What do we do all day?

[Chickpea]

In another topic Roetta raised the thorny question about coping with full-time work, and the challenge of finding a part-time job.  So many of us here have had to change our working lives because of SjS, either going part-time or giving up work altogether.  Inga mentioned how bored she gets at home all day and it set me wondering about those of us who are at home full-time:  what do we do all day?

My week is punctuated by hospital appointments, treatments etc but in between I find time to read the newspaper every day as well as my beloved detective novels, hang out here with Sjoggy friends, and do a little research based on my old work as a historian.  Everything is dependant on how I feel day to day, hour to hour so it's hard to plan ahead.  I love seeing friends but like many of you I find social engagements difficult because listening can be exhausting, and chatting even more so. 

My children are all at college so in vacation time our apartment is full to bursting with large, loud young people!  And in term time it's quiet and rather lonely.  I find the times between these stages the most difficult as I adjust from one extreme to another. 

Our dear Bucky has got us thinking about getting outside each day, and then about tidying our homes.  I hope this will be another thread where we can share our everyday lives with each other and learn from other people's experiences.

Sending love to all - Chickpea

[jaygee]

I work full time.  And that feels like "extra" full time, as sometimes I have to be a couple of hundred miles away first thing (by train, plane or car), then home later.   And I have my pets (horses and dogs) who need to be seen to whether I feel rubbish or not.  I have someone who comes to walk the dogs in the middle of the day if I am going to be away from home too long and most weeks I can have a day when I work from home, so I tend to plan my week without too many long, long days.

I have flu at the moment and have completely exhausted myself making a simple meal for us, this evening.  I hate being like this and tend to push myself too far, perhaps, sometimes 

Since plaquenil, this summer, though, I have rarely had to take long naps thus missing most of my free time at weekends, and that's been good.  I also have a reliable person who comes to help with the horses at weekend and loves/rides one of my horses, so I tend to try and ignore my symptoms as best I can and just try to enjoy life.  My hubby helps a lot with the animals, or I couldn't possibly cope with working, too.  But I also feel that, if I didn't have my pets, then my life wouldn't have as much joy as it does.  I adore them, even though they are hard work and spending time gently riding out, with friends, is real "me" time and when I come home (exhausted) life is just GOOD!!!!!   

Having the dogs cuddle up on the sofa with me in the evenings is very soothing, too.  xx

[dragontail]

I have taken to walking my miniature schnauzer at the same time every day just to get some excersise. It hurts but rewarding too. I try to add a few steps after a couple of weeks unless I just can't seem to make myself go any further. There are days I just can't do it and some days I thank the lord there is rain so I can't. I hate the rain but hey, I don't have to walk the dog. I stop and visit neighbors along the way too. I haven't been able to find the right kind of meds to help alleviate the hip pain though.

In another topic Roetta raised the thorny question about coping with full-time work, and the challenge of finding a part-time job.  So many of us here have had to change our working lives because of SjS, either going part-time or giving up work altogether.  Inga mentioned how bored she gets at home all day and it set me wondering about those of us who are at home full-time:  what do we do all day?

My week is punctuated by hospital appointments, treatments etc but in between I find time to read the newspaper every day as well as my beloved detective novels, hang out here with Sjoggy friends, and do a little research based on my old work as a historian.  Everything is dependant on how I feel day to day, hour to hour so it's hard to plan ahead.  I love seeing friends but like many of you I find social engagements difficult because listening can be exhausting, and chatting even more so. 

My children are all at college so in vacation time our apartment is full to bursting with large, loud young people!  And in term time it's quiet and rather lonely.  I find the times between these stages the most difficult as I adjust from one extreme to another. 

Our dear Bucky has got us thinking about getting outside each day, and then about tidying our homes.  I hope this will be another thread where we can share our everyday lives with each other and learn from other people's experiences.

Sending love to all - Chickpea

[Patze]

Hi Dragontail,

Let me also welcome you to the SJS World!  Please do look around as there are tons of topics that you just might find interesting!  And let's not even mention the great members that we have either!

