Yesterday, it was 3:00 a.m.   Today 5:00 a.m.  These are the times I wake up on most days.  Most days I don't even attempt to sleep till at least 2:00 a.m, but regardless of when I fall asleep, I still wake up anywhere between 3-5:00 a.m.  Do I nap during the day?  Well sometimes I can't help but fall asleep in the middle of whatever.  David says I'm like a horse.  I can fall asleep sitting or standing up for a few minutes at a time.

I am tired all the time, no doubt.  I am also fatigued.   There is a difference between the two.  Tired...lack of sleep; fatigue.....total drain-out.  But enough said.  I don't want to dwell on my aches and pains of which there are aplenty theses days.

I've been feeling a little at a loss these days.  I'm not sure what's happening.  Perhaps I'm going through another one of those cyclical things that happens to all of us; you know where you think to yourself, who am I?  What is my purpose in life?  I know I was meant for more than this.  What happened to all of my dreams?  Why do I keep dreaming knowing full well that I won't be able to accomplish what my dreams will have me do.

I think part of this is due to boredom.  Not that I don't have a million pokers in the fire with activities during the course of the day, hence the reason for not sleeping till the rest of the world is already at rest; but from being alone with my thoughts.  But at the same time, I prefer my own company and yet....I'm very sociable.  It's like I'm in a tug-of-war with myself.

My day can run like this.  I think I'll make David a nice breakfast.  Sometimes I do and other times I talk myself out of it just wanting to get my hands on my first of many cups of coffee.  Then I get psyched up about cleaning the house, but then I feel too tired and perhaps I'll just sit here awhile and nurse another cup of coffee.  I may pick up some knitting and it may keep me busy.......for awhile.  But then I get bored with it, and I will either pick up a different knitting project or lose the thread altogether.  If I read, I'll fall asleep and then I have to reread.   I hate that.  I'll play on the computer!  That keeps me occupied for about an hour, but then my mind envisions me doing something else. 

Grabbing another cup of coffee, I may stare out at the other world that lives outside my windows.  I think to myself, I could run out and do some shopping.  That's always appealing.  Nothing like a shopping high.  If I catch myself at the right moment, I may actually grab my keys and do this, but most of the time, it's the girl in my head that's doing the shopping.  On and on it goes.  Push and shove.  Dream and act.  Or mostly get so confused that I just sit and do nothing.

The questions I ask myself above, who am I; wasn't I meant to do more, where are my dreans and on and on, are best left to the adolescents, because if you ponder these questions too frequently that's where you get stuck; in adolescence.  It can lock you up completely,

Yesterday, it was 3:00 a.m.   Today 5:00 a.m.  These are the times I wake up on most days.  Most days I don't even attempt to sleep till at least 2:00 a.m, but regardless of when I fall asleep, I still wake up anywhere between 3-5:00 a.m.  Do I nap during the day?  Well sometimes I can't help but fall asleep in the middle of whatever.  David says I'm like a horse.  I can fall asleep sitting or standing up for a few minutes at a time.

I am tired all the time, no doubt.  I am also fatigued.   There is a difference between the two.  Tired...lack of sleep; fatigue.....total drain-out.  But enough said.  I don't want to dwell on my aches and pains of which there are aplenty theses days.

I've been feeling a little at a loss these days.  I'm not sure what's happening.  Perhaps I'm going through another one of those cyclical things that happens to all of us; you know where you think to yourself, who am I?  What is my purpose in life?  I know I was meant for more than this.  What happened to all of my dreams?  Why do I keep dreaming knowing full well that I won't be able to accomplish what my dreams will have me do.

I think part of this is due to boredom.  Not that I don't have a million pokers in the fire with activities during the course of the day, hence the reason for not sleeping till the rest of the world is already at rest; but from being alone with my thoughts.  But at the same time, I prefer my own company and yet....I'm very sociable.  It's like I'm in a tug-of-war with myself.

My day can run like this.  I think I'll make David a nice breakfast.  Sometimes I do and other times I talk myself out of it just wanting to get my hands on my first of many cups of coffee.  Then I get psyched up about cleaning the house, but then I feel too tired and perhaps I'll just sit here awhile and nurse another cup of coffee.  I may pick up some knitting and it may keep me busy.......for awhile.  But then I get bored with it, and I will either pick up a different knitting project or lose the thread altogether.  If I read, I'll fall asleep and then I have to reread.   I hate that.  I'll play on the computer!  That keeps me occupied for about an hour, but then my mind envisions me doing something else. 

