Chronic Illness Christmas Ghosts

As another Christmas looms, my head is filled with memories and thoughts – ‘ghosts’ if you will – of not only my past but also my future that is to come.  The holiday season is usually a lovely time of year; I embrace everything – decorating the house, making advent calendars for the kids, Christmas baking… but it also a time of reflection for me.  The new year is just around the corner and life feels that it has changed so much over the past few years especially. As many with chronic illness(es) will know, thinking about what is around the corner is often in our thoughts and we often think wistfully about the past, especially at this time of year.

When I was a kid, I loved the Christmas Carol story and, now that I am older, the film White Christmas is a regular at Christmas time. I think that I love these stories because the idea of ‘fixing’ past errors and the promise of a better tomorrow sounds ideal. But add a degenerative chronic illness like Multiple Sclerosis into the mix, and the ‘better tomorrow’ might not seem very likely. Yet I am a big believer in the idea of ‘life is what you make it’ and ‘what’s for you won’t pass by you’ (as my Granny used to say). The holidays, then, are the perfect time to stop and ‘take stock’ of what is going right in my life, to consider what maybe needs a bit of help and to then set an intention on how to help myself as best as I can as we go into the New Year.

Chronic Illness Ghost of Christmases Past

I grew up in Canada and every year we were treated to a very white Christmas with the same routine – which I loved. Spending the morning with my parents, older sister and younger brother, then onto some family friends who would always give me a little treat of a ‘book’ filled with Lifesaver candies – I am sure that was the highlight of my Christmas, lol.

One year, my sister and I got Cabbage Patch Kids – remember those ugly things?! – and, as an adult, I found out that my lovely Dad had queued outside a shop from 5:30am just to make sure we got them. I loved spending time with the family, decorating the tree and the little traditions we had – playing the same Christmas CD every year, having a big family breakfast, getting dressed up because it was a ‘special’ day, even going to church as it was such a nice atmosphere (though I am not religious now, it holds lovely memories).

I was diagnosed with Multiple Sclerosis at aged 15, though had my first relapse of optic neuritis at 13. By this time, we had moved to the UK, I no longer believed in Father Christmas and Christmas had become a more sedate affair.  I’ll tell you what didn’t change though – the food! Chocolate, mince pies, chocolate, cheese, chocolate… did I mention chocolate? This is where my ‘regret’ comes in.  After being diagnosed with MS, I did not attempt to change my lifestyle to stay as healthy as I could with MS. I was keen on exercising, so that was ok, but I certainly didn’t watch what I ate. Knowing what I know now, as an older, wiser, more seasoned MSer, I wish that I had changed to the low-saturated-fat diet that Professor Swank was extolling.

Information and research on the benefits of healthy eating for MS has always been there if you looked deep enough but, back then, I think it was the combination of my age (‘I don’t want to give up my favourite things’, ‘it won’t happen to me’ etc) and the way that the research was reported in the MS literature (‘there is no specific diet to help MS’) in the 1990s that made me not take that step to take control of my health.

I’m not a saint now, of course; I follow the Overcoming MS protocol, but I do have the odd bit of blue cheese around Christmas time.  But, perhaps, back when I was diagnosed – and in fact, right up until I started OMS in 2014 – if I had started taking more care of my health (not just at Christmas, but all year round), I maybe I could have changed the health I have at present? Who knows, but it is certainly a ghost of my past that I think about.

Chronic Illness Ghost of Christmas Present

So onto Christmas present. So far this year, I have been super-efficient – I’ve made my OMS-friendly Christmas pudding, have bought most stocking stuffers for the kids and I’ve even started hand-making gifts in an effort to be more frugal.

As I said above, I find Christmas and New Year a time to reflect on the past year and how it is different from previous. This year, for example, I’m well enough to enjoy the festivities; this time last year I’d had my first bout of chemotherapy for my HSCT treatment and was feeling a bit rough and apprehensive about the upcoming remaining treatment.

This year has seen some of my relationships change, my children getting older and no longer believing in Santa and me working hard to get my speech therapy business off the ground. I’ve had my first MRI without any new lesions this year for the first time – ever. But I have to admit that I am feeling a bit… discombobulated. I was told that, despite my clear MRI, my MS might still progress somewhat because of the previous damage that had already occurred.  I worry about whether my work will impact too much on my MS and whether the kids will have as good a Christmas now that they don’t ‘believe’.

