How the other half lives.

[stillwaiting]

I have been ill for as long as I can remember - I can remember at school aged 6 or so, being in awe of the other kids because they had so much energy

But I have managed to get by quite nicely really - though it seemed I had to plan ahead a bit more than others, make loads of lists in order to remember stuff and of course pace myself & rest.

Then this year's diagnoses (APS, weak positive for lupus, pernicious anaemia) made more sense of my life.

At the weekend we met up again with my son's in-laws - lovely people - my age etc. And suddenly it dawned on me how restricted my life is sometimes.... I can not pack in all the stuff they pack in and I felt sorry - not for me - but for my husband.

I don't suppose this wistfulness at how the other half lives is particularly unusual but it did strike home quite hard - not for long - I have made a pact with myself that pity parties must be brief. But have you ever felt this way?

Lynn.x

[MaryF Administrator]

Hi there, your poignant post will resonate with many, yes I have felt restricted at times and that perhaps other family members maybe also either due to me or to perhaps their own energy levels, however I too, do not dwell in that place long and tend to move on swiftly, I make up for it in other ways! A positive outlook on life helps, and you clearly have that in abundance! I think we must all think about it at times. Mary F x

[stillwaiting in reply to MaryF]

Thanks Mary xx. I sometimes think maybe all this illness has actually made me stronger emotionally - maybe I have had time to stand and stare (or lie down and linger - lol!!!).

lynn.x.

[CanaryDiamond10]

My story is very similar to yours. I have been ill all of my life. My brother and sister used to detest me because I couldn't walk as far, nor as fast nor stay as long (particularly skating) and my mother would make them take me with them anyway. I would easily get knocked down by would-be hockey players and I would be so tired I could not skate 4 blocks home and they would have to drag me on my skates (literally). Embarrassment? They wouldn't even let me take gym with the other kids. I sat out with the kids with the broken arms and legs and autistic children and played chess. It was like wearing the letter A across your chest only it was S for sick. Every kid avoided me and my siblings by proxy. To top this my mother was French, causing a speech impediment for me in properly saying the letter "r". I was taught with completely different throat muscles and had years and years of speech therapy.I was tutored at home many elementary years and all of high school.

We used to laugh about it whenever we went down memory lane together. They have all passed now. Who ever would have thought I would be the last to go? Certainly not my doctors, nor my family, I had my doubts, but my friends knew how tenacious I am. They expected nothing less of me. Thank heavens. I've gone so past wistful it was obsessing me. Falls in that GUILT category and I got professional help to get through that. Now, I can distract to positive thoughts and actions and stop wasting time and energy on things gone by and done and that nothing can be done about. I just do the things I can do well, even if they are little bity things, like knocking myself out to make warm brownies for my husband when he walks in the door after work. He retires in Feb. and he is counting the days.

Good luck on your journey, Lynn. I'll see you along the way.

Warm wishes,

Canary

[stillwaiting in reply to CanaryDiamond10]

Bless you, Canary

[GinaD]

Me too. I was an active child growing up in a small coal mining town which was actually a kid's paradise: playing outside all day with elaborate games of army in the woods, pick up kickball and softball, sledding in winter and kid-organizeed Christmas carolling every December (we knew which houses offered us brownies!)

-- punctuated by periods of illness. Sore throats, this painful sore lump in my belly, exhaustion, too distracted to read my favorite books and so hours and hours watching horrid game shows on day time TV.

Then college, when the energy levels dropped further and the exhaustion and disability grew even more. I was a poor kid from W.Va attending expensive Vanderbilt University on scholarship and I could not afford to pay my medical bills at student health. So, though the doctors were nice, there was this one clerk who treated me like a flea infested dog. I did not graduate with the double major I intended, nor was

I healthy enough to continue in grad school. But I did graduate. And few people really know how much of a victory that was given how sick I was.

My post college adult life has been faairly good since marriage. Yes, there were those strokes which lead to the Hughes diagnosis, but my body seems to thrive on warfarin. I still have bouts of exhaustion, and whenever doctors do anything wierd to my body (I had my hip replaced) my body reacts very badly.

One day, driving by myself through Virginia, I pulled over to find something decent to listen to on the radio. I found an interview, and since I arrived in the middle, and drove out of range before the end, I never knew the author being interviewed or the book.

But the author/interviewee was describing lessons he had learned from his aging Father. His Father confronted the growing loss of fuction associated with aging by being proactive about activities. For example, at age 60 he turned his 40 acre fields into pasture and moved his veggie garden to a small, gated area. At age 70 he plowed up the garden and raised tomatos, peppers and herbs in raised beds close to his house. At age 80 he had bushes put into those beds and he took up bonsai. By age 90 he was winning bonsai awards. He didn't wait for his health to dictate his activities, instead he rationally calculated ages when he should logically switch from this to that. That way he retained a feeling of control over the whole process.

I offer this 2nd hand, "I heard it on NPR" advice in hopes that I will follow it myself.

Take care, for what its worth, many of can relate to what you say. You are not alone.

Gina