Weathering the Winter Holidays

The winter holidays are a special time... that is to say a special time of challenge for people who live with constant pain. The vast majority of religions and cultures have celebrations around this time of year, and we in the industrialized world live in a culture where between prevailing religions and consumer pressure there is truly no escaping the holiday season. No matter how you wrap it up, this is often a difficult time.

                               If the holidays make you want to howl, you're not alone!

Many with complex intractable pain conditions such as RSD/CRPS have, at some point in their years of illness, lost spouses or family members (some, even their entire families) who "couldn't deal with" the realities of sharing a life with a person in never ending pain. Holidays, supposedly a "family time", can bring those losses rushing to the fore; old griefs can feel devastatingly new, and new grief unbearably painful. Those who still have their families more or less intact may be under great pressure to take part in activities that will either trigger terrible pain, or are in fact impossible for them to do or to enjoy. This too can bring up grief over our many losses, and at a time we are *supposed to be happy*. So, we can not only feel guilty about the things that we cannot do but about our unhappy feelings as well ! Add this, the likelihood of cold and stormy weather (at least in the northern hemisphere), extra visitors, extra noise, changes in routine, possible difficulties in getting emergency care or sticking to preventive maintenance protocols, and for many, what's under the tree will be a great big gift pack o' pain flare.

What can we do to lessen the stresses of this season?

Well, it's a pity that I haven't yet completed Part 2 of Taming the Beast's Top 10 Alternative Therapies, since among other things, we'll be talking about re-framing... because that is a big part of what many of us need to do. To take a gentle step back and see this time in a slightly different light. Let's talk about that, and then look at some practical tips as well. Re-framing is all about changing our perspective so as to create a new way to live with a situation that we are finding challenging. It's not about denial, or being a Pollyanna, it's about finding a new way to see a situation that may be triggering increased stress and pain.So to start, let's break down some of the stressful aspects and see what ways changing our point of view can help defuse some seasonal stresses.

Family:    One of our greatest potential supports; one of the most terrible potential sources of stress.Let's start by re-defining family. Family, true family, is not determined by blood. Family is determined by love. Love is shown clearly through attention, kindness, patience, understanding, not through a shared last name, or by demands that you "should be" anyone other than who you are. Loving family understand your limitations, and want to help. They do not  add to your burdens with demands that you cannot meet. Look around you; who are your true family? Maybe your family is entirely chosen at this point, perhaps made of  friends old and new, maybe some have fur, feathers, or 4 legs. Maybe some are far away, perhaps people you have never met in the flesh, but only on the internet. Maybe some really are blood relatives. If there have been losses, what relationships have entered our lives to fill that void, and are we acknowledging the real family that has rallied around us in our times of trouble as well as our times of triumph? Remember; if you have even 1/2 a dozen kindred spirits in your entire life you are very, very lucky. Even one true friend is wealth beyond measure. Elevate and acknowledge those friendships as family if they really are. Celebrate them, and celebrate with them.

Whether we've suffered losses, or whether we are still involved in our family of origin or the families we've tried to create (through traditional means of marriage, childbirth etc. or more creative means), let's assess our families without the romanticized glow that is so often surrounding the concept at this time of year. Do our families support us in our journey, or have they been unable or unwilling to do so? Are there members of our blood and extended families who are true allies, others that are pretty much guaranteed to cause us pain with every interaction? Taking off the rose tinted glasses (though they may make things look loverly!) can help us plan ways to decrease stress. Talking honestly with those members of your family (blood or otherwise) who truly love you, soliciting aid in dealing with some of the challenges of the season, especially and including dealing with those troublesome family members, can be a great help. And the fact is, probably no one, not the tiniest child or the most determined Pollyanna has missed the unkind remarks, the lack of understanding. You shouldn't have to pretend with the people who love you. You don't need to make a big scene about it, but having honesty behind the scenes can be a huge relief.                     

