Monday, January 7, 2008

Honesty

So, here we are, Monday.

Remember when I had all that energy and was feeling good before Christmas?  Yeah, that was great.  It wasn't perfect, but it was better than right now.

Today, I had to literally psyche myself to get motivated to take a shower. 

Yesterday, I didn't want to shower because of the Enbrel injection site reaction.  It was so hot and inflammed; I didn't want to aggravate it. 

<sigh>

I hate feeling like this.  I am revisiting the 'anger' stage of dealing with a chronic illness again.  Today, I want to spit nails.   Yesterday, too. 

My Hubby had the gall to complain about doing something (I am being facetious here), and all I could think, actually scream inside my head was "HOW DARE YOU COMPLAIN!  EVERYTHING IS SO EASY FOR YOU!  AND, YOU HAVE NO FREAKING IDEA HOW LUCKY THAT MAKES YOU!"

Yeah.  Today is the same.  I bet lots of you got up today, maybe you had an ache or two or three, but it didn't stop you in your tracks.  You got into your shower, did your hair, put on your make-up, and went to work.  Or maybe you got your kids to school first, too. 

You just did it.  No thought, no plan of attack, no pausing to rest in between each step.  No running your hands under cold water.

I got up at 7ish, hit the snooze from 6:50 until 7:10 so I could get my left leg/ankle/foot moving because it seemed to be frozen in place.  I woke the 2 kids that go to school, limped away from them to the bathroom.  Thank heavens for the counter next to the toilet for balance and leverage sitting down, and getting up.

Woke the kids again.  Hobbled to kitchen, where I started a cup of coffee, and got out the ham to make a sandwich for Fuzzy.  Made Fuzzy's sandwich, packed the rest of the lunch up; drinks and snacks; hobbling a bit less.  Ran my hands under the cold water to help stop the aching, burning sensation from making the sandwich etc.

Sat down with coffee in kitchen.  Hugged Pumpkin, who was not happy to be up for Monday morning either.  Hugged Fuzzy who took his drink and pop tart and went to watch tv.  I guess I forgot to mention getting the kids drinks before the sandwich making.  Pouring the gallon sized Ice tea container hurts, like a b#tch in the morning.

Rest for a bit while talking to Pumpkin and while they dress.  Now, out to the car to drive them.  Putting on the pull over is annoying, but I can't find my zipper fleece jacket that I usually wear in the winter, which makes one step a little easier. 

I drive them to school and myself home, all the while cursing my right ankle/foot silently in my head because they are sore, too.  And, gripping the steering wheel, not fun.  So, I try to do it as lightly as possible. 

Once home I relax for a few minutes, checking email, and then head back to bed.

After I get back up, and waiting for my meds to kick in, I check some more emails and drink 2 cups of coffee, and mentally psyche myself up for my shower.  I actually sit there and tell myself all the good things about taking the shower, and try to ignore all the bad.

So, I get in there, and the water does feel good.  It is painful to wash and condition my hair, but I push through.  Can't shave the legs because bending irritates the injection site reaction, and I don't want to aggravate that at all.  I am hoping the hot water doesn't make it worse either.

Get out of shower (thank God for the handle/bar thingy).  Dry off, and now time for the blow drier.  It always feels like a thousand pounds at this point.  Dry hair halfway, as that is all I can do.  Get dressed.

Sit down at the computer.  Rest.  Yes, I have to rest after all that.  Most people feel invigorated and bounce out of their shower.  Not me.  <sigh> 

Some of you out there with chronic illness will understand.  Some of you may remember an acute illness that you had to deal with once, or for a time, that you felt this way.  This is all the time for me.  Sometimes a little better, sometimes a lot worse.  Sometimes, I am fighting tears in the morning, not wanting to upset the kids.  Sometimes the shower never happens.

