Anky..Spon…What?

Living with Ankylosing Spondylitis can be difficult but I manage one day at a time!

Chronically Christmas

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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…

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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”.

May each and everyone of you have a Merry Christmas and a Happy New Year with lots of days of pain free joy.
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16 comments on “Chronically Christmas

  1. paulettemotzko
    December 12, 2013

    God bless you Joyce. I was touched by your heartfelt and genuine article here. I am sure by you writing it you will help many people with a variety of disabilities and diseases.

    I have epilepsy and am doing the best I have ever done with Tegretol & Vimpant. I am sharing this on my site called Totally Inspired Mind: Where Positive Minds Congregate. The readership during a 30 day period is between twenty countries to 70 countries read it and there are 534 followers now.

    • joyce lameire
      December 12, 2013

      Thank you for reading my blog post Paulette, and for sharing it with your readers. I don’t think those of us with chronic diseases take care of ourselves like we should during holidays, I know I don’t, that’ sway this year I was doing things differently and wanted to share my thoughts and ramblings. May you have a happy holiday season full of good cheer!

      • paulettemotzko
        December 12, 2013

        You as well Joyce. What you wrote will help a lot of people.

        Paulette Motzko

  2. paulettemotzko
    December 12, 2013

    Reblogged this on Totally Inspired Mind… and commented:
    Everybody can enjoy this time of year, even if you have a disability or disease that zaps the life out of you. Joyce will give you practical, real-life advice on how to pace yourself so you don’t do too much and also to remember what this time of year is all about, regardless of what you believe in.
    Anyone can benefit from reading Joyce’s words. She will make you very THANKFUL for what you have rather than thinking about getting more stuff.

    Paulette Le Pore Motzko

  3. Sabrina Diane
    December 12, 2013

    Thanks for the reminder! I’m feeling it this year and needed this!

    • joyce lameire
      December 12, 2013

      Make and keep your intentions and remember this season is about you! Merry Christmas and happy New Year!

  4. Mary
    December 12, 2013

    These suggestions are so right on. I attended a large Holiday luncheon including a 60 mile round trip drive 2 days ago & I’ve been in bed ever since with pain & fatigue. While it was wonderful to see old work friends that I hadn’t seen in a long time, I was miserable as I kept a smile plastered on my face while fighting tears from the pain. Thanks Joyce for your words of wisdom!

    Sent from my iPhone

    >

    • joyce lameire
      December 12, 2013

      Ah Mary I’m sorry I didn’t get this blog post published earlier. We have to take care of ourselves first then worry about the festivities. I hope the rest of your holidays are easier, enjoyable, and filled with merry cheer! merry Christmas and Happy New Year.

  5. James Allen
    December 18, 2013

    Some much appreciated advice here Joyce, once again your writing has left me feeling happier and more confident.I’ve definitely noticed a sense of foreboding about the upcoming days over Christmas, much more than usual this year after having such a horrific year with AS (more pain than ever, with longer and more frequent flareups, and taken over 6 months off work). I can’t help but roll my eyes at the idea of the constant debate in my mind of how to describe how much pain I’m in in that particular moment to my family without wanting people to worry (which makes me more stressed), feel sad for me (which makes me more sad), not know what to say (no need to say anything, I just need you to understand why I just want to be quiet or alone or go for a sleep in my own bed rather than go to an uncomfortable restaurant or play cards or go out in the freezing cold because, although it seems such a minor thing, I know from experience it will slowly destroy my spine and I’ll be paying for it later). I can’t help roll my eyes at the thought of having to slip into conversation that right now, I have this throbbing ache in my hips, or the back of my neck has this stabbing pain, or I just generally feel exhausted and ill and a bit achey all over, because I know that my other strategy (not saying anything) always backfires in the long run. How do you say something like that, especially at Christmas, especially to your family?

    Well, you just do it. Like you say Joyce, it’s our holiday too. You’ve inspired me to just be honest, and to hell with it – I’ve got enough to worry about without adding more guilt and anxiety about managing other people’s expectations (am I getting better? Is the new treatment working? Are you going back to work soon?) and managing other people’s anxiety and depression. It sounds cavalier and cold at first, but the fact is that I am making my peace with having AS and chronic pain, I have come to accept it as part of my life without fear or expectation (or at least, I’m slowly getting there, thanks to practising Mindfulness) – ironically it’s actually other people who seem to have more difficulty in accepting AS to be what it is. My family needs to start accepting the fact that I have AS and it may never get better, which just means that I have to make adjustments in my life, accept pain, limit what I do each day to within certain boundaries, not do certain things I used to, and tell people how I feel . And maybe spend boxing day in the steam room/swimming pool instead of the usual games of scrabble.

