Weight and fatigue

Hiya,

This is going to be a different type of entry. Why, you ask?  Well, I am tired of not having any energy. I am tired of the limitations I have placed on myself.  I may have Lupus and as we all with chronic illnesses know, it has a way of dragging us down.

I have blamed my weight gain on my meds.  Let's face it, I can control that if I want.  It just takes dedication and fortitude.  I have nothing to lose but weight and energy to gain.

So I have decided to do something about it.  Today, I joined one of those circuit work outs.  I had my first workout this morning.  And, as disappointing as it was I am going back tomorrow morning.  Maybe tomorrow I will be able to a little more.  And, a little more the day after that.

One day at a time.  That's all I am going to think about. 

FATIGUE

One of the most troubling symptoms of Lupus for me is fatigue.  I think it's because there is nothing that can be done about it. 

Fatigue is not the same as tired.  When a person is tired and they go to bed and get a good night's sleep.  They usually wake up refreshed.  Those of us with Lupus hardly ever have a refreshing night's sleep.  And, if we do we relish it.  We celebrate it. 

Lupus fatigue is much different.  

Most of people are guilty of not understanding that these two words do not have the same meaning. 

I was one of those people.  That is until I found out first hand that there is a huge difference between being tired and being fatigued.

Lupus is characterized by remissions and flares.  I am pretty lucky because I haven't really experienced a monster flare that has lasted longer than a month or so. And, even with that the worst of it has been a week or so.

I  have learned (or I think I have) how my flares work.  How they come on.  What precedes them.

People often tell me that I should know how to avoid the triggers to my flares.  This is all but impossible.  The fact remains that I have Lupus.  Lupus is still a mystery.

What I mean when I write that I think I have learned how my flares work.  What I mean is that I can predict their track.

There are two courses my body can take before and during a flare.

The first and most common for me is all of a sudden my vision will change.  I see wavy lines.  Wavy lines that are accompanied with flashing lights.  When this happens I know I will soon be having a seizure.  And, then it's pretty downhill from there.

The second and most recent thing that happens is that I begin to experience chest pain.  Nothing to do with my heart, just pain. 

They call it Costochondritis.  Costochondritis is an inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breast bone or sternum.  Let me tell you it's painful.  I thrash my body about just trying to find some comfortable position where the pain is not so intense.

After one of the above occurs my body shuts down.  Any one of the above is proceeded by extreme fatigue.  Nausea, diarrhea.  And, the most horrific pain.  Each and every part of my body becomes inflamed.

The fatigue that accompanies lupus is not the same tiredness you experience after a sleepless night or hard physical work. Instead, it's an ongoing, extreme exhaustion that's usually not relieved by rest.

Then BOOM!!!!  My body returns to "normal".  I can't explain why this occurs.  Could be the prednisione.  Could be anything.

FATIGUE:
Text: a complete depletion of energy or strength Synonyms: burnout, collapse, exhaustion, prostration, tiredness, weariness

TIRED:
Text: depleted in strength, energy, or freshness. Synonyms: beat, bushed, worn-out

Here are some of the sites I used to find information for this entry.

Lupus - MayoClinic.com

About fatigue - Fatigue.

Systemic Lupus Erythematosus ~ After Dx

Health Minute: Living with lupus: when the body turns on itself

 

I am just trying to get across to those who do not understand that there is a difference between being tired and being fatigued.

It's just another one of those days.  And, as always, I will get through it.  We all say......... I may have Lupus, but Lupus doesn't have me.  But, I think that today Lupus has me.  I have surrendered to it.  Today Lupus is a thief.  A thief that has robbed me of my precious energy.

And, to quote Loretta when she wrote in her entry entitled......LUPUS SLUMP.

"This is not a complaint...just a statement of facts.

     This is what it is like to live with lupus."

"Med students are often told, 'Know lupus and you know medicine'. This is because SLE can affect every part of the body. The basic path of lupus, or the factors that cause the disease, get to the core of how the human immune system functions." Dr. Daniel J. Wallace, author, The Lupus Book.

I just read this quote and had to include it here.