That is why I am in my 'angry' phase again.  Doesn't seem fair does it?  Frustrating, too. 

be well,
Dawn

36 comments:

sunnyside46 said...

my heart aches for you.
My friend Stephanie is so sick just like you are and I grieve for the way she used to be. It sounds just like her life. Chronic illness is so insidious, the way it saps you of your very self.
You are so brave and have such a good attitude. I know right now you are thinking you would rather be well then brave. You are an inspiration to me every day.
Love
Marti

glensfork4 said...

(((Dawn)))

Although I don't know how/what you feel....I see it in my Tony....pain, not being able to breathe (on a bad day)....

I wish you or anyone else wouldn't have to feel it.....Prayers and thought of you....

Michele

mleighin21st said...

That is one scary "bluetooth".  Dawn, I'm so sorry that you're feeling so bad right now.  I know that there's nothing I can do to make it feel better, but some advice- go ahead and be pissed, complain, scream, etc.  After, you may have to apologize and remind everyone that you love them, but it's an excellent stress relief.  I'll send along some good vibrations, just in case.  
                                                  Hugz,  Leigh

 http://journals.aol.com/mleighin21st/iwasthinking.../
                                       

astoriasand said...

I felt so sad reading this tonight Dawn.I cannot say I know how you feel as I do not.I can only say I do pray for everyone around the world that there health be better and may God give them the strength to carry these rough days through.I never wish for riches only my health,as I have always told my family of four children too,one cannot do much without your health.Just as you are explaining to us here.No some things in life are never fair and we do not have the answers why? I wish we did.I pray tomorrow brings you a much more pain free day and also that you are such a brave girl pushing on and doing all those things whilst you so ill.God helps those who helps themselves.Keep your faith and keep praying.I think I would be very much the same in your position,as I am too independant.Please Take Care Thinking of you and praying hard .God Bless Kath astoriasand http://journals.aol.co.uk/astoriasand/MYSIMPLERHYMES

swmpgrly said...

I always think of how lucky I am. I have a little arthritis in my big toe and I suspect in my heal on the opposite foot , it can be agrivating at times but thats all. I Wish You were not in so much pain. I hope better days are ahead.

whoopiepoopsie said...

Your posting is a reminder to those of us who 'complain' about the little things that we are so fortunate to not be going through what you are.  It's so easy to take one's health for granted - until you're battling with health problems.  I pray that 2008 will be kinder to you, and that your days of feeling good will far out number what you are going through today.

Hugs from Minnesota

nay0114 said...

Awww... Dawn I wish I could take it all away for you it isn't fair. I have a knee that kills me every once in awhile and my hands are always numb, but am so thankful to be healthy for now. You're such a trooper. You go so the kids and hubby don't worry so much. I love how you always manage to keep others smiling with your words even when you don't wanna smile that takes a special person. I hope you start feeling better soon.
Take care and Hugs, Chrissie

frankandmary said...

I am guilty of freak outs like that.  When I ran an oncology practice I had employees who were single parents complaining about a 9-5 job, taking care of kids, laudry & bills, because they had no help.  But 80% of the chemo patients were working full time jobs & taking care of kids & home also.  They got no down time.  They'd get home & had to throw in laundry & cook dinner....but they were so sick.  I would yell at the staff for being so insensitive for mentioning their problems around people with so many more problems. It seems everyone always thinks they are worse off.

As far as your comment on my journal.  Now you live in NJ too. I will get thrown out of the Republicans club if you tell.  LOL ~Mary

cherry2sweet2eat said...

im sorry hun and i know how you feel at times people around you can be very selfish and demanding and not know how you feel on the inside but knowing the condition and stuff you go through.

coelha said...

I'm so sorry :(  I forgot to tell you that I had a dream about you a week ago--and you were a brunette, and you were remodeling your home, and I came for a visit!  I don't remember too much, just that you were long brown hair--it was kind of weird I know.  Hang in there Dawn--I hope your day gets progressively better today!  Julie

pharmolo said...

Sorry to hear you're on the downward slope, Dawn. Hope it reverses to upward soon

sugarsweet056 said...