Grabbing another cup of coffee, I may stare out at the other world that lives outside my windows.  I think to myself, I could run out and do some shopping.  That's always appealing.  Nothing like a shopping high.  If I catch myself at the right moment, I may actually grab my keys and do this, but most of the time, it's the girl in my head that's doing the shopping.  On and on it goes.  Push and shove.  Dream and act.  Or mostly get so confused that I just sit and do nothing.

The questions I ask myself above, who am I; wasn't I meant to do more, where are my dreans and on and on, are best left to the adolescents, because if you ponder these questions too frequently that's where you get stuck; in adolescence.  It can lock you up completely,

Has anyone figured out the title?  "A Bent Rose"  Let me know.  I will be moving on from this topic.

The other day someone said to me, "but you look good!"  Why the hell did that bother me so much that day?  I guess it's because I've heard it so often.  Don't get me wrong, I'm glad I look good to people but if I'm talking to someone who is close to me actually looking for a little comfort, and they say how well I look, it almost feels as though I'm not being taken seriously or they just don't get it.

Multiple Sclerosis is a debilitating disease that affects each and every one of us uniquely.  There are common denominators but the myriad of unexpected symptoms day-to-day, hour-to-hour, minute-by-minute, is unique.  It hangs over you like a dark cloud and you never know when it's going to let go and rain on you.  You try to run for cover but you can't run.  All you can do is hang your head in the rain and sludge along to bed.

What's so frustrating is that  the nature of the disease changes your life entirely.  You can't plan anything.  One minute you are fine and then the next you're ready to lay down and veg out.  It's particularly difficult as the day wears on and this is why I plan any activity including appointments for the mornings.

But hey, we all have our clouds.  What makes us able to handle it is our ability to find that silver lining that we know is there somewhere.  And even on days when you just can't seem to find it, you know it's there and that gives you comfort.  It's a matter of faith and positive thinking.  So let the cloud hang over me.  I just hope it doesn't rain too often.

Okay, so I don't know my own strength.  I'm able to handle this dosage increase  for now with the help of premedication drugs.  However, next Friday, I go up to .75.  Nervous?  Yes!  But I'm prepared for the worst knowing that if things progress as they have during the previous weeks, this too will be doable. 

There is a part of me that feels that this is insane to inject a drug into your belly, thighs, wherever, in the hopes that it will improve your MS.  But what is it doing to my kidneys, my liver, my thyroid, and my immune system.  It can affect so many systems in the negative and I'm suppose to say, "yep, I need a liver transplant but hey I can walk now?  Insane.  Add to this the fact that one never really knows if it's helping or not.  Particularly with Remitting Relapsing MS.  So what, I don't have a relapse in six months.  This could be due to the drug, true; but it could also be that I'm on the upswing of the disease for now.  So what the heck am I doing making myself sick every other day on the say so of my doctors?

I did fight them for a year and took myself off all therapies.  But I'm tired of fighting them and the results of my MRIs gives me concern.  So here I am again doing something that for the most part, I disagree with.  Yet who knows?  Perhaps it will help? 

On a lighter note, my sister and I were able to  send digital pictures to me with her trying on the dresses for her wedding.  She picked out a lovely one.  I was going to surprise her and fly up to Minnesota and be at the Bridal shop when she arrived, but I was too ill for that it being the Saturday after the first increase of my therapy.  But I found a florist near the place where she was to try on dresses and sent her a beautiful bouquet of roses and told her on the card, "You are beautiful."  She was flabergasted when while in the shop there was a delivery for her.  I'm told that everyone in the store cried over the sentiment.

You see, I am all that she has.  When she asked me to walk her down the aisle, I will be mother, father, sister, friend and caregiver to her.  Mind you, I wasn't always amenable to being in this position for her particularly when I was plagued by disasters of my own and had no one to turn to.  But our roles have equalized pretty much in the listening department although with great reluctance on my part. 

