Tag Archives: fatigue

How dark is your world?

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I try to add an upbeat note to most of my MS posts… but this is a feeling that we all have… it is hard to look around at what we are missing out on, and not feel a little blue… and no one can look on the brighter side all the time… by now, I had planned to have a good job, a kid or two, and be taking care of my mother… it would have been nice to be in a steady relationship as well, but I never was very good at dating, so I planned to just get employed and buy some sperm, and let the rest fall however it would…

but the other day, I wanted to cry… I immediately explained how I was feeling to my mother, because if you don’t voice your feelings they can bury down deep and start to eat you alive… but we were talking about where we would move, and I realized that the things we wanted out of a new home were vastly different, and would never mesh… and that ultimately, all I could do was to make suggestions…

but by this point in my life, I had planned to have the money to have a wonderful home (while asking mom suggestions)

now don’t get me wrong… mom bends over backwards to make me happy, which she doesn’t have to do… it was the thought that I will never (barring a miracle) be one hundred percent in charge of my life…

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But I am still able to write my novels… and maybe one day, they will make enough to give me some measure of independence… my cousin is having a baby… and I will be able to spoil that child, and any future children, and show them all the love I would have giving a child of my own… and finally, mom is willing to move… and I will look at that as the adventure it will be… she is even willing to travel around on walk-about (that’s when we drive from state to state, stopping when we see something of interest)…

these are all wonderful things…. when MS blues come knocking on your door, you need to find one or two things that brighten your world… when the bad makes itself known, you have to remember/find something to take away the sting…

and if you want to donate to Walk MS, Click HERE

or if you just want to check out my Walk MS post, Click HERE

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Starting Fires…

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When someone asks me to explain Multiple Sclerosis to them, I say it is like holes are being burned into your brain… Owwwww… but that is basically what it is like… an electrical fire…

information gets passed from neuron to neuron, sending little electrical surges to get the info from point A to point B… then somewhere along the way, something goes wrong… because of MS, the electrical surges that a healthy brain can use and process builds/hits a wall/spikes…

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On a MRI, these spikes show up as white areas… AKA: electrical fires… or lesions… and when these fires burn out, they leave a black spot… basically a black hole… so when I say that I have holes in my head, I mean that literally…

March is MS Month… reach out to everyone you know, and lets raise money to find a cure, to put out the fires… donate on my national MS page, or start your own… and enjoy each day…

and if you want to donate to Walk MS, Click HERE

or if you just want to check out my Walk MS post, Click HERE

Keep trying

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Isn’t that the truth… if I do too many things, too many days in a row, then I am sooooo tired … And in pain…. I need days to recuperate… it’s really hard to work around this MS detail of day to day life, but most of the time I can… but this means that scheduling too many activities in advance is a bad idea… or is it…

When I went to DragonCon (think costumes, writers, actors, conventions) I knew that just walking around and taking part in the insanity wouldn’t happen… but there were a lot of authors I wanted to see, and a bunch of writing workshops that interested me… soooo what did I do??? I took a chance… I signed up for all the workshops that caught my eye… If I could make it, then I went… And when I needed to rest or sleep in, it was disappointing, but I did…

But planning and resting is all well and good… that doesn’t mean that I didn’t overdo… yep… I wanted to go and see one of my favorite authors at one of the talks… problem was, I was exhausted… totally wiped out… Still, I went… I even sat up front… I mean, right up front… Where all those people I looked up to could see me… And what happened you ask??? A 110 percent fatigue … I tried, i really did… but no matter how hard I tried to keep my eyes open, I passed out… and then my body would do that thing where it jerks awake because you are about to crash face first into a your desk, or your about to fall out of your chair… *clears throat… ahem… cough, cough…* oh, look… my cheeks are red…

so I keep jerking awake just as I was about to fall off my seat… sitting right in front of Laurell K. Hamilton and Jim Butcher… I was embarrassed beyond belief… And what did I do about this embarrassment???

I made sure to catch the next time they were scheduled to talk, the next day… oh, I was still embarrassed but that didn’t stop me… I did however make sure not to sit in the front row… lol… and this time I was wide awake and I had a marvelous time…

always keep trying… and never give up…

and if you want to donate to Walk MS, Click HERE

or if you just want to check out my Walk MS post, Click HERE

Help change the World of MS…

I love this GIF, and felt like posting it a second time… but this post is about an upcoming MS event… Walk MS… you can find both Walk MS and Bike MS events in your area by following the links at the bottom of the post… We have five weeks and two days until the day of the Walk for my area… I will be upping my MS posts until in the meantime… sharing my own MS insanity…

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Starting Monday, March 7th, Fundraising week begins… From Bike MS to Walk MS, there are dozens of ways to show your support… there is even something called Challenge Walk MS… Last year I participated in Walk MS, I even attempted to join in the mile walk around the park… Hmmmmm… that didn’t go so well for me… last year, my walking abilities weren’t as on par as they are this year and I ended up running out of steam less than half way through… it wasn’t pretty… I had to cut through the park, there were tears and embarrassment, but once I calmed down and had a chat with my momma, I enjoyed cheering everyone else on as sat in the shade sweating as if I had just finished a triathlon…

This year the Walk in my area will be across the bridge in neighboring WV… I managed to attempt participating last year because it was downtown at the park… I doubt I will make it this year, but I wanted to give a shout out to everyone giving and participating in this cause…  I also want to participate as a virtual walker…