Feel better my friend. Saying a prayer for you tonight.
Huggies,
Sugar

dan@thedistractedmind.com said...

I know what you mean, Dawnster!  

My brother has a tendency to stop over and whimper about his lousy day to me three or four times a week.  And, all his complaints are the exact same thing over and over and over again (i.e. His drive to work, his job, the drive home from work, the weather, etc.).

I swear.  One of these days, you'll hear about me on the news.  The headline will probably involve the words "railroad tracks," and "shallow grave."

Now...  Quit yer belly-achin' and go put your feet up, and if it helps, fart loudly.  That should keep the whiners away.  Just make sure the pets and loved ones are outside the blast radius.  

Yer Chum,
Dan
http://thewisdomofadistractedmind.blogspot.com/  

cacklinrosie101 said...

It's not fair at all, Dawn.  The only bad ache I have is my rotator cuff in my shoulder.  It was so good for so long but has been acting up big time for about six months.  Not that it's even remotely close to your problems but I cannot blow dry my hair, brush my teeth with my right arm...on and on.  It just dangles there and aches like a tootache.  In the morning it is frozen.  I literally cannot move it.  When I do, it takes all I can do not to scream with each movement.  It hurts when the kids bump it.  I really don't know how you do it.  I fuss over one area of my body that aches.  I pray that you soon get into remission again.  Hugs n Love, Chris

nightmaremom said...

aaawww hon I'm so sorry... today I woke up sick... called off and babied myself all day.. nothing compared to what you went thru...   nothing!
hugs
d

sdoscher458 said...

((Dawn)) I guess I shouldn't complain about aches and pains after reading what you do go through dear. I can relate though to the shower thing, I have problems breathing in the high humidity, so I have to rush through it, not able to enjoy a leisurely shower or I am gasping like a fish out of water and I am actually more tired after it than before. I wish we could find a cure for all these things that are so painful...be well, love, Sandi

jeanno43 said...

I shall be praying that your pain eases my friend.  I know the feeling of aching and being sore only too well.  Oh, I have the same syndrome, dry eyes, dry mouth.  Two of my cousins have it as well and another cousin has lupus.

jckfrstross said...

Dawn keeping you in prayer:)

Deb

luddie343 said...

Oh that Enbrel again, wish there were a less horrendous way for you to navigate a day.  In contrast, now that the infernal holidays are over I'm starting to see light and feel its warmth.  I pray this comes to you soon, dear long-time friend Dawn.  An aside, I've never "bounced" out of a shower, I'm exhausted from holding onto the rail while trying to perform my eblutions.  Hair dryer?  Who can hold their arm up that long lol?  I note with admiration your humor is intact!  xoxo CATHY
http://journals.aol.com/luddie343/DARETOTHINK/    

deshelestraci said...

It is not fair.  Absolutely not.  I had no idea how miserably painful most everything is for you.  Wish it was different.
Praying specifically for your healing,
Traci

queeniemart said...

i HAVE been deathly sick three times in my 39 yrs and the last was 2 yrs ago. I was barely able to move, my God, it was horrible. I can not imagine how you feel but i do empathize with you and i am so truly very sorry. I wish there was something i could do....i do not want you to be in pain.
HUGS, lisa

rdautumnsage said...

I actually get the anger part down quite well. Some days it really does suck to even try....but we do, you do...at the end of the day that's what counts. Some days the anger is the only thing that makes half sense in a world of unfair why me's. I wish I could take some of your pain away hon. All I can do is say I'm here. Keeping you in my prayers on the smoke that tomorrow brings a better day. (Hugs) Indigo

tenyearnap said...

Damn! Feeling every move must suck. You must be exhausted by the time the kids get to school. I wish I could make you all better.
:-( Cin

lv2trnscrb said...

(((Dawn))) we able-bodied take things so much for granted; I sincerely thank you for sharing how hard it is for you to try to be "normal". I can't imagine the effort it takes on a daily basis to try to be so and function as a wife and mom and yet you continue to do so day after day! You are a hero to me!!

betty

toonguykc said...

