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“When the bloom of the Jacaranda Tree is here…

02 Dec 13
Megan
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Christmas Time is Near!”

FromΒ Christmas Where the Gum Trees Grow, An Australian Christmas Carol

Photo (c) Megan S, December 2013

Photo (c) Megan S, December 2013

Christmas is usually a time of excitement for me. By now I’ve usually set up our Christmas tree and sorted out what I want to get everyone for Christmas (even if I haven’t bought them all), and I’m usually looking forward to all the celebrations; but this year is different.

I haven’t set up our Christmas tree yet, I have struggled to get the energy to even think about most of my Christmas presents, and I’m not really excited and looking forward to the upcoming celebrations (at least not in the same way as I usually am). Instead I’m still focussed on just trying to pace myself and get a better grip of this illness. Having said that, I am still looking forward to some parts of Christmas.

To me the most important parts of Christmas are the catching up with family and friends and celebrating together. This has already started for us this year. My sister is leaving for overseas this weekend, so I did an early Christmas brunch with her, my brother, mum and step dad. E and I also caught up with a group of our friends yesterday afternoon which was labelled a “Christmas Catch Up”. Both of these events were great as they were fairly small groups and just involved catching up and having fun, no expectations of presents, extra input from me, or staying for any particular length of time. They also illustrated to me that no matter how low key the event is, I’m going to be using a lot of my precious energy up at these events.

After each of the two events I have felt extremely drained and have literally crashed on the couch in a ball of pain and exhaustion. I’ve relied on E or my mum to make sure I still did all the things I needed to the rest of that day and the following day.

The next big Christmas event I’m aware of, is E’s family Christmas gathering on Christmas Eve (I’m sure others will come up in between and I have asked about when my work one is). This event, although not big in terms of the number of people there, does have certain expectations; presents and a sit down dinner. E and I have already had a chat with his mum about cutting back a bit on the presents next year because we’ve both found this year to be very stressful and she has agreed we can make them not an expectation next year. Dinner should be OK because everyone there knows what I’m going through and I’ve already been told I can go and rest when I need to, but it will still be a very long afternoon/evening and I’m going to need to rest up a lot before and after.

I believe E and I have agreed that this will be the only major commitment we make this year. Unfortunately this means that, unless by some miracle I have lots of energy, we will not be participating in my family Christmas lunch on Christmas Day. In some ways I’m grateful for this, as it is a very large gathering with lots of people. In other ways I’m a little disappointed, Christmas and Easter are the two times of the year that we see a lot of these people. Overall, I’m not going to feel too guilty about missing my family Christmas this year because we saw most of them at my sister’s farewell the other week.

All other Christmas catch ups will be paced out both before and after the actual day so that I have time to rest in between each event.

How do you deal with the expectations of family and friends during the holiday season?

Do you have any tips on getting through my first Christmas with chronic illness?

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  1. Jumping_Jenny_444 December 2, 2013 at 10:44 am

    This is my first Christmas knowing that I have a chronic illness (last year, I thought it was burnout or just coming down with something). So this is kinda new to me too. Some things I need to do (which could be helpful for you) is pace myself, sort between gatherings that are necessary and the ones that aren’t as necessary, and find the blessings out of the simplicity of the holidays. Little things like seeing a beautiful Christmas tree or hearing a Christmas song that you like. I like thinking back to my childhood and all the wonderful Christmases I had. Reexperincing the memories in my mind is refreshing. πŸ™‚

    • Megan S December 2, 2013 at 11:01 am

      Thanks Jenn, that sounds a lot like what I was going to attempt. I’ll have to see if I can manage to be strict with myself and focus on my health, not trying to please everyone else. Simplicity is definitely key!

  2. dawnhosking December 2, 2013 at 9:02 pm

    This is difficult. Extra and unexpected activity. A challenge to say the least. I do my best to build up energy beforehand and tell family not to expect too much from me and not to be offended if I need to leave them to go and rest. You have got to look after you as best you can xx

    • Megan S December 3, 2013 at 7:30 am

      Thanks Dawn, I’m definitely trying to put my health first this year.

  3. asouthernceliac December 3, 2013 at 11:07 am

    I always plan “rest periods” ahead of time before holiday celebrations. That way I don’t wear myself out and wind up crashing mid-meal. I hope your holidays go smoothly, the first chronically ill holiday is always the worst.

