Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Holiday Tips for Chronic Illness


  • This topic is locked This topic is locked
19 replies to this topic

#1 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 13 December 2012 - 01:00 PM

It's that time of year again, when many of us with chronic illness or chronic caregiving issues need to juggle the demands of the holidays while also tending to our medical needs. It's not even easy for people who are totally healthy to deal with the holidays. So what are your tips for getting through the holidays with the least amount of stress? Please share your tips for making the holidays easier to cope with in this thread.

Just remember that we need to tiptoe around all religious sentiments, so "holiday" or "celebration" are one-size-fits-all words to employ, I.e. holiday lights, holiday songs, holiday dinner, celebration services, holiday decorations, holiday greetings, holiday parties, family celebration dinner, etc.

I'll start by saying we cope by limiting our holiday celebrations to just a few hand-picked events and decorations. The less we decorate, the less we have to clean up afterwards. Luckily our place is very small. This year, we hung stockings on our fireplace, and we have one holiday decoration for our dining table. That's really all it takes to give our entire place some holiday cheer.

We try to attend only one holiday party or a maximum of two if we can swing them without getting worn out. We also plan for one evening of touring the city to see the best holiday lights.

In other words, our holiday theme is "simplicity". It is amazing how much more relaxed we are during the holidays without an endless stream of baking, partying and decorating. We were delighted to find that the world did not come screeching to a halt -- and that our enjoyment increased rather than decreased -- when we opted out of all of the things that we found stressful about the holidays.

But not all of us like to simplify, of course! So what are your tips for eeking the most enjoyment out of the holidays while coping with illness at the same time?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 15 December 2012 - 09:00 AM

Hi Shelley,

I do enjoy the holiday celebrations but I can see what you mean by "simplicity"; it sounds a really good idea!! We do tend to have a round of social functions this time of the year; we had one last night, we have another tonight and I have two next week; I just hope I can stand the pace!! :P

My husband retired a couple of months ago and his office always holds a celebratory dinner for the staff and their wives at this time of the year. They're a lovely crowd and it was nice to go and see them all again. Prior to having Scleroderma I was a lot more liberal with the alcohol; these days I hardly drink anything at all (I might force down the odd gin and tonic very rarely! ;)) as I feel my poor liver has quite enough to contend with the strong medication I have to take! ^_^ One year the venue was a fabulous restaurant with a champagne reception and all the works; the only problem was that as there were so many of us the meal service was rather slow and the waiters were constantly topping up the drinks in the meantime. After about the sixth glass I lost count of how much I was actually drinking on an empty stomach and by the time the food arrived I was almost paralytic!! Fortunately hardly anyone noticed as they were all paralytic as well!! ;) :lol: I certainly paid for it the next day with the most horrendous hangover and it jolly well served me right!! :rolleyes: :lol:

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#3 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 16 December 2012 - 06:42 AM

I think I would prefer to go away and be pampered but since it is really about family we get together for one day & I just do a simple buffet for everyone (that can be around 16 people!) When it comes to decorations like you Shelley, I keep it down to a special tablecloth & runner with just candles and with luck one of my daughters comes round and puts up the tree and does it for us (at least that happened last year so I'm hoping that might be the same today since she's visiting us this afternoon).
We do a visit to my mothers but that takes 2 1/2 hours to get there and the same back so it is very very tiring!

Buttons

#4 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 16 December 2012 - 01:00 PM

I love the lights, sparkle and glitter of the holidays. I guess it is the artist/art teacher in me. Years ago I decorated the school I taught in by turning a hallway into a winter wonderland that included hanging snowflakes from the ceiling the kids made, having the kids paint the windows with a winter theme, and doing the scenery for the stage for the play and concerts. It was a lot of climbing up and down ladders, glitter everywhere. The huge plants in my home were strung with white lights and every room was decorated. Each ornament on the tree had to be in a special spot, only I could do it (no OCD there! :lol:) Presents were wrapped beautifully with ribbons and bows, my niece still talks about how pretty the presents were. We spent our time running from family to family. Over the years things changed with family members no longer with us or moved to distant places. For a couple of years we went away for the days I was off from teaching.

