Posts Tagged ‘sleep’

I know, two blogs – one day.

Just a mellow check in. lol Mellow, as in me… mellow. Listening to an amazing mix my daughter Ashley made for me. Playing games on FB. I found some I forgot I had. Bubble Witch Saga for one. It’s fun. I’ve been playing it for over and hour. It has me mesmerized.

It’s 1:30 am and, as usual, no sleep in sight. To medicate, or not to medicate? That is the question. At this point, I’m not even sure of the question. Are you? Doubt it.

I really need my room painted something other than white. Some fun colors to match my personality. And no, not black. lmao Although…

paint

My daughter Shelby is itching to paint the interior. I explained the concept of money to her, and explained that we have none. 😛 Yet, it would be a nice change for me. Believe me, I need some change. Feel free to donate to, the help me paint house fund. [donate button on the left] 😉 I actually want my room in pale grays/blue colors. Muted and simple. The rest of the house in light mochas. The girls painted their own rooms in the colors they wanted. Turned out wonderfully. The boy hasn’t painted his room yet. I’m thinking black. Just kidding… or am I.

I’m kinda thinking being up most of the night is okay for me. Not sleeping may be the way my mind is protecting me. Let me explain; during the day people are bustling. I hear cars going by and read about fun things people do. I feel I’m missing out on life. At night, my house is quiet, the road is quiet. Most are in bed, like me. So, by sleeping in the afternoon, I sleep through the sadness of dreaming of lives I will not lead. Being awake at night, the house is quiet, the road is still. I can take it all in and not feel broken. I know, it sounds quite mad. It’s just hard to put to words. I’m not even sure what I’m trying to say. go.figure.

Do you ever hear a song that takes you back to a time and place forever in your heart? Does your heart ache? I literally either cry for a loss, laugh at fun time, or get ‘oh Hell no’ angry. lol Listening to music is one of the things that keep me sane.

2:15 am and all is Unwell. Love that song.

Back to my games! Peace!

Since my last surgery in May this year, Im actually becoming “Tracy” again. I’m gaining back some strength and actually getting out of my ‘prison’ occasionally. I know I’ll never walk again, but if I can transfer on my own I’ll be happy.

this makes me happy!

this makes me happy!

Now here’s the kicker…when I start feeling even a tad bit good, I tend to over-do-it. Badly… I want so bad to be ‘me’ again I push it too far.

Some say the face of MS is invisible. For the majority of people with MS it is considered the invisible disease. But, for 5-7% of MS’ers I’m also the face of MS. The face no one wants to see or think about. Bedridden, wheel-chariot user, pain most can’t comprehend, and my MS list goes on. I’m the dreaded [badly] progressive form. So when I feel ‘good’ I want to do all the things that get put off. Then I crash and burn. And alas, I’m crashing.

I will get the rest that I need for a few days. I pray it’s only a few days. My last crash landed me in Hospital and then a 3 month depression. People, even some MS’ers, can’t comprehend the terrible pain and loss I have had. I hope with all my might they never have to.

Today I knew a ‘crash’ was coming, but I will no let it kill my spirit as I have in the past. Shit, my friend Stephanie won’t let me. Right this minute though I feel like I’m losing my mind. And, yes it’s spelled losing, NOT loosing! A huge pet peeve of mine. Sorry, I went off track a smidgen. 😉 My sleep is back to noooo sleep tonight. Muscles spasms and shakes are taking over my being. I think Aliens are coming for me to do some probing. Although, that may be fun…hey, it could happen. Now I really am losing it. Lack of sleep will make you insane. Trust me I’m there.

hope-hands1

it’s all I have…

Now I will sit here in the dark with the light of my MAC illuminating my room. Will I ever find my peace, my center? I do not know. But, I will always be searching for it.

Peace!

Blah…

Posted: August 25, 2010 in Lupus, multiple sclerosis, Ramblings, RANDOM
Tags: , , , , ,

That’s how I feel. Not so much in a bad way, just in a blah way! 😛 All kinds of things I wan to get done, now really energy or oomph to do them. Little baby steps I guess. I’m up early with the kids while they get ready for school. Once they leave I get the dishes done, then tidy up a bit. Trying to get a little routine going again. Once I get that done, boredom sets in. Not feeling the internet much as of late and have seen all the movies on demand and all my DVD’s. Then the tireds set in and it’s off to sleep I go.

I read on a friends FB status how she was off to lie down and have a DVD day. This friend has Lupus. Someone wrote how it must be nice to be able to just lie around and do that all day. I kept out of it as my first instinct was to tell this person to STFU!!!! What we would give to not have to sleep our days away. To be able to get the fuck out of our house, have a job, do chores, etc.. I knew to move on as I did not want to rip this idiot a new asshole. Ya, we loooove not being able to do things. To sleep all day. What a fucking quality of life!!

OK! Done bitching and I feel better….

xx, Tracy...

My PR buddy, Ruby, was saying how she wants the voices in her head to quiet down. So, I replied to have her voices tell my voices to shut the Hell up!!

blah blah blah

hmmmm

My insomnia is bad enough, and then add the voices and sleep is so hard to come by. I think about what to blog, my website over haul, my Hell hospital visit, and the list goes on. Not even my good meds can shut them up. What good are they then. 😛

Today is overcast and a tad dreary…just how I like it. lol Hoping for some rain. It’s a tad cold, but my comfy bed is warm so that is where I am.

