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.

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.