A Guide to the Festive Period with Chronic Illness

When you are living with an illness such as ME/CFS, Christmas can be a really difficult time.

Seemingly simple things that others take for granted, such as sitting at the dinner table, may well be impossible for you right now.  There will also, be a temptation to push yourself through symptoms much more than you usually might on any other day.

Something else that I think we all experience, is your mind doing the whole comparison thing. Comparing how things are this year…to how things were last year. Times like Christmas make the passage of time very apparent and if you aren’t where you ideally would like to be in life right now, this time of year can evoke really difficult emotions.

I truly understand these feelings, as well as many others, which is why I’ve written this post. Hopefully it will help those of you not feeling too great right now, manage Christmas this year a little more easily and feel less alone.

I write these words from a lovely cosy cottage not too far from the sea. I’m here for the week with my family, and for that, I feel grateful. Especially because my one year old Nephew is here with us and that means lovely smiles and cuddles, which is the best gift especially if things are feeling a bit rubbish. However, it doesn’t mean this is the easiest Christmas. This time last year was when we lost our Dad, so it feels a bit strange. The one year anniversary of someones passing is never easy is it.

Physically, I am recovering from a few not so good months ME wise. The extreme exhaustion is very much a part of my every day life right now, so it means I’m having to have huge amounts of rest and miss out on quite a lot of things.

Despite the above, I plan to do what I can to make this Christmas time a peaceful one, and be grateful for what I do have, whilst allowing the emotions that are part of being human to arise when they need to.

Here are my little tips (that I shall also be following too) to help you manage the next few days….

1.  Remember other people are struggling too…you’re not alone

Many people find Christmas difficult for a variety of reasons. These people may be physically well and able to attend a social event or trudge round the shops, but it doesn’t mean they are having the best of times. People who struggle with social anxiety, or illnesses such as depression will also be having a tough time right now. As will people who are feeling lonely or those who have recently lost a loved one. I don’t want to make this into a big list of why people struggle at Christmas! But I’m trying to just balance things out, as I know my mind has often been taken down the ‘everyones having a perfect Christmas but me’ path. It’s not always true.

2.  Do Something Lovely for Yourself

This will obviously depend on your current level of health. But make sure you do something extra lovely for yourself to make your own Christmas Day the best it can be.

If you are bedridden, maybe have a special breakfast in bed? Light a candle next to you. Have some fresh flowers in the room. Download a new audio book or some lovely relaxing music. Let your family come and sit with you for as long as you are able. Maybe ask a family member to give you a little hand massage?

This year, I plan to have a peaceful day where I listen to my body as much as I can. I’m going to dip in and out of socialising, quietly slipping off to my room as and when I need to. I’ll do a meditation and some relaxing yoga mid morning and I’ll have a sleep mid afternoon – but this is one Christmas time activity where we can fit in with everyone else, because loads of people have a Christmas day snooze!

3.  Do What is Right for YOU

I’ve spent so many Christmas’ faking a smile, talking to relatives and pushing myself to sit and chat to people when my body has been screaming for rest. I’m not entirely sure why I used to do this? Embarrassment on some level at having to say ‘I need a lay down now?’ Or not wanting to miss out on anything, so forcing my body to stay upright when I really need a lay down.

I urge you to be aware of this for yourself too. If you need to excuse yourself, do it! Have as many rests as you need. What other people think shouldn’t matter as much as your own care for yourself and your recovery.

4.  Perspective

This is an important one. We can put a lot of pressure on ourselves to have a ‘good Christmas’. With ideas about how it should be. Remember, that this is one day, that will come, and go. Just like all the others. This time next week it will all be done! Don’t allow yourself to get too hung up on one day and definitely don’t pressure yourself to try and feel any certain way.

However you are feeling, try not to forget the meaning of Christmas. It’s not really about how much you can ‘do’ (although I know that in an ideal world we would all like to be feeling well and be able to do certain things at this time of year). Christmas will have its own personal meaning for you. But for many, it is a time to celebrate and show love to our families and those we care about. We can do this, regardless of how well we are feeling.

5.  Create a little Ritual

Because I had a feeling this year may be a little difficult, I decided a few weeks ago, to do a little Christmas ritual for myself on Christmas day.

Lately I’ve become more interested in the cycles of the moon and how it can affect us on so many different levels. This December, the full moon falls on 25th December at 11.11 The numbers 11.11 also have a powerful meaning in terms of numerology (but thats a whole other post) so around that time, I shall take some quiet time by myself and do a meditation.

I have bought myself a gift this Christmas. To myself, from myself. I guess this was partly because there were two books that I really wanted on amazon and it was a fabulous excuse to treat myself 😉 but that aside, symbolically, wrapping myself two beautiful new books to give myself on Christmas day felt lovely. Its an extension of the self love stuff I’ve written about in the past.

If having your own little ritual resonates, take some time think about what feels right for you and create your own for this Christmas. It doesn’t have to be anything elaborate, just something that feels symbolically like something you may like to do for yourself.

6.  Dealing with The Passage of Time

When you have been ill for some time, occasions such as Christmas can mark the passage of time. For people well on their way to recovery, this passage of time can lead to smiles and celebrations as they notice their progress. But if you are still very much in the middle of your experience with ME/CFS, or are in the midst of a setback, a feeling of panic may wash over you as ‘yet another’ Christmas is upon you.

I know for me personally, this Christmas approaching has been tough, because of the recent relapse. Up until a few months ago, i was steadily improving and then the viruses struck which lead me to now. My mind naturally wants to compare myself to how I was last year and say ‘oh but Emma you are physically worse now than you were then…..’ (followed by a spiral of ‘I’m never going to get better’ thoughts).

It doesn’t take a genius to see this way of thinking isn’t useful. If you find yourself doing this, (which if you are human and not feeling too good, you probably will!) gently remind yourself, again, that Christmas is just a day! Lots of things will have affected where you are at in your recovery so far, and I know for me, reminding myself of that actually brings some comfort.

7.  Gratitude

I know there is a lot of talk around Gratitude at the moment. But it really is important. Sometimes, when we are feeling like things can’t get any worse, the thought of being ‘grateful’ can actually make you feel cross and angry and like the last thing on earth you want to be doing in that moment. But actually, taking a few deep breaths, and reminding yourself of some things in your life that you feel you a truly thankful for, can help you feel calmer and more at peace. There will be many things that you have in your life, that others can only dream of having. Notice some of the things you do have in your life.

8. As Always…be present

Allow Christmas Day to unfold exactly as it needs to. As Echart Tolle would say, all we have is this moment. Let each moment be exactly as it needs to be and throughout the day, especially during moments where you find yourself getting stressed or worked up, take a moment, and bring yourself calmly back to your breath.

Remind yourself also, that a brand new year is just around the corner. With new hope and many possibilities.

Don’t forget this.

Wishing you a Peaceful Christmas.

Emma x