn’t start out the day with negatives and tomorrow will be a good day.

Hello once again,

This blog is about a gentleman I recently met who has done a remarkable thing that is going unrecognized for the good of the MS Society.  I sat down and wrote this letter and sent it out to different people in the hopes of helping him and the MS Society restart a fundraiser.   In the body of this letter I have changed his name to Mr. Green to protect his identity.  His real name is on the actual letter.  I have also changed the name of the website to “?” and all other references that I might be held liable for.  Please excuse the need to protect myself.

Read on:

***********************************************************************************

To Whom It May Concern:

I would like to tell you a story about a hero for all of us with Multiple Sclerosis and I personally feel that he should be recognized or commended in some manner.

I have Multiple Sclerosis and have been diagnosed for about 15 years now.  I struggle with it but I endure.  I have a blog site that is at http/www.mslife.org.  The blog is entitled “Enabled by Disability.

The gentleman’s name is Mr. Green (I’m protecting his identity).  I recently met him on a website called ?.com.  This is a website for musicians to gather and collaborate on music, a virtual studio, if you will.  Rather than collecting all our gear and going into a studio to record, we pass music back and forth and produce all genres of music. 

In recent years, there was a young lady who also had Multiple Sclerosis.  She was a young woman who became a hero to many at the website when it initially started.  Although very ill, she championed and encouraged many musicians on the site, oftentimes crawling out of bed to get to her computer to do so.  She has since passed but her web page on the site is still there in her honor.

?.com has almost a million members now.  Many if not all of us on the site are extremely happy that there is such a site.  Musicians often lead a solitary life, particularly those who compose music.  It is almost a necessity so that having a site such as this made available to us where we could network with each other, was a gift sent from heaven.  Because we were so grateful to the site, Mr. Green came up with the idea to form a virtual band and make a presentation of thank you to the owners of the web site.  Along with this, he also wanted to make the band one that donates all or some of the possible funds it could make and disperse it among charities.

We all hopped on the band wagon, approximately 25-26 of us began working.  It took us approximately 4 months to produce a song and a video called “? Love.”  Our band members dwindled to about 16 or so.  We worked constantly on the song and video and during that time, I became extremely ill and was hospitalized in ICU for about 30 days.  During that time, I learned that they also wanted to dedicate the song to me as well and the charity was to be the National Multiple Sclerosis Foundation. 

Mr. Green singlehandedly pulled all this together.  Sure we all contributed, but it was Mr. Green’s heart that beat the rhythm that we all synched with.  During my stay at the hospital, I kept my laptop in bed with me and though under a morphine fog, I kept checking the website trying to keep abreast of things.   Mr. Green made a virtual card for me and all the other members of our band were very concerned because I became “Mama” to the group.  I truly don’t know if I would have pulled through if it wasn’t for the encouragement from our band and from Mr. Green.

When it came time to launch the video and the fundraiser for the MS Society, inexplicably the website let us down.  When they first found out about the video and the song, I was told they were delighted and made promises to help us launch the fundraiser by using assets available to them to promote the fundraiser.  I’m not sure of all the details of the promises made but their help would have launched the fundraiser properly and it would be in full swing even as we speak. 

We placed the song on ITunes and Mr. Green created a web page for our group with the launching of the fundraiser.  We are charging 0.99 cents for the purchase of the song explaining that this is a fundraiser for the National Multiple Sclerosis Society. 

The man worked constantly in front and behind the scenes, doing all the paperwork, promotional work, and contact work with Indaba and other resources.  I don’t know where he found his energy to do so because you see, Mr. Green himself is disabled.  He does not have MS but he is on disability for his illness which I can’t go into in order to maintain his right to privacy.

As a participant and member of the “?” band, the name we gave ourselves, and also as a person with MS, I marveled at all the good this man was doing expecting nothing in return except some help in the promotion department so that we could cut a check for 100% of the proceeds and turn it over to the NMSS.  That’s all he wanted.  Not only that, we are already working on the next project for the next charitable organization yet to be determined. 

In addition to all this, one day Mr. Green emailed me and told me to go to Word Press and lo and behold, there was a site called mslife.org.  He coded and made the site for me so that I could have my blog.  I had once told him that when I first was diagnosed with MS, I purchased and read everything I could get my hands on regarding the subject matter.  Much to my dismay, most everything I laid my hands on was books on different therapies and redundant information.  What I wanted was a book about what it was like to live on a daily basis with MS.  So I decided that someday I would write that book for others who were looking for the material that was most important to me.  How do I live with this?

I hope to someday take the blog and publish it in its entirety as a book.

