Chronically Something
Chronicles of Life with Multiple Sclerosis
"The unwell and disabled life asks nothing more than constant bravery."
(via sickgirldiary)
So apparently one of the effects of MS is slurred speech. Anyone who’s ever talked to me in person gets why that scares me.
I have issues with this but apparently I notice them way more than anyone I know. I can hear it, feel it, sense trouble finding words at the same time.. but since I’ve always been shy and mumbling I guess its not as noticeable as I think it is.. doesn’t make me any less self conscious.
Seriously.. even identified Autoimmunes should shut it.
losing feeling in hands and legs several times a day for a while now. Scary and more so ANNOYING
My back/neck hurts and my hand is all tingly. I get it, unidentified autoimmune disease. I know, you’re here. Shut up.
Where I sit….
Currently, in bed, with a starbucks. Only typical. (:
Health wise: I’m better than I was before my last hospital visit last week however not as good as I was when I left rehab over two weeks ago.
So Im filled with mixed feelings: I’m happy I’m better but rather discouraged I have regressed…again.
My walking is what seems to be the least affected. I still get around the house with my arm crutches and wheel chair for outside visits. My legs will buckle or I’ll have a little limp but this is I guess to be the new “normal”.
My arms/fine motor skills are dependent on factors, such as how tired I am, if I’ve taken my meds, etc. It is rather frustrating when you tell your arm “reach for this” and the brain just can’t get the message there. I find myself having to come up with clever ways to do normal things. Example: text mom to help. (: (Love you mom!) I also am still experiencing quite a lot of tremors in my hands when not in “resting” position. This makes it challenging to eat, write, fold clothes, life. But I see it getting better daily.
My speech is probably where I’ve noticed the least progress. One of the things I have always loved to do (since I was about 1) has been talking. To not have that ability is quite challenging. The upside, sparkle side of it is though it has turned on my listening skills. Listening to music, to others, to mother earth, to God, to happy vibes, to whatever it is around me. This I am thankful for.
Fatigue. Let’s just say I slept 14 hours last night. We will leave it at that.
Cognitive. I have noticed change in my short term memory but this is only natural due to where the lesion is as well as due to adjusting to medications. This has been improving.
MS is a challenging disease for everyone that has it. But for me, what has been most challenging is its unpredictability. I have no idea how I’ll feel in an hour, 10 minutes, next week, next month. I’m a planner. Having your life be so “unplanned” is a huge burden for me.
Now, do I sparkle? Well, of course. (: My spirits are high. I am thankful that I can see progress daily that shows improvement. I am thankful I have one of the best MS doctors looking out for me as a patient. I am thankful for the MS Society and all they are doing for me. I am thankful for so many things.
I am thankful I can still sparkle. Which is hard for a lot of people who have chronic diseases. I contribute it all to your support, in whatever way you share it!!
So thank you, please keep it up, and know that I have my good friend St. Therese looking out for you too (all my readers). Religious or not, having people in high places sending you good vibes cant be a bad thing. (:
Have a glorious day, hope for all those that have MS and HOPE FOR A CURE!!!
Love, Eliz
PS: side note: send some support to my little brother as well. He is at summer camp and we just learned last night that he has second degree burns on his foot due to boiling water being spilled. poor kid. his spirits are high and doctors say its healing nicely!
“when it rains it pours. but you wait and hope for that rainbow”
Tired
One of the symptoms of MS is fatigue.
Definitely feeling that one today.
Had last date with plasma exchange. It was a bittersweet break-up but we knew it was best to discontinue.
Dad was able to come and experience some of my therapy this morning. I have been walking well with my forearm crutches, today 350 feet. These will mostly be used for around the house and short visits. I was fitted for a wheelchair and this will be used for longer distances.
I’ve received quite a few emails of hope and encouragement and stories and I thank you; I will cherish them forever! I will also respond tomorrow when possibly I’m not so tired. (:
Hope for a cure!
What a lovely picture right? (:
Just thought it’d be informative to illustrate what symptoms I have now so when I get better or improve I can look back and say “heck yeah!”
This picture illustrates the symptoms that can be associated with multiple sclerosis.
My first lesion I experienced the symptoms of sensation. These have mostly healed (meaning that attack went into remissions) though sometimes when I’m very tired or it’s late at night I’ll lose feeling in my legs.
Currenty I’m experiencing symptoms of central, speech (dysarthria), musculoskeletal (most promotitely ataxia). The hope is that since this lesion is on my brain that we can retrick or retreat through repetition the nerves to start behaving.
How sad is it that it’s Friday night and I’m writing on a tumblr medical symptoms of a disease that I have? Shouldnt I be getting all dressed up and going out to Hofbrauhaus with friends?
But as my Grandma wrote me today, I’ll still be able to have that normal life (she’s great btw). This is just where I need to be right now. Creating awareness. Hoping for a cure. Being thankful its not worse. Being thankful for all of you and your support.
Have a great Friday night and if you do go out, have a nice cold dark one for me. (:
Elizabeth
MS affects us all
Please watch and share this video. It’s a great MS awareness piece.
Hope for a cure!!
Thank you!! (:
and even if you can’t have faith it’ll work out.. just resolve to keep on trucking regardless. Eventually you’ll forget you’re walking through a swamp and start to enjoy the smell! (like a floridian! ha! you’ll also ignore the snakes that aren’t within .5 ft of you)
(Source: sparklebutonce)
Tired
One of the symptoms of MS is fatigue.
Definitely feeling that one today.
Had last date with plasma exchange. It was a bittersweet break-up but we knew it was best to discontinue.
Dad was able to come and experience some of my therapy this morning. I have been walking well with my forearm crutches, today 350 feet. These will mostly be used for around the house and short visits. I was fitted for a wheelchair and this will be used for longer distances.
I’ve received quite a few emails of hope and encouragement and stories and I thank you; I will cherish them forever! I will also respond tomorrow when possibly I’m not so tired. (:
Hope for a cure!
About Me
Thoughts, ramblings, and unsolicited advice about life with Multiple Sclerosis / Chronic Illness, by me and other people on the internet.
Because sometimes it feels good to be able to say "oh man I can relate".
My background. Brief history of how the shit hit the fan, when the shit hit the fan. Written then from that POV. Lets call this link some context to this blog
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