Friends in my laptop and the festive season, xxx

Ah yes, it’s that time of year again! When there’s more to organise, to buy, to cook, more travelling, more socialising, and all whilst in pain / near-fainting / struggling to process information and more.

Too often we try to do everything ‘like we used to’, just to try to join in or make it special for kids and other loved ones. Even sometimes to avoid too much aggro’ from people who we only really see at this time of year simply because they just don’t understand why we seem to look ‘fine’ to them and yet we keep claiming we’re not fine / taking painkillers / going off to have a lie down etc.

Oh the joys of being ‘invisibly’ ill during special occasions! <wry smile>

Thank goodness I have my friends living here in my laptop!  Contact, understanding, humour – they all help us to keep going, especially through the tough times and all the more needed when it’s a tough time that many non-patients just don’t realise is so detrimental to us.

Some of us international buds have swapped addresses, so there I was in the Post Office earlier this month sending cards abroad to some of my international friends. Who’d have thought it, eh? I’ve gone from little lonely me who has trouble visiting friends nearby… to meeting up with friends in entirely different countries (so far we’ve only met inside my laptop but that totally counts! 😀 ).

Anyway, there I was telling the postlady which country each card was for so that she could price them accordingly (after commenting my approval of her very festive jumper of course). As she looked at one of the cards her eyes suddenly lit up and she started telling me about the trip she and her family took to Iceland last year. Her husband wanted to see the Northern Lights so they and their grown-up kids went for four days and crammed so much in to the time that I wondered how they did it! But it was wonderful to have a conversation with a random someone that wasn’t about the weather or something else mundane. Instead it was about one of the many countries my friends live in, and all these countries seem so much closer these days, more ‘real’ somehow than they ever could have before.

So, as christmas is what I will be celebrating here (with a little ‘c’ because I’m not religious, but christmas is a part of the culture I grew up in) I will be resting my legs with Magic Dude’s family around me (with a blanket and a hot water bottle whilst playing ‘Cluedo’ or ‘Snakes and Ladders’ with the nieces is likely) and at the same time I shall have my friends of near and far in my heart…

Knowing that my Icelandic friend will have her favourite dried fish as a treat, hearing in my mind my Belgian friend as she jokes about Belgian fries and beer, sending love to my friends from the Netherlands, grinning at the thought of one of my Canadian friends swapping beautiful hand-made gifts whilst wishing love to all my other Canadian friends, hoping that my Swedish friend actually has TV and internet by then (it’s just not right if she has to miss the christmas Dr Who!), knowing that my Swiss friend will probably awake on Christmas day covered in happy and warm cats, thinking of my French friend and hoping that she’s having a lovely restful time, crossing my fingers that my Australian friends are getting on okay with the different temperature over there, and thinking of my USA friends spending time with their families and pets.

And though this is an international themed post I of course will mention my wooonderful UK friends who all live in my laptop too. I can be sitting here in pain after very little sleep and way too much socialising for my brain to cope with the processing (as is always the case for me with any social gatherings) and yet I will still be smiling and thinking of you all.

You, my friends, are a lot of shining lights in my life that bring joy and peace to my heart. It is hard to express how much I care about each and every one of you, I value your love, your friendship, your happiness, your individuality, more than I can say.

Research shows that connecting with people online is a good and helpful thing, but it doesn’t tend to explore how real, true and deep friendships can be forged both in person and from afar. I feel that the value of the people who live in our laptops, computers, tablets and phones tend to be underestimated. There are real people in here, real friends, and when festivities push us too far there are always friends nearby ..as close as the nearest internet connection. How wonderful it is to know you all, xx

And just in case you fancy a chuckle.. I have created an alternate ’12 Days of Christmas’ song that we can sing alongside all the ‘normal’ healthy people, tee hee. So that we can sing it loudly without obviously singing something different.. I’ve made it rhyme with the original and tried to avoid too many loud ‘s’ noises whilst they’re singing softer sounds. Do you think too much thought has gone into this? 😉

Here’s the original…

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And here’s my version…

12 Days of christmas

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Or you can go for The Muppets way of doing things, of course! ….

