quote

i read a children's book today and found something meaningful, especially relevant for my past few days.

The night is shelter for those who weep. –from Moonsong Lullaby by Jamake Highwater

despite my positive attitude, i have days when it's just too much. i vent to friends and family, i write, but that's not always enough. sometimes i just need a good cry. there's something comforting about crying in the quiet of night. the quote helped me to know that others feel like i do.

hope

my last entry was lengthy and overwhelming if you don't know me. today i have better news, though it is not concrete.

a week ago i started a new treatment - tysabri. it's the latest, greatest invention for modifying MS. of course, it's only been studied on relapsing patients, but some of us progressive patients are trying it anyway. in relapsing patients, tysabri has been shown to reduce relapses, reduce new brain lesions AND slow disease progression. this last one is what i wish for most. some people think it can also IMPROVE symptoms which would be fantastic.

the reason that i feel hope today is because 3 days after my 1st infusion (it's a monthly IV infusion) i spent 3 very busy days and i did not feel exhausted afterward. this is a huge improvement for me. i usually have to spend a full day recuperating if i've had a very active day. i thought i'd have to recuperate for days after my long weekend. instead, i got a good 9 hours of sleep, took it easy the next morning, and i felt no fatigue.

i should mention though, the 1st 2 days after the infusion i was extremely fatigued. yet, i was then able to spend 3 days traveling and visiting with family.

if this treatment can prevent fatigue, i'm hopeful that it can do other good things. we'll see.

again, don't take my word on good or bad treatments. research and talk to your doctor before you try anything new. especially tysabri, as it can be very risky.

canes and walkers and wheelchairs, oh my!

i'll try to get back to the story i started telling a year ago.

in 1994, i worked through a major depression. i'm not ashamed to say that i continue counseling and anti-depressants to this day. fortunately, i never again felt as depressed as i did that year. still, ongoing physical struggle brings ongoing emotional struggles and so, ongoing treatment.

i'm about to discuss the progression of my disease. keep in mind, most people with MS have the relapsing-remitting type where symptoms come and go. i don't want to scare anyone with my story. my progressive type of MS comes, stays and gets worse.

during my 1st year of grad school i could get by with a cane [i had a pretty one that some friends designed with a vine winding around it].

after some months it was clear that a cane was not enough help. i fought the idea of using a walker. i was 24, not a senior citizen. finally i gave in, and what a relief it was! it was no longer a struggle to stay balanced. i could lean with both hands. i used a plain metal one most of the time that i would pick up and move with each step. i also got one with 4 wheels, a basket to carry things [try carrying things with both hands moving a walker], and a seat i could use if i was walking a distance. i actually used it to walk and take photographs at longwood gardens [several acres].

by my 3rd year of grad school, the walker was only good for short distances [around the house or into a convenience store]. when i did my teacher practicum, i used my first wheelchair.

i'm going to go off on a tangent. the 1st time i ever used a wheelchair, i was going to an art museum with friends [one of whom is now my husband : ) ]. it was a crowded space with everyone's butt in my face where i could barely see the artwork hung at a standing person's eye level. by the time we left, i could barely control my tears or explain why i was so sad. it was a dose of the reality of my new life with MS.

so, back to my practicum... i used the wheelchair most of the time, but i could get up and walk around the room with a cane [a yard or 2 tops]. that 1st wheelchair was a rental not my size and too heavy for me to get out of the car. by the end of that autumn, we ordered a wheelchair fit to my size and needs. i could fold it and put it in the back seat when i drove. somewhere along the line i switched to hand controls for driving.

the combination of walker at home and wheelchair in public worked for quite a while. i finished grad school and, after a year of interviewing, got a job as a special ed teacher. still, things were getting worse. in the spring of 1998, i was fortunate to have my family renovate our home so it would be wheelchair accessible [i'll save my rant on accessibility for another post]. when the renovation was complete i used my wheelchair full time.

after my art museum experience, i gradually adjusted to the situation. using a wheelchair made my days much easier and less tiring.

it doesn't end there. in 2001, i got my 1st power chair. propelling myself through the school hallways was too much for me. the power chair was great for work and trips to longwood gardens, but i otherwise used my manual chair. i'm sad to say that i'm losing strength and now use my power chair most of the time.

i don't want to think about what might be next. i don't worry much about the past or the future. i do a good job of simply enjoying each moment as it comes. i also know that whatever the future brings i'll be o.k.

distraction

during the past couple of months i've been putting my energy into artwork - photographs and 'paintbrush' pictures. these fun things keep me distracted enough that i don't sit around feeling sad about my disease. my therapist said that distraction can be stress reducing. so now, i'm hoping to continue artwork, but also get back to writing. stay tuned.

song

singing is something that usually lifts my spirit. some days i don't have the heart to sing, i'm so sad. then there are in-between days when i use singing to express my feelings. here is a song i sing to the tune of 'you are my sunshine':

you are my body, my only body
you make me happy when you behave
you work so hard dear, I love you for it
please don’t take my body away

the other lifetime, when I was walking
I walked wherever I did please
that time is gone now, & life is different
won’t you help me feel at ease?

every day now, I must try harder
to do the things my body needs
get enough rest, eat well, and exercise
all these things my body needs

you are my body, my only body
you make me happy when you behave
you work so hard dear, I love you for it
please don’t take my body away

progressive

i don't like this term. it sounds positive. i'm all for positive, but this has the wrong connotation.

i'm desperate to stop my progression. as the weeks go by, my weakness grows. it gets increasingly difficult to do everyday things. i still find lots of things to enjoy, so i'm not downhearted. i'm tired of the frustrations though.

hope you all are well.

stress = fatigue

i shouldn't make medical recommendations, but here's something that helps me. when i have a stressful event coming up i start to think about fatigue. i know that i'll need to rest more and pace my activities. the other thing that helps is a short course of prednisone [oral steroid].

in 2004 i got married. half way through the day my body became alarmingly weak. i rested and made it through the day. when i returned from my honeymoon, i called my neurologist about the weakness. she said that if she'd known about the event she would have given me prednisone to help me maintain my strength and energy.

last week i moved from my family home to a fabulous new apartment. i called my neuro and got some prednisone. i've still had to pace myself and rest a lot, but i'm feeling strong and not completely exhausted. i should mention that after the prednisone wears off there is usually extra fatigue. so i plan for that as well.

good luck managing your own stress.

stress

i get so tired of crying. i'm a basically happy person and i don't like feeling sad. i've got to give myself a break though. this disease is stressful. crying is the easiest way to release stress for me. so i'm going to relax and cry when the feeling comes.

there is a song from 'free to be you and me' that goes something like this:
it's alright to cry
crying gets the sad out of you
it's alright to cry
it might make you feel better

there you go.

point of focus

when i feel low i have some tools to help myself feel better. i thought i'd share the one i've been using most lately. my sister had a daughter a year ago. little winnie is the light of my life. i find that looking at photos of her smiling face can sooth me. i keep at least one in every room. i have a particularly happy one in the bathroom as that is where i feel most frustrated. having a child's smile to focus on helps me calm my frustrations. what would you use as a point of focus?

love

i liked this quote so much, i'm using it for both of my blogs:

You, yourself, as much as anybody in the entire universe, deserve your love and affection.--Buddha

in the new year and always, treat yourself lovingly.