Still learning - very long!
Beverley
to figure out what is normal and maybe I have nothing to compare it with
since I've had lupus most of my life.
I can't imagine having high energy. I have often watched other people and
wondered how they did it. How do they keep going? As a kid I was very
athletic but when I wasn't doing something I was sleeping. As a young mother
I dragged around behind the kids and wondered where other mothers had the
energy to do what they did. By the end of the day I was so tired I could
hardly put up with myself much less the kids. I have a husband that has
always worked long hard hours and so I did not get much help from him.
Now I have friends with 10-15 yrs on me and they do more in a day then I
ever did. No I am not lazy - but I have often wondered why I couldn't keep
up. Some days it is hard to think. My sister laughs at me because I will
change a subject in mid-sentence. I swear I studied harder than anyone else
in school - driving info into my brain. I developed a way of visually
holding pages in my mind so I could mentally read them and answer a question
on a test.
I've spent the last ten years of my life thinking I was coming down with
Alzheimer's. (They say it starts in the early forties or late thirties but
is ignored.) The constant aches and pains made me wonder what the heck was
wrong with me. The strange illnesses I have had over the years - why me? The
doctors were always testing for some strange illness that they couldn't
find. (They just never tested for lupus.) So I got into the habit of
keeping my mouth shut about stuff and accepted that the quirks were just me
and my strange body. Hands that fell asleep in my lap in the car. Feet that
had shooting pains or felt numb. Joint pain, muscle aches, etc. that seemed
beyond normal. Use a shovel and I could hardly walk for a week afterward
(even with my boots on). The list goes on and on.
Thank goodness for all of you. It is so nice to know I am not alone. I'm
still discovering things that are lupus related. Things that I thought were
normal for me. Maybe for me with lupus they are normal! I am really thankful
in so many ways that I now know I have lupus. It has made sense out of
things that had no rhyme or reason. I also know now that when I have a bad
flare it will be properly treated and I will not be left to suffer. Maybe I
will talk to the doctor about taking something like Plaquenil.
I am also trying to change my lifestyle a wee bit. I want to be able to make
sure I accomplish certain things. So I am trying to establish some
priorities. If I only have so much energy I must learn to use that energy
efficiently and save some time for myself - naps without guilt, etc.. Also
saying "no" when asked to do things.
Guilt has been a big factor. I have felt guilty for not keeping up with the
housework. For not doing ,,,,,,! I've felt guilty and depressed about all
sorts of things over the years. Now I know I am not lazy and I cannot
"keep-up" with everything and everybody. The guilt is gone. I can flop on
the sofa and tell myself I need it. The chronic depression I recognize as
just another effect of lupus. I'm not some mentally deficient human. It's
real folks - it's all real, right down to the little aches and the big
pains. No, I don't have the energy to carry heavy loads of laundry up and
down the stairs. (Old house, huge staircase, tall ceilings.) If I am doing
laundry, well I'm doing laundry. No one should expect me to run the vacuum
and do twenty other things on the same day.
I know I'm intelligent and I am well-respected in my field. I also know I
cannot do all the things that I have tried to do in the past. So my career
will be making some not so subtle changes. Yes, I will still lecture
(because I love it) but I will not stand on my feet for 2 hours, if I have
to I will bring my own stool to sit upon. I will not actively work outside
anymore. I'll take care of my own garden, etc. but it will be on off hours -
late day when the sun is not bearing down on me. Yes, I protect myself from
the sun. Yes, I do think I need some sun. Take it away from me and I get
very depressed. A little sun is not the same as working in it. I'm not
going to chance damaging myself unknowingly.
I am still struggling with how to explain to friends and coworkers that I
cannot do some things. I don't want to hang a sign around my neck saying "I
have lupus" besides they don't seem to know what it is that I do have or its
ramifications. I also do not want it to be an excuse to be lazy. I don't
want to give into this awful disease. I want to fight it. I don't want to
find myself in a wheelchair or confined to my bed. My doctor said it tends
to be progressive as I age. (Gosh, I'm aging, well, I'm not old yet. But old
keeps getting older as I get older! <giggle>)
To some extent having lupus has given me a feeling of euphoria. It's put a
label on so many things. (No denial here!) Naturally the flares are pretty
darn awful. I don't relish them. But for my daily life I can see and feel
the difference the diagnosis has made. With the help of all of you I am
learning more about the disease than is written in some pat little format on
a web site, believe me, I read everything when I was first old that this was
a possibility. It's so nice to know that I am not alone with my "quirks". So
many of you have been through the same stuff. You've learned by experience
what the medical profession does and doesn't do and when this stuff falls
under "normal lupus" problems and serious lupus problems. I know I have to
learn the differences. You are all helping me in so many ways. A very big
thank you. (Sorry to be so long winded.)
Bev
Perry
Life has been good for me, especially since I've learned to better live
within my limits. I am more active and feel better than I have for years.
(Watch me crash the day after this boast!)
CP
Zinn/zSs
:))
--
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Zinn/zSs
Pandora's Chemical Box
http://67993700.home.icq.com/PandorasChemicalBox.html
"Beverley" <potti...@sybercom.net> wrote in message
news:sllop7f...@corp.supernews.com...
bassward
safe place to go and please never feel guilty bout a nap it is how we heal.
Love Cindy
Lady Veteran
days when all I want to do is take a long hot shower and go to bed. If
it weren't for my two dogs, I would be very lonely indeed. On days
like that I slow down and look after myself and say "Other opinions be
damned!" I know that if I don't look after me no one else will.
Hang in there. It will gelt better.
Bobbi