I'm glad to see that you've got a schnauzer, they are such great dogs, aren't they (high energy though, whew)? 

Can you post and tell us some more about you so we can get to know you better?

Take care -

Patze

[harrigan]

I understand what you mean, Chickpea, with having to adjust to the 2 extremes.  My life is like that too.  Term times are so busy and stressful that any extras like family commitments or feeling unwell really rock the boat.  Then the holidays come and I have to train myself to unwind.  I feel I have really perfected the art of sleeping in now!  Didn't get up till 9 today, which is unheard of for me!

The thing I find works is to put some good regular spots into each day.  When I get up for school at 6, I spend 30 mins making lunches or preparing tea, get showered and dressed then treat myself to 20 mins here, catching up on the day's news from around the globe!  I often imagine what we are all doing and what we have to face today.  Sometimes, reading how others have faced a challenge helps me to gee up a bit when I'm feeling overwhelmed by the day.  I've loved the last few weeks sitting quietly with just the Christmas lights on and reading everyone's comments.

Sometimes life is loud and busy and full to bursting.  Other times it is quiet and predictable.  I want to try this next few months to see the good in the now and enjoy whtaever comes my way.  Please remind me of this when I am frazzled in a naother 2 weeks!!

[kimbo]

ChickPea and gang here,

It is interesting how we all move thru our lives with our challenges. I have found inspirations from day one  on  this forum.
The threads of the past chronicling exercise, all of Bucky's challenges .  The humor of Pooh. Irish our own 'True Grit' with her incredible Sjoggy journey and RN wisdoms. , and our own medical whiz kid Linda RN. Even the unleashed sarcasm of Epson, lightens the load of my everyday life. And many, many others. All the new people who discover us daily, make this a special place to visit everyday.  

I worked the past couple days, so this morning I slept in, doing laundry now, while I sit by my fireplace checking out my sjoggie pals.
Oh, which reminds me, throw another log on the fire.
My dog Elroy always beside me. (Cavoodle, cavalier spaniel/poodle)
When I hear of people that get up, have their coffee or tea, read the paper and then get ready. I smile,   because this is me:
In my morning bed, one eye open  watching the time; up and out the door in 20 min with a morning snack in my hand as I load myself into my already warm car (my husband has my car running and warmed up on winter mornings for me) My husband laughs, because in 30 years of marriage this has not changed, I am a 20 min and out the door with my little breakfast in my hand type of gal..
I only work 2 days a week, sometimes 3. Thankfully, my life is in a season of slow down and this is good for my health issue with SJS.

When I hear of younger and/or other women in general ,with children or full time work in a busy season of their lives and also coping with SJS and all the gifts it keeps giving?.I have concerns for their health.

I  have thoughts and prayers for our many Sjoggy soldiers who keep pace in a busy world.



Blessings kimbo

[Bucky]

I too, understand what you mean about adjusting to different extremes Chickpea.  Right now both my son and hubby are off school and work because of the holidays.  Where it is usually just me at home during the day Monday thru Friday, now I have these two noisy "boys" home all week too.  Yes, the volume of noise goes up, things are left wherever they fall, more food is consumed, etc. - but, I do enjoy having them home.  (as long as they give me some "quiet" time now and then  )  In fact, today they have both gone out together to run some errands - ahhh, peace and quiet in the kingdom at the moment.  

As I have mentioned on several occasions before, I love, love, love staying home.  I am never bored.  I guess a part of it relates back to my own childhood when my mother was a stay-at-home mom.  Whenever you came home, Mom was there.  As a mother myself, I can appreciate so much more the sacrifices my Mother made for her family.  I truly don't think the other family members know what all we do for them.  (until we DON'T do it for them . . .  )

Starting in January my weeks will include several trips each week to the school to help out with Scholastic Bowl.  That takes several hours each time.  This is the third year our son has participated in it and I enjoy watching him as team captain - plus, I help out with refreshments and clean-up.  Since he is our only child, I enjoy being involved in his school activities.   I don't know how people do it with lots of kids - you can't be everywhere at once.  Somehow, my mother juggled four kids activities and made it look effortless.  Yay Mom!!

