With Christmas upon us I started thinking about how we all cope. Like most of the EM community, I sort of struggle through the rest of the year by isolating myself from all social activities, heavy medication, trying to minimise triggers and riding the emotional rollercoaster. This year, even the routine 'must do' sending of Christmas cards has become an absolute mountain to climb. I was going to practice what I preach and 'SAY NO' , but then I found a great site that sends the most amazing interactive cards - not too pricey either ;). Present buying - well, thats made easier thanks to my best friend - my computer lol!. Getting the presents ready wrapped,labelled and delivered is a godsend. But what about the Christmas and New Year festivities ????. Holidays are always a moot point for chronic pain sufferers . On the one hand they can be a very lonely, stressful and painful time; on the other they can be incredibly uplifting and enjoyable- despite our pain. For me ,the key has been learning to set my limits (including budget, saying NO), organisation ( buying online, using delivery options, having enough medication in my drawer) , acceptance (not feeling a failure because I cant wear shoes or go party, or feeling I need to constantly explain to family or friends why i have to stay in bed) and support ( who, what ,where is accessible over holidays).Note: living with EM will be offering support as normal all over festive period. Please pop in if you need a chat and want to share a virtual drink with your moderator team :-).
We are interested to hear :
1) How are you going to be spending Christmas 2014?
2) What are your tips for coping with the forthcoming festivities?
Here are some great links on 'how to survive Christmas and the ensuing holiday period'
Geeez, a bloke can't even get good and drunk 'cause the alchohol makes my feet burn badly - NO festivities here .... just another Lonely sad time of the year for me - but hey, at least I won't have to listen to some boring stories from drunks :-)
A very good topic, Mads, and very timely indeed. This Christmas will be the first where I can avoid triggers just as I want to because I will not participate in any festivities outside my chore family. My wife, son and me are going to celebrate Chrismas Eve together and thats it. On Christmas Day they travel to her parents. My side of the family is a bit difficult so I'm quite glad it's only going to be phone calls with them. My further Christmas activities will amount to listening to a recording of Bach's Christmas Oratory, if I feel like it.
You mention the musts, presents and christmas cards. I confess that this year, we mostly did all that, too. Plus, we got bullied into thinking up and suggesting very many presents for ourselves by my side of the family. (This is sort of a family tradition and also applies to my and my son's birthday, both in November.) I definitely plan to reduce all of this - we really do have enough other things to think about and cope with. A good maxime seems to be that I will not uphold any tradition that contributes to stress and/or pain for myself, nor will I accept attempts by others to enforce anything of the kind on me.
I'm also curious about those links and definitely know where to look if I feel I need to.
I have actually come to love this time of year more than ever before! I am the exception to the rule for chronic pain sufferers. This all stems from my finally actually being home for the holidays. Be fore I became ill I was a flight Attendant for all of my Adult life so I was never home . Sometimes I would get lucky and be in town for the day but it was always short lived. My extended family (Mom ,Dad , Siblings ) They all lived out of state so I never got to see them over the holidays. I could fly for free but only if there was an unfilled seat and this never happens during the holidays. For the past 20 years I never even bothered with a tree half the time.
I love it more now because I am actually home with my husband for the holidays instead of alone on the road or should I say sky. I can still see my extended family via skype and this has always been instead of being forced to see them on my computer because of my illness. Normally I always feel let down that I have to see them on the computer because my illness prevents travel but this time of year I don't feel bad about it because this is normal!
I am confined to my home because of this and it is essentially my prison. Day in Day out my view never changes but this time of year with much help from my hubby it is decorated and beautiful and different from my normal view from prison. I can't go to Christmas parties and the like but I can bring the party to me . Making sure the house is extra cold because of the extra bodies. Not a big group but it doesn't take much. I hate advertising but I must admit Swiss colony delivers the yummiest and all you could need for a party all without cooking and clean up with paper plates. I admit they are a bit over priced but for the convenience and taste I find it worth it.
This is the first year I was done with my Christmas shopping by DEC 1 thanks to Amazon smile ...no need to go to any stores. As Mads pointed out the ease of the virtual cards. With computers now almost all tasks can be done online.