After being diagnosed with scleroderma and during the time I was on dialysis things changed drastically. I was no longer physically able to work, go away, or do the decorating. My husband helped me with the back of the tree but I still had to do the front (OCD on a lesser level.) I remember climbing the steps stool with a canula attached to the oxygen converter, it took forever because I had to stop and rest. My hands could not longer handle the ribbons and bows and shopping became an online thing. Gift cards and checks took the place of the beautiful packages. Boxes of decorations were no longer put out and half the ornaments were not put on the tree. Holiday cards became email greetings because it was too difficult to write them out. The holiday became rather lonely, no parties, no family gatherings, very little decorating.

Now, post transplant, at a plateau with the scleroderma, with better use of my hands, and more energy the house is decorated and the tree up, eveything looks beautiful. My husband helped with everything including the tree and I've only moved a couple of ornaments that he put up (getting better with the OCD :D .) After a week of going up and down stairs to do all of it I crashed and needed to rest but I figured that would happened and planned a down time period. I made a gingerbread house with my 5 year old niece and had to take a nap when I came home, I covered journals with canvas and did a project with my 13 year old nieces painting them, fun but tiring. How I ever taught art all day to little kids and the energy level I had is beyond my comprehension now but I enjoying doing things with children again and creating art on my own.

Once I have a couple of days to rest I will make batches of cookies, something I enjoy as I have more hand strength and has become easier. And then I will rest. :P Most of these I will give away. Then I will rest again.

One of the biggest stress relievers this season has been that we decided instead of buying or receiving gifts for each other and family members we would donate the money we would spend on ourselves and our family, which now is 7 siblings, 11 nieces and nephews, and 9 grand nieces and nephews to a local family who lost their possessions in the horrible storm that destroyed our beautiful coast in October. All of my local family members only had a loss of power for several days and no one really needs anything so we discussed our plans with them and everyone agreed. Instead of running around shopping, which I dislike in the first place, find physically exhausting, and get gift anxiety (will they like it, did I spend enough, did I spend too much) we found a family with an adopted teen, a 5 year old, and a baby due in a couple of months. They lost everything on their lower level in the flooding including their car, and lost pay due to time off from work as everything shut down for a couple of weeks. They expressed concern to a neighbor as to how they were going to get through the season and were brought to the attention of the school social worker which is how we found them. We donated the money we would usually spend on gifts to them to ease their worry. It is wonderful to get away from what has become consumerism and return to really giving.

We went to a family dinner last night and everybody enjoyed being together without all the presents. We will have a small family dinner at our home but otherwise have no plans. It will be quiet but it will be the BEST holiday ever as in our hearts we know that somewhere a family is able to provide for their children without worry.

And I will rest up before the un-decorating!

miocean
ISN Artist

#5 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 16 December 2012 - 03:16 PM

Hi Miocean,

What a lovely holiday that family will be enjoying thanks to your very kind and generous gift!! :happy-day:

I'm doing the Sclero Happy Dance for both you and them!

:emoticons-line-dance: :emoticons-line-dance:

Best wishes,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#6 Shelley Ensz

Shelley Ensz

    Root Administrator

  • Topic Starter
  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 17 December 2012 - 10:42 AM

Hi Miocean,

Oh my goodness, I'm exhausted just reading your holiday plans. But I'm also cheered as I know you couldn't even have attempted any of this a few years ago. And it is very kind and thoughtful of your family to be giving a gift of generosity and helpfulness for the holidays. I am sure it will be greatly appreciated!

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 18 December 2012 - 09:16 AM

I don't know how you do the HOLIDAY (hehe) events at all. Our family is fragmented all over the place, and this year, there are even more family changes, that make things crazier...so we are going to do NOTHING. :) I should be able to handle that, but then again who knows. I've been a weak wreck lately. :) I'm having one pity party every other day. Oh, did I forget to invite you? Sorry, but it's not a pretty sight, you'll be glad you didn't attend. :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 18 December 2012 - 09:44 PM

Dear Sweet,

I've been missing you on the forum and I am sorry to hear you are going through a rough time. Anything we can do to help?

