Chronic Illness and the Holidays: Finding the Positives

Posted by: Maff

Maff

Chronic Illness and the Holidays: Finding the Positives For those of us suffering from environmental illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, multiple chemical sensitivity (MCS) and gut problems including irritable bowel syndrome (IBS), leaky gut syndrome (LGS) and Candida it can be hard to stay positive and enjoy life at any time of year but the holidays can be particularly difficult.

Just when the generally healthy majority are taking time out, indulging and letting their hair down us 'canaries' can often find life even more of a struggle than normal. At Christmas people are told to "eat, drink and be merry" - and most people happily comply but this poses a problem for us unfortunates.

First of all there is the eating. Most of us will have some kind of dietary restriction whether our own bodies have told us to avoid certain foods, we've discovered the "baddies" through our own research, or we've been put on a particular diet by a health care professional. Sweets and candies are everywhere this time of year but are almost universally a bad idea for the canary - they exacerbate hypoglycaemia and feed the bad bugs in our guts such as Candida and unfriendly bacteria. Then there are the snacks and nibbles packed with wheat, dairy and food additives that are highly tempting but no good for the majority of us with gluten and/or casein sensitivity or lactose intolerance. It's a dietary minefield and often it's highly temping to step on a metaphorical mine despite knowing the consequences will be unpleasant to say the least.

Then there is the drinking part. I for one cannot tolerate a drop of alcohol without getting an instant hangover. It might be worth it if I got to enjoy the pleasant relaxing and socially enhancing effects first but no - just a big fat headache (and that's just for starters)! It can be a frustrating time when everyone around you is enjoying their favourite alcoholic tipple and you're "enjoying" a glass of water or herbal tea.

Of course for those suffering from chemical sensitivities things are even worse. Lots of people wearing perfume and cologne, fragranced products bought as gifts everywhere, air fresheners in friends and relatives houses...there's no escape.

So onto the enjoyment part of our familiar phrase. First of all let's give ourselves some credit. Us canaries are a resilient lot and put up with things others couldn't even imagine both in the form of suffering often frightening and unbearable symptoms of illness and the way we are often dismissed as hypochondriacs and treated as if we are not quite right in the head. Still, if we do make it to gatherings and parties during the holiday season it can be pretty rough watching everyone else let go of their self-control and eat and drink whatever is put in front of them knowing that we must resist or risk making ourselves even sicker. And to add insult to injury the temptation is there constantly and people will often offer us food and drink and then greet us with a look of puzzlement and disdain as if we have the Christmas spirit of Scrooge when reality we'd like nothing more than to dive right in with everyone else.

Anyway, I am getting off track here, this was not meant to be a rant - I was looking for the positives wasn't I! I have found writing things down and making lists is a good way to put things in perspective so that's what I'm going to do. First 10 things I wish I could do during the holidays but can't because of my illness. Then 10 things that I am grateful for despite my illness (ah, there are those positives I mentioned!). I hope you will join me in this little exercise and add your own lists using the comments box below.

Ok so here are my lists:

 

10 things I wish I could do during the holidays

  1. Drink what I like (lager in the pub with family and friends....and I also used to be partial to a glass of sherry or mulled wine)
  2. Eat what I like (I'm not going to lie here - I would eat just about anything! Christmas cake with crumbly cheese would be nice. An English thing I think?)
  3. Party until late 
  4. Play football/soccer in the annual game with old school friends
  5. Go mountain biking
  6. Go on a skiing holiday to the Alps (I was lucky enough to go on skiing trips every year when in high school)
  7. Go shopping without being exhausted by the masses within minutes
  8. Feel relaxed by the occassion rather than drained
  9. Not have to explain myself all the time
  10. Be myself

 

10 things I am grateful for

  1. I have a great family that loves me
  2. I have great friends who understand and accomodate me as best they can
  3. It still feels like a special time of year
  4. I still get to catch up with old friends
  5. I have not had a reaction to chemicals in years and no longer have to wear a carbon filter mask around people
  6. I am still here
  7. I am not terminally ill
  8. I am still young
  9. I have hope for the future
  10. Last but not least - I don't need to go on a crash diet in the New Year!!

