A Very M.E. Christmas

I’ve mentioned before that special events like Christmas and birthdays can be particularly tough when you’re chronically ill. As the airwaves chime with Christmas songs, TV chefs cook festive feasts and Facebook newsfeeds fill with talk of nights out and nativity plays it’s impossible not to reflect on Christmases past and mourn the things I used to do when I was well.

As a trumpet player I was in demand for concerts and carol services. As a kids’ worker, there were pantomimes, crafts and Christmas games. There were invites to parties from colleagues and friends and of course all the shopping with piped Christmas music and commercialised cheer.

In the early years I missed these things so much that it hurt. Christmas didn’t feel like Christmas without the religious observations and social activities of previous years. As the years pass however, and I learn to live with the limits of illness I find that my expectations have changed; Christmas has become less a reminder of what I have lost as a marker of just how far I have come.

When my illness was at its worst, I was too ill to celebrate Christmas at all. In 2006 I spent the day bedridden and alone, unable to travel or spend time with my family. Teetering on the brink of relapse following eviction from my home, a screw up with social services left me without any care for three whole days. My water ran out almost twenty-four hours before family could get to me. Even when care was back in place I struggled to eat solid food and my gifts lay unopened well into the New Year.

The following Christmas was spent on a hospital ward a hundred miles from home. One of only three patients left on the ward, one-to-one nursing care meant I was able to get out of bed for the first time in weeks and spend half an hour on a sofa in the patient’s lounge. Mid-morning my mum thought to phone me from church so I could listen to the congregation sing. It was the first bit of Christmas to enter my world for a couple of years.

In 2008 I stayed with my parents for the first time in three years. I travelled with the car seat fully reclined, wrapped in a fleece and surrounded by pillows. It took more than a week to recover. I crawled downstairs to join in the first half of Christmas lunch before returning to bed with my meal unfinished.

Since then I have managed to do a little bit more each year. Progress with this illness is often so slow that the change goes unnoticed from one month to the next, but when I stay with family at Christmas they notice the jumps between what I can do this year that I couldn’t do last year.

I still can’t attend parties or catch up with all my old friends but by downsizing my expectations I am able to focus on the things most important to me. I don’t need church rituals to celebrate the birth of Christ. I don’t need parties and invites to know that people care about me.

Where I once would have handmade dozens of cards, this year I have chosen not to send any; I will write proper letters in the New Year instead. Instead of the exertion of shopping, wrapping and posting, I have ordered on-line and paid for gifts to be wrapped and sent straight to my friends. Instead of saving gifts until the (already over-busy) big day, I have chosen to open gifts as they arrive, in order to enjoy each one at my leisure.

My one brief trip to the shops this year, surrounded by stressed out, panic-buying hordes, was enough to convince me that all things considered, this downsized Christmas might be eminently preferable after all.

I won’t string the lights on the tree this Christmas, or dance on a desk at the office Christmas party. I won’t lay the table or cook Christmas dinner. I won’t join friends in church on Christmas morning, join family on a post-dinner walk, or join brothers in front of the telly for the Dr Who Christmas special.

But unlike friends who are bedridden and tube-fed this Christmas I will make it downstairs to spend time with my family, and eat turkey and trimmings at the one time of year we can all be together. That one gift alone is truly worth celebrating.

So as I sign off what will likely be my final post of 2013, let me wish each and every one of you the happiest possible Christmas and the healthiest possible New Year. And whatever circumstances you are facing this Christmas, I pray that in the midst of all of the stress and busyness you find ways to make it special with the people that you love.

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15 Responses to A Very M.E. Christmas

  1. Wishing you a lovely day and a peaceful 2014. xx

  2. Jackie Pretorius says:

    Happy & Blessed Christmas. May the fond memories you make fuel your optimism day by day. Enjoy the family…regards to your mum & dad…and continue to make every moment count. God’s richest & choicest blessings always.

  3. E. Milo says:

    I’m trying to have the same sort of grateful perspective. Thank you for the hopeful post. Happy Christmas, Sarah. X

  4. addercatter says:

    Merry Christmas. This is a very touching post. Through your illnesses and experiences with it, you are reaching out and touching other people’s lives. Whether you realize it or not, by writing, you ARE making a difference. You DO matter and you DO have a very intricate purpose. You’ve touched my life and I want to thank you.

    I can really relate to this post and it makes me feel less alone and more grateful because like you said, I could be bedridden and tube fed right now. I have very strict limitations on what i can or can’t do, but I’m not confined to my bed 24/7 anymore. It’s hard to complain now, when I think back to those times.

    Merry Christmas and Happy New Year
    Kat =^..^=

  5. Good blog. You have really been through a lot. I also have been able to start marking Christmas not as a time to mourn the past, but to see the progress.

  6. Megan S says:

    Have a wonderful day and I hope the new year brings further improvement and joy. 🙂

  7. I hope you were given a little respite in the last week and managed to enjoy the festivities a little. Seeing Christmas as a marker of progress is a great idea. I wish you all the health and happiness possible for the New Year.

  8. Tanya says:

    This time of year always comes as a reminder for me to be grateful for the things I have and the people I love. Being able to be upright for a while and spend time with family is totally worth celebrating 🙂

  9. painfighter says:

    Christmas is hard when you live with a chronic illness. I had to reshape my expectations of this time of year and learn to pace myself. I also had to learn to let go of traditions I couldn’t manage anymore. I also gave up on shopping in stores for presents and do all my shopping online to conserve energy. It’s taken time, but I’ve gotten back into the holiday spirit now and enjoy this time of year again. It helps that my family understands what I deal with and doesn’t pressure me to do more than I’m able.

  10. Hello Deadmendontsnore (love the name). Thankyou for liking my last post. I look forward to reading more of your blog. You’re a good writer and reading about how you cope with your illness today has made me feel a bit less alone with my illness also.
    Lucy 🙂

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