I'm not one to complain or discuss the details of anything personal to anyone at all.  I believe this probably comes from years of simply not having anyone to talk to in the first place.  Now I find that if I do discuss issues with anyone, it feels rather pointless because in the end, I will do what I will do regardless of anyone's two cents worth of advice.

Talking.  I don't get it.  I feel the need to talk once in a while, but it feels like I'm just listening to myself talk.  I feel this way when I go see my psychologist.  Is he really paying attention as he sits there doodling on his pad.  Then sometimes I see this glazed look about his eyes.  It's my opinion that he's wanting to lay down on his own sofa for a snooze.  This is the point where I turn the tables on him and ask him about himself.  I'm just trying to jar him awake to the here and now.  It's my money, you'd better damn well be paying attention.  It's a waste of time.  I just don't resolve any of life's problems by discussing it.  There simply isn't anyone who can help.  Never was. 

I'm proud of the fact that I raised me to be the adult that I am.  I'm okay, perhaps a little better than okay.  I made the Princeton papers twice last year.  That's a feat in itself.  So I'm okay.

Talking?  If it helps, go for it.  I'd much rather write.  It helps me gather my thoughts into cohesive little paragraphs even though the paragraphs themselves sometimes don't relate much to each other.  But that's okay; that's why it's called a blog and not a great literary piece of work.

There is one thing about talking that  bugs me.  There are more days than I can count when I realize that I've not said a word to another human being.  I'm alone all day and my friends know I don't do the phone thing.  Phones for me are for the pizza guy or for an emergency.  Everything that I get myself involved with at home requires solitud; writing, reading, composing of music, art work, and creating designs.  It's my lot in life.

Who am I kidding?!  I get lonely.  Perhaps a little chit chat with someone would help sometimes.  Sigh.

 

Here it is 4:00 a.m. in the morning.  I have the lights on on the first floor and the coffee is brewing.  Now don't get me wrong, I slept for about three hours and now I'm wide awake, par for the course.

There's several things on my mind.  The first one is that my sister is going to try on wedding dresses this weekend for the upcoming wedding in September.  She's in her 50s and this is her one and only marriage.  She's known this great guy that I absolutely adore and has been with him for a number of years, and now they are getting married. 

I am her older sister and there is another who is younger.  We are the survivors of a failed marriage and many years enclosed in an orphanage until we graduated out.  We were not orphans but byproducts of a failed marriage where neither one of them wanted to take care of us or couldn't.  Now both parents are six feet under and we never truly knew them.  They led their lives and we mangled ours until we finally got it right.  So I'm it, the head of this little family.

My sister asked me to give her away at the wedding.  I proudly accepted this honor.  I'm also composing the music for the wedding ceremony.  I'm grateful that it isn't until September so that I have plenty of time to work on this.  So why is this all on my mind?  She's in Minneapolis and I'm in Princeton too ill to travel and participate in all the pre-nuptial planning and excitement.  Should this bug me?  You're damn right it should. 

It irritates the heck out of me that I can't just do what I would ordinarily do, which is to book a flight to Minneapolis, help her decide on the wedding dress, have dinner and drinks, and then come home again.  Sound ridiculous?  Perhaps.  But it's a big deal for me,knowing that my life has changed so much that I can't do what I want to do when I want to do it.  Even if I was 90 years old and just dealing with old age, I would still have the option to participate in whatever activitiy at the drop of a hat as long as I was healthy.

What truly bugs me about the whole thing is that in this day and age, you would think that the Bridal Shop would be kind enough to arrange for an out-of-state person to participate in the viewing of the dresses.  I mean come on!  We have computers out the kazoo!  My Blackberry is a computer.  We have laptops with video!  But when my sister asked if this could be arranged, they told her that they don't have internet access for the customers.

So here I sit, one day before she tries on her dresses still trying to figure this thing out.  I'm not a computer whiz and neither is she.  Not only that, she's not as well equipped as I am in the line of laptops etc...  At this point she has decided to have a friend with a digital camera take pictures of her with the dresses on and have them emailed to me.  Then she and I can discuss these dresses and she can pick one of them out with confidence knowing full well that I will give her an honest opinion as to what looks good on her or doesn't.  I shall leave this here.

