Some good days, A lot more bad days based on the addition of bad moments vs. the good ones

Dearest friends:
I was so grateful to run across the attached web site's material tonight after going through one of "those" few days:
It happens pretty regularly - only the symptoms or problem changes - this time - one day, a migraine, that night, no sleep of any worth to my body, the next day, fatigue and "brain fog"...Yes, Mother's of children face this problem - many will force themselves to bathe, put on make-up, and carry on with their day. But what about those of us - the ones of us that cannot always bathe without help on "those days from being too stiff or in too much pain - what do people like me do? Well, to be honest, I have the "bath in a sanitary pack". They come like baby wipes, travel size or in a bigger box. They contain some awful crap in them that dries out the skin; yet is effective in getting off any dirt and is really a great compromise for a bath when I can't take one. Typically, I have to use these about 2 days out of 7, and sometimes 1 day of 7, I just don't feel well enough to bathe. It does suck, but it is less embarrassing than my almost 6 year old see his Dad having to "take care of me".
Frankly, we explain things differently right now for Joey so he isn't horrified to find out his Mom is not somehow close to normal. I need my son to have a concept of what normal is for him to form those healthy brain cells, so if he should ever (God help him, I hope he never does to the extent some of us have) see hell; he has normal brain chemistry in his mind to recover.
In the meantime, like any parent, we are teaching him to cope with the real world that he has, as an almost 6 year old.
My closest analogy to being chronically ill is like having a newborn baby that doesn't ever grow up: It requires constant attention, causes me to feel sleep-deprived, some days I don't bathe or wash my hair, although my yearn to feel normal over-rides this feeling more often than not and I delve into what usually is a 1 hour bath, It just takes that long - kind of like bathing your newborn. If you can apply that logic to just about anything a person with a newborn does, you've got my life. So, I keep up with a 38 yr old, a 6 year old, a newborn, and on the days I get to - myself. I miss myself. I don't get to have enough time with myself.

Because there seems to be little understanding as to when I might be seen on a good day or bad day, I found the following a good start for those lacking in the common courtesy arts for the Chronically Ill:
Here is a great explanation from another blog about us "Chronically Ill" folks:

"Invisible Disabilities?" What Does That Mean?

"A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs and lifting and carrying), or has difficulty performing activities of daily living, or has difficulty with certain social roles (doing school work for children, working at a job and around the house for adults)" (Disabilities Affect One-Fifth of All Americans). Just because a person has a disability, does not mean they are "disabled." Many living with physical or mental challenges are still able to be active in their hobbies, work and be active in sports. On the other hand, some struggle just to get through their day at work and some cannot work at all.

According to the Americans with Disabilities Act of 1990 (ADA) an individual with a disability is a person who: Has a physical (or mental) impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment (Disability Discrimination). To read A List of Limitations on Major Life Activities Click Here.

Often when we think of the term, "disability," we assume it only refers to people using a wheelchair or walker. On the contrary, the 1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost 1 in 10) were considered to have a severe disability, while only 1.8 million used a wheelchair and 5.2 million used a cane, crutches or walker (Americans with Disabilities 94-95). In other words, 74% of Americans who live with a severe disability do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses assisted equipment.

The term Invisible Disabilities refers a person's symptoms such as extreme fatigue, dizziness, pain, weakness, cognitive impairments, etc. that are sometimes or always debilitating. These symptoms can occur due to chronic illness, chronic pain, injury, birth disorders, etc. and are not always obvious to the onlooker.

A person can have an Invisible Disability whether or not they have a "visible" impairment or use an assistive device like a wheelchair, walker, cane, etc. For example, whether or not a person utilizes an assisitive device, if they are debilitated by such symptoms as extreme pain, fatigue, cognitive dysfunctions and dizziness, they have invisible disabilities.

References: Disabilities Affect One-Fifth of All Americans, 1997 www.census.gov/prod/3/97pubs/cenbr975.pdf

Disability Discrimination www.eeoc.gov/types/ada.html

Americans with Disabilities www.census.gov/apsd/www/statbrief/sb94_1.pdf

I'm hoping this information (and venting that I needed to do) will clear up any questions for those that wonder why some of us can "look just fine", even "better than ever", and can still be worse than you'd ever know.

Love (and feeling Loss)
me