I can understand how this time of year can be harder on most here but there are also things to be grateful for if you look hard enough. I do hope everyone is able to find one thing no matter how small to be thankful for through the murky waters of chronic illness over the holidays. Simply finding something you are thankful for helps with handling the many other extra problems associated with this time of year.
I am happy to say that nothing much Christmassy is going to happen here. The baby is too young to know the difference but will enjoy the lights on a tiny artificial tree - all those years of 8 - 10 foot trees dripping with lights and decorations are firmly in the past. Cards with photos of grandchildren for a favoured few, emails for the rest. All shopping done on line. No visitors for Christmas Day. Again, until I began EM 5 Christmases ago but purely coincidentally, after the older older generation passed on we no longer had the entire family coming to ours and the relief of knowing it is just me, my daughter and the baby and no extra tidying up or cleaning to be done is liberating. Even my son and family will be away with the in-laws.
One thing I will enjoy is Christmas music, our local church coming round carol singing, Carols from Kings College on the radio, Elvis sings Christmas;)
I will be checking in for a virtual Christmas drink mads and Frostbite.
But if you Mod Gals are going to be there then count me in for sure - just let me know where and when as long as I don't have to wear Top Hat & Tails and as long as I can have a Virtual Guinness I'll be there .... :-)
mads said:
Well Frostbite, you know you can always come to our LWE forum festivities and enjoy a virtual drink with us mod gals ;)
I’m glad you are able to have such a relaxed low stress Christmas Nel. This will help keep any extra flaring down I should think.
Fristbite, LWE…Living with Erythromelalgia group would love to have you join us in a virtual drink but I must insist you being enough Guinness for us all and it’s all top hat and tails for the gentleman to get in the door!
Ha ha! This will be one crazy party! My mind can’t help but picture us all really together. Frostbite in his top hat and tails you Nel in not much at all. In my mind I see us in a big mansion and it’s kind of a Nancy Drew or Scooby-Doo mystery going on
I'm OK with the Top Hat & Tails - I will be wearing my Footy Shorts and T-Shirt underneath and wearing the good old Aussie Thongs on my feet (Flip-Flops - Not the thongs you were thinking of ) .... I haven't been able to wear any shoes for several years now - so thongs it is .... for the well dressed aussie bloke ... :-)
I thought LWE might have been Luscious Women Extrordinaire or something of that nature .... Hmmmmmm ... :-)
Cheers to ALL
Greg - (frostbite)
Alina Delp said:
Ha ha! This will be one crazy party! My mind can't help but picture us all really together. Frostbite in his top hat and tails you Nel in not much at all. In my mind I see us in a big mansion and it's kind of a Nancy Drew or Scooby-Doo mystery going on :)
Now now guys, party hasnt even started and you are becoming disorderly!!!!. LWE = living with erythromelalgia (as Alina said) , but could also mean LETS WACK ERYTHRO :-). I have tried to send few virtual cards and get a few pressies via internet but thats it for my Christmas.Truthfully, I couldnt care less about Christmas. Sad, as I use to love it and really go to town. Despite being in bed, I shall pull a cracker and put a silly hat on with my mother who is going to be staying ,caring for me over holidays.
Regarding our LWE virtual party - dont think many of us will be dressed for dinner lol!
Frostbite- we got you a barrel of Guinness!. Did I ever tell you i visited their brewery in Ireland years back. Tasting area was top of the building in this glass room that gave you brilliant views of Dublin - awesome! All the tasting your heart desired too.
Im going to start a new post now called - Virtual Christmas party' so we can all place our drink order. Lets all try to make this holiday fun for each other. We cant do much, but at least we can still try to laugh :-)
I will bring the Scooby Snacks for us all - Mmmm - Mmm !!! Cheers - frosty ...
frostbite said:
Hi Alina -
I'm OK with the Top Hat & Tails - I will be wearing my Footy Shorts and T-Shirt underneath and wearing the good old Aussie Thongs on my feet (Flip-Flops - Not the thongs you were thinking of ) .... I haven't been able to wear any shoes for several years now - so thongs it is .... for the well dressed aussie bloke ... :-)
I thought LWE might have been Luscious Women Extrordinaire or something of that nature .... Hmmmmmm ... :-)
Cheers to ALL
Greg - (frostbite)
Alina Delp said:
Ha ha! This will be one crazy party! My mind can't help but picture us all really together. Frostbite in his top hat and tails you Nel in not much at all. In my mind I see us in a big mansion and it's kind of a Nancy Drew or Scooby-Doo mystery going on :)
Now you mention it, I also visited the Guiness brewery around ten years ago and the tasting area was definitely something to remember. In the souvenir area, I was fascinated with a cap which looked very Irish to me and my company got me to buy it. I grew to like it though I don't wear it often and it still reminds me of Ireland.
