Posts Tagged ‘children’

Those two words are not an option for me. I have three wonderful children that need me and a husband that loves me. So how does one deal with the emotions when their whole soul says, I want the pain to stop?

I wish I knew. Last night it felt like my bones were trying to some through my skin. I know no other way to explain it. My skin was crawling and my emotions were flying all over the place. What was I doing when this happened? Trying to go to bed. Yup, that’s it, just trying to sleep. WTF!!! Roger was trying his best to comfort me, dd#3 was scared and dd#2 was lying in bed holding on to me and crying.

I got so pissed. This MonSter isn’t only screwing up my life, it is killing my kids. I screamed at God, I screamed at the MS. If either were human in front of me, they’d be dead now!! If you wanna mess with me, go for it, but DO NOT mess with my kids. My faith is gone and nothing anyone says is going to change that for me. I believe in a ‘higher power’ but that’s it. And do not try and preach it to me… please. I’m no longer in the ‘politically correct’ mode. Okay, I never really have been, but now you’ll just piss me off.

I have no issue with the ‘believers’ out there. Keep it to yourself and we’ll get along fine. Push it on me and we will not.

I’m angry, I’m depressed, I’m fat, I’m lonely, I’m in pain [emotional and physical]. It’s not going to go away like the flu or a cold. I deal with it as best I can. I do not want to hear about that person with MS who ran the marathon, or any other success story. Not to be rude about it either, but they most likely have rrms and are in remission and have the funds to be able to do these things. I’m not and I don’t. I’m happy for them, but do not want to be compared to them. We are ALL different in our disease.

I am and have always been a fighter… MS HAS won the battle, but the war is still on!

xx, Tracy...

This is NOT my life… where is my real life? If you find it, please reply here with the location.

I realized that I have not been out of my home for over 3 weeks. I just have no desire, no oomph to do anything. I know it’s not about the Ampyra as I’ve only been on that 2.5 weeks. It’s been so hot here and heat is no longer my friend. When I say out of my home, I mean that literally. I look outside, but have not even gone outside. I have no desire, or care much right now to do anything.

All my kids are back in school, hubby working, so I’m alone all day. I do not drive, can’t work, and sometimes I really feel like what’s the point. I have no energy, my fatigue is off the charts. [even with the anti-fatigue meds]

And please, please do NOT say, “It could be worse.” or “You’re only given what you can handle!” BULLSHIT! This is my ‘worse’. I need help to get dressed, to shower, sometimes to eat when I can barely hold the utensils. I wear my pj’s most days all day as by the time I get up everyone is gone, and it takes too much energy to get pants on by myself. Luckily, I love my pj’s and have many sets. I guess unless you ‘roll a mile in my chair’ you’ll never understand. The helplessness, the loneliness, the depression that sets in. Maybe it’s a ‘healthy’ thing. Usually it’s the healthy ones that makes the above statements. Their biggest issue is what to wear, having a busy day, what to cook for dinner, ‘oh damn’ have to drive the kids around, etc. etc. etc!! PLEASE!! I know this to be true as I was once there and took soooo much for granted. Like ….. walking for instance.

my legs...

I’m tired of always feeling like I have to be shiny happy all the time. My life SUCKS!!! I know, I know, I have a gr8 husband and kids and family and friends…I get that. But, I have no purpose. Without a purpose what’s left. Feeling useless is the most depressing feeling of all. I have not felt like nor have had the energy to make anything for my shop in weeks. My hands cannot hold the tools very well right now. SHIT, SHIT, SHIT!! Who really cares anyways.

EXACTLY!

Blessings and Hope! [still waiting]

Coping…

Posted: October 29, 2009 in family, love, mindless-thoughts
Tags: , ,

We see ourselves with these illness’. We try to come to terms with it/them. Eventually we learn to live with it. But what about our children? How do they learn to live with it, or even understand it? Should they ‘get it’ by a certain age? Should they learn to deal with it?