    • Megan S December 3, 2013 at 11:13 am

      Thanks, I’m definitely planning to rest beforehand but I am still concerned about crashing. πŸ™‚

  4. tlohuis December 3, 2013 at 3:26 pm

    I have been chronically ill with several chronic illnesses, pain and fatigue for years now, so I’m getting to be a pro at it. Of course, it’s getting worse each year. Just the getting up and getting ready to leave the house takes about all my energy, of which you can probably relate to. My family has just come to terms with the fact that maybe I’ll be there and maybe I won’t. When I do go, if I get too tired and the rest of my family isn’t ready to leave yet, or if I’m ready to leave the minute I get there, I’m always allowed to go lay down on my moms bed without being made to feel guilty. They say they would rather have me there even if I’m in the other room laying down.
    On the years that I’m able to buy any gifts for my kids or anyone else, I do most of my shopping by catalog and the internet. You don’t have to get up and ready to go and be out of energy before you ever leave the house. You don’t have to park a hundred miles away. I do have a handicap parking placard to hang from my rear view mirror, but at this time of year, often all the handicap parking spaces are taken. You won’t have to stand in long lines and deal with all the rude people out there that get pissed off if you just say excuse me, please, just to get by them. I also do a lot of shopping on QVC on tv, a shopping network. You can order from them 2 days before Christmas and have your item in time.
    Don’t volunteer to do things that you know you won’t be able to do, such as a bunch of cooking or bringing a lot of things. My family knows my condition so I’m pretty much excused from most of that type thing, or whatever I’m asked to do is very minimal.
    Don’t over do it. Don’t let others make you feel guilty for being sick. It takes awhile to be able to do that, I know. Only do what you can and nothing more. And, the most important thing of all, which has taken me years to learn how to do, learn to say NO. If you’re asked to do something you know you won’t be able to do or it will be difficult for you to do, say NO.
    I could probably write a novel on this subject, but I hope these tips are helpful for you.
    Have a very Merry Christmas.:)

    • Megan S December 3, 2013 at 4:40 pm

      Thanks! I have definitely got most of that in mind. I’m still struggling with saying no and I tend to feel guilty even when others aren’t trying to make me! I think everyone understands and is good with where I’m at for this year, but I have no way of knowing until the day if people’s expectations of me are different to what I think they are.
      Hope you have a Merry Christmas as well and looking forward to getting to know you better.

      • tlohuis December 3, 2013 at 7:07 pm

        I still struggle with saying no, too, but I am getting better at it because the longer I’m sick, the more people actually get it. And, I feel guilty about everything and I’m working really hard on that one as well. It’s not easy living life this way. I’m also looking forward to getting to know you better. happy holidays my new friend.
        Peace and hugs,
        Wild Thang aka Tammy:)

        • Megan S December 3, 2013 at 7:27 pm

          Thanks πŸ˜€

          • tlohuis December 4, 2013 at 11:37 am

            Hope you’re having good day. πŸ™‚

          • Megan S December 4, 2013 at 11:38 am

            Thanks πŸ™‚ having a very relaxed day because I’m heading to a concert tonight. I know it’s probably a bad idea but I really want to be there… E says we’ll decide tonight if I go or not.

          • tlohuis December 4, 2013 at 11:57 am

            That’s how I am with everything, can’t decide until the time comes, really sucks living life that way. Can’t tell you how many concert tickets I’ve bought, only to not be able to go when the time came. It’s very frustrating and makes me very angry. I hope you get to go and have a great time. We always have to pay, regardless, so if you feel up to it, go, have a great time, and pay the price for it tomorrow. We can’t just never do anything because we’ll pay the price for it. Sometimes it’s just worth it. That’s my theory and I’m stickin’ with it. Let me know how it goes and hopefully, you won’t have to pay too badly, unless you get out of control at that concert, like I always do, if you know what I mean? LOL Have fun.:)

          • Megan S December 4, 2013 at 1:14 pm

            πŸ™‚ thanks

          • tlohuis December 6, 2013 at 4:40 am

            Just keep on trying……………………………..:)

          • Megan S December 6, 2013 at 7:08 am

            Thanks πŸ™‚ I will

  5. tlohuis December 6, 2013 at 7:38 am

    Did you get to go to your concert? Did you have a great time, if you did go?:)

    • Megan S December 6, 2013 at 8:00 am

      Yes I made it πŸ™‚ still paying for it though. Taking this weekend off of everything to relax and spend some time with some of the girls in my family.

      • tlohuis December 6, 2013 at 8:24 am

        Glad you got to go and sometimes it’s just worth it, isn’t it? I just had 4 great days in a row, and I’m now in the “paying for it phase”. Staying positive, relaxing, there are more good days ahead.:)

        • Megan S December 6, 2013 at 8:26 am

          Sorry to hear that. I’m about to add to my pain… Flying with my mum and sister to spend the weekend with my aunty… It’ll be a great weekend but I know I’ll be sore after πŸ˜€

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