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I will be thinking of you all and wishing you well as I do the christmas gathering in the 3D world. Wishing you love, light and happiness (and as low pain as possible this winter), big hug from me,

x

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Informal International Network of CRPS Bloggers:

Some excellent advice from Lili in Canada here: ‘Weathering the Winter Holidays

and from Jo in the UK (this one was posted last winter): ‘Getting Through Yule: Chronic Illness, Pain and the Festive Season

Isy in the USA discusses how celebrations vary around the world and that we don;t have to get swept along with them, we can create our own way of doing things that works for us: Happy Everything!

Suzy in the USA looks at her own loss of family and shares the way she keeps a journal to help her to deal with it day-to-day: A Christmas Wish

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An inspiring friend

Today’s photo challenge is to share with you someone who inspires me when the going gets tough. Living online as well as off it has allowed me the wonderful opportunity to meet people I could never have met otherwise. The number of phenomenally inspiring people that I have the good fortune to know has risen rather sharply these past few years. 🙂

Today I have chosen to mention one in particular. Oceans separate us but we feel as if we have known each other for many years already. One of those friendships where you just ‘get’ one another, where each time we speak it’s like no time has passed, and yet the time between speaking still twangs at the heartstrings. We met courtesy of one of our health conditions, CRPS, so it’s been pretty darn good for something eh?! 😉 We had overlapping friends and ended up being admin’s in the same support group. Some of the admin’s decided to get together in a Skype chat, and that pretty much sealed the deal then and there! Seeing and hearing friends for the first time who have been loving and supporting one another but had never actually met in the 3D world was emotional, but in a good way. There were smiles and tears at the same time. The love, the understanding, the wicked senses of humour, all together in my laptop, right in front of me! It was a turning point for our understanding of friendships up to that point. 🙂 (You’ve met one of these awesome ladies in one of my earlier posts).

They’re my sisters, not by blood but by heart, and there are other friends who I would love to draw into this warm friendship group because their insight, their hearts and their humour would fit in so well. Ahhh, happiness!

Well anyway, there’s this one gal, right? She’s called Lili. She has a big bit of my heart that she’s settled into, and she’s there to stay. She’s ridden the rollercoaster ride of multiple severe health conditions her entire life. And despite the extremes she has had to go through she hasn’t lost her big warm heart, or her deep love and concern for others of any species.

Recently the lovely Lili started a weblog for her book which is in progress. With severe allergies her amassed knowledge of alternatives to chemical medications and anything else that could possibly have allergens in it, from foodstuffs to washing soaps is, quite frankly, phenomenal. Much of it is there in her head for instant retrieval because it is such a part of everyday life. I cannot begin to describe how pleased I am that this book of information and alternative treatments for chronic pain is in progress. Lili’s understanding of chronic health issues from pain to immune issues and beyond is so very valuable, and I am glad that the book will be available in the future for us fellow patients to dip into for insights that can help us.

(I keep saying that I want a signed copy, it’s my ‘excuse’ to meet the author in the 3D world! 😉 )

Whilst the book is in progress Lili is writing a blog alongside it with information, insights, tips and more. The style of writing is easy on the brain and the author very quickly becomes familiar to the reader by her style and trust me – that’s her shining through. There’s nothing contrived about this gal!

So here she is, the one, the only….. Lili …(and a very cute baby goat)…

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You can find Lili’s blog here: The Taming of the Beast, and the piccy is from this blog post.

Photo Challenge for CRPS Awareness, Day 20

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 20 – A picture of somewhere you’d love to travel

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Travelling is really difficult these days. Everything has to be planned to the extreme. Higher pain levels will ensue, it’s just the way it is. When I travel I cannot have the usual comfortable seating / sofas / bed, hot water bottles, warm blankets etc that are crucial to keeping my pain below the ‘screamy’ level. So I don’t travel much.

When I go anywhere that isn’t local, it’s as a passenger in a car with hot water bottle and blanket, as well as multiple rest stops along the way. Knowing that travelling beyond my locality means that I will be in greater pain for several weeks afterwards is tough to face up to every time I do it.

