counting my blessings

i've been feeling pretty miserable lately. more of the same old complaints. sick and tired of feeling sick and tired. so, i typed this to make myself feel better:

I have a wonderful life.
I wish my disease would stop distracting me from that fact.
I have a strong, positive spirit.
I am smart and creative.
I am compassionate and giving.
I am loving and loved by family and friends.
God loves me as He does all people on Earth.
I have many interests that keep my mind active.
I have support to keep my body active.
I have money to pay for my needs and some wants.
I have plenty of food that I enjoy, not just to sustain me.
I have a comfortable home.
I have had great experiences and expect to have many more.
I have made mistakes and learned from them.
I am persevering with a difficult disease.

what makes you feel better?

dependence

first, let me say that i am very grateful for the many wonderful people in my life upon whom i depend.

that said, dependence is really disturbing. we are born dependent on our parents and go through many trials to gain our independence. if we are lucky enough to live until old age, we may find ourselves again dependent on other people. i never considered the idea that i would become so dependent at the age of 38.

i am fortunate to have many things i can do independently, but the number of things i need help with keeps growing. there were walking aids and then wheels when walking left me. there were hand controls to drive, but now my arms are too weak to use them. now i need help with the simplest things - bathing, dressing, and using the toilet to name a few. ugh! i feel like a toddler saying, "i want to do it myself!" though my body often doesn't let me.

there's no solution to my frustration. i simply have to accept my limitations and ask for help. then i take time to yell, cry, and vent my feelings. i usually keep that to myself, but it feels good to share it here. thanks for listening.

frustrations

do you ever have a day when you can't move a certain way? maybe you slept funny and your neck is so stiff that you can't turn to the right?

now imagine years of days like that. ugh. i got used to my legs not moving the way i thought they should. i got used to my left hand not moving the way it once did. lately, my left hand has been giving me much more trouble. try doing something one-handed. most things need the second hand to at least stabilize something. if you've ever tried to push a wheelchair with one hand, you'd know steering is very difficult. just now, what prompted me to stop and write, i was trying to back up. my good hand got me going, but without the strength of the 2nd hand, i was soon backed into a corner. so, i turned around and went forward instead of backward. it got me out of the corner, but i didn't yet get where i was headed. i had to stop here to vent.

thanks for listening.

sometime, pick a task and watch how many body parts and movements it takes to complete that task. be grateful that you usually don't have to pay attention to all those little movements.

fatigue

it is very hard to describe. fatigue is not the same as being sleepy. i've even started differentiating between muscle weakness and fatigue. today it sort of feels like when you're coming down with the flu. my body feels warm, slow and heavy. the smallest activity, like typing this, will wear me out. this feeling has kept me home from work. i've had to cancel plans to see friends. in fact, now i give the disclaimer, "i'm planning to come, but if i wake up that morning feeling fatigued, i'll have to stay at home."

fatigue is one of the more manageable symptoms though. just rest. it is most frustrating if you have an active mind. there are so many things you'd like to do, but you don't have the energy to do them.

chronic

let me tell you... chronic is one of the worst parts of this disease. as a kid, most of us get the flu or something else that makes us feel awful. the flu goes away though. we have a few horrible days or maybe weeks, but eventually, we feel healthy again. now imagine you had the flu and it never went away. you might have some days that are less awful than others, but you never get back to feeling like yourself again.

fortunately, MS doesn't make me puke, run a fever, or keep me in bed all day. yet, i've never gotten back to feeling like myself again. i think most of us at 38 years old wish we still had the body we did at 22. i'd literally have brain surgery to get back my 22 year old physical fitness.

it is so frustrating to have to struggle to do simple things day after day, year after year, with no end in sight. each day i wake up and have to listen to my body, asking, "how are we today?" i say we because my mind, body and spirit all have to work together. will my body let me do what my mind wants to do? will my spirit be strong enough to cheerfully persevere through fatigue and uncoordination? at the end of the day, will i feel good, bad, or indifferent about what i was able or unable to do?

the last question is most important. if i can get to the end of a really difficult day and say i felt pretty happy most of the day, i know i'm doing ok. fortunately, i'd have to guess that over the past 15 years, the majority of my days have been happy.

i came across this quote today:
I am more and more convinced that our happiness or our unhappiness depends far more on the way we meet the events of life than on the nature of those events themselves. ...Wilhelm von Humboldt
i choose to meet the events of my life, MS and all, with a positive attitude. otherwise, i'd spend my life being miserable. for me, that's not an attractive option.

today i'm feeling weaker than ever, but i choose to find things to make me feel better. writing here is one of them.

good days and bad days

yesterday, things weren't bothering me much. it was easy to look at my list of positive effects of MS in my life. today, i don't feel like it. i woke up feeling achy and weak. i couldn't concentrate on things i needed to do. my abilities are no different today than yesterday, but i sure am grumpy. i can only guess that my hormones are fluctuating. i just wanted to let it be known that i do have bad days like everyone else. without the bad days we wouldn't appreciate the good ones. that's my positive inner self looking for the silver lining in every cloud.

