The Next Book In My Series

I like to think of my life like a book series. Not all of the books have a positive ending. But you never know how the characters will figure out that next scenario until starting the next book. Well in my life so many things happen and I have to move on, walk away, shift goals, choice, options, hopes and dreams… but there’s always the next book.

I would like to think of restarting writing the blog and starting back up with my proper health plans, I’ll explain later, as starting this new book. But I feel like I need to somehow finish writing the last book. No matter now painful. More than that I am at a point where I need to actually be working through the damage done to me by my past in order to be healthy for the people in my life now.

But I don’t know where to even start. Not about the last book or even how to start writing about the first chapter of this part of my life. So it’s likely my posts will be erratic for awhile (disorganized)- while I figure out the flow of this again. Until then, I hope my unorganized thoughts help others as I figure out these experiences and how I’ve changed from them, through writing it down to you.

Melting Spoons

To have energy (or spoons) right now would be wonderful. I have so much to do, not the least of which is updating everything that’s happened to me on this blog. (Though I would like to set-up the Dragon Dictate I got for Christmas first. ;) )

I am sleeping constantly. I am falling asleep while I eat. I have to have someone keep me awake and keep me eating, otherwise I fall asleep mid-meal. When really tired and unlucky, I’ll fall asleep mid-chew.

Trying to deal with the taste change from chemo is exhausting. Just trying to get enough fluids is exhausting. :/ Add in just pure inability to stay awake for a certain number of days after each treatment: My life has been fully interrupted.

I haven’t any spoons. Or if I do, it’s like a living nightmare, and the spoons keep melting through my fingers the moment I have my fingers wrapped around a few.

I’m so unhelpful in my own life right now I can’t imagine what it’s doing to the people who are taking care of me…

Screaming Migraine

As I sit in front of my computer screen with half my vision pearled out by sparkling grey and white wavering light, I listen to the child screaming outside. Growing up, we were not allowed to scream unless we were bleeding or otherwise injured. All of these kids running around the neighborhood screaming keeps my hackles up during the day as it is and given this ridiculous exploding migraine–well, for a rare moment I’m actually considering child abuse! I would really like to go duct tape that child’s mouth shut! I really think I could plead insanity or crime of passion from pain! Why won’t they just STOP SCREAMING!! I should be the person screaming. I actually am in pain!!

I had been doing so well that I decided to not refill my pain and vertigo MEDS, but I ended up having awful dizzy spells all week and now such a lovely migraine. I am so miffed!

I was trying to get reading done, but it is interesting how I can’t really scroll my eyes back and forth across a page without losing my grip on where the ground keeps disappearing to! Who needs a roller coaster when you can just have Vertigo!?

I’m drifting in and out of sleep, but not actually able to fall asleep due to the excessive pain. I think I forgot to take my invisible hat off the other day. This is a problem, cause my brain seems to be swelling in to it, judging by the fact that it feels like my grey matter is being squeezed out my head through my temples!!

Every time I pause to look out of the half of one eye that still works, I entertain myself with what ends up being typed on the page! I am taking twice as long to type this because I have to first stop laughing and then retype almost everything–unless you might enjoy this blog more if it were filled with enough typos to conclude I were super drunk. ;)

I am hoping the screaming outside will turn into white noise, so that I may drift off to a peaceful sleep and then wake up without my brain echoing the screams of children outside. Now that would be nice!

Not Getting Sleep

The problem is my brain stops working; when I can’t sleep or my sleep pattern becomes completely incorrect. When I say stops working I mean it feels like my brain starts shutting down, I become more of a zombie or cartoon character by the day; I forget words, what I’m doing, how to do what I’m doing, I fall asleep randomly for a few minutes, and I totally miss what’s going on around me!

I really wish I could give myself something to do at night. When I can’t sleep, so that I can feel productive. Which works really well in the beginning, until my brain stops working. Then doing anything that isn’t muscle memory becomes extremely difficult. My problem with that is, anything too muscle memory, just gets boring for me. I like to learn, teach myself things, express. I could knit; my hands and wrists are exceptionally swollen right now. I may not be able to figure out a position to hold my hands in. Also I may not be able to find a project that I’m in the mood to knit. Which would mean starting a new project. My brain isn’t up for figuring out colors, numbers, patterns, designing. I can easily replace the word knitting with any of the other types of artistry I like to do; I would still end up with the same situation. I will find a new something project-wise soon. Right now I just feel bummed I can’t express my artistry:(

But when I haven’t been getting sleep I start feeling like I am disconnecting. I don’t feel right and it’s so frustrating. I would say upsetting, but there’s this lack of overwhelming emotion, almost like I am too tired to feel upset.

Even writing right now is difficult. I want to get my thoughts out. It’s amazing how long it takes me to get one sentence, let alone one thought written out. But it gives me something to do. Perhaps it will exhaust my system in some way I haven’t thought of to allow me to go back to sleep? I can’t even do research. I can’t process anything I try to read. this is an all day thing not just in the middle of the night.

Not sleeping at night affects my day so badly. I have a lot more trouble coping with anything during the day when I haven’t been sleeping. I’m not referring to the cranky, snappy, over-emotionalness that goes with the initial lack of sleep or weird sleeping. More like I feel like a zombie; like I’m not really a person that is fully connected in the world. No I mean the completely emotionless not processing, what you are saying, not understanding what my response to the situation should be, totally disconnecting from reality… it’s less disruptive, certainly; but it’s more disconcerting and dare I say almost scary for me to feel?

The less sleep or the more weird sleeping I get the worse I will be triggering my Fibro flare-up too. Up until now I hadn’t been doing so badly with my Fibromyalgia. Until recently my Arthritis was the disease being a distractingly annoying twit. Well… also my MS or whatever-not it is, we don’t know so I’m choosing not to think about it at 4:00am… My muscles are starting to ache and the bruising points down my spine restarting to not be even lie-on-able.