Yesterday was one of those dayz I was reminded, yet again, about my dis-ease! Ashley had a spaghetti dinner to go to for band. Roger had forgotten something at work and headed back home. I told him just stay home. What a waste to drive back (60 miles) again. He said ok he would. So, I told Ashley that dad was staying home. She got very excited and said that way he could drive her to the dinner. [I prefer not driving and do not drive at night anymore] When dad got home he said he had to go back as they were really busy right now. I was a bit irritated as I had told Ash he would drive her.

Well, when she got home and I told her what happened, she lost it. It was all my fault, now how could she go, she told them she was going to be there, why can’t I be like other moms, good moms drive and take their kids places, it’s my fault she never gets to go anywhere cause i’m an ms freak, etc, etc, etc. These are things I already feel about me daily. They have lost out on so many things thanks to my MS. But, it is not my fault!! I told her to call and maybe a friend’s mom could take her with them. She said NO, that is so embarrassing, no one needs to know about me being sick. blah blah blah. The girl that was going to take her was doing something else, and now thanks to me, she would miss this.

I sat there for a while, listening to her, quietly crying. I cannot imagine having a mom sick. I remember being embarrassed by my parents at times in  my teenage years. It happens. I cannot imagine how hard it is having a mom in a wheelchair. So, I let them vent, let them yell, etc. They have all had their ‘moments’ of frustration towards me. I let them get it out. Does it hurt to very core of my being? YES! But, I cannot stress over it too much or I will get myself sick, literally. So, again, I let them vent.

My anger, is towards the disease that has taken me from my family piece by piece. Now, she did get punished for this once she got it all out. Even though I understand their own frustrations, there is never a time for blatant disrespect! I think as someone with a chronic illness we have to ALWAYS remember, it affects all around us as well. That’s not to say my heart does not break, but so does theirs.

So, how do we cope and help those around us to cope? After 12+ years I should be a pro at this, but not so much!!

Blessings and Hope!!

The heat is not my friend!

Posted: September 12, 2009 in Ramblings
Tags: , , ,

Once upon a time there was a girl who loved the sun, the heat, the beauty of it all. Now, not so much! lol

Today is my dd’s first soccer game. I am unable to go. Why you ask? The heat. It is going to be 96 degrees today. I missed half of her games last year due to the heat, and it broke my heart. Now, here we are again.

We all hear the line…’I have MS, but it doesn’t have me!’ I feel that way, most days. Today…NOPE! It does have me today. It is keeping me from seeing my girl play her second year of soccer. It keeps me from being at her practices. So, there are times it DOES have me. Sometimes we need to be realistic in our situations. Today is that time for me. Yet, in a month or so, I will be able to go to her games as the weather will change and the cooler times will come. In this case, that is the light at the end of this tunnel. This year, I now have my wheel-chariot that can get me on the grass and the dirt tracks. So, there is my other light in the darkness.

I truly think it is in the way we perceive our trials. Do we only see the bad, or can we find the good? I try and the find the good. Does it always work? NO. Are there days when no good can be found? YES. Those are the days that inner strength finds her way in and helps me through. Do I hate having MS, degenerative disc disorder, colitis, migraines, fatigue, incontinence? EVERY DAY! Do I ask, ‘Why me?’ All the time. Do I cry in private so my family does not see my pain? All the time. Do I get angry that my kids have had to know me this way their whole lives and watch me slowly get worse? More than anything!! Did I lose my faith? Yes.

So, I find the humor to get through it all. I laugh when I fall. I laugh when I get the shakes. [hubby says I have the rhythm] I laugh as I try to get back up off the floor with the help of my kids. It is quite comical. Two skinny lil things trying to lift their 6′ tall mommy off the ground. So, in come the 6′ tall 15 year old boy to the rescue. When he realizes he need to push up on mommies bum, he freaks out a bit. “Mom, I don’t wanna touch your butt!” Poor child. lol But he does, and up I go.

I am blessed with a family full of love all around me. I am blessed with friends. Does this make it better? sometimes, yes. But, I’d rather be blessed with all of this and be healthy. This is the hand I was dealt, so I will play my hand and do my best to win. This, is life!

Blessings and Peace!

When the world say, “Give up.” Hope whispers, “Try it one more time!”