the brighter side

there is a bright side of MS, you just have to look for it. here's what i've found:
good parking spots
i never have to look for a seat
my legs don’t get tired from walking
crowds part for me (like a queen, noticed Ellie)
i am proud of living through this suffering as an achievement
more people look at me, giving me more chances to share my smile and loving energy
it encourages spiritual exploration
i help educate the public about needs and rights of people with disabilities
i set an example of a positive outlook in the face of adversity
i give others the chance to be helpful and feel good about themselves because of it
life is less ordinary
larger range of experience to draw on to help friends (doctors, tests, diagnoses, medicine, depression, struggle)
it puts smaller problems in perspective

light

i will tell you one good thing that came from my MS diagnosis - soon i'll share with you the many good things my MS helped. the first good thing was that it encouraged me to begin a spiritual journey. i was only 23 and i was not very spiritual. i believed in God but no particular religion. that remains true actually. i like to explore all religions and adopt the elements that fit me.

while i still don't consider myself religious, i have become quite spiritual. adversity prompted me to find some more support. i had and still have a great network of friends and family who help me in lots of ways. then i added a therapist and anti depressants to round out my mental state. i still wondered, "HOW AM I GOING TO DEAL WITH THIS!" the answer is: slowly, carefully and with determination. i needed to know that there was a power greater than me that would carry me on this long walk - pun intended. i needed to believe that i could speak and ask questions about my life. i don't claim to hear God's voice (or even truly KNOW there is a God), but i do feel some comfort when i reach out through the quiet for love and support. i believe God hears me, knows what i need, and helps me - even if it's not exactly the way i want it. of course, if i had my way, my MS would have disappeared long ago.

i believe there is a purpose to my life - to share the light God gave me, so that others might find their light as well. i taught elementary school for 10 years. i worked with over 200 students. if i'm lucky, those students felt my love for them and that helped them feel their light. in my "positive thinking" blog, i am trying to reach out to others that they might feel my light and in turn, feel their own.

i don't know if i would have taken a spiritual journey without my MS. i don't know if i would have found my light and ways to use it. if my MS was a catalyst for many good things, i can't say i regret it. it has helped me become who i am. still, i'd gladly be rid of it and promise God that i'd carry out my purpose. it doesn't work that way though.

yes, i have MS, but i also have a very rich life, spiritually and otherwise.

1994

as i was on my merry way to a degree in special education, my immune system was gradually eating away at my nerves.

(MS is an auto-immune disease in which the immune system thinks that the nerve insulation - myelin - is a foreign object that needs to be removed. as the myelin gets attacked, it forms scars on the nerves. sclerosis means scars - multiple sclerosis = multiple scars. as these scars develop, they prevent messages getting from the brain to the parts of the body those nerves control. initially, the affected the nerves in my body controlled my legs, bladder, and bowels.)

i was living alone, driving, and walking from parking lot to classes/grocery store/mall. at some point it hit me that my problems were getting worse. i used a cane but still struggled to walk. on more than one occasion i had bowel incontinence. (i'll leave it to your imagination how disgusting that felt. it's not something i like to discuss.)

my positive attitude was faltering. i was sad and scared about what was happening to my body. i became depressed to the point that i couldn't get myself to classes or even enjoy time with friends. my mom saw me sinking and helped me to find a psychologist for counseling and a psychiatrist for anti-depressants. after a few months of help i started to get back to myself. my professors were very understanding and helped me complete my courses. my parents took me back home. i got on with life, dealing with my MS when necessary.

that was my hardest year emotionally. i survived though. i finished my degree in spring of 1996 - but that's getting ahead of myself. much more to come...

1992 - 1993

the beginning started before i saw a problem. only in hindsight can i see the MS symptoms as such. in may 1992, i noticed that i sometimes had the urge to pee but nothing would happen when i got to the toilet. they call this 'bladder hesitancy' and it was an issue for years. the following spring i had another odd occurrence. while standing in the shower, my bowels moved before i could even turn to get out of the tub. this also became much more of an issue as years passed. that same spring, i went for a walk and my leg seemed to fall asleep. i could barely control taking a step. each of these symptoms went away as quickly as they came.

none of these things had me worried. if you know me, you know i don't worry till a problem is screaming in my face. i was diagnosed in august 1993, but my worrying didn't start until the spring of 1994. i'm getting ahead of myself though.


in june 1993, 3 different co-workers (i was an aide at a special needs school) said it looked like i was limping. i felt like i couldn't walk in a straight line. i finally went to my family doctor. he didn't have a clue. i told my aunt what i felt and she encouraged me to see the neurologist for whom she worked. in june and july we tested - MRI, spinal tap, and evoke potentials (measured my nerve activity). by august it was clear: i had multiple sclerosis.

my mom and i read lots about the disease. i wasn't worried because the worst that was happening was a slightly off-balanced walk. i was never all that coordinated anyway. i headed off to Trenton State College (now The College of NJ) in the fall to begin my master's program in special education.

my doctor said the best thing i could do was to keep a positive outlook. if you don't know me, check out my 'positive thinking' blog. keeping such an outlook was 2nd nature for me. i'm sure it has helped me get as far as i've come. that, and God's grace. my diagnosis did one good thing. it started me on my spiritual journey.

that was the beginning. more to come in future posts.

15 years

it was 15 years ago this month that my neurologist told me i had MS. little did i know what path my life would take. i remember thinking, 'this isn't so bad, as long as i don't end up in a wheelchair.' well, here i write from my wheelchair. i'm still more grateful for my life than i am disturbed by this disease.