Depending on how you are feeling doing nothing at all may work or it may make your pity party really rock! You may want to take Shelley's suggestion and do something very simple, maybe a candle in a special place with photos of the family you are not with .The years I "downgraded" the holidays due to illness I felt more depressed.

I know I've had my share of pity parties, will probably have some more, and you have all joined in with me. Let's see, what can we bring...

I'll bring the chocolate, that usually helps! And the cookies and ice cream!

miocean
ISN Artist

#9 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 19 December 2012 - 06:23 PM

Oh Miocean if you're bringing chocolate, the party is on! hehehe. I'm doing OK, I don't do well in the winter, and we have 3 feet of snow. This is the first year I realized I need a "happy light". So in search of a good one.

Just having you guys here to talk to helps so much.

xoxo
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Shelley Ensz

Shelley Ensz

    Root Administrator

  • Topic Starter
  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 19 December 2012 - 08:24 PM

Hi Sweet,

Those "happy lights" really work, we've had them in our house for years. Weirdly, we got them because I really and truly needed them, but my husband, who is about the happiest person on the planet and the last person you'd think could feel even a whit of seasonal affective disorder, instantly noticed a difference in himself and he insisted that we get more, and more, of them. Over the years, they have become the primary light source in our house.

Look for the kind that look like real lamps, not the big square box. If they are a real lamp in a spot where you naturally sit every day, then you get light therapy just reading a book or at the computer or while doing crafts, etc. If you have to sit and stare at a big glaring box, well, that would get stale for me in a real big hurry! And besides, that's not even necessary.

We use them year round. Another nice side effect of them is that they are good for sewing and crafts as they provide true light -- but, the ones that are sold specifically for sewing and crafts are not strong enough for medicinal purposes.

Your "happy light" will work the best if you use it next to your computer while replying to messages on Sclero Forums. Because we really miss you when you're gone, Sweet, and it makes us all very happy when you're here with us, right where you belong. :emoticons-clap:

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 20 December 2012 - 01:26 AM

Please, please let me in on the secret - what is a 'happy light' and what does it do besides light your way?

Judyt

#12 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 20 December 2012 - 06:55 PM

Awww Shelley you are too kind.

Judy the "happy light" is a light you can buy that gives off the same effect of natural sunlight - to my understanding you sit in front of it for so many minutes a day, and it helps people that suffer from SAD " seasonal hmmmm what is the A ummmm sorry my brain fog just kicked in- D stands for disorder. Basically seasonal depression due to lack of sunshine.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#13 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 20 December 2012 - 09:47 PM

My therapist suggested I get a "happy light" so I just ordered the one she uses as there are so many different kinds and she likes hers. I also have the natural lights throughout my house and by my computer but need more.

Seasonal Affective Disorder (SAD) is definitely one of my disorders! I couldn't decide if I was just worn out from doing so much or suffering from lack of sunlight. We had several days of dreary, cloudy, rainy, weather and all I wanted to do was hide under the covers. Then the sun came out and I was so much better.

I'll let you know if it helps.

miocean
ISN Artist

#14 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 22 December 2012 - 02:05 AM

Thanks Sweet and mio,

Yes I know about SAD, my brother lives in Sweden these days and after living in NZ, where we have loads of sunshine, for the first 25 years of his life, his SAD is almost like an illness, although he complains less now than years ago.

Considering we are just going into summer now and even in the dead of winter we still get at least 10 to 12 hours of daylight every day, I am not surprised that I had never heard of 'happy lights'.

I will have to ask my brother if he has one.

Judyt

#15 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 26 December 2012 - 03:00 PM

Hello All

My one and only tip is...get plenty of sleep!! I did not sleep well the night before the big day and was really, really tired when we went to my sister's, accompanied by my dear friend. By the time we sat down to dinner I had gone beyond it but tried to battle on, my big mistake was having 2 tiny sips of my sister's wine. I then went on to yawn consistently for about 2 minutes and by the time the food was put in front of me I was about to pass out from fatigue! I had to go to bed and slept for an hour, thereafter, I was okay for a few more hours and went on to have a jolly good time.