So; do you truly feel that you need to give your precious and limited time and energy during this challenging season to that one particular in-law who will invariably denigrate and hurt you? These things are not engraved by supernatural forces on stone tablets! You do not have to have these interactions. Get creative; how about simply sending a blandly pleasant card and saying "No thank you" to that particular social event? If this person will judge you negatively in any case, why not let them do so from a distance? If you decide that an event that will include this nemesis is something you truly want to attend, are there allies who can help defuse any interactions you have to have? And most of all remember; this person is not in a position to judge you, and their hurtful words or implications reflect only the smallness of their spirits and their lack of loving vision. Don't let yourself get into any verbal exchange that may be hurtful, wish them a happy holiday and turn away to engage in other human (and more humane!) interactions with people who truly wish you well.

Having said all this, one final note about family. It's those rose coloured glasses again... definitely take them off. The best of families is not perfect. That blandly shiny perfect media family doesn't exist (and if they did, oh my, I wouldn't want them! I like my people real!). While making sure to honour your own limitations, remember those of your family. The holidays are full of stresses for everyone. Too much sugar, too much stimulation and not enough sleep can drive the sweetest child into a tantrum, and set the grown ups squabbling. Someone may get drunk, break a fancy glass, make a fool of themselves. "Uncle Henry" will probably fall asleep after the turkey, and snore the house down. The dog may barf on the carpet, or gas everyone half to death from eating too many of *someone's* brussels sprouts. People may not be at their best, partially because of that insidious pressure to be picture perfect. Lower your expectations, accept the human weakness that rear their pointy heads, and remember to enjoy the time you have together. It isn't a contest. It's just time together, and in the final analysis, if the love is there... that's as close to perfect as it comes.

Religion:   This is a time of year that has significant religious meaning for multiple cultures. That can be a source of deep comfort for many. But for others, it can be a source of angst, frustration, or simply stir up baaaad memories. How can we look at all this in a different light? Well, there's a few options here... one is an option many go for, and if religion is anything but a source of comfort, why not secularize this time as much as possible, for you, personally. Keep in mind that spirituality and religion are deeply personal choices; you won't be able to scour the folks around you of their religious expression, and let's face it... it wouldn't be a good thing if you could.

But if you are one of the many who have some connections that do not bring them peace, you can do this for yourself; get rid of anything, any expression that calls the religious aspect to mind. Say "Happy Holidays" if you respond to another's greeting... if you have religious ornaments in your home, left from other times in your life and they call up nothing but unhappy memories, tuck them away in a box. Maybe don't ditch them (unless you strongly feel that a purge would be healing), but put that box away for now, or forever if that's how it turns out. Keep the music you play just music you enjoy, and avoid the religious schmozzle if it makes you unhappy. I don't actually suggest trying to avoid the whole holiday, because frankly, unless you are a dedicated hermit living in a remote mountain cabin, it's probably fruitless. Just detoxify it if religion has been tied to abuse or unhappy times for you. You don't have to decorate your mantle with a manger, just because you have it; try pinecones, candles and... racoons... or duck billed platypi... or whatever makes you smile.

                           Victorian Water Fae of the Season? Hey, it works for me!

So celebrate, and make the holiday absolutely your own. You like the idea of a tree? So have one, but cover it with faeries, or cookie monsters (thanks, *non-local friend* for that idea!); decorate an umbrella with pretty lights to join in the ancient celebration of light beginning to return to the earth on the solstice (an idea all us folks living in a rainforest can really groove to!); feast and be merry, with pizza, peach pie and pistachio ice cream! Conversely, you could pretty up your home with sacred and secular symbols both; as many as you can possibly find... make your holiday really inclusive! For that matter, why not use this season as a time to learn about other people's ideas around this holiday? Pretend you're out in space, visiting an alien culture; look for opportunities to learn about all the rich and varied beliefs and practices being celebrated at this time of year. Maybe you'll just do some research and reading, maybe you'll be fortunate enough to get an invitation to a Buddhist dinner, a Wiccan or other pagan circle, a Hanuka celebration, a Ukrainian dance, an evening of Gregorian chants, a Kwanza party ... who knows? Celebrate diversity every chance you get! Here's a starter sheet for you!

Beautiful youngsters in the glow of the Kwanza candles.