To summarize, here is a gentleman with a debilitating disease who took it upon himself to help a charitable organization by calling upon musicians who were willing to donate their proceeds to benefit MS and as a thank you for the website for providing all of us with the opportunities it provides us.  He is a remarkable person who is always at the side of any person in need.  I truly hate to see his disappointment in how things went.

In an effort to do something for Mr. Green, I have taken it upon myself to make sure that what he has so selflessly done for others does not go unrecognized.  I think the “?” band members are disappointed as well and it was difficult for Mr. Green (known as ?), to recently explain to all of us that the fundraiser has not done well thus far.  I feel compelled to send this letter out to you and to anyone else I can get this letter to who might be able to help him out for the good of the MS Society.

Remarkably, he is a philanthropist without means who was simply trying to raise the means to help others.  I have never come across a person such as him.  I’m proud to know him and to be his friend.  I am grateful to him for what he tried to do, but I feel he should be recognized for what he tried to do and continues to try and do for others. 

Mr. Green is a native of New York and a mere 38 years old who has suffered his entire life with his own demons.  Someone needs to thank Mr. Green for the person that he is.  I know that I am grateful that such a person exists.

With all sincerity,

Magdalena Obert

I would like to talk about fatigue.  Don’t you ever get tired of being tired?  Don’t you ever get tired of pretending that you’re not tired?

Before I go any further, isn’t the word tired a strange word?  I picture a person with tires on top of them or standing in the middle of the holes of a few of them.  Never mind.  Sigh.

I’m tired; I guess you already know that.  The fatigue of Multiple Sclerosis is not at all like being tired as most of the other folks know it as.  You know, the kind of tired that comes after a hard day at work, or after some exercise, then again, maybe not getting enough sleep.  There are some similarities, grant you, but this is different and it’s very difficult to explain to someone who has not experienced it.

The only way I can talk about this is to explain my type of fatigue because I’m sure it’s a bit different for everyone else.

My fatigue, I think, begins in my head where just the thought of thinking something through to solve any every day problem is exhausting before it even comes to fruition.  The thought of it is exhausting.  The thought of anything other than nothing is exhausting. It’s as though you want to just merge into the wall and hope no one notices you there because you don’t want to be acknowledged.   That would entail thinking and a response.  That’s just too much work.

I know for some it’s a fatigue the makes them take to their beds, but not me.  I probably should take to my bed, but I just can’t.  There is something unforgiving in me that would look down upon me if I did that.  Shame on me because I need to give myself a break now and then. 

Just a sec.  I have to let the dogs in.

Okay, where was I?  For me fatigue somehow comes out as apathy.  I just don’t care about anything or anyone including myself.  I don’t want to do for anyone or myself.   I don’t want to comb my hair, brush my teeth, get dressed, cook or anything other such nonsense.  I don’t want to do anything.  But it’s not simply that I don’t want to; it’s that because I am so fatigued that any chance of getting a smile out of me is moot.  May as well not even try. 

Walking?  Forget about it!  I feel heavy as though I’m walking against the tides of the ocean.  It’s as though anything I do is counteracted by opposing forces.  So if I want or need to lift up my arm, there is a dead weight sitting on it so that I can barely do it.  I may get halfway up there and then my arm just wants to drop. 

My head feels too heavy for my neck to hold up.  I can’t sit up for long because that’s too much effort.  I want to do the dishes or whatever and then my mind shuts down with the thought of it.  Well you get the idea.

NO.  ABSOLUTELY NOT!  THERE IS NOTHING WE CAN DO ABOUT IT!  I get so tired of people saying things like, “why don’t you take a nap when you feel like that?”  Or, “I know what you mean.”  They don’t know, do they?  Unless they have MS or another disease with symptoms of the same variety, they can’t possibly understand.

Then there are those who think of it as laziness.  I’ve not had that happen to me but I’ve heard that from friends of mine with MS.  That’s not true, but they won’t understand so you may as well not even begin to try to explain it to them.  Those are the types of folks that have a mind set and there is no changing it.

For me it’s not a need for sleep.  It is a need for nothingness.  I just want to be.  I don’t want to be a “someone”.  That entails having responsibilities, places to be people to talk to or nurture.  Those are the days when it’s all I can do to walk out of my bedroom.  If left alone, I would probably just sit there all day staring at nothing and thinking of nothing.  It almost sounds catatonic.

I wish you would respond and tell me how fatigue affects you.  I’m interested in finding out.  You know I always talk about enabling myself to work through things from a different angle thereby making them work for me.  This isn’t one I can do anything about.  It’s internalized and then externalizes. 

Well, I hope you are all healthy as can be and not too fatigued.  If you are, write me a note and tell me about it, that is; when you get over this period and one never knows how long that will be do we?