I am fortunate that I don't have constant doctor appointments - usually, just every six months unless something comes up.  I am sorry for those of you who do have many, many doctor appointments - it has got to be tiring.  When I was working, I would try to schedule my doctor appointments either first thing in the morning, or after I got off work at 2 p.m. - my employer strongly encouraged us to make appointments during non-working hours.  Which isn't always possible - but, I did try to do that as it makes it very hectic to go to work, leave to go to dr., and some times return to work afterwards.   I now find that I can get doctor appointments quicker since I am not limited to certain times to get into the doctor - my schedule is pretty much wide open.

My hat is off to those of you still working full time outside the home.  I don't think I could do it then come home and take care of my family and home too.  I wish we lived closer and I could come help you with things to ease your load.  Working part time was enough for me.  I work full time now, but it is an unpaid job taking care of my home and family.

Between laundry, grocery shopping, banking, housekeeping, bill paying, vehicle servicing, mowing, and taxi service for son - that keeps me busy.  

My favorite time of the day is when everyone has gone to bed - except me.  The house is quiet, everybody is safe at home.  I like to look out our front picture window and I can see several cell towers blinking in the distance.  Or if it is a clear night, all the stars in the sky and just marvel at the vast universe of which I am just a speck of.  I enjoy the peaceful quietness that nighttime brings.  Many know me as a night owl - it is not unusual for me to be up at 1 or 2 a.m. reading or answering e-mails.  It's "me" time.  

Have a great day . . . .

Bucky

[Poochie]

Well, I thought I had retired years ago, but recently I've been supplying our local outlet store with my knitting items, sweaters, hats, mittens, scarfs, baby sets, etc.  It seems I hardly finish and deliver something, the phone will ring upon returning home to see if I can make another one of something I just left.   

All the items in the store are "USA" made and only the best of quality and they go swiftly.  The store is in our local Amish Farmers market and they truly appreciate the home made items. 

Anyway, I get up usually around 5 or 6 a.m., fix my coffee, grab my protein shake, and turn on the news.  While drinking my shake and coffee, I begin knitting on my item of the moment.  Mainly it's been those funny, goofy helmet hats the kids are wearing.  They are such fun to make.  Each one has been different than the last and I keep coming up with different yarn and ribbon to use on them.  I've used wooden beads, bells, ribbons and metal charms.  With pony tails, and other crazy top knots with the bells and beads. 

With different yarns, fun fur, glitter, eyelash, mohair, and others, plus different colors and textures, they are quite fun to make.

I too, have finally reached the stage of 6 month appointments, but in the beginning it was just about every 2 weeks for one or another doctor appt.  I feel for those of you who are just starting out.  It will get better and you will start to feel "human" again. 

I try to keep active at Weight Watchers, Curves and church, but sometimes "Fred" (my neuropathy) just won't co-operate and I have to give in and rest, but I won't let this disease get me down.   I too am up at 2 a.m. reading, knitting or working at the computer.  But I have the advantage of taking a nap in the afternoon.  I love that time of night, because of the peace and quiet.  No one to cater to, not even my dogs, who are asleep at my feet. 

Have a wonderful New Year everyone and my you hurt less, be healthier and happier in 2010.

Hugs, Pooh

[wen.uk]

If I'm in work (usually 3 0r 4 days a week) I get out of bed and take my time to have a leisurely breakfast and wake up slowly, I just can't do 'rush' any more!  Washed, hair done and face on and short drive to work.  Get home about 5.30, change into my jamis, cook dinner and then relax on sofa before bed.  On my bad days I sometimes have a pre-dinner nap.

My days off vary between meeting friends for lunch, taking my Mum for her weekly shop, visiting my daughter and granddaughter, doing some family history, visiting the cinema in the evening or a meal out, and try to walk about 3 times a week too.  This is on my good days, others entail me getting out of bed, doing a couple of jobs in the house, and not much else.  I take each day as it comes now and do whatever makes me feel better. 