If the consumerism of the season is getting you down (next topic!), find your own note in the sacred chord. It's a common enough theme from a Christian point of view, but I mention it here as well, because it might be just what some of us actually need; bring the religion back into the holiday. Either do it broad scale, as suggested above, or re-investigate your roots and enjoy the traditions and rituals of your past . Maybe time has healed old wounds enough that hearing the hymns of your childhood will give you pleasure, or seeing the Menorah lighted will fill you with a sense of calm content. One way or another, find a path to peace this season. This holiday won't be going away; might as well find the sacred or secular style that truly pleases you.

One last thought; what about the very natural frustration that some experience when they feel surrounded by a holiday that is ramming other people's religious views down their throat, as if those views were universal, as if their own traditions or personal, rational thoughts had no weight, no meaning? I know this is a hard one for many, and in a world where being in any minority is a constant source of unfairness and oppression, it's certainly understandable. But the reality is, feeling angst over another's "Merry Christmas" will not change any of these day to day crummy facts; though it may make your day just a little crummier.

Please don't think I am unaware of the unfairness of having so often to be the ones required to change; some of these situations involve a big basic societal imbalance that really should be righted (like the predominant religion being pushed on the public as if it is the *only* viewpoint.) However, you are a person in high level chronic pain. Right now it's not your job to be a freedom fighter for societal change, it's your job to deal with a central nervous system on high alert, and to live the best life you can within that confine. And yes, it's brutally unfair that our bodies can make us hurt so bad in response to emotions that are just and appropriate responses to unfair or challenging situations. But our focus here is on making life work within the restrictions we have. We want what's best for your health, your happiness, and maybe even the shared happiness of the world of humans with whom we share this lovely planet. So what if, no matter what our own or the other's religious affiliation, we all just decide here and now to take any holiday greeting for what it almost certainly is; another human being wishing you joy. ( Like I am doing now!

Consumer Culture:  This aspect of the holiday season, at least in the "developed" world is enough to turn any sane soul off the whole shooting match! The push to Buy More Stuff, the guilt tripping and false values of it all... yeeeeuch! I mean really... are you reeeeally going to be "happier with a Hoover"? I don't think so. It also adds a great deal of stress to families who are facing the financial challenges of long term disability in the household. Here's a few alternative concepts.  

1. Go gift free. Just decide to opt out. Not everyone can do this radical a manoeuvre, as family may not agree. But for singles, or if your family all really wants to give it a go, just "don't go there". There's no law that you have to spend a bunch of money you don't have or don't really want to spend, just because it's December... honest!

2. Call for crafting. Ask that everyone try to make gifts for each other. A photo, a painting, a sweater, a lego creation, a cookie... whatever it is, let there be a maximum spending allowance (fairly small) and let everyone get their creative spirits flowering. This can be a very fun exercise, as long as no one gets stressing on whether their gits will be "good enough"; make sure that everyone know that this is one case where it really is all about the thoughts that go into it.

3. Choose one "big" family gift. Take the monies that would have been spent on things that people possibly don't really need and put them into one family activity, such as a trip to the Science Centre or a movie, or a large but wished for item that everyone will enjoy (like a porch swing, a canoe, or a new VCR to watch movies together), or even more fun, do something like we did in our household last year; make something together. We have had many, many books still in boxes since our last move, and because of allergies they really need to go in bookcases with doors (bricks and boards aren't ok). So we got two old matching kitchen cabinets from a salvage operation (cheap cheap cheap!) and made them over. I did the design work, Terry did the carpentry, Naomi did the painting, Nick did the wood burning of the designs. They turned out beeeautiful, we did them together, and then we had the fun of opening up all those boxes of books! 

Sooo pretty! This is a present we get to open every day!

4. Play Secret Santas. Pick names out of a hat to choose the one family member you will arrange a gift for. Again, set a limit on monies to be spent and make the process of finding out what your recipient would really enjoy the biggest part of the game. Gifts are exchanged, there's the fun of secrets and giving, but the family finances stay within the realm of sanity. With any or all of these suggestions, also consider keeping stockings, if they are part of your tradition; with sweets and nuts and stories and little fun bits and bobs, they can be made to take the place of the whole conspicuous consumption overkill if your family is not ready for tooo radical a shift.