I have said that MS helped me to find my passion in life, but without the drugs, doctors, and therapies for this disease, MS would have taken my life long ago… it is the support and volunteers that make continued research and development possible… I am grateful to everyone giving their time, donations, or just their kind words… it is because of you that I will get to continue writing and living a life I never envisioned, but that I find small joys in every day… when it comes down to it, it isn’t the big events in life that matter… it is the small moments that mean the most…

If you want to give or join up at your local Walk/Bike MS (and did I mention that Shemar Moore joined in Bike MS last year… yummy… I mean thanks for calling attention to this cause) just …

CLICK HERE to head over to my donation page for this years walk

CLICK HERE to learn more about Walk MS…

CLICK HERE to learn more about Bike MS…

Thank you to everyone taking a moment to learn/give to this cause… and happy wordage everyone…. Tracey Clark

Find your Greatness

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There are a lot of moments in life that remind me of how I want to live my life with Multiple Sclerosis… moments that clearly say, ‘take what you have and make it amazing’… I saw this GIF and it just screamed ‘make the most of what you have’… just because we freeze up, stumble over our words, or stagger as we cross the room… we still have the potential to be great…

there are a lot of things that I have been forced to change how I approach them… and there are others that I am still working on, but I never quit… that is what needs to foremost in mine mind at all times… I have learned that being open and up front about the problems I face lessens the embarrassment I feel when I have a glitch in my mind and body… when I forget my words??? I now just say ‘words’ and those that know me, know that this means I am having trouble expressing myself… they move on and talk about something else, something that can talk about without stuttering… when I first got sick I would cry when I lost my words… and my tears would embarrass me even more…

or the fact that I couldn’t walk through the grocery store without pain and confusion.. that the harder I pushed myself to keep up with the crowd or the person I was with would cause the symptoms to get worse that much faster… now I just let everyone else rush around… if I am having a day that demands that I slow down, I slow down and move at my own pace… I may not get it done as quickly but it gets done… I make greatness in my own way…

Going back to Bed….

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Lol… sometimes I feel like this pooch… it is just too much energy to move your entire body to see the rest to the room…. like I just need to go back to bed… on those days, I stumble my way through dog duties, and do what little can’t be put off, and then I climb back under the covers…

or maybe this pup is having trouble holding his head up… not from exhaustion, but from a weakness that tells your body that using all the muscles involved to get from point A to point B is just overwhelming… on these days, I can usually find a burst of energy that allows me to spend thirty minutes dealing with morning issues… but then it is all low key, or nothing at all…

but when I have to deal with these days, I know that I will wake up tomorrow or the next day, or the next, and all will go back to normal… okay, normal for me… but it is a normal that I have learned to work with… I have to deal with the problems of the day, and always remember that one misstep doesn’t ruin my life… I know that just because I can’t run my errands today, that doesn’t mean that they will never get done…

I will get my books edited, I will make it to the grocery store, I will find the energy to tackle that task just waiting for my attention… life for a MS patient is one day at a time… but I have found that if there is something that I want to do no matter what, I can rest up… lol… even if it means I am forced to sleep in the bathtub instead of a bed… and if I want to go out of town, I leave a day or two early… I always give myself extra time… even if it is to go visit my cousin out of state… I have to get there, and then I have to rest, all so I can visit without falling asleep at dinner… you have to know the obstacles you face, so that you can get as much out of your life as possible…and everything else can be tackled tomorrow…

 

MS Peeps Join Forces

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I found this on Pinterest… and it reminded me of my life… or of what I want my life to be… I want to make something out of the impossible… Multiple Sclerosis hits each and every person differently… sure there are a lot of similarities, but the extent and the angle of attack seems to always be different…

when I first got sick, I was reduced to the mindset of a toddler… ten years later, I feel as if I have rebuilt myself… I still have a ways to go, but the very fact that I was able to write and complete a novel, that I have a number of others in the works??? this amazes me… and I am grateful… I don’t want anyone to think that my complaints diminish the triumphs I have had…

sure… I still have trouble with Q&A, and with understanding and retaining the research necessary in the writing world… a dozen questions that require me to follow and understand enough to give a cogent answer??? that is a situation that still cause me to become upset as become confused and start to stutter, and then there are the headaches that pop up if I push myself to far…

and the eye crossing research??? an hour of attempting to look up and understand the information on my computer screen also puts me to sleep… when I need to edit or look up some facts, I spend an hour surfing the web, and then I am out like a light for three – five hours… I don’t have a choice… which drives me crazy… why in the world would my body drop off to sleep (aka coma) when most nights I have trouble getting my mind to shut down… I mean, its crazy… I drop off as if I have been drugged… but after a few days of narcolepsy, I and finished, and can rest up for the fun stuff…

it sounds crazy that I need to rest up, but a few days of trying to understand and jot down information feels like my mind has run a 20k… it is down right exhausting… and I feel the weakness in my entire body… thank heavens, when it comes to just making stuff up, my mind works a lot better… too bad I can’t just write my rough drafts and let someone else do the research and edits… (for free of course, since writers are the poorest of poor people…)

on a happy note, I went back to the local writers group… think AA for work-aholics… and there is a new member… and another lover of words that suffers from MS… together we can put our deteriorating brains together and rule the world… muahahahahahaha

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