I feel bad for my petty complaints.  One thing I've started doing in the past several months is shower before bed and just do some "touch ups" in the morning.  I hope your whole self feels better soon.

Russ

lindaggeorge said...

I'm so sorry you are having such a bad time, I hope you find some relief soon.

Linda x.

http://journals.aol.co.uk/lindaggeorge/GeorgeMansions/

eml625 said...

I truly admire you. I have my own aches and pains (prior car accident) but I guess it's nothing compared to your situation. I do sometimes have to take breaks and rest since, I seem to have something going on with my legs recently, along with my back. I need to see a doctor, but being the worlds worst procrastinator, I havent done anything about it.....hope today is a good day for you.
Big hugs,
Ellen
PS - STILL trying to cordinate the boys game time ! J told me he saw them logged on , but playing different games ?

chat2missie said...

My son lives with a chronic condition as you know that mimicks MS and Fibro.  I know all to well how your feel.  Sending you some hugs!!  Oh yea, love the bluetooth tag. LOL
Missie
http://journals.aol.com/chat2missie/MissiesUpsideDownWorld/                                

sangrialel said...

Dawn i am so sorry that you are hurting so bad right now.  If I could take it away I would!  I hope the injection starts to make you feel better soon.  Linda

xomywayox said...

Aww (pats & hugs as i write this) I often forget that you live with chornic pain on a daily basis, why? Because for the most part you write about that crazy, funny, very often loving days that you have. So I am saying to YOU now. I am so very sorry that such a wonderful woman, mother, & friend has to deal with the pain and discomfort.

Lub Ya Sooooooo.....Brenda

homeshppr said...

God bless you for finding your strength and fighting the good fight.
There is always hope and comfort when you can face ANY Monday with optimism.
And a greater hope in treasuring ALL your Mondays, believing each to be a miraculous gift--even when met with pain, fear, fatigue, uncertainty and gloom.
You are in  my heart and my prayers.  I realize you are truly facing your illness alone, but many people (family and strangers alike) are being touched by the wonder of YOU and what you have to teach us.  Find your comfort wherever you can--and I wish you something special to smile about today...and every day.

wildautumn1 said...

I'm sorry you are in so much pain. I really do sympathize. I try to explain how intense the pain can be to others, but they just can't imagine.  Here's to pain free days, medication that makes us feel better & lots of laughter!

wwfbison said...

You put this in words that make it possible to somewhat comprehend what you must go through ~ I cannot imagine dealing with what you are going through.  You must be very strong to be able to push through and do what you have to do for the kids.  I can easily see why you would be angry, I think someone dealing with this would be angry all of the time.  I will Pray your meds kick in and you start to feel better.  My thoughts are with you.
Lisa

libragem007 said...

awww..Dawn..I am so sorry that you go through this everyday. I honestly didn't have an idea how painful it is for you get through "little" things that alot of us comes so naturally easy to do.

Now that I know, I'll be thinking of you and pray in the morning that you'll have a better day than yesterday.

Take care always,
Gem~~

tlgf1968 said...

oh, i totally get what you mean about the shower! sometimes i need a nap after taking one. it's so frustrating! i try to think of it this way: at least when i wake up my hair will have some entertainment value (if i sleep w/the towel wrapped around my wet hair). that's why i wear baseball hats a lot more now (in addition to the fact that my hair is falling out again)! lol  

i tried to get tickets to the giants-bucs but was not successful. {dang tampa fans were not willing to part w/their season tix even when they knew they were going to lose! lol}  congrats on the win and good luck next wknd.  i hope osi wraps romo up like a cheap gift =)

randlprysock said...

So sorry you are going through this phase.... well, this was back on the seventh and I am way behind on alerts.  Hope all is going better but I can relate in another way from some things I've been through in other areas of my life.  Many prayers and hugs!!!
Lisa