 

Well I certainly feel better for that. I hope you'll have a go too and get some benefit from it. Feel free to use some of my items if they strike a chord with you but let's see how many other things we can all be grateful for!

Best wishes and happy (early) holidays to all canaries out there :-)

 

 

 

 

Comments (7)Add Comment
LadyItchalot
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written by LadyItchalot, November 27, 2009
Hi Maff,
This can be such a powerful aid, finding the positives! Thank you for writing and sharing this blog!

We can prepare for the holidays as best we can. We can be sure that we have enough filters for our masks. We can decide ahead of time how much participation we will involve ourselves in and why.
Then, keeping that in mind, we can enjoy the holiday to our best.

I plan for the Christmas holiday probably starting in August. Nothing much actually gets started until after the Canadian Thanksgiving, but at least *I* know what I need to do to start the process, and that helps with the fatigue of preparation for me.

In looking for the positive, I have learned to be prepared for some of the negatives, so that when the occasion presents itself, I can look for the positive. Weird sentence, that!

Here's an example.
I KNOW that my SIL will have a perfumed substance on her at Christmas. So, I will hug her BEFORE I take off my outdoor coat, and while still wearing my mask. That way, I will be protected largely by a thick piece of clothing which will be removed for the evening. Then, I can just give and get the love and hug that I so miss living so far away from her. smilies/cheesy.gif

As for food, I always bring enough for myself that will be healthy for me. I don't see the foods that I can't eat as something I miss, but as something that I don't want. (Of course, if there is one in particular that I miss, I find a way to have it, "my style".) Because I don't want to feel sicker when visiting with my family!

It has taken 5 years, but now my extended family understands that my masks are like someone else's hearing aid, or glasses, or wheelchair. With them, I can participate in gatherings.

And most, but not least. I am still ME. You are still YOU. We may not be able to do, or even think, the way we used to do or think, but we are still the same person inside. Say that aloud. Say it to your friends and family, with a smile. Let yourself and them know that the person they love still is here! YOU ARE STILL HERE. YOU ARE STILL YOU.

So here's my list of positives:
1. I am thankful that I am still alive.
2. I am thankful to have such a supportive husband.

3. I'm glad that we have figured out a way that I can visit.
4. I'm so excited and looking forward to seeing my grown kids again; my daughter in her third trimester; my son engaged.
5. I have my filters already, so that's a job already done.
6. The preparations for the visit are finally falling into place.
7. I will happily drink my carbonated organic, sugar-free grape or apple juice as my "special occasion drink", using that to celebrate with the family.
8. I'm so happy that my Mom and my Dad are still alive and fairly well.
9. I'll be glad to see my brothers and their families.
10. I'm glad that we have a place to return to that will be safe for me.
11. I look forward to seeing my niece and nephew, whom I haven't seen in 8 months(and even then we were too busy to visit).
12. I'm glad that my young niece and nephew are alive.
13. I look forward to seeing the older nephews and learning about their young adult escapades.
14. I am glad that we will visit with my cousin and her husband. So glad that he is alive.
15. I'm glad that there will be spaces of "off" time between visits.

Live each moment in grateful fullness. It seems almost ridiculous to say that, but it works.

Physically, living in the positive helps turn off the amydala, lowering the stress levels...

I'm not advocating living in a make-believe world. I'm not glossing over the difficulties of having a disability. I suggesting that, with preparation, one can still enjoy life's daily pleasures, different though they be. And with preparation, one can enjoy bigger moments, like Christmas celebrations.

If a person really can't visit family, try looking for unique ways to interact. We just discovered Skype. It is free. And with a camera, couldn't one participate in real time, but from a safe location?!?!

Search for ways to overcome one's disability. Be creative. Join groups and ask for suggestions. There is always a solution; it just needs to be discovered. smilies/cheesy.gif

I've written this sincerely, in hopes of helping you and others to avoid the pain of wishing, and to instead focus on the positives.
Sincerely
Lady Itchalot
konnor
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written by konnor, November 28, 2009
Wishes

1. To enjoy a beer and late night with friends on Christmas eve
2. To indulge in chocolate on Christmas day
3. To enjoy a full roast and all the trimmings!
4. Take a christmas holiday without having to worry about food
5. To celebrate new years with champagne and banter
6. To not feel uncomfortable around others when questioned about food
7. To have stories of adventure rather than struggle
8. To speak clearly and concisely to everyone I meet
9. To wake up feeling fit and fresh
10. To be partially understood what my illness entails before asking.