5. Cherish the low-cost or cost-free fun you can have together while family members have a few days' break from the workaday world. Play games, read stories, watch videos, do puzzles, dream dreams, walk in the park, watch the stars. Don't let your family feasts be all about the "perfect" display, the stress, the work of it; cook together for the fun of it! Get everybody making pancakes together, preparing special foods that you don't normally take time to prepare. Check out the internet or newspaper for listings of free holiday themed or secular events; there should be a good selection on any given day. If you don't normally take time for outings to museums, galleries, or musical events, now can be a great time. But don't forget, you don't have to leave home to have fun together!

6. Give gifts that are really needed. Donate to charity, rather than giving gifts. Encourage family participation in charitable events, volunteer at a soup kitchen, a shelter (animal or human), hand out hot coffee to the homeless; whatever you do, take time to interact with the people around you, share the love, take the platitudes of this time of year and make them sing! Your heart will thank you.

Social Pressures:  These can be overwhelming at this time of year! So many expectations that our bodies may just not be up to.  How to deal with these? First thing is, prioritize! You now have limited resources. Remember the "Spoon Theory"? You need to choose what's really important to you, and accept that you simply can't do it all. (And ask yourself, honestly, do you want to? We each have our own different levels of social stimulation that we're comfortable with; those of us in chronic pain may find that our baseline has changed.)

Don't feel obliged. You can graciously say "No, I won't be able to make it, but thank you so much for thinking of me." and it is not a social sin! If it's a family event that there's a lot of pressure to attend, what about a brief show at dessert time (have an ally or two who'll help you time and execute your "fashionably late" entrance... and "elegantly early" exit gracefully). Again we're back to that whole honesty with your allies thing. Your family and (real) friends need to know your limitations in order to honour them and help you get the help you need to do (or not do) what's best for you.

Gee, I'm sorry, I don't think I can make it! Heh, heh. But thanks for asking...                                  ( "a flagon of seasonal stimulation".... * er, no, thanks... ((shudder)) )

If you haven't been fully forthright about your condition with some of your loved ones, now may be the time. In fact, the best gift you can give yourself and the people who really care about you is clarity. How can they know how to help if you don't give them the info they need to do it? Please feel free to use my printable "What is RSD/CRPS" sheet, or anything else off the site that might help with educating your kith and kin. 

I really do urge you to do this... even with the small children in your life. They sense/know far more than we give them credit for, and things felt but unexplained can be very confusing for them. Just use simple terms and make it fairly short. They'll ask questions if they need to, and you can remind them as necessary. When I was still unilateral, I used to explain to the children in my life that I had a "hugging side" and a "non-hugging side" because the one side of me was hurt. They did their very best to be careful, and I still got to enjoy some sweet hugs from the children I loved. My dear adopted nephew, who is a twisty turny fiddler of a fellow, and a compulsive chatterer, learned to avoid repetitive motions (like finger tapping) and to turn down the (noise level) volume (if not the quantity volume!) on the chatting when reminded without any hurt feelings or suffering; he really did not want to hurt me, and learning to be compassionate, empathetic, and self-aware in this context was helpful to him in other parts of his life. You aren't being selfish to explain your needs; quite the contrary!

 As far as the adults go, let's face it. If you aren't expressing your needs and limitations, no one can meet them. If you are, and only a percentage of the people in your life care enough to make the effort, it's better to know who really cares and have relief in those relationships. Truly. (It's that rose coloured glasses thing again!) Then with the people you are closest to, your needs are met or attempts are made, and with the rest, well, you can take or leave those relationships as you choose, but you know where you stand. With those who know and care about your limitations, you won't have to "put on a happy face" when you're hurting, which can be a real relief. You don't need to be a party-pooper or anything... (though you may need to poop out of the party early), but you can be honest; "Let's play cards instead of dominoes... the clicking of the dominoes can be a pain trigger for me". No one who loves you will mind one whit! I'll be putting more tips and tricks for surviving social situations in the last section of this post.

