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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Let’s Go Swimming

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Swimming has always been a therapeutic thing for me… but ever since I got sick, I have found that a warm bath will put me right to sleep… I swear, ten minutes in a nice warm tub and I am fast asleep… when I can’t sleep, I get in the tub and the next thing I know, it is ten in the morning… I spend hours in the watery bed… I prefer to call it swimming… lol… I don’t know if water does it for other Multiple Sclerosis patients, but for me it is my number one relaxation…

there are nights when my brain just won’t turn off… story ideas run through my mind, running loops through my internal hamster wheel… the only way to turn off the voices is to soak them out… lol… now, I hate edits, but I love to make up new stories… new ways for my characters to grow… right now, that is my Skymann family… I just got done running through some edits for the first book in the series, and off to the beta reader it flew… but that means there is room for the voices to start throwing out more ideas, more stories and characters…

But its about more than relaxing and brainstorming… the warmth of the tub has been my only escape from the pain in my legs and back when nothing else will work… miss firing electrons??? that’s what my doctors all say… I even went to a pain doctor, but she flat out said she didn’t like to treat MS patients because they can never get better… WTH??? So I will continue to soak and think, until the MS doctors realize that there are different types of pain for an MS patient, and only the patient can know what will and won’t work… (at least this is the way I see it for me)

there are the headaches that no amount of pain pill will help, though a vasodilator will relieve… (a pill that my doctors have chosen to stop prescribing, that god my headaches have become few and far between)… number two would be the joints and muscle pains… which I have found are better dealt with in a warm tub… it is a type of pain that reminds me of having the flu… everything aches… a warm bath helps…

and finally, there is the leg and back pain that makes me want to amputate something… it is a step above and beyond flu aches… it is an evil that refuses to go away… and something that has me spending eight hours in the bathtub… it is a pain that robs me of more sleep than any other internal voice could hope of stealing… and it is a pain that I know from experience responds to pain pills, but what do I know… its just my body…

Wear your sweat with pride

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OMG… Hot weather and my sweat glands sooo do not get along… I melt like an ice cube in 110 degree heat… I hate it… it is sooo embarrassing to be standing in the middle of a group of people enjoying the breezy 70 degree weather, and there I am in shorts and tank top, and flip flops… drowning in sweat… Sweat that increases with anger, tears, and especially anxiety… Anxiety that hits me at every turn…

I am doing so much better these days, but I still become confused at the drop of a hat… and that causes??? you guessed it… Anxiety…

And explaining to people that I may need for them to repeat instructions multiple times causes??? YEP!!! Anxiety….

Large crowds, meeting new people, asking questions, making phone calls, making a speech…. ???? …. Anxiety, Anxiety, Anxiety, Anxiety, ANXIETY…

but on the positive side… when I first got diagnosed I couldn’t even leave the house without my temperature sky rocketing, and my lesions firing up causing a flare up (exacerbation) which manifested in headaches that brought me to tears and caused my out of control emotions to screaming/ crying tantrums… Which caused embarrassment… which caused??? OMG…. more Anxiety…

I had to spend the first three years or more in one room that had a window air conditioner on top of the central cooling system… when I was first diagnosed, I kept my hospital room sooooo cold that the nurses actually grabbed a jacket before entering… lol… and yes, I was there long enough for the staff to know that my room would be freezing…

Plus side… I have been out in 80 degrees (sweating) without a headache… so I will take that as an improvement…

*As for that perfect world where the temperature is always perfect… that would be San Francisco… Mom took me there in the early days because it was on the list of dream vacations… if you have severe heat issues, vaca in San Fran… it is wonderful… these days, I enjoy a little heat when it is horribly cold… I might even need a jacket if I ever go back…