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Sydney Chris
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| Joined: | Fri Feb 18th, 2005 |
| Location: | Sydney, Australia |
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Posted: Fri Dec 16th, 2005 05:17 |
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hi All...
Am currently racking what's left of my brain re holidays which are suitable for an MP'er during the Australian summer.
After a long year of working while on treatment I do mentally need a break, but I really go stir crazy on just the weekends managing ligh exposure within the MP guidelines. Am having difficulty envisaging a relaxing and rejuvenating 2 week break, spent in the living room while the kids run in and out from the pool.
If there's someone here that's been through a northern hempisphere summer while on MP or some Aussies that have a few good ideas I would love to hear from you..
Best to all..
Chris
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Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
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carol
Moderator
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Posted: Fri Dec 16th, 2005 06:05 |
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Chris:
I discovered astronomy last summer. I think it is the perfect hobby for MPers.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Dr Trevor Marshall
Research Team
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Posted: Fri Dec 16th, 2005 06:24 |
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Chris,
In America we send the kids off to summer camp, but I don't think you have that option down under 
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Sydney Chris
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Posted: Fri Dec 16th, 2005 09:37 |
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Cheers Carol / Trevor,
You are right re summer camps... not the tradition in Aus..
Astronomy sounds great.. the only problem for me is that with daylight savings over our summer months, by the time the stars are out, I'm just about asleep..
Thanks again.. Chris
Last edited on Fri Dec 16th, 2005 09:37 by Sydney Chris
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Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
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BARNEY
Moderator
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Posted: Fri Dec 16th, 2005 14:12 |
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Sydney Chris,
I am in the US, but what I did to make it mentally last summer.
I planted a garden at night, went to the store, movie, friends house for meal/movie, etc., star gaze (the sky is beautiful, just sit outside (your eyes will adjust to the dark and you can actually see things. You could also go swimming (evening swims are nice). I believe that almost everything you do in the day time you can do after the sun goes down. (How about a romantic evening around the pool with your wife (of course, after the kids go to bed).
To avoid getting sleepy tooo early, I would sleep from daybreak until about 330pm and then only had a few hours until the sun went down and then:
MY DAY BEGAN.
When I get home (from parents house in January) I think I will go back to that routine until I am done with MP.
Hope this gives you some ideas for your boredom. I live alone so have to entertain myself and sometimes my mind goes wild.
HANG IN THERE, WE WILL MAKE IT!!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
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totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
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Foundation Staff
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Posted: Fri Dec 16th, 2005 16:09 |
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Chris,
Barney is right that many activities normally done during the day can be done at night. Perhaps you could change your sleeping pattern for your vacation time so that you are more awake at night.
If you are looking for indoor diversions that will get you out of the house with or without the kids, here are a few suggestions.
-bowling
-an indoor shooting range
-a movie
-a games arcade
-a trip to the biggest shopping mall nearby
-an overnight at a nice motel with a pool
-an indoor waterpark
-a leisurely meal at a fancy restaurant
-the theater
-a museum
-a planetarium
I live in northwestern Wisconsin where we have long sunny summers but cold, snowy winters so there may be more indoor recreational activities promoted here. Indoor waterparks are a growing trend that the whole family can enjoy. For those who are interested, the Wisconsin Dells has the most indoor water parks in the nation. And for those who enjoy a shopping/recreation experience, the gigantic malls in Bloomington, MN and Edmonton, Canada might be worth a special trip.
Best,
Meg
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paulalbert
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Posted: Fri Dec 16th, 2005 16:58 |
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Growing up, I remember a children's television program by the name of Captain Kangaroo. As they did from time to time, the children announced to the Captain that they were bored. That was his cue to play a song about all the wonderful things you could do when you're bored.
Here they are, with comments about appropriateness with respect to the MP:
running CONTRAINDICATED
skipping CONTRAINDICATED
hiding OK
jumping CONTRAINDICATED
laughing OK
The song ends, "There's so much to do. These are just a few." My young self always thought this list wasn't all that impressive (no matter how much it changed the minds of the children on TV), and now it seems less so. 
I don't know-- it just helps me to remember that the purpose of my life right now is to get healthy. As a response to a question about what activities to do, this is kind of a copout, but it helps me to bear this in mind whenever I'm close to losing my patience.
Paul
Last edited on Fri Dec 16th, 2005 18:37 by paulalbert
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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Mellie
Member
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Posted: Fri Dec 16th, 2005 17:38 |
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I know some of these things won't appeal to guys, but here's some things I'd like to do when I'm in your situation:
Write a book.
Write poetry.
Sew.
Quilt.
Knit.
Make mosaic tile items...I saw a craft show yesterday, and a woman mosaiced a whole wooden chair - it was beautiful. Seems a suitable craft for men and women.
