Why Being Sick Makes It Hard to Answer This 'Simple' Question Every New Year

As a new year approaches, it’s usual to think about the year ahead and set goals, both for your personal and business life, and perhaps plan holidays or other adventures. I did that for years.

It’s summer in Australia and generally Christmas to the end of January, is known as the holiday season. Schools are closed and many businesses have reduced hours and reduced staffing levels during this time.

Many of my specialists are also on holiday, so that allows me a little time out from tests and appointments. I’m so grateful for a mini reprieve from the medical scene.

I’ve always loved the quietness of the summer holidays, particularly when I was working, as it gave me time to slow down a little and think about the future and the year ahead.

I’ve been asked a few times over the past week, “Do you have any plans for the New Year?” Since medically retiring due to an idiopathic rare disease, it is probably the hardest question anyone could ask me. The question per say doesn’t upset me, and I’m not incapable of planning, it’s just I haven’t been able to make many concrete plans now for a number of years.

Well actually, that’s not technically correct. I can make them — I just can’t guarantee I can achieve them. And the likelihood is, I would have to bail out at the last moment if I did make them.

So I pondered what my plans actually were for the next year, and I came to the conclusion that I don’t have any set plans.

I have health hurdles and challenges I intend to get through with as much grace and determination as I can muster. I have purpose in terms of writing and administrating my online support forum.

Outside of those activities, I am living one day at a time, often one step at a time…literally.

There is something quite liberating about taking one day at a time. I don’t know what lies ahead, none of us do. So instead of looking ahead for the next goal to be achieved, or the next adventure to come along, I am hoping to enjoy each special moment in each day. It’s all I can do.

Would I like to have a holiday booked? Of course.

Would I like to be able to work? Absolutely.

Would I like to be able to book a restaurant for a special occasion? Definitely.

I’d like to do many things. To say otherwise wouldn’t be true, but focusing on what I can’t do isn’t going to help me live well with my rare disease.

Focusing on what I can do, no matter the limitations, helps me remain positive and outward looking.

Some of my moments are so full of pain that I long for those to pass. The moments when I can do a little bit more than the moment before it, I “plan” to enjoy as much as possible.

I might not be able to set great goals or plan adventures, but I’m still glad a new year lies ahead. It will be full of surprises whether I plan them or not.

It will be full of joys and disappointments too. The best I can do, the best anyone can do, is to embrace each and every experience. If I do, I am embracing life and all it has to offer.

I might not be able to make concrete plans, thanks to my rare disease, but after living an eventful life of copious agendas, schedules, conferences, appointments and constant phone calls before chronic illness, you know what? I can breathe, I can relax and just allow the adventure called “life” to unfold as the year rolls along.

Setting realistic New Year expectations not only helps us start 2020 in a manageable way, it also lets our friends and loved ones know we need to live differently.

We need support from others. Often we feel hurt when we don’t receive it, but it can be because we haven’t communicated our needs and chronic illness restrictions clearly.

So, what are my plans for the New Year?

My answer to anyone asking is simple but honest:

“