This book by Daniel J. Wallace is a must read for anyone who has Lupus.   Or has a loved one with it.

Introspective

I began this journal on Monday, September 15, 2003.  The subject was entitled “My Day”.   The time was 8:46 PM.  And I was frustrated

 

I’m curious if there is a way to find out how often I was feeling worried, happy, lupie, ecstatic or one of the other choices AOL has so kindly provided us.  Often I wish I could add my own mood word.  There are a myriad of words that I could choose from.   How about creepy, sleepy, ugly or fat?  Conversely, there were days when I would be feeling beautiful, normal, or simply irresistible.

 

When I started “LuAnne’s Life With Lupus, the words I typed were for my own survival.  Each and every syllable was meant for me.  My “Dear Journal” type entries were only for me.

 

I have always loved to write. And, as amazing as some might find it; I am good at it

 

There are days when the words flow from my mind to my fingertips.  On these days I feel like an eloquent and gifted writer.  And, I feel magnificent

 

My journal had been in effect for a few months when I had received a comment from someone I had never met nor have I ever spoken to. This woman had been suffering alone, in silence for quite some time.  Her comment to me was that she was very thankful to me because I was putting into words what she was feeling.

 

Since that first comment I have received many other comments. More over I have received thousands of emails and IMs from others who have been suffering in silence..

 

It was then that it occurred to me that language I was conveying here in this journal was meant not just for me but for others who were like me..

 

There are millions of other people who are experiencing the stigma of what having an invisible illness brings with it.,

 

I came across this poem. I highly suggest reading it. Here is the link…..http://www.fms-help.com/poem2.htm I would copy and paste it here but I am unsure of copy write laws and stuff.

 

After doing an Internet search Invisible Illnesses I learned a lot.  First off, there were more sites on this subject.  The one I love the most is written by Christine Miserandino.  Here is the link to her site.  Be sure to check out SPOONS.  Christine is one of the most amazing and knowledgeable woman I have come across.  http://www.butyoudontlooksick.com/about_us

 

Throughout my journey into J-Land I have became friends with loads of woman.  And, as I wrote about above, not all have Lupus.  But all have some sort of disease that has changed their lives.

 

Some of us have been fortunate in that we are supported by husbands, wives, parents, children, etc. who see beyond our beautiful appearances and realize how complicated our lives have become.  We are blessed to have these people in our lives.  With these loved ones who have complete understanding and compassion for us, it affords us the time we require to recharge.

 

Webster defines a man in the following manner.  As a male surpassing those tendencies that were once that of a beast.  My man, my husband has more than surpassed that.   He has been my rock.  He has been my fortress. 

 

Gary has held me up both physically and emotionally.  Never once has he mocked me.It is usually I who disparaged in my own mind.  It is me who has put down me.  No one has done more harm to me than I have.

 

When I switch on my moods.  And, in those moods I feel less than a woman and ridicule and scoff at myself.  It is during these periods where my husband encourages me.  He is so wonderful at retrieving me from the depths of despair that I easily throw myself into.

 

During these times he doesn't attempt to put things into his perspective.  He knows better.  He knows how to build up my confidence.  Gary tells me how needed I am.  He narrates my life.  He recounts my accomplishments.  He has this remarkable way of returning me to reality.  What ever is needed to do this, he has the tools to get the job done

 

When I feel ugly, he looks into my eyes and reminds me that he only sees my beauty.

 

This journal is a tribute to him.  For all of you who have told me that I have helped you.  You also have him to thank

 

On the 16th of this month will celebrate our 22 year of marriage.  Each and every day of these 22 years I have never had one moment where I regretted the decision I made to marry him in 1984.

 

He is my soul mate. 

 

God blessed me when he sent him to me. 

 

Gary is my lover, my friend and the man who holds out his hand when I am falling.

 

I can only hope that I make him as happy as he has and continues to make me.