 Abilities and Disabilities :
With all these social demands,it may feel like you are constantly being forced to point out your disabilities. Such is life with invisible, or only partially visible disabilities! The important thing here is to keep straight what you can and cannot do, and express these clearly to the people who matter. Also, as a society, we have beliefs that are now policy in most businesses and laws in most countries about meeting the needs of the disabled. You may prefer to "pass" much of the time, but now is the time to pull out that "card" and get the extra help.

(A note on "passing"; this may or may not be conscious, it may be just an attempt to do the best that you can, but it may also be a bad idea. Unless you enter remission, you may be living with this condition for a very long time; hiding it can lead to misunderstanding, unmet needs, extra pain and deterioration of your condition, and hurt feelings at the least. It won't make it go away, and it can make you feel and become much more isolated than being truthful about your condition with your friends, family, and co-workers. I understand that you may be justifiably frightened of losses if people know the challenges you face, but those losses may occur in either case, and I've found that they are actually often less likely to occur if you place your trust in those around you, provide some educational materials and ask for their help when it's appropriate.)

Sometimes you just have to fly your colours!
( * If you like this cool image as much as I do, see bottom of the article for info.)

 If your mobility is impaired, even if you only need aids part of the time, get to your doctor and ask for help to get a disabled parking ticket if you haven't yet. Sure, if it's a good day or week (or wonder of wonders, year) and you can park that little bit farther away, then great! Do so, but on those days that the extra steps will make you pay and pay, use the card, take the spot and don't listen to any nonsense from anyone who harasses you because you aren't using aids that day; you have a right to this help, and your doctor wouldn't back you up if you didn't. Take elevators, ask for use of the loaner wheelchairs if you don't have one or if you've left it at home, ask staff, friends, or family for extra help in reaching things you'd like to see. Like I've said, helping the disabled is mandated in businesses and in our society, and right now is the time to ask that your rights be honoured.

An important concept, especially right now: much as we'd rather, do not forget your limitations right now. Don't let yourself think..."oh, everyone else is playing in the snow, they'll be disappointed if I don't go out too...", instead, remind yourself how much more disappointed they will be to have you flat out and missing so much more if you push your limits. I know there are so many things you want to do, and if this change in your life is new, it may be incredibly hard to know exactly where your limits are... actually it's often hard for us old timers too, because of the very changeable nature of RSD/CRPS and other pain conditions. But seriously, do your best not to over estimate what you can and/or "should" do right now. It will only lead to more unhappiness all around. If your kids are playing in the snow, you can watch out the window and cheer them on; what they need is to know that you are interested, that you care. They don't need you to get your limbs cold and blue; really and truly, they don't.

To get the best shot at enjoying the holiday activities with the least brutal price, consider extra use of any and all of your tricks or tools to get you through this season. Use your wheelchair or canes prophylactically, and definitely medicate prophylactically! This is not the time to either "wait and see" if you need extra help, or to try to "tough it out". I know that most of us do all we can to keep our pain meds usage low, and it is the right thing to do, but if friends are coming over, or you're heading out on an excursion, look through your meds and alternatives; your homeopathics, herbs, supplements etc. and decide which might help if you got loaded up with them in advance. Take extra time for those self care preventative maintenance protocols; a warm bath? some hypnotherapy or creative visualization? Yes! Do them as well as meds and alternatives! The time you take in advance will buy you time with the people you love.

As will taking breaks. Ask a friend, family member, or caregiver to help you by occasionally taking you aside and suggesting a break; it's easy to get caught up in the fun but even a few moments in a quiet room (your own if you're at home, the bathroom, porch, balcony, or maybe your host's master bedroom if you've checked it out with them) to stretch, shift position, perhaps lie down, to take some deep breaths, do some quick relaxation protocols, check in on your meds status, take a little extra magnesium to prevent muscle spasms as the event continues... just slow down and decrease the flow of stimulation. Any or all of these can buy you extra time before you "turn into a pumpkin", as I like to call it.

                              " But remember, when the clock strikes twelve...." 