Today has been a big sleep day and tomorrow will be as well, after that who knows!

Take care and sleep and nap and rest and snooze and catnap and catch some Z's and get with the horizontal...
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#16 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 27 December 2012 - 06:36 PM

In hindsight I would also like to add to stick with the food program that works best for you as much as you can during any holiday or event. The "special treats," whether it is food or drink, can wreak havoc with you physically and emotionally, especially with an illness.

Too many sweet treats for me. I look at them now and have absolutely no interest. Good thing I gave (almost all) the cookies I made away and others were able to enjoy them. :D

miocean
ISN Artist

#17 Shelley Ensz

Shelley Ensz

    Root Administrator

  • Topic Starter
  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 28 December 2012 - 07:06 PM

Hi Miocean,

Oh you are so right about keeping to a food program during the holidays.

I sure don't recommend this for others, as it is not my mission to destroy all the joy in life!, but I've found out the hard way that it is best for me to go into the holidays planning to *not* diet with the start of the New Year. Planning on a New Year's health and fitness kick seems to give me permission to overindulge a bit. Whereas, if dieting is simply not an option, it seems to tame my consumption and keep me focused on healthier options as much as possible. Besides, with chronic illness, those health and fitness kicks don't seem to work so well -- or even not at all -- anymore, just disrupting everything from sleep to pain levels for me.

Amanda, I also agree about sleep. That's a major reason we are very careful to keep our holiday activities extremely light. The best gift we can give ourselves is the time to recuperate so that we can enjoy the company of others in a halfway decent frame of mind. "Less is more" is the concept that gets us through this season in one piece. We pick just a few choice things that give us holiday cheer, and we intentionally skip all the rest, with no guilt and no wishing it was better or different.

If health challenges have taught us anything over the years, it is the amazing power, and freedom, of very carefully defining what "enough" is, and reveling in that, and that alone. "Enough" helps us realize how very blessed we are with the things that really matter, our friends, our loved ones, and all of our precious companions in Sclero Forums. And severely editing our list of enjoyments gives us so much more time and energy to enjoy the few that really matter to both of us.

May your holidays and new year be filled with "enough", but most especially with enough time to rest, relax, and refresh!

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#18 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 30 December 2012 - 04:40 AM

Oh I love everyone's ideas! I have turned into a minimalist decorator during the holidays too. I use the cards I receive in the mail and hang them on a ribbon strung across my picture window. Sadly this year I only received 3 cards! Compared to the 50 or so just a few years ago - might have something to do with the fact that I didn't send any out - my gift to myself. Although I usually love writing a holiday letter, taking a photo of the boys and making a card, I let this tradition slip away 3 years ago when I was feeling stressed and overwhelmed. Makes me sad but it did get expensive too when I found myself sending out 70+ cards!

I have a fake tree and hate putting it up and taking it down each year. It takes me an hour just to fluff the thing! I think I'll just put it in the shed all strung up with lights and decorated. How easy would that be to just pull it out next year and plug it in? Ha!

I hope everyone had a peaceful relaxing holiday and wish everyone a happy pain-free and prosperous new year!

#19 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 30 December 2012 - 04:42 AM

OH! I use a 'happy light' too. I find that it does help!

#20 Shelley Ensz

Shelley Ensz

    Root Administrator

  • Topic Starter
  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 30 December 2012 - 08:21 PM

Hi Barefut,

One year, back when we had a holiday tree, rather than put it away, I moved it into our bedroom. It made for very pretty soft mood lighting and it was great fun to wake up to a decorated tree every morning.

Isn't it amazing how just a tiny bit of seasonal decorations can get the whole point across? When we started simplifying our lives, instead of continually and compulsively complicating them, at first we felt a little abashed when we realized how much money, time and energy we were putting into things that didn't really make any difference in our actual happiness or satisfaction.

I hope you don't feel too bad about the lack of holiday cards. I think people are going to email so much that they hardly even have anyone's snail mail address handy anymore.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.