    • joyce lameire
      December 18, 2013

      I’m glad you liked my post James, and I really hope it helps. So far my intention of enjoying this time of year is working, as I really don’t care what people think, say or do. I’m going to enjoy this holiday with or without a “health challenge”. Merry Christmas and lots of happy holiday memories for you this year!

  6. Ka'El
    December 22, 2013

    I have AS too, about to endure the delights of my first Humira shot. My new husband always visits family at Christmas, however I have been ill since mid October and I really don’t feel up to going. I’ve been off work, missed Fireworks displays, called off going to a concert with my husband and not even been able to hear him sing in his choir. Yet somehow his family seem to expect me to switch off ill health mode and suddenly be well enough to participate.

    My fear is that if I go and have an episode (nausea, fatigue, pain or one of many fun symptoms to delight and entertain) that it will be the thing that is remembered rather than the lovely Christmas they deserve. I hate people fussing over me as I don’t have AS for the attention it brings! I have it for all the wonderful financial benefits like discovering that you’re salary has been cut to statutory sick pay only, and the career progression – sideways and then plummeting into the abyss… anyway… I hate this stupid illness!

    Last year we went and I became ill from Christmas day onwards thanks to Sulfasalazine reaction; I was almost hospitalised and ended up hiding in my mother-in-laws spare room for four days. They wanted to admit me but as I was over 100 miles from my normal hospital and didn’t want my husband to have to keep travelling to visit me, so I toughed it out with water, a plastic bucket, fruit pastilles, pain meds and buccastem.

    So, do I selfishly go and potentially become the centre of attention or do I make my apologies?

    It’ll be our first Christmas as a married couple so it makes it even more difficult, but I don’t want to ruin it for them.

    • joyce lameire
      December 23, 2013

      Ka’El I’m sorry you are going through all of this pain and suffering especially during the holidays. You will be feeling a lot better after you start your Humira so think positive. As far as spending Christmas in misery, like I said this is your holiday as well and I hope your husband can understand or at least try to understand what you could possibly be going through. Your in-laws may not and may never understand but you cannot beat yourself up for their lack of compassion. If I were you, which I have been during many holidays, I would be staying home and send my well wishes. It does no good for you to be miserable, ill and depressed when everyone is asking “what’s wrong with you?” Staying in a room wishing to feel better just makes one more depressed, that is why I would opt to stay home and watch TV. I can actually say that this is my first year in over 7 years where I might enjoy a holiday so I fully understand what you are going through. I hope you can make the best decision for yourself, and not feel bad for it. I wish you a Merry Christmas with what will hopefully be a pain free year. Joyce :0)

      • Ka'El
        December 25, 2013

        Hello

        Thank for your response. We reached a compromise. Instead of him going yesterday evening, he went this morning at about 10am and he’s staying there the next couple of nights. We both opened a gift each, and it was fine.

        I had the Humira yesterday, and it was touch wood nowhere are bad as some people’s experiences. I injected into my vast belly which probably helped, and the nurse commended me on my technique! Felt whoosy immediately afterwards, had to go a for a minor food shop, dropped an item, and attempted to bend down when someone tapped me hard on the shoulder and I swear I saw stars from pain. I had an almighty meltdown from the pain. It was horrible as people just think you are a nutcase and should pull yourself together!

        My husband gave me a call a couple of times, just to say how people enjoyed their presents and lunch. My lunch was spread over about three sessions and was of all things cold tinned macaroni cheese (I know it sounds horrible, but I get cravings for absolute rubbish), and I’ve just remembered I have ice cream!

        Today, I have had the feeling of a migraine starting and so have been quiet until this evening, when of all things I found some music I hadn’t heard in a long time and had an impromptu karaoke session singing in Russian, French, Bulgarian and Bosnian. My movement has improved dramatically since yesterday – I may very well achieve my mini ambition of wearing my three inch heels again!

        Hope you’ve had a good Christmas!

      • joyce lameire
        January 1, 2014

        Ka’El I’m glad you could come to a compromise and even more elated that you had improved movement. Karaoke in 4 languages? You go girl! Hope you had a fantastic New Year!

  7. jillianne2u
    January 9, 2014

    I Love this blog so much! It is like theraphy. It has really helped me understand why I have so many weird things happening in my body. It is all part of AS. What a relief to know I am not the only one who sometimes sleeps 12-18 hours! (among other side effects of AS) And I am not the only one who would rather just stay home…and I can never plan to far ahead because I never know how I will be feeling. YOU ALL HAVE SAVED MY SANITY!!!!

    • joyce lameire
      January 9, 2014

      Thank you Jillian, if my blog post help just one person then it has been worth the trials and tribulations I have gone through with this uncontrollable disease. ((Hugs))

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