I often feel like I am opposite most people with Fibro. We find that fibro-points generally progress in a similar fashion despite the person. The spine fibro-points aching is generally an indication that a Fibro flare has gotten bad enough that it’s at its “worst.” In my case I tend to get the spine pain if not first than pretty close to it. Honestly I haven’t figured out if it is just that I have trained myself not to listen to that “low a level of pain.” If having hurt for so long, as with other particular pains, I’ve trained myself to maybe note it in passing. In general I just forget it after the initial notice unless the problem becomes past my pain tolerance or consistent in presentation.

I know that I will find something that gets my body back into the right sleep-cycle. I know I will find something to do to pass my time and even potentially feel good about something by being productive until I do figure out how to correct my sleeping this time around. While I am going through it though, I have found that sleep problems throw off my mood more than almost any of the other symptoms I deal with long-term. I will get through it, but more than so many of the other issues I deal with, I have to continuously remind myself of this with the lack of sleep becoming so bad. I start feeling like things can’t end or I can’t get out. But I’ve been through this too many times to mope for too long. Too many times to forget or ignore that I know it gets better! I just have to wait. Waiting is difficult for anyone. I’m an exceptionally IMPATIENT person!! I don’t like just sitting around. When I decide I want to do something or have an idea I’m pretty hard pressed to stop from getting things done.

I got two loads of laundry done today… Usually I would feel proud of this, on a day like today, when I’ve been hurting too much to function physically! When my mood gets like this I have trouble being proud of much of anything:/ This makes it so that I minimize even the bigger accomplishments that I might (by luck) manage. Of course the little things thus being “nothing” in my head, I doubt myself; that I should have done better, that I shouldn’t have bothered at all. That I don’t have anything bigger to be proud of and never will…

Yeah I tear myself down that’s for sure. I never have mood issues like this until I am having sleep issues. Hahaha gee… ya think maybe they’re related? Yeah me too… I’ll get up and get some vitamin D tomorrow, go outside and listen to music or read, “I can mope inside just as well as outside.” and I’ll feel so much better, I’ve already decided, humph;)

Finding Words

I already lost my vocabulary to an exponential degree. But to be on so many migraine meds it makes me slow down my brain… then I’m like “Uhhhh…” yeah that doesn’t help! But lately I am on an entire new level of lost with my words. I’m not just losing them anymore, apparently my brain is replacing them with new words. This makes speaking often frustrating. For someone like me, an obsessive talker, well it doesn’t alway end well! hahaha

It can end in some hilarity, but it can also end in frustration. One thing that can be difficult to explain about Lupus is how all of the syndromes and symptoms compound each other. So if it isn’t one thing it’s another might not be a bad way to describe my life.

Trying to speak and “sound intelligent” requires that what is in my brain actually translates correctly on its way out of my mouth.

• I often know a word and can think it, but everytime I try to say this word instead of this being what I say a different word that my brain associates with the previous is what I verbalize! Usually I find this particular situation frustrating, because I know what I want to say and something is stopping me from saying it. Example: I’m trying to talk about a giant shrimp boat Isaw the other day, but the only word I can get when I try to say shrimp boat is yacht… this is not the same thing brain. So I end up resorting to: yacht only the kind for fish restaurants to get their fish hahaha Great image right?! haha

• I have times where I can’t even think of a word. I have all of the sentence around this one word, but that word is gone. If i’m lucky I remember what it starts with or what a synonym is. Often I just wish I could bleep out a part of my sentence and then we can just blame the listener for missing what I said based on technical difficulties;)

• I lose my train of thought. I know everyone gets distracted. But my girl friend says it’s like I have visual turrets, I’ll be in the middle of a sentence and…. oh look pretty shoes I like her shoes… off on a totally different topic… ten minutes later out of the blue I’m back on that last topic and I’ve lost every listener who isn’t ADD/ADHD!! This is happening far too often lately, so I’ve gone back to working on some techniques for my social skills from therapy when I was younger. ADHD isn’t something that you manage and then it goes away when you grow up. It’s something that even as an adult we have to continue to work on our skills and train” ourselves regularly to maintain the positive skills and habits established when we were younger.

I also lose my train of thought for other reasons. I mean like poof gone! Right in the middle of an idea or sentence. Sometimes I’ve just gotten to the meaty point of my topic and out of nowhere…. what was my topic again? This is from the strokes. This symptom developed at the time I was having them. It got better with physical therapy for awhile. But lately I feel like it’s a steady climb to absent-minded professor status. If only I had the ph.D to back up my brilliance that my airhead verbal diarrhea doesn’t properly convey! But that’s where it’s fun to go with, ” So speaking of…” and pick a new topic. Your friends will say, “But we weren’t talking about that” “Exactly!” hahaha and we all laugh and you feel good and it’s funny!

• Then we have the lovely medication dumbing down. We all know what that foggy my brain can’t think feeling that some of our meds can give us is. Nobody likes it. I sure don’t. I prefer to feel clear as silly as the hurdles I already have to trip over are. Sometimes these meds are the only options though. When that happens I have a zombie day… careful I bite and you’ll catch my Lupus (it’s the zombie virus ya know!) but only on zombie days, otherwise it isn’t catchable;) hahaha

I have a number of other issues that mess up my verbal skills. Though anyone who knows me in person will say I talk way too much, cause I do! Point is, I found ways to cope with the frustrating factors of communicating even with these road blocks in place. There’s always a detour and the detour is the real adventure every time.

Anything can go from frustrating to hilarious in only a few…. words;)