The next thing on my mind is today I have to double the dose of the serum for my shot.  I've not done well on the miniscule amount so I'm worried about what will happen today.  Pray for me.

On a good note, pun intended; I've written a couple of songs this week.  One in particular is going round and round in my head.  I wrote it for my husband who plays the fiddle.  It's a great jig and I hope to work on it this weekend with him.

So you see there is good and bad that plagues me in the middle of the night that drives me out from underneath my warm blankets into a cold room at a computer desk waiting for the coffee to finish.

Hi,

I’ve had the second shot. David sat with me as I worked through the process taught me by the nurse. My hands were shaking but I’m sure next time I’ll be more comfortable. The nurse will call me today and ask me how it went, so I can have some nagging questions answered.

It was pretty much a repeat of the first shot as far as side effects go. The difference this time was that the chills were not as bad, but the muscles aches were hard to take, which I hardly noticed the first time. The headache was the same. 

I’m worried about stepping up the dosage, but I can’t go there right now. It’s about 8 a.m. and I’m not doing too badly all considered. So already there’s been an improvement over the first day where it dragged on and on.   

My husband, God bless his soul! There are no words to describe how I feel about him. 

Third shot will be given on Tuesday, and then the fourth shot will fall on Thursday, Knitter’s day. I’ll wait till after we meet. It was suggested as on previous therapies that the shots be taken at night so that you could sleep through the side effects. Hah! I don’t sleep through side effects!   And…it doesn’t take me only 12 hours more like 24 hours and then some to get through it. So I decided that this time I would take the shots during late morning or early afternoon thereby giving myself 24 hours to get through it. 

There is no misery like the misery of being up in the middle of the night, alone, and in pain. My misery likes the distraction of responsibilities of dog care, husband care, projects care and so on. That’s the trick that works for me. If I sit alone and wallow in it I’d drive myself nuts. This way, when I know that people or pets are counting on me, it forces me to get strong and kick my butt out of bed. This is a good thing.

If I can’t find the positives, I make them happen. Be kind, I do listen to my body and take it slow if need be, but I can’t keep ahead of this MS thing if I quit at the first sign of a symptom of pain, such as spasms, etc… If I work through it, I get through it much quicker. 

So there you have it. Stay tuned for the next episode of  “A Bent Rose”. You’re thinking huh? Figure it out! 

Hugs.

Sometimes, when you least expect it, life throws you yet another curve to contend with.  If you're running down the road of your life without paying attention and you hit that curve, you crash and burn.  I'm facing a new curve right now.  But I have to admit, my life is nothing but curves, some worse than others.  

I've been away on holiday to Nova Scotia.  I didn't see much of it due to the rain and fog almost every day while we were there.  That was disappointing, but I was on a knit retreat and that was lovely.

Now that I'm home again and have time to think, I can update this site a little more consistently I hope.

I've been back almost a week now but I think that I brought part of Nova Scotia back with me.  I'm sicker than a dog.  I'm whimpering as I sit here trying to reach out and touch someone because misery loves company.  There is something inside my head pounding to get out and it lives in the right side.  Every few seconds to a few minutes it gets quite insistent and pounds so hard that I succumb to a painful grimace and sometimes cry out.  What the heck is this?  

I started with a sore throat, but no other cold symptoms.  My throat is still a little scratchy and I have a hoarse voice.  Meanwhile, this pain in the *## thing has taken residence inside my head and I can't seem to get it out.  I have tried to appease it with aspirins but nope, it does nothing for it.  So when you're taken suddenly ill what does one do?  Imagine all sorts of terrible things!  

So then you start looking on the internet and that only makes you more worried.  Then again, it could be something simple like a.......bad headache from sinuses or some other thing.  It's the not knowing that bugs the hell out of me.  I like knowing what's going on in my body and the guest in my head was uninvited and he doesn't seem too happy either.

After a few hours of wasting my time on the internet looking for something exotic to say 'aha' to, I finally pick up the phone and call my doctor.  She called in an antibiotic for me but if I'm not feeling better in a day or two, I'm to call her back.  Then I called my white knight, David, and asked him to drop everything and pick up the drug at the pharmacy since he works close to it.  So okay.  I've done what I should have done in the first place, call the doctor.