(Germans often tend to have quite romantic views of Ireland. I can't explain it, but their folk music and the landscape somehow do it for me. Also, they have this television channel in Irish gaelic where everything sounds nice and musical, regardless of the topic. Plus, you don't stand out as much as a redhead. )
Well, where did that come from? It seams the party has started, because I don't usually post this much off-topic ;-)
Greetings,
Ben
mads said:
Now now guys, party hasnt even started and you are becoming disorderly!!!!. LWE = living with erythromelalgia (as Alina said) , but could also mean LETS WACK ERYTHRO :-). I have tried to send few virtual cards and get a few pressies via internet but thats it for my Christmas.Truthfully, I couldnt care less about Christmas. Sad, as I use to love it and really go to town. Despite being in bed, I shall pull a cracker and put a silly hat on with my mother who is going to be staying ,caring for me over holidays.
Regarding our LWE virtual party - dont think many of us will be dressed for dinner lol!
Frostbite- we got you a barrel of Guinness!. Did I ever tell you i visited their brewery in Ireland years back. Tasting area was top of the building in this glass room that gave you brilliant views of Dublin - awesome! All the tasting your heart desired too.
Im going to start a new post now called - Virtual Christmas party' so we can all place our drink order. Lets all try to make this holiday fun for each other. We cant do much, but at least we can still try to laugh :-)
Oh I love Guinness. Always had a few bottles in the house. Many years ago my then small son, required to draw a picture of any room in his house, chose to draw the kitchen and because he enjoyed drawing Guiness bottles he rather embarrassed me by drawing dozens of them on every shelf and work surface. He was a good little artist and the picture had pride of place on the wall of the classroom for everyone to see:)
I am a Christmas sentimentalist and have always been a "do-er" my whole life-- my family expects me to cook, host etc. Its been very hard and exhausting to muddle through the holidays the last couple years. I have had AS for 10 years and probably for 5-6 years lower level symptoms of EM, last two years and especially this year the EM has been progressing, becoming aggressive, disruptive, and a very painful force effecting my life awake and when trying to sleep. I was just diagnosed officially yesterday.
One of my strategies is to ask for help. As a "do-er" it was difficult for me to admit I needed help with things that once I could handle on my own. Big meals became pot-lucks, big shopping became pollyannas, getting the house decorated is now a "family project"--decorating day. Internet shopping is a big help, anything that can be done by computer! One of the best helpers is technology. I still host parties but I delegate and plan more than I actually do myself. I am the champion list writer and hand out lists to my loved ones.
It maybe petty but the one thing I am most missing is wearing a dress with nice shoes; I love getting dressed up during the holidays. I can go to a party and not drink, but black slacks and sensible shoes...ugh. I am just on the cusp of acceptance with this one--and not happy about it.
I can relate K-Ren. I have always been a doer too. I have come to an acceptance and am better at asking for help. My husband still gets frustrated when he sees me struggling or hears me making I'm in pain noises and says why don't you ask for help!! I sometimes feel that all I do is ask for help anymore so I try herder than I should at times so I don't have to ask for the hundredth time that day.
Oh the clothes and the shoes. I to miss this the most. I can't go to any parties anymore but I would just like to look nice once and a while. I have always been a shoe lover and after about 5 years of this I just retired my beautiful shoes to boxes in the basement. I haven't given up forever even in it takes many more years I just have to hang on to them. I have found a few ...I can't believe I am saying this but cute flat shoes I can wear. I used to never wear anything under 4 inches. I found some cute white flip flops with bows and rhinestones on them, As well as a few more pretty colors or flat sandals with some bling to them. I never would of chosen these in the past but I have learned to appreciate them and just having these on instead of regular plain flip flops makes me feel a tiny bit better.
I am glad you are getting better at asking for help and that you have loved ones that are willing to do so.