Make and utilize a simple wood workshop to fix things that may need fixing or changing things you'd like to change. So what if you're pounding when everyone is asleep. 
Get a metal detector and go find treasures...does it care if it's day or night?
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Cough-1/02; Eye L.Node Joint Muscle Anxiety Heart Palps Tinnitus Feet-1/05; Dizziness-7/06; Thyroid out-6/95; ACE 57-1/05; 69-6/05; Synthroid. Limit D foods & sun since 6/05. Have Noirs. MP Doc appt. Oct 3.
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jrfoutin
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Posted: Fri Dec 16th, 2005 18:12 |
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Sydney Chris,
Sounds like the problem isn't just what is suitable for you, but also the kids. If you and they must be awake during the day, then they can have fun in a number of ways besides running in and out of the pool (but good thing you have one for them to play in, anyway).
Before I even had any idea I had Th1, I always insisted my children did some quiet study times during the summer breaks. Age or grade appropriate workbooks are available online or likely in local education or book stores and I would choose those very carefully and easily map out an hour of study to keep their brain active. Computer activities were a nice break from pen/pencil pushing for them, too. Libraries, although well lighted, are indoors and can be handled for long enough to gather a week of books for reading time after lunch while younger children and you can take a much needed cat nap.
Discount movies at a theatre are not so expensive and certainly have less light than a day at the beach. Indoor bowling usually has better lighting on the pins and balls than in seating areas, but you can cover up and still be indoors. There may be museums that have dimmed lighting except on the exhibits. Often, colleges and universities have theatre and dance events that turn the lights down on the house and you don't have to move about a lot.
You might exchange time with parents of childhood friends, timed to your expected herx peaks and valleys. Yours will be quiet puzzles, board games and home theatre moments, and theirs can be raucus fun in the sun if their parent's so choose. That will give the kids some variety and you will get some days off for rest and catch-up.
Craft and Hobby stores have many, many ideas, but choose crafts not only on project face value, but also the time it takes to complete a project. Plan more that finish quick, fewer that take a week, and some that take a month and teach them the value of sticking to a project. Kids need more of the short term results, but finishing a long term project has it's own rewards, too (those finishing up the MP might agree).
Invite your kids into the problem solving arena. Explain the boundaries of your ailment and see what they come up with. You may be pleasantly surprised, and they will have an opportunity to take ownership on the bigger issues that impact their life and the life of their loved parent, too. Everything is an opportunity to learn.
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Sydney Chris
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Posted: Fri Dec 16th, 2005 23:24 |
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Cheers Barney, Meg, Paul, Millie and jr... some great ideas and trains of thought there..
Love the thought of engaging the kids (and keeping them quiet as well)..
Hope you all enjoy your holidays as well, will let you know what we ended up doing..
All the best
Chris
____________________
Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
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Reenie
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Posted: Sat Dec 17th, 2005 00:38 |
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Hi Chris,
It looks like you've already had lots of good ideas suggested to you.
This past summer, I had my 4 Grandkids staying with me for about a month and I was home alone with them while on the MP. They were ages 3, 6, 6 and 9.
Since they didn't have school and it would be daylight out until about 8:30pm, we would go swimming after dinner and then they would shower and get ready for bed so they would sleep in some with this schedule.
By the time they would be dressed and fed in the morning, it would be about time for the youngest to nap so the 3 older kids would have quiet time, watching a movie or coloring or reading a picture book. By then it was snack time, then not long until dinner.
If we had somewhere to go like running errands or an indoor activity, I'd try to schedule it late in the afternoon so we could still go swimming or outside at dusk and into the early evening.
I hope this helps. 
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Sydney Chris
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Posted: Sat Dec 17th, 2005 04:43 |
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thanks Reenie... it all helps.. Merry Christmas..
Chris
____________________
Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
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DNStog
Moderator
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Posted: Sat Dec 17th, 2005 08:21 |
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My daughter, an only child, used to love for me to help her build forts out of chairs, blankets and sheets and then we would read a book together by flashlight or she would play dolls. Since you have more than one, they can keep each other occupied once the fort is built. We also had indoor picnics by placing a blanket on the floor to eat our lunch/dinner and watch a video together. She and I still relish the old comedy videos we watched together when she was young. (She's 24 now.)
You can always create your own summer camp by setting up a schedule of daily activities just as counselors do at camps to keep everyone busy. Each child could help by giving their own suggestions of what they want to do as a group. Having been a camp counselor a couple of times and a Girl Scout Leader to 24 little girls, I kept them busy. There's campfires to build, crafts to be made, nature walks at night, games to be played. One evening we had an overnight at our local zoo which allowed the children to observe the animals in their cages after dark and brought out small animals to pet. They loved it. Summer was always a time that bed curfews were NOT strictly enforced at our house so we usually slept past 12 noon which cuts down on the daylight hours to fill.
Wishing you well and an enjoyable vacation with your kidlets. 
