Question:
In article <mtlout0fotmin00i5cmpt0cnakq0v0l…@4ax.com>, KCat <kcdoc…@ghg.net> wrote [] >Today it was cloudy by blessing and I had a doc appt. and >several errands to run. I got them all done and was proud of myself. >But every time I have to run errands it is preying at the back of my >mind – "can I afford to stop at one more store? Can I go to this >particular store with all it’s candles and perfumey crap?" and so on. >I dropped by [large store with just about everything you can imagine >for home and personal hygeine] and they have so much potpourri, >candles scented this and that. I have to rush through it or risk >migraine or other symptoms.
You could wear a respirator (or indeed an aqualung-type air cylinder and face mask) and have an explanatory card printed to hand to anyone who asks. >(cheap, good shampoo instead of that grocery store carp (sic))
sounds fishy to me… >Distraction in itself is a real problem too – but Ron says that’s >because we’re getting too old to multiplex. 
Hey, you should worry? — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>
Response:
MY MEMORY LOSS IS SO BAD I CAN’T REMEMBER. DO YOU HAVE BUZZING OR RINGING IN YOUR EARS??? DO YOU GET DIZZY STANDING ON A CHAIR JUST A FEW FEET OFF THE FLOOR…IT COULD BE VERTIGO…MENIERE’S DISEASE…I HAD A REAL BAD ATTACK AND COULDN’T REMEMBER WHA I DID 30 SECONDS AGO. THIS LASTED ALMOST 2 MONTHS STRAIGHT AND I THOUGHT I WAS LOSING MY MIND…I’M BETTER NOW….I CRIED A LOT…AND YOU KNOW WHAT…IT TAUGHT ME A GREAT LESSON….IT TAUGHT ME TO LIVE IN THE MOMENT…FOR ONE THING I HAD NO CHOICE BUT TO BE IN THE MOMENT….THERE WAS NO PAST AND NO FUTURE WHERE I WAS…A TIME WARP IT FELT LIKE….EVERYTHING SEEMED SO UNREAL TO…..BUT I DIDN’T THINK OF ANY FUTURE PLANS…OR WHAT TO DO NEXT…I COULDN’T….IT WAS JUST REST SLEEP BREATH AND RELAX AND A LOT OF CRYING…YOU KNOW WHAT….MY SPINE STARTED TO POP AND CRACK LIKE A CHIROPRACTOR WAS POPPING IT…CLICK HERE A CLICK THERE NOT ALL AT ONCE… THEN AFTER A GOOD CRY….AHAHHH RELEASE..THE PAIN STARTED GOING AWAY….. THE STRESS MELTED AWAY WITH ACCEPTANCE….I’M BETTER NOW…BUT NOW I WANT TO BE IN THE MOMENT AND STRESS OVER EVERYTHING …THE PAST HAS CLEARED …I DON’T REMEMBER A LOT …THATS GOOD…CAUSE IT WAS BAD….I’M NOT CURED …BUT NOW IT IS BARABLE AND I DON’T TAKE MEDS. EXCEPT TYLENOL PM…..I WAS WITH MY INNE CHILD, AND SHE IS DOING BETTER TOO. I THINK MAYBE LETTING GO HELPS…BEING AS A CHILD AND BEING IN THE MOMENT…LOSE BEING THE ADULT FOR A WHILE, AND SEE WHAT HAPPENS AS AN EXPERIMENT…. I THINK I’LL TURN IN NOW I’VE HAD SUCH A LONG DAY DOING NOTHING BUT BEING IN THE MOMENT
Hi ~ You have mail anda message from cyber girl ~ :-0 
~
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thered pilllandof freespirits TRUTH SEEKER
Response:
So that is my problem, I’m still multiplexing using old equipment! I need more ram and a new Pentium. Bev "KCat" <kcdoc…@ghg.net> wrote in message
news:mtlout0fotmin00i5cmpt0cnakq0v0l6lm@4ax.com… – Hide quoted text — Show quoted text -> On Thu, 08 Nov 2001 18:46:25 -0800, ruth…@mcn.org (ruth tay) wrote: > >I’ve been reflecting about memory loss a lot today since the subject was > >brought up an would ask you all to philosophiz > >e {sp} with me . Could living > >with lupus as a constant lurking problem be part of it. > I think that’s a reasonable thought. I think that particular approach > is more likely to cause depression, BUT, memory loss is often > associated with depression as well. So I can imagine it’s all > thorougly knotted up in the basic process. > > When you get up in > >the morning [if you do] do you wonder how much work you can get out of your > >body before some lupus symptom sends you back to bed? > not that – at least not right now being pretty much in remission. > >Do you worry about > >the sunshine disrupting your plans and not being able to run any errands? > absolutely. Today it was cloudy by blessing and I had a doc appt. and > several errands to run. I got them all done and was proud of myself. > But every time I have to run errands it is preying at the back of my > mind – "can I afford to stop at one more store? Can I go to this > particular store with all it’s candles and perfumey crap?" and so on. > I dropped by [large store with just about everything you can imagine > for home and personal hygeine] and they have so much potpourri, > candles scented this and that. I have to rush through it or risk > migraine or other symptoms. > >Do you notice that everything you do or plan has to take lupus into > >consideration. > I don’t think I notice it as much anymore. But we (hubby and I) do > make it a part of the decision making. Can I handle the drive? If I > have a problem what meds do I need? today a woman in a beauty supply > shop (cheap, good shampoo instead of that grocery store carp (sic)) > asked me about my sun-protective apparel and I found myself saying > "it’s no big deal tho…" because I hate to appear like I’m whining. > She said "No, it is a big deal, you’ve just learned to cope with it." > I thought that was quite insightful for a non-lupie. But she does > have a friend with lupus which has helped her and perhaps she has her > own coping issues. > >your > >life back to normal but what is normal for a lupie. > hmm… Ron and I have talked about that a few times and he was really > struck by what "normal" is for me in particular. About a year ago he > said "when was the last time you had a day without pain?" I told him > 5 years.. he was really upset by that but heck, it was honest. Now, > is that pain *bad* every day – no. Most of the time I really only > notice it if I’m resting or concentrating on sewing or something. > >Could this constant > >distraction reinforced by pain work on our memories?? I guess this blaming > >it on the lupus [for me] is a great idea……. cheers ruth > I imagine so – just as depression and stress can also impact memory > storage. And the meds. And the inflammation – all those things are > playing a role in our memory issues. > Distraction in itself is a real problem too – but Ron says that’s > because we’re getting too old to multiplex.