There are so many different areas of my life. My multiple sclerosis health is one but so is my general health, my relationships with friends and family, my social life, my work life, my parenting life… as we move into the Ghosts of Christmas Future, I feel like it is worth having a think about all of these different aspects and considering whether there are any changes or priorities that I would benefit from making in order to have my best life possible, chronic illness or not.

Chronic Illness Ghosts of Christmas Future

I don’t know what my future has in store for me – does anyone though? Part of me worries because of my MS and the uncertainty that can pose with my health, but, ultimately, I like to think that I am a positive person and that not dwelling on the ‘what ifs?’ helps.

In A Christmas Carol, poor Scrooge sees a not-very-nice future: silent, dark and ominous.  But I can choose to go forward into the New Year with a feeling of purpose.  It will be 29 years in the spring from when I had my first bout of optic neuritis; I have lived much longer with an MS diagnosis than without – and I am still ok.  Yes, it bloody well frustrates me that I can’t move like I used to, that I can no longer work for the number of hours that I used to and that MS has had a massive impact on some of my relationships. But, you know what? I am ok. And I am still here. And I am valid. And I am still the same person I always was, despite me having to contend with changes in my lifestyle and changes of plans that I hadn’t anticipated.

This year, and next Christmas, I see myself still surrounded by friends and family, taking time off after a busy year getting my speech therapy business up and running. I’m hoping that I will still be keeping up with my gym, yoga and OMS programme. I’d love to be able to reflect on the fact that my MRIs continued to be clear, that I have maintained my online chronic illness friendships and that I had the holiday of a lifetime with my sister and her family in Australia.

So, I need to set an intention – to have a brilliant 2020 and to take both my experiences of the past and what I am experiencing in the present, into the future. For me this may look like:

Sticking to a work timetable that works primarily for me.

Seems simple but that is something that I couldn’t do last year whilst working for the NHS, as I was not able to reduce my days. By next Christmas, I would like to feel that I am listening to my body and getting the perfect balance of work and rest. This will allow me to still do the job that I love, whilst hopefully still having the energy for interests outside of work.

Keeping my social relationships going.

Feeling so rough for the best part of this year has been hard going, but I am determined to maintain and build upon the friendships that I already have. Luckily, good friends have already said that they’d be happy to chill at mine with nibbles and a bottle of wine, so if I am not up for going ‘out out’, I can still have a giggle with my mates.

Staying on top of my health

I definitely plan to stay on the Overcoming MS programme, to help my MS be as good as it can be: diet, exercise, meditation, vitamin D, medication as needed. Also, it is easy to think that my MS is all I have to think about health-wise, but that’s not true.  I am also now in my 40s – and I have just had the ‘over 40s’ health check with my GP to prove it! Luckily, everything looks good so far, but she did mention keeping up with the exercise to maintain my bone health, since I am less mobile and also reminded me around the importance of breast self-examination, which, I admit, I tend to forget about. I’ve just started taking a multivitamin with iron in it to see if that helps me to feel less tired and also vegan glucosamine, to keep my joints healthy. This is on top of the various things I already take following my treatment, so I’m sure I’ll be rattling by next Christmas!

To admit that I need help

This is something that I am much better at doing, compared to how I was a few years ago. Yet it took falling down some steps outside my house and breaking my collarbone a few months ago to make me realise that I needed extra support inside and outside my home in order to live more independently and safely. I now have handrails near the steps outside and I have also had contact with occupational therapy look at whether I need further adaptations within the house. I’ve even thought about the possibility of perhaps looking into a more ”disabled-friendly home’ – I currently live in a Victorian house which, although beautiful, isn’t very accessible, doesn’t have a loo downstairs for those ‘urgent’ moments and is actually pretty big to maintain. A new home for 2020? Who knows.

To be happy

I know that I will continue to have times when I feel down about my chronic illness and that it isn’t the case that you can be happy all the time. But I can try.   By next Christmas, I like to believe that I will have had a really lovely year where I have done things to keep myself happy, keep myself healthy and to nourish me, my mind and spirit, even more than I have this year.

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I’m really hoping that everybody reading has a fabulous holiday season and New Year 2020.

Till next time