A Swim In Lake M.E with a Chocolate Orange in One hand, and Tinsel Around my TENS

I should warn you that what follows in not in any way a searching discussion...of well, anything really, just random thoughts from a broad, getting progressively more broad...and remembering long ago when she was able to travel abroad. OK, ok...you can come out now, I'm done with the wordplay....

So many things rattling in my little tired brain- will I have enough energy on Christmas day? Do I want to wear my chandelier earrings and draw attention to myself ?( won't the deathly palor and the walking cane be enough?), Will the noise from the carol concert put me into relapse? How can I decorate the bed to look 'Christmassy' without knackering myself out in the process?
How many years must I have this *&%$ing illness ?!?:bang-head:

The most pressing of these questions is how to pimp up my 'clean eating' diet to feel special and Christmassy enough to celebrate the coming of the Messiah. Ok, so maybe it's not that important and maybe Baby Jesus won't care if I can't join in with the eat-till-stuffed way that we celebrate his birth...but it is one more way that I am different...and whilst part of me likes to stand out, to be special, original., different.. an equal part does not want to be seen as I am now-handicapped, disabled, horizontal rather than vertical, No thanks I can't eat mince pies/Christmas cake/that, and I'm just going for a lie down, please can I have a glass of water?.
The first three of that list seem to me to be sexy and daring, the last three are languishing in the shade of my own prejudice, honed by years of playing for the 'well' team and soaking up societal prejudice against those who are not valued in our capitalist society.

So from Socialism to chocolate....
As a child growing up in the 70's every Christmas the toe of my stocking would be stuffed with a small square box, housing a sphere about the size of a tennis ball. The ball was wrapped in orange paper to resemble an orange. The catchphrase was 'Tap and Unwrap', and it was wonderfully satisfying to tap the bottom, crack open the foil and watch each perfect, orange -scented segment separate from its neighbour. Each piece dovetailing together.to form a milk-chocolate globe.

I don't know if these festive essentials are still being produced...but anyway, this year I won't be eating one. Like many of you I am on a clean eating plan not in order to get better/fitter/lose weight but merely to maintain the little health I have without waking the intolerance dragon. No alcohol, dairy, citrus, spicy food, sugar, processed foods, pastries- brown everything and avoidance of white carbs. NO CHOCOLATE!!
Clean eating-it's clever, but it's definately not funny.

The chocolate orange was probably not particularly delicious by today's 90% pure cacao standards, but it was SO satisfying to unwrap and extract one perfect segment!. If only all things fitted together like that orange.- like chronic illness for example. I frequently feel as if I doing some elaborate 3D puzzle involving numerous oddly shaped pieces that refuse to fit together harmoniously: diet, pacing, vitamins, medications, meditations, activity, PEM,crash -rinse and repeat.

To many of my questions there are no answers. I may be spending Christmas lunch with others, or I may be balancing a small plate on my duvet. . As for the longevity of this %*&£ing illness...how long is a piece of tinsel?

I wish for you all as I wish for myself, a Blessed December, celebrated with gratitude, in whatever way you can...and may 2016 be overflowing with better health!!!:hug:

I just don't know about the earrings...;)


Wow, can I ever relate to your very humourous description of only one of many losses we M.E. patients feel particularly intensely at this time of year. You mentioned being on a "clean eating" diet. How's that going for you? Any improvements? I put myself on the equally-restrictive GAPS diet (no grains, seeds, legumes, starchy vegetables; plus restricted fruits, nuts, dairy) about six months ago. Preparing absolutely everything I eat "from scratch", especially the broths and ferments, is almost a full-time job -- especially for someone who is also attempting to stay within her "energy envelope" using a heart rate monitor. The biggest benefit from doing the hideously-restricted GAPS introduction diet is confirmation of SIBO, and also MCAS. So, in addition to cutting out the non-GAPS foods, I also have to avoid FODMAPS and histamine-containing and liberating foods. Virtually every food falls on one of the "avoid" lists. There aren't many foods I don't react adversely to, and I've lost so much weight I couldn't afford to lose in the first place. After almost 30 years of what you refer to as this "%*&Ling" illness, I have few opportunities to socialize at any time of the year, let alone Christmas. Nevertheless, I'm skipping the one party I could go to -- partially because I won't be able to eat a thing, partially because I won't subject myself to the "what are you doing for the holidays" questions from acquaintances who have no concept of how compromised my lifestyle is based on how "well" I look for the few hours out of each month they see me. Too bad those of us in similar circumstances can't get together to "balance a small plate" on our respective duvets. Thanks for the chuckles. and best wishes for a Merry Christmas, and especially for improved health in the coming year.
Omg my husband found one of those chocolate orange thingies somewhere and put it in my stocking this year, 47 years old and that was my first one ever! Brilliant. Ate that sucker in 6 days lol. And it was delicious, even by today's standards
Thanks for the nice comments @Firefly and @ahmo and @oldbones- I appreciate the encouragement for my first blog. I did manage to eat Christmas dinner with others, but after about an hour of horrible pain I realized there was utterly no point in martyring myself and headed home for a very long sleep and a raw choc brownie on a tiny plate on the duvet as my dessert ;-)

@ahmo- good to hear your adventures in diet land. I am restricted quite a bit, but this is made somewhat easier by almost zero socialising. I do actually enjoy finding new ways to prepare food and I try to think of it as 'maximum nutrition' rather than as depriving myself of other things. I tell my husband I am like an athlete in training and need to feed my body to work to full capacity- within its limited means.
I am glad you have found a diet which helps, although it sounds tricky to maintain and get all your nutrients, not to mention energy consuming.. I tend to make things I can make in stages and rest in between and I do a lot of soups and raw stuff.

Fortunately ( or do I mean UNfortunately ?)I have to say diet does make a huge difference to pain and maintaing energy levels.. I genuinely don't know how people eat sugar or white carbs, without it causing them huge problems- my body reacts like it's been drugged!
With respect to food, you are so right about the mindset change this illness requires -- turning it from "fun" to "fuel". I decided to ease up a bit on my diet for a few days during the holidays. I tend to have a short memory for the reasons I've removed certain foods from my diet. So, when contemplating what delectable "small bites" I could prepare that wouldn't contain gluten, grains or sweeteners, I decided savoury appetizers would fit the bill. I loaded the fridge with smoked salmon, bacon, prosciutto, and aged cheeses. For a festive beverage, I chose ginger kombucha with sparkling water. All of these are high histamine foods -- something I failed to take into consideration while strolling the supermarket aisles. By Boxing Day, my eyes were almost swollen shut, my arthritic joint pain was much worse, my body was intensely itchy, and it felt like my arms and legs had been dipped in acid.

Fortunately, I found one new recipe that's legal -- baked butternut squash chips. Not only are they delicious; but also, every night after eating them in the evening, both my husband and I slept exceptionally well. We have no idea why, because we don't experience the same effect after a bowl of butternut squash soup.
You had me at 'Chocolate Orange' :)

Stash brand makes a herbal tea that is Chocolate Orange flavour and it's actually quite good. I do eat the high cocoa content dark chocolate sometimes. It's ok for me because it's low on dairy and sugar. Fortunately I prefer it. Of course I would just eat it all the time if I could...

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