If I go anywhere it tends to be just Magic Dude and I, or we make sure that it’s just us by the time we get to the evening so that we can focus on trying to limit the increasing pain levels.

But I do travel from time to time because life is to be lived. I just try to time these events so that I have several weeks afterwards without any other events or appointments to give me time to recover. And if I don’t do that I pay for it with even more pain (I’m still trying to recover from attending several appointments in April).

If I wasn’t so ill I’d like to travel to see my friends.

Not only have I got wonderful friends who I’ve met on my journey through life, I have also met some wonderful fellow patients who are dotted throughout the UK and even internationally. A few of us have got together for group international chats in Skype and we all have lots of contact with each other online. This has resulted in some of the most amazingly strong bonded and heartfelt friendships. I would love for my 3D mates to meet my internet mates, you’d all love each other so much 😀  (There’s a common denominator in my beloved friends… big hearts and a love of grins).

One of my internet besties cannot travel by plane. At aaaaall. So several of us were trying to work out if we could one day get to her house to meet up together. Imagine that! Several of us in the same place at the same time! Imagine the pride of place that group photo’ would take in each of our homes. 😀 (The photo’ would have to be timed between our most grimacey moments, of course! 😉 )

As I haven’t been there… I have no piccy to show you. So… in typical me style I’ve created a daft clip-art creation, an imagined kiddy-style drawing, hehe….

My friend's house!

My friend is the happy witch in the pic’ coz she knows so much about natural remedies for all sorts of things, and creating a big pot of love seemed a pretty good metaphor for how much we all love her just for her being herself. If she was really in witchy fancy-dress, though, she’d be wearing a much fancier witches hat! 😉

Tee hee, this pic’ is such a bizarre thing to be posting on my blog! But there you go, I wanna see my fwiends.

x

Photo Challenge for CRPS Awareness, Day 16

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 16 – A picture of someone who inspires you

As a chronic health patient it is now par for the course that I meet even more inspirational people to add to my list of ‘wonderfuls’ from over the years. There’s something about getting dealt crummy health that makes us fight harder, find the silver lining or, if it’s well hidden, create our own flipping silver lining! 😉

Today I choose to mention a fellow blogger who applies her love of science, her medical training, her experience living with CRPS and her superbly creative and wonderfully active mind to the big jigsaw puzzle that is CRPS.

Many of us live with the condition, many of us try to find out ‘what is what’ to help us work with our doctors to figure out how to treat our individual version of the complex disease. A number of us work to share the information we find to help our fellow patients, whether through friendships, support groups, blogging, information groups or websites. Not so many have the background, the determination and the sheer ‘non-specialist’ cheek to try to help unravel the mysteries of CRPS themselves. But, as I said in a previous post, is it exactly what is useful in what is effectively an informal, multi-disciplinary, international think-tank.

The blogger in question is Isy Aweigh. And she is one of those with the high level, expert-patient savvy and determination. One of those valued thinkers, and extra special for her loving heart. In short, she’s pretty darn fab’, (but seeing as she’s my friend perhaps I’m rather biased 😉 ).

She is fab’, though! 😉

Anyone who’s visited my blog before probably knows about my penchant for Tai Chi, and possibly even seen my post about my last tournament and what it means to me as a chronically ill patient. I tend to set my sights unreasonably high to see where I can get to, rather than set my sights lower and risk inadvertently capping my own potential before I’ve even tried. Well, Isy has done the same on a mega scale, and whatever the outcome is she will learn so much about what her body can be capable of, what treatments / recuperation techniques etc work for her body. And whether she marathons her way to the original goal, or whether the goal morphs into something different to accommodate new health info’, the experience will be a huge personal journey and deserves loud enthusiastic applause every step of the way. I for one shall continue to read the inspiring exploits and insights of my treasured friend.

Here she is, the one….the only…Isyyyyy Aweeeiiiggghhh….. (and Ari the cat 🙂 )…

Ta-daaaah!

This piccy is from Isy’s blog over at Living Anyway.

(Love ya, chick, x)