Grateful for

1. The knowledge I've gained from being ill.
2. My friends are friends regardless.
3. My familys love and care.
4. My immediate health isn't at immediate risk.
5. Developing courage and perspective on life.
6. Getting up everyday living in this world.
7. My ambitions and dreams have more meaning.
8. Not being a slave to addictive foods and drink.
9. Being unique.
10. Being alive.

Fortunately it was much easier to write the gratefullness list.

Heres to a happy holiday.
Maff
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written by Maff, November 28, 2009
Hi guys,

I'm so glad this blog has struck a chord with so many people here on the site and on the EIR Facebook page.

It's brilliant to see that you're all finding it relatively easy to come up with things to be grateful for. Just goes to show what a resilient and positive bunch we are. I think suffering from environmental illness also changes you in a positive way as well. It would be interesting to see how easily healthy people could make a list of things to be grateful for. I'd be willing to bet they'd find it harder than us because you don't realise what's important until you've lost so much.

Take care and enjoy the holidays! smilies/smiley.gif
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written by Nicole, November 30, 2009
Ok let me think..
Dreaming of...

1)glass of champagne
2)turkey dinner with all the trimmings..pigs in blankets!!
3)chocolate..toblerone..love it!
4)snowboarding
5)getting drunk and flirting outrageously or singing loudly out of tune at christmas parties
6)not being cold all the time




Grateful for...
1)Grown up christmas this year. My brother and his girlfriend are dieting and so it's a great excuse for 5 of us to get out of the traditional dinner at mum's and do our own thing!
2)Ice skating in the park (haven't been yet but is on my plan of things to do in December and seeing as I am up to jogging figured I could handle an ice skate..oh yeah!)
3)Because of the lack of money have decided to make all my christmas presents and am actually really enjoying it..have made all my christmas cards and am a quarter of the way through my first scarf(of 2..learnt how to knit on the weekend, just went into a wool shop and told them I would like to knit a scarf for christmas but I don't know how and they were so lovely they taught me right then and there)
4)Have a great excuse if my other presents that I am baking for people taste awful(I am not the worlds greatest cook)as I can't taste test them myself
5)No embarrassing aftermath after normal said singing and flirting at parties
6)Being a size 8 for the first time in years and wearing skimpy party dresses (even if I do have to wear 3 cardies on top to keep warm!)

Could only think of 6 of each, but that was fun..and it did make me look on the bright side.
Went to watch Twilight, New Moon(love vampire and zombie movies) in the end on the weekend which was actually good fun and even though I thought the cinema being full of teeny boppers would annoy me it was actually highly amusing as they swooned loudly over scantily clad teen icons and sniggered at conversations about coming. Also went to the cutest christmas fayre at an old castle (unfortunately wasn't able to indulge in the free mulled wine) but it was lovely none the less and definitely got my spirits up for christmas...so much so that the first thing I did this morning in work was blag a free christmas tree (not that hard as I work for a charity and people are generally quite giving but first phone call and it was done..even I was impressed by that). This afternoon is thus going to be spent decorating it, as my boss kindly said, hey if you can get us one for free then you make the place as merry as you like! Fa la la la la la la la lahhh! After last week am starting to regain a bit of perspective, thank you again Maff.
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written by Nicole, December 02, 2009
Slept through the whole night last night for the first time in 6 months..woo hoo! It might seem like a really small thing but to me that is massive, for months I was only getting about 1-2 hours per night with it slowly improving to just waking 1-2 times per night but in the words of Lionel.."All Night Long!" is massive, am sure he meant something far more exciting than sleeping smilies/cheesy.gif but one step at a time.
konnor
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written by konnor, December 02, 2009
Fantastic news Nicole. Lionel would be proud!

Getting a regular nights sleep is such a core component to good health that I'm sure it will be only positive steps from here on in.
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written by Daniele, December 18, 2009
Thank you all so much for sharing this.

Just when I was starting to feel the dread of the holidays, you've given me back the jolt of hope I let (temporarily) fade.

Happy holidays!

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