And when that precious time is up, on any given occasion, remember; you don't have to stay until the last dog has its evening howl! If you are at home, you can say goodnight to a few of your closer friends and guests in private, or make a little group goodbye if that's comfortable, and slip off to your room, a waiting bath, perhaps some earplugs. If you're out, you can take your hosts aside, let them know that your time is up, and that due to your condition you need to go, but you've had a really lovely time. It may feel embarrassing to you to bring it up, but again, it helps your relationships rather than harms them... unless these people are not good friends for you. Decent people will be compassionate given a chance. In this case, by referencing your condition, you let them know that you are not leaving because you aren't having fun, you're leaving because that's all your body can take, and you're doing so graciously. Your social conscience is clear.

Tips and Tricks for Surviving the Season:  Here's some random bits and bobs to help you get through the holidays ~

  • Send e-cards this year! Much less work for painful upper bodies, much less cost as well. There are many options, several of which are free, like 123greetings, and smilebox, with which you can add your own photos. Then you've just got your older or less technologically advanced friends to do the paper version with. (If you can't use the internet yourself, don't hesitate to ask one of the youngsters in your life to help with this fun task! You'll learn from them and you'll both enjoy browsing through and choosing the images together!)
  • Even if you have always done your own baking, especially at the holidays, this is a time to call in every option to cut down on things that will get your pain levels rising. There are good bakeries in most towns and cities, nowadays often even organic options; your friends and family will enjoy their offerings and having you more available and in less pain is more than icing on the cake! The same can go for other goods; a few deli editions to a meal can mean significantly less prep work and right now, that could really be worth it.
  • Another option for the cooking is that this is a great time to share recipes (and cooking duties!) with family or friends. If you are famous for a particular dish that everyone is hoping will be on the menu, there's almost certainly someone who would be honoured to be sous-chef, and cooking together can be wonderful fun.
  • Don't forget pot luck! It's a grand old tradition; it's not rude to ask, people like to be a part of making a meal come together. I do advise giving specific requests to organize it well, so you don't end up facing eight platters of candied yams!
  • Take advantage of all of the many options for internet shopping. From the big retailers like Amazon (no longer just books, but practically everything, and available in many countries) to purveyors of a vast array of wonderful hand made goods, like Etsy, you can find *virtually* (teehee!) anything you or anyone else might want online nowadays, often with optional gift-wrapping. If you're doing holiday shopping why not take the weather, the parking, and much of the pain out of the equation?
  • If you are on opiates, please remember not to imbibe in alcoholic spirits just because they are being offered (sometimes rather pushilly!); almost 100% of accidental overdoses involve alcohol, which potentiates opiode medications and greatly increases the risk of harm. Many of the standard non opiate medications prescribed for RSD/CRPS and other pain conditions should also not be taken with alcohol. Check with your doctor or pharmacist, and if in doubt, just say no, thank you!
  • Add some earplugs to your purse or pocket; these can make a big difference in tolerating a movie, a crowded bar or restaurant, etc. If you do find that noise, including music, is a pain trigger, that can be a real challenge. The earplugs can help in public situations, but what about at home? Choosing music with less percussion can help, as can keeping the volume down. Having music be off some of the time, and not on when there's too much competing noise or conversation is a good idea. Having sub-titles show when you watch a movie can mean you can keep the volume lower and still understand the conversations; remember, getting help with disability needs is not "being a bother", it's a human right.
  • Speaking of help, get help in wrapping or unwrapping presents, setting the table, you name it. If you've got company, look for unoccupied children. You may find that  your own or another's little ones could be your willing helpers if only you will ask; it can make your life so much easier and give a little (or big) elf a chance to be an important helper. Letting someone who loves you help can be a gift, too.
  • Finger-less gloves can be an indoor-outdoor lifesaver if you have pain in your hands or wrists. That extra bit of warmth and cushioning can be a huge comfort and pain deterrent; and they can look rather elegant!