———————–

On a good note:

Since I got home from Hell hospital I have had to use my wheel-chariot 100% of the time. Usually I can get to my bathroom using my walker. [18.2 feet] Well the other day I made it one way, but needed my chair to get back. Last night I realized my chariot was almost out of juice, so I had to try to use my walker again. Woot Woot, I made it back and forth from my tinkletorium!! Go me, go me!! So, now I will be trying to use my walker for the short walk again. Hopefully my legs will keep working for a while longer to be able to do this. It may not be a far walk, but it’s still a walk!! 🙂

As for Hell hospital, no one has returned my calls since last week. Guess they figure I’ll let it go…rofl!! Me, let something go!! OMG, they do not know who they are dealing with!! lol Bastards! So, now I will call them back again and again until they take care of the issue at hand. If ‘S’ told them she did not treat me that way, I will go to that hell hole and face her. I so do not ever want to go back there, but I will for this.

Now I am going to try to get caught up on a few things, and then rest for a bit.

Join me at 10am PST today here, for a gr8 show!!

Blessings and Hope!!

Feeling a bit overwhelemed, so going to take a break for today away from the ‘hospital’ blogs. I need to sort my thoughts for the blogs to come, so today I will be resting. Sleeping and watching movies are what is needed for me right now. The hospital conclusion[s] will be done within in the next week, so stay tuned if interested. These blogs are to help me face it, deal with it, and find my way back to me.

Thanks for all of the support thus far. I am blessed with amazing friends and family!!! xoxo

Blessings and Hope!

For the past two nights my mind has been blank. I’ve been reading the Twilight books. Finished Eclipse in 6 hours and am half way through Breaking Dawn. Loving me some Vampires!! lol

The kids are finally back in school after a 3 week vacation. It figures their first day back, and my first day alone in 3 weeks, I was not feeling well. My kindle has been keeping me company. I was all ready to get out to my jewelry table and create some new things, and BAM could barely move. I so know that when ‘Aunt Flow’ visits, it affects my MS in a yuck way. And what do you know, the bitch came to visit yesterday. I know… TMI!!  😛 So, reading and sleeping was my day.

Today will end up the same, it seems. Other than a conference call meeting at 10am, I’m off for the day for more Kindle time and sleep. I hope this [aunt flow and the tireds] ends soon. I have been designing things in my head for days now and so need some ‘jewelry’ time. It clears my head and makes me feel like I have some purpose. I finally purchased my domain name, so stop by and check it out. A Fabulous Flair It is still a work in progress. Still deciding on backgrounds etc.

Well before I start rambling about more stupid stuff, I’m out!

Blessings and Hope!

Another ‘no sleep in sight night’ for me. But I wonder…is it because I cannot sleep or because I do not want to sleep? I had mentioned a while back that the night is my haven. It is dark and quiet. [the way I like it] My kids call me momma Vampyre. I am normal. No need to get up and go. No need to do anything at all. The house is ‘asleep’ and I can be whole, if only for a short time. Hubby is buzz sawing in sofa city again. The kids [off school] are quietly playing video games. And, again the big dogs are sound to sleep in here with me. Life, for me, can not get any better than this. As I read this, I realize it  may sound kind of  pathetic to those who do not know me. In all actuality, it is quite awesome. I can hear the occasional loud ‘snort’ from sofa city, and the kids pop in from time to time to get a hug and tell me they love me. That’s wicked cool if you ask me.

If I was well, life would be sooooo much more different. But, I wonder, would it be better? Would I be happier? The initial answer is HELL to the YES!! But, really, would it be? My husband would have a better wife, my kids a better mommy.  So for them, yes, I feel it would be better. Sadly, we will never know. Would I give my right arm for my legs to work again, fatigue to stop, MS to go the fuck away…YUP!! Cut it off, no anesthetic, whatever, just give me back my legs and take the MS back!! Hmmmm, ok maybe use anesthetic. lol I mean, I’m left handed…

I have been watching a buttload of movies and get so depressed sometimes. I hate people that can walk!! Ok, not the people so much, but their ability to walk. I get very jealous. Yup, I said it, I get jealous and yes anger plays a part as well. I’m human, it happens. I’m also honest. When I used to pick up the kids from school, I would sit in the van and cry watching all the moms standing around and getting their kids. Some holding babies or their toddlers. I barely got to do that with my girls because by the time they were born the weakness got very bad. I was much too afraid to carry them for fear of falling and/or dropping them. Even with the boy, I was afraid to fall and/or drop him. By then he was 2yrs 4mos. It really sucked! What they did get, was a mommy home with them all the time. Helping with homework, reading to them, being there for them 24/7. So, sometimes I feel they got more from me than from the ‘healthy’ moms. My time was for them. If anything, hubby got the worst of it having to do all the things I could no longer do. Aw hell, it builds character! lol

I used to get mad as for years I knew something was wrong. I was dx’ed with CFS in 1986. I guess they figured a 6′ tall, thin, healthy woman, did not need an MRI or anything then.  I was working and going to college. No wonder why I was tired. Then I wonder if I had know, would I have had children? Would I have married? My answer, most likely NOT! It’s now a tad late for the what ifs. So, I just keep on keeping on and wear whatever mask is needed for the day. My masks are my protection from the world. Those close to me know when my masks are on [sometimes]. Those not close to me do not need to know. It is better for them they do not see the real pain behind the mask. My way of protecting others I guess.

As 2009 comes closer to the end, I wonder…will 2010 look brighter? I guess the real question is, will I look to 2010 as brighter? Just like ‘how many licks to get to the center of a lollipop’… the world may never know! HA

Blessings and Hope …