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i just want to be

Mar 16, 2012 - 0 comments

Multiple Sclerosis



the steroid aftershocks are beginning to wear off a bit…i have some leg swelling left but that’s about it…my beast on the other hand is having one hell of a party…the only thing that has calmed down and started working better is the swallowing…. i remain dizzy, lightheaded, tired, and full of lead… such is life i suppose

we have 3 more days off… for me it seems like every time i have a break in work my beast acts up and i spend the whole time trying to recover and get by….today is a day in jammies…the first nap of the day was before 11 this morning…i have many new symptoms i’m trying to adjust to … i hate that part… once i get used to them i do alright with it

i am being pushed to quit working…so this morning i’ve spent time reading all the employers rules and regs on leave vs short term disability plan… but how does one survive while waiting for disability to be approved and kick in? this is the huge dilemma…. months, maybe a year or more with no income before some fed decides whether or not i should receive any benefits…i just don’t see how i can quit… i really don’t

is stress making me sicker? the regimen of work and all that goes with it… using all my energy to produce and try to keep up with things in my job which leaves me no energy or gumption to attend to the daily things in my personal life… there is evidence that if i stop working i will feel better and possibly MS will slow down some…. who knows….i don’t think they really know… it seems to be all trial and error…
we are big furry guinea pigs

if i wasn’t working i could rock along and then back out when needed… go for the down time when it’s called for without fear of repercussion or “punishment”…. less judgment from those who rely on me to perform at a certain level…. less guilt when i am unable to do what is needed…

i spend a great deal of energy trying to make sure i’ve remembered everything… notes, lists, more notes… calendars with reminders, scheduled emails to myself… all in an effort to perform at an acceptable level… it takes three times the work just to keep up and remember what it i’m supposed to be doing on any given day… sadness…. fear…. guilt… all zapping me

i’m trying really hard to get to the full acceptance thing… i say the words but not fully believing it yet somehow… still pissed still sad and all that other crap… i cry… then i laugh… and then i tell myself it’s all okay really… it is what it is and i’m alive, i’m happy, i have a great life…. logically that is all true… where is the acceptance? where is the guidance i need to figure out what is the right path? i’ve turned it all over to God… i’ve talked it out countless times with those around me who are impacted the most… and i don’t know what the right path is…

what i DO know is that i’m getting worse.. but that is to be expected…. the big question is this – am i getting worse because of my current lifestyle? would i get worse by making some changes and resting more, relaxing more, doing more of the things that make me happy?

and fear… i’m so tired of being afraid….how we will pay bills? how will we eat?

i don’t like that “MS doesn’t have me” ********…it does have me… now i have to figure out how to live WITH  it and continue on being happy ….i get sick of all the well intentioned advice and pity… please don’t pity me… please, just don’t

i don’t know that illness makes anyone better or worse or is a gift… but i do think it makes us re-examine what’s important…. what our priorities are and maybe find new skills or interests to get through the day… i think i see things differently, appreciate things more (sometimes)… my values have changed… my priorities have certainly changed…

pain… a one way ticket to the center of my soul… if you’ve lived with chronic pain, you know what i’m talking about… self-examination…. it’s not about courage or strength or anything else… it’s about learning who you are and what you are willing to sacrifice…what you are willing to give or give up…. i think we are forced into strength or courage

i was told the other day that i was brave and strong…. um, what choice do i have? i’m no stronger than i was before, i’m no braver either…. if i want to get out of bed each day, i just have to do it… regardless of how i feel… do people tell me i’m brave and strong because i’m still living? i’m not going to kill myself… does that translate into strength? courage?

i was watching my stepmom walk perkily into the house the other day and it made me mad – not at her but at my situation… at my body, my brain, God…i want to walk like that again… be able to taste the sandwich, feel my forehead….not be dizzy…i never thought that would be too much to ask for…. but they are things that are gone and may or may not be back…

i got the “you look great” comment yesterday…. bastards… why would someone think to say that to me? you don’t look sick… you look fabulous… you are doing so well!   how the **** do you know? i never heard these comments before i was sick -

“you look good”   – now i get it all the freakin time…i look the same to me…well, actually i look older and fatter… so i know i don’t look as good as before …. normally just give them a “thanks” and walk off
i don’t want to be pitied or admired or anyone’s inspiration…. i just want to be….

is that awfully selfish of me? it feels like it is… i guess what i am really thinking here is that i just want to be… i just want things to go back to the way they used to be… i don’t want to be inspiring or admirable or strong or brave or loaded with courage… i just want it to all go back to before… but if this is my journey to live, i suppose it’s better to be those things than to be a lump in the middle of the floor….

p.s. i do appreciate everyone’s well intentioned thoughts, prayers, and comments…. i really really do… they boost my ego and make me smile mostly…. the thing is though, i’m still me…. just a little slower, a little altered… a bit fatter and a bit dumber… just what happens…

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