Donna, still cruising ~~~~~ 
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
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scooker48
Member in Phase 3
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Posted: Sat Dec 17th, 2005 16:54 |
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Sydney Chris,
There have been many helpful suggestions posted here but I want to add my two cents.
In the book "The Little Prince" the author wrote that whatever you invest yourself in, you will love.
Do anything you wish, but do it out of the sun. And wear your NoIRs. And be thankful for the MP which is making us healthy.
With good wishes to everyone for a Happy New Year,
Sherry
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Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 5/9/09 D25, D3 6; D25 D2 <4, Liver function normal 4/08; Wear NoIRs outside. No K creme used. 5/09 Liver and kidneys normal.
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Grace
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Posted: Sat Dec 17th, 2005 23:13 |
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Chris,
you could pack the kids off to some friend or relative.But I think the better rest for you, would be you go to some friend or relative,that have a quiet household,will let you darken their house,and understand that you are unwell and need some one and will look after you,and also have air con.
take care of yourself
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Aussie Barb
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Posted: Sun Dec 18th, 2005 21:29 |
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Chris
There are many wonderful suggestions here.. As a parent I know how much we valued our time together with the kids in the Holidays..
As a grandparent, I know how much we value having our Grandchild around too, and giving treats etc.. our kids didnt have this .. If you have any Grandparent' or trusted extended Family help, that may give you and the kids a little break as well..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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wrotek
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Posted: Mon Dec 19th, 2005 00:23 |
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| microscopy, tracking Lyme bacteria
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Sydney Chris
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Posted: Thu Dec 29th, 2005 21:05 |
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hi All,
Holidays are going pretty well... late nights, late starts (well today is an early one), but waking naturally, resting, stretching and doing some light exercise during the day time.
Have been going for walks in the evening (3 times now), was very difficult at first, had to stop after 2 mins and rest. Last night, after one of the best days I've had in a few months was in pain only at the start of a small hill, made it home ok and not overly fatigued afterwards.
The kids do things with me inside, craft, drawing, reading and some new fad where you twist small nylon straws into different patterns with a range of knots (phonetically called 'scubidoos'). I can watch them in pool from the kitchen, and have been out with the wife for couple of dinners. (movies are a bit of a sensory asault I'm afraid).
Hope you all are well and had a great Christmas..
Chris
____________________
Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
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Leesa
Member in Phase 3
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Posted: Wed Mar 22nd, 2006 19:04 |
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If you are looking for indoor diversions that will get you out of the house with or without the kids, here are a few suggestions.
-bowling
-an indoor shooting range
-a movie
-a games arcade
-a trip to the biggest shopping mall nearby
-an overnight at a nice motel with a pool
-an indoor waterpark
-a leisurely meal at a fancy restaurant
-the theater
-a museum
-a planetarium
Questions: I am ready to start doing some more fun things with the kids if they are safe for me. We have a ton of the places above here in Houston, and my twins only go to school 2 days a week this year, so we have the time now before they go off to school 5 days a week next year, and I feel good enough to do some of this NOW. But.....how do you avoid ALL natural sunlight at a mall, when there are entry doors and possibly skylights there. Can you dress all in long pants and long sleeves and keep on gloves and NoIRs and maybe throw on a cute baseball cap and k-cream and be "safe". And what about the drive, I of course would cover my head area with more than a baseball cap, but how do I determine if getting out in the sun for the 20 minute drive each way to go out and play is better than just staying at home all together?
BTW...I do not go grocery shopping at all nor do I drive my kids to school, right now I limit my sun exposure to only doc appts and maybe 1 other outing a week. I am in my house almost all the time during the daylight.
I really would like to go to the mall 2X a week to walk a bit and push my baby in the baby jogger, my legs could use the stretching and I mentally would love to get out of the house. Is the risk worth it???????????????????
Help? I am cnfused, can't decide?
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Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! D test 11-04:1,25D-70 & 25D-46;(9-06)25D-17 (1-07)& 16(2-2008)
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Reenie
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Posted: Wed Mar 22nd, 2006 21:16 |
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Hi Leesa,
I think depending on how you feel will determine how much light is OK for YOU.
When I went to the mall at times, I was able to stand it, with a hat, glasses, covered up, w/o gloves, sticking hands inside my sleeves or pockets. I used the phrase stand it, since I definitely was MORE symptomatic when I did this, but the trade-off at the time was worth it, for ME.
Most of the time, I prefer to stay indoors and away from light because the trade-off is NOT worth it. In other words, it will depend on the activity and why you're engaging in it. IMO, you will KNOW if/when you try it and then, depending on where you are in your recovery as to how well you're feeling as to if it's "worth it" to increase herx symptoms a bit more from the light at that particular time in your MP treatment.
Why is my 'herx' more intense after exposure to Light & / or Vitamin D?
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