New Year, Same Chronic Illness

Happy New Year! It’s that time of year again; out with the old and in with the new. At least, that’s how it should be. But the reality of living with a chronic illness is that it is just that – chronic:

Chronic /ˈkrɒnɪk/

adjective

1. (of an illness) persisting for a long time or constantly recurring.

“chronic bronchitis”

Similar:

persistent, long-standing, long-term, constantly recurring

It really is a case of a new year, same old chronic illness. In fact, this will be my 27th year since I was diagnosed with my chronic illness, Multiple Sclerosis.

In those 27 years, I have transitioned from what the doctors termed as ‘benign’ MS, with relapses few and far between and no disability, to secondary progressive MS, mobility problems and cog fog.

Ups & Downs

I’ve written before about how this time of year is bittersweet; I love seeing my kids progress and grow (despite the fact that it is invariably more difficult to parent them as ‘tweens’ than it was as toddlers!) but the fear of the new year when you have a chronic illness is real. Isn’t your body just setting you up for failure? One question in particular swirls around my head:

Just how much worse am I going to get?

2019 was a year of up and downs for me; it started with my Haemopoietic Stem Cell Transplant (HSCT), which was intense and invasive, what with the chemotherapy and month-long hospital stay. But, 6 months later, my first MRI after my treatment showed no new lesions for the first time since I was diagnosed, a definite high point.

Despite this good news, it was always made very clear to me that the treatment would not fix the damage that had already occurred or prevent me from getting worse, as any damage that I did have was long-standing and progressing.  What they did say was that they could stop new damage from forming, which this MRI showed the treatment achieved.  Despite this, my MS is worse than ever. I won’t go into detail but let’s just say that that HSCT is definitely not a ‘cure-all’, especially for those of us with SPMS.

Regardless, I still see the new year as a time to dust off my ‘self-care’ plan to be as healthy as I can be with MS: for me, this means having a renewed determination to stick to my low-saturated-fat plant-based diet, the gym, yoga, meditation and vitamin D as per the Overcoming MS protocol.  And that’s the thing: it is the same new year plan that I always have… because to aim for something more is just too much to think about. I think that there are certain facts that I have to remember, going into this new year:

I’m the Expert

I recognise the importance of not comparing myself with others that I see or read about on social media because the best way for me to measure my health is to use my years of experience of living with it. Drinking more water? Yes, that’s doable for me but, believe me, taking up couch to 5k is not.

The best way for me to measure my health is to use my years of experience of living with it #chronicillness Share on X

Sometimes what’s right for a person with chronic illness looks like the antithesis of ‘healthy living’ to others – I have a friend with Crohn’s who feels much better on a low-fibre diet and, certainly for me, sometimes taking a nap is more important than making it to the gym.

I’m a big believer that we are the experts when it comes to our own bodies and it is so important for us to be our own advocate, so I plan on continuing to do that this year. It was me being my own advocate in 2018 which lead me to ask for a second opinion in regards to my MS and subsequently having my HSCT treatment (see my experience here). Don’t be afraid to ruffle a few feathers if you need to.

To Focus on the Good

As I said before, 2019 was definitely been a year of ups and downs, not just in regards to my health but also personally and professionally. Although I am not where I want to be yet, I am determined to think positively and to focus on how I can get to where I want to be.  I am going to prioritise putting myself first more and also being more courageous, in a way that works for me.

Professionally, this might be to be brave and take the step to make links with others in my profession who are well established as independent speech and language therapists, which I am aiming to achieve. In regards to relationships, I aim to stop feeling guilty about how my MS might impact on others. Easier said than done, I know, but when I think of all that I managed to achieve last year in regards to keeping home and parenting, despite recovering from treatment, I am bloody proud of myself. I can’t ‘fix’ my chronic illness, so why feel guilty about it?

I can't 'fix' my chronic illness, so why feel guilty about it? Share on X

To Set Achievable Goals…

…Or even no goals at all. I don’t know about you but one of the things that I find hardest about the ‘new year, new start’ mantra is that often it can just make me focus more, in a negative way, to my illness and disability.  Whereas in the past, when I was well, I set myself resolutions and goals (and even in health, didn’t always achieve them), now they often look like unsurmountable hills to climb. It reminds me on just how much my life has changed as a result of me being sick. Remember that goal I had a couple of years ago of learning a language when I finished work? As if I have managed to do that! Last year I set myself an aim of reading 40 books over the year. Did I achieve it? Did I heck. I think for me, just using the word ‘more’ would be better; More journaling, more water, more books… not X amount. That way, my goal is adaptable to how I feel at the time. If I just read one extra book a year or had 3 glasses of water to yesterday’s 2, I’ve achieved it!

To Continue to Survive

Because although chronic illness is…let’s be honest…shit, we are still surviving it. Every day we are waking up with the knowledge that it has to potential to be an awful day in our chronic illness life and yet we still manage to keep going. And think about what we are managing to do, despite our illness: some of us are bringing up kids, some of us are still working, we have interests and hobbies and friends and family. We are learning from our hard times, recognising what we need to do to help ourselves and how to keep ourselves as well as we can be, both physically and mentally.

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So, here’s to 2020. New year, same old chronic illness and I have a renewed determination to continue to thrive, despite my chronic illness. No set resolutions, just a general plan to continue to see the value of what I have, my own value and to trust myself as my best advocate. What about you? What are your plans for 2020? Really hoping that it is a good one for anyone reading, full of as much happiness and health as possible.

Till next time