[salsen]

Sometimes I wonder where the day has gone when I really don't seem that busy.  Most days I "lose" at least three or four hours between doing anodyne therapy (for neuropathy) and riding my exercise bike to keep me mobile.  Sounds like I am super energetic huh.  Sooooooooooo not.   Everything is in the slow and easy mode.  I do try and get some housework done - always doing dishes and making the bed.  About every other day I tackle wash.  When days are really nice I like to take a quick run to the stores and just get out for a couple of hours. 

If I could get a quick start in the morning I could probably get more done but the dizziness and light head keep me pretty slow until I can manage to screw the head back onto the shoulders.   My cat, Sal and my dog, Dodger keep me company all day and we keep pretty good company.  Their antics keep me laughing. 

Thankfully I do not have to work outside of the home and can rest when the fatigue is too much.  I often wish I could do the volunteer work I did in the past but hesitate to make a commitment I know realistically may be difficult for me to keep.  That is probably my biggest regret in all of this.

[Katybarstool]

At the moment, I still work full time. It's office work, so not physically trying, but can be emotionally draining, as it's a health-related helpline. I get out of bed around 5.45, shower, wash hair, do face, make breakfast for the three of us. This is all done in 'slow' mode.

I leave home at 7.15 and drop hubby at station en-route to work. My work start time is 8.30, but I uually tart at 8 as, with all the medical appointments I have at the moment, I need to bank time. Lunch is one hour. On a good day, I will walk for about 15-20 minutes, other days, I just chill, or try to bank more time.

After leaving work at 4.30, I pick hubby up nd we arrive home around 5.15. Generally we eat within about an hour. After that, I'm done. Usually have a snooze on the sofa, maybe watch some tv, pop in here to speak with my precious friends, and so to bed.

We have never had a busy social life, but now we have almost non. Instead, we look forward to our holidays, and just concentrate on work and family the rest of the time.

This sounds so boring, but I'm grateful that I can still work full-time, as this gives me the added health insurance, and will pay a pension when I retire, which is supposedly 12 years off. I will be thankful for each year I can complete. Otherwise, we will buy a caravan on the moors and live there.

Happy 2010 everyone. 

[harrigan]

Yay Kathy!  I will definitely visit you in your caravan on the moors!!  Have a happy new year xx Ailsa

[kimbo]

Yea Ailsa, I am with you...The caravan on the moors sounds magistic. Katy were right there with you on that one. A tamborine a harmonica and some stools to sit on and we will all be just fine.

[roetta]

For now I get up about 5:30, get ready for work, drop my daughter off and then head into the office. My job is not physically demanding but it is extremely emotionally and mentally demanding. I rarely get a lunch, eating at my desk and being interrupted frequently. By the time I leave at 3 I am completely wrung out. I usually go home to teenage chaos. My son tends to whirl throught the kitchen leaving quite a mess behind him on his way to work. My daughter is 15, or as I call it the self-absorbed age.

She needs a ride to work or to dance almost every night as soon as I get home. If she does have a day off she tends to want to go shopping or something else, and generally does not understand when I have to say no!

Then there's dinner to make, dishes to do, laundry...Most of it doesn't get done and I'm usually crashed on the couch by 8.

Between the fact that my bloodwork has been coming back with elevated SED rates lately and that I seems to have found Interstitial Cystitis to add to my list of things wrong with me, taking care of me has become increasingly difficult. So my husband and I have made the decision that after the New Year I will have to be part-time if I'm going to keep working at all.

Now I just have to find a way to tell my boss and hope that that doesn't mean I lose my job completely.

[Katybarstool]

Roetta

That's a tough decision to make, but I'm really pleased that you are going to talk to work about reduced hours. My manager has suggested I go part time a couple of times, but she's not the one who can authorize it. For now, I will continue with my work/sleep routine, and hope for a lottery win.

Kathyx