 

 Because he has given me his best and deserves only the best in return

HOW I GOT MY SCREEN NAME

Why did you choose it?  How did you come up with it?  Does it mean something special to you?  This came from Val's journal........Val's Thoughts

My husband started calling me Baby a very long time ago.  Throughout the years it has progressed.  It was Babyeeeeee.  Then our friends would play along and call me TheBaabee (pronounced The Baa (like what a sheep sounds like) Bee.  We would all be numbered.  I was TheBaaBee #1, He was TheBaaBee #2 and so on.

I'VE BEEN TAGGED

I've been tagged by shadierush at Never Give Up.

I am supposed to list five weird things about myself.  Geez, my list definitely can be more than five.

1.  I have this thing I do before I know I am going to be admitted to the hospital.  I clean my house like a crazy lady.  No matter what my energy level is or how much I hurt I clean the house.  I suppose that I have this fear that I might not return.  And, that when people come visit Gary my house will be clean.

2.  Gary and I always think of the same thing at the same time.  Here is an example....... the other day I was cleaning my ears with Qtips.  It seemed odd that one ear is always dirtier than the other.  Then after Gary got out of his shower he came into the bedroom and said to me....... how come when you clean your ears one is always has more gunk on the Qtip than the other ear.

3. When Gary leaves for work in the morning and I am half asleep.  He comes and kisses me goodbye and every time I have to say to him.  Have a good day, be careful, I love you.  I think that if I don't say those three things something will happen.

4.  I eat frosting from the can.

5.  Like Dawn wrote, I had no problem feeding my dog from the same spoon or fork that I have been eating from.  I would feed the dog a piece of my food and then eat from it again.

Let's see who I can tag next.

I wish my mind worked better.  I do get moments (they are far and in between) where I can think clearly.  During these moments I feel somewhat normal.  Today wasn't one of those days

Yesterday wasn't either.

At around 3:00 this unyielding, paralyzing feeling of fatigue came over me.  It was pretty horrible.  I had to lay down where I was standing.  I went right down onto the living room floor.  Nothing could get me up.  No amount of trying, nothing at all.  I remained there for almost 45 minutes.

I had to get up because I was in the middle of cooking dinner.  Thank goodness I had decided to put the chicken in the convection oven.

By the time Gary got home from work I was a mess.  It still hits me hard when these things happen.  It's easy to accept this illness when things are going fine.  But even during my better days I still do not have the stamina I once had.

He walked me to bed and told me to go online for a while.  I couldn't keep my eyes open and I had no energy to close up the laptop.  Thank God for my husband.  He is a gem.  He came in and took care of everything for me.

The next thing I knew it was midnight.  I was awoken by the kids.  Most of the time I have a houseful here.  I sat with the girls for a little while but had to drag myself back to bed.  I fell asleep instantly.  For the next thing I remembered was Gary kissing me goodbye at 6:30.  I reached out my arms to hug him and he put the blankets back over me.

I looked up again and it was after 9 am.  My body was in complete agony.  Once again every joint and muscle was in pain.  My head was killing me.  My eyesight was not great.  I kept seeing little flashing circles.

I struggled to the kitchen to get a drink so I could choke down my morning meds.  Maybe this will help I thought to myself.  Increasing my prednisone dosage to 20 mgs. 

About 2 hours later I took a fiorional.  I slept on and off for the rest of the day.  I ended up having to take 2 percocettes and a valium.  This combination seems to be helpful in alleviating my body and head pain. Now my body just feels as if it has been hit by a truck.  Believe me this is a huge improvement from the way I was feeling earlier.

Gary is working late therefore I didn't have to worry about cooking.  Not that he would have insisted on me cooking.  He is so very wonderful about this.  I am the one who feels guilty about not being able to do it.  Everyone manages to find something to eat.

My son ate farina earlier and then made a tuna sandwich.

Lauren is in the kitchen right now cooking for Greg.  Mac and Cheese and some leftover chicken.

I often wonder how others with younger children do it.  I also often thank God for a very loving and understanding husband.

I have an appointment with Dr. Goldstein early next month.  Let's see what my blood work shows.   And, what he has to say about this.

I do know that things with my health could be so much worse.  But on days like this when I know that I most likely will be feeling this way for weeks.  It pretty much sucks.

Hugs, Lu