Living with Ankylosing Spondylitis can be difficult but I manage one day at a time!
Hanukkah, Winter Solstice, Christmas Day, Kwanzaa they are coming our way, so what do we do when we have a chronic disease?
December has always been my favorite month of the year for numerous reasons. The excitement of finding the right gift for each family member; planning trips to homes far away, or if staying planning my Christmas dinner. So many things to do and get ready for not to mention getting all those lights and ornaments up on that bare tree. But those days are long gone and the excitement I so enjoyed has left the building! Living with a chronic disease limits my ability to enjoy these things, yes I can still be around the festivities but it’s not the same, not anymore.
For me the last four months has revolved around getting healthy enough so that I can leave my house. Daily physical therapy appointments; pool therapy; blood tests to make sure my blood doesn’t cause more clots; working on not sleeping 12-18 hours a day; and, working on making it to work two days a week. This week I finally got the tree up and decked out with all my favorite ornaments and lights and then spent the next two days getting over the stress that this act placed on my body.
I could ask my body to give me a break this month, but I don’t think it will listen to me, it has turned a deaf ear unless….. Unless I only do one thing a day for maybe two hours max will it let me do something on the next day. This was the only compromise we could reach after hours of negotiations.
Does the thought of another holiday season fill you with joyful anticipation or fill you with overwhelming fear and dread?
For people with chronic diseases, who are already trying to cope with daily life’s trials and tribulations, adding additional stresses of the holidays can trigger flare-ups, that could take months to get over. Unfortunately we cannot avoid the stress this time of year brings about but I did find some way for us to look at these holidays differently. We can reduce our stress levels dramatically by giving ourselves a G.I.F.T.
While looking for ways to decrease stress levels during holidays I came across a fantastic article and though all of us should practice this. If it works for you I want to know so make sure you leave me a comment.
Give yourself the G.I.F.T. of a stress-free holiday by Karen Lee Richards, ChronicPainConnection Expert.
How to deal with family during the holidays….
Your having dinner at a families home, you are tired and have no energy to make a dish. You run to the store and pick up something in the deli sections and your on your way. Aunt Lucy looks at you as you lay your last minute find down on the food table and says.. “Really couldn’t even find time to make something could ya?” Well if Aunt Lucy is so blind to the fact that you can’t be like her and sit around and cook all day then to hell with her! We have to think of our limitations right? Should I make my famous sweet potato pie or save my energy to sit and yack with Aunt Lucy all night? If I sit and spend the day cooking I’m sure not going to want to go and chit chat with a bunch of relatives. So I have chosen to choose my battles wisely.
When the family starts asking questions “How are you feeling hun?” Remember to reply “I’m doing better every day, thank you for asking.” Because we all know they are just asking to be nice and really don’t want to know. Or do they?
When the family want’s to go out for a walk, go sightsee, look at Christmas lights and you are getting tired from sitting around chit chatting, bow out gracefully and tell them you are going to rest for a bit. If they get it fine, if not don’t worry about it….. Remember this is YOUR holiday too!
Holidays are a time for giving right?
By this time every year my shopping is done, but not this year. This year there is not enough money coming in to have the luxury of buying gifts early. I spend the whole year thinking about what I’m going to make or buy for each person. But what can you do when there is no money? Many of us with chronic disease do not work and therefore don’t have the money to buy elaborate gifts that we may have been accustomed to in the past. What happen to the days when a card or home made gift would suffice? These days everyone want’s an electronic device, new toy for their vehicle or just a new vehicle. I would normally knit or crochet gloves, hats and socks but with all the pain I have been in this hasn’t been an option. Thank the universe for gift-cards right? Yes that is what the family is getting this year, love or leave it. I wish I could go back in time to where the word “Giving” meant giving something from the heart, not what you can buy which has no meaning.
I feel for the families who buy ALL their relatives gifts, and believe me there are more than a few. But if your in one of these families and you don’t have money remember GIVING isn’t about how much you spend. If you have an Aunt Lucy who WILL have to have a gift, get a jar fill it with dawn soap and sugar until it’s thick put a lid on it and a label that states “Sugar Hand Scrub” made with love from…
Holidays should be about YOU!
Don’t forget that stressing yourself out trying to get the house ready, make the food and buy the gift will only end in disaster. Take time for yourself during this time. Go back to that book you were reading, catch up on that sleep, finish that movie and then when you feel up to it do something else. By the time you know it everything will be done and you can sit back and enjoy. Also make sure you learn the word “DELEGATE”. Have that hubby/wife make some dishes, get the groceries, clean the floor. Have those kids wrap the presents, bag them up or take the cards to the mailbox. Everything doesn’t have to be done by you! Take the time to be kind to your body and it will be kind in return.
Here are some things to think about during the holidays…
Adjust your perspective: Set your intention daily to be positive and hopeful.
Identify and understand your personal stressors.
When you feel yourself getting stressed, stop and take deep breaths.
Don’t pin your happiness on the success of your holidays. Your happiness should be bigger than just the holidays. Be thankful for the family that you do have, the opportunities you have been given, and the future you can look forward to. Put things into perspective.
Don’t force yourself to feel happy, buoyant and carefree when you don’t. It will only backfire and cause more stress. You are entitled to dislike aspects of the holiday season without stressing over them. Avoid becoming a Scrooge and ruin other people’s fun.
Acknowledging feelings doesn’t mean complaining or whining. These simply reinforce stressful feelings. Rather than complaining, acknowledge that some things are not enjoyable and set limits on being part of them, without beating yourself up over it.
Let go of your need to control everything. Maybe you’re a perfectionist and only trust yourself to get things done the way you want them. In a perfect world, you could control everything. However, real life is sticky, and it involves trusting other people.
You could choose many negative aspects to attempt to flip to find what there is worth feeling good about. Make the holidays about recognizing your achievements instead of faults. Ask yourself:
What do you enjoy about your life this year?
What can you learn from it?
What do you enjoy most or most excited about the holiday season?
Are you planning something this holiday season that you feel good about?
How are you giving to others less fortunate?
Holidays can be one of the roughest times of the year for some of us with chronic diseases, but ask yourself “Does this holiday have to be bad?” I am setting an intention of having a wonderful holiday with family and going to practice what I have just preached. I challenge all of you to do the same because we deserve a holiday from our “Health Challenges”.
A detemined Spondy out to raise awareness for Ankylosing Spondylitis!
Learning to deal with Ankylosing Spondylitis (AS).
My new life with Ankylosing Spondylitis.
my leap from chronic pain darkness
I'm a journalist and author of 'Mostly Cloudy, With Some Bright Spells'. I live beside the seaside with some hideous illnesses (Crohn's disease, ulcerative colitis, ankylosing spondylitis, fibromyalgia and scoliosis) along with my French husband and our stupid cat. Despite being in pain 24/7 I'm a relatively cheerful, mentalistic sort.
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