  • Keep a little pack of (preferably organic) salted nuts or cheese and a mandarin orange available. The protein can help with neurotransmission so you have a chance at finding that 7-letter word, the salt can help with dysautonomia symptoms such as nausea and dizziness that can plague so many of us, and the mandarin orange has vitamin C and bioflavinoids, both of which are RSD/CRPS pain flare preventatives, and the sweetness can gently elevate bloodsugar to keep you going. Organic is important because pesticides are neurotoxic... no good for us folk! (No good for anyone!)
  • Even if you don't normally use a timer for medication dosing, this could be a great time to start. Using a timer can set an unnecessary stress aside; missing a dose right now would not be a good thing. Also, when that timer goes, you can check in with your body; do you need to take a muscle relaxant, a homeopathic, a snack, or a few minutes break? A timer can be a great preventative maintenance tool any time, but especially during extra busy and potentially stressful times.
  • If you've never tried homeopathic remedies before, this might be a really good time. There's no risk of interaction with your medications, very little risk of anything but a little bit of help (if you are one of the very rare people who has an adverse reaction, it will likely be very mild and easily and quickly stopped by sipping or smelling coffee or mint tea.) The two starters I'd recommend to almost anyone would be Arnica Montana and Magnesia Phosphorica, and Boiron is a fine, reliable source. Arnica is good for any kind of pain, especially the bruised feeling many get from bumping, vibration, or travel. Magnesia Phos is the ultimate non-pharmaceutical muscle relaxant, and also helps with pain that is increased by cold, and with facial neuralgia. I suggest 30ch pellets. Just take 3-5 pellets, let them slowly melt in your mouth and see if homeopathics are a new friend indeed!
  • If this is an extra rough year and there is no going out, make sure to get some family photos nonetheless. Even if you are in hospital or confined to bed, get someone to help you with at least some token glad rags; a bit of jewellery, a new hairdo (or at least freshly washed and brushed hair), a tie, or an extra nice shirt and get some photos of you, and you with your loved ones. Believe it or not, you will want to remember these times, even if they've been rough, and you'll want to remember that you were able to have some special moments even so; these pictures will one day make you smile.
  • If you are going to an event whose hosts are not aware of your struggles, now may be the time. Consider sending a note along with your RVSP (or, if they haven't asked for one, a quick email) along these lines: "Dear Host. I am so pleased to be invited to your party. I will be there *with bells on*, and, just to let you know, I will probably be attending in my wheelchair. You may not be aware that I suffer from RSD/CRPS. I've included an info sheet (feel free to use this one). I'm letting you know so that you understand that I may need to leave early, take short breaks in a quiet room if you can make one available for me, or have other special needs. I'm really looking forward to your evening. Thank you so much!" Trust me, no one will take this amiss. It means that your hosts can help you out, and if they are remotely decent people, they will want to.
  • I mentioned it earlier but it's worth repeating. Now is the time to use every aid you have. Even if you often manage without your wheelchair, a holiday party may be just the time to nestle in. Being off your feet with a light blanket over your knees and a small hot water bottle (which your care-givers or hosts can refill as needed) can mean hours more time that you'll be fit to partake in the day or evening's activities. Also, being in the chair is a good reminder for those who are apt to forget that you've got limitations. I know it can be a hard shift if it's a new thing for you, but this chariot can mean that you get to dance the light fantastic, instead of turning into a pumpkin before the clock strikes 12.
  • Put your thinking cap on. I'm stopping this long, long post (when will I ever learn??), but there's plenty you can do to make this time work better if you stop and take the time to plan. The basics are: don't be a crazy pants (remember your limitations), communicate (so others know and can help), accept that things will be a little different than you might ideally like, but know that you can have a wonderful time this holiday despite all the challenges. I am wishing for every blessing --- joy, peace, contentment, and low pain days for you throughout these weeks and in the coming year, my friends. Happy holidays!

* Regarding the wonderful disabled wizard design above, this is the brainchild of a brilliant pal o mine, designer extraordinaire Marie Page, and will be available in 2014 on T-shirts, mugs, etc. on the wonderful website in progress, RSD/CRPS Art &Spirit (this is a link to the associated fb page)... which will highlight the artistic works, spiritual writings &other creative ventures of Beast Tamers from around the world... I'll be keeping you posted!

Author: Lili Wilde
Date Posted: 2013-12-14   Date Last Edited: 2013-12-15 01:14:54


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