Response:
Ruthie dear. When I get up I always wonder IF I can. LOL There was a time when for me that was a big chore in itself. Worry you bet your buns I do. I wonder IF when I go outside in the sun for a short period will I get sick later? If My sis calls and wants to go shopping will it be too long and will I have or should I take a pain pill before I go or wait till it hits? I think like you do Ruth, this constant pain that is or does come will distract us from thinking clearly and inhibit our memories. The worst part for me, as well as many of us, Is I wonder, I wonder if this disease is going to get worse. I wonder, since so and so has this going on, will I get that too? I wonder if I am going to have to go through hell like some of you have. Wonder wonder wonder. That in itself is brain fullfilling. But then I step back and have to tell myself. gee you got your A.. out of bed today, what are you going to do with it… Gee I will try to shop and if I can’t then go home. Gee I will take that pain pill when I need to take it. Gee wondering is driving me nuts. so I guess what I mean is It is a tiring illness. One which we have to bend the rules many times in order to have a good time and to live our lives the best we can. Some times I hate it, sometimes I can’t help it but damn, it IT IS not going to get the best of me not matter WHAT..!!! NOW WONDER ABOUT THAT ONE. janers man that was confusing right there. LOL
Response:
On Thu, 08 Nov 2001 18:46:25 -0800, ruth…@mcn.org (ruth tay) wrote: >I’ve been reflecting about memory loss a lot today since the subject was >brought up an would ask you all to philosophiz >e {sp} with me . Could living >with lupus as a constant lurking problem be part of it.
I think that’s a reasonable thought. I think that particular approach is more likely to cause depression, BUT, memory loss is often associated with depression as well. So I can imagine it’s all thorougly knotted up in the basic process. > When you get up in >the morning [if you do] do you wonder how much work you can get out of your >body before some lupus symptom sends you back to bed?
not that – at least not right now being pretty much in remission. >Do you worry about >the sunshine disrupting your plans and not being able to run any errands?
absolutely. Today it was cloudy by blessing and I had a doc appt. and several errands to run. I got them all done and was proud of myself. But every time I have to run errands it is preying at the back of my mind – "can I afford to stop at one more store? Can I go to this particular store with all it’s candles and perfumey crap?" and so on. I dropped by [large store with just about everything you can imagine for home and personal hygeine] and they have so much potpourri, candles scented this and that. I have to rush through it or risk migraine or other symptoms. >Do you notice that everything you do or plan has to take lupus into >consideration.
I don’t think I notice it as much anymore. But we (hubby and I) do make it a part of the decision making. Can I handle the drive? If I have a problem what meds do I need? today a woman in a beauty supply shop (cheap, good shampoo instead of that grocery store carp (sic)) asked me about my sun-protective apparel and I found myself saying "it’s no big deal tho…" because I hate to appear like I’m whining. She said "No, it is a big deal, you’ve just learned to cope with it." I thought that was quite insightful for a non-lupie. But she does have a friend with lupus which has helped her and perhaps she has her own coping issues. >your >life back to normal but what is normal for a lupie.
hmm… Ron and I have talked about that a few times and he was really struck by what "normal" is for me in particular. About a year ago he said "when was the last time you had a day without pain?" I told him 5 years.. he was really upset by that but heck, it was honest. Now, is that pain *bad* every day – no. Most of the time I really only notice it if I’m resting or concentrating on sewing or something. >Could this constant >distraction reinforced by pain work on our memories?? I guess this blaming >it on the lupus [for me] is a great idea……. cheers ruth
I imagine so – just as depression and stress can also impact memory storage. And the meds. And the inflammation – all those things are playing a role in our memory issues. Distraction in itself is a real problem too – but Ron says that’s because we’re getting too old to multiplex.
Response:
I’ve been reflecting about memory loss a lot today since the subject was brought up an would ask you all to philosophiz e {sp} with me . Could living with lupus as a constant lurking problem be part of it. When you get up in the morning [if you do] do you wonder how much work you can get out of your body before some lupus symptom sends you back to bed? Do you worry about the sunshine disrupting your plans and not being able to run any errands? Do you notice that everything you do or plan has to take lupus into consideration. There have been lots of stories on TV lately of getting your life back to normal but what is normal for a lupie. Could this constant distraction reinforced by pain work on our memories?? I guess this blaming it on the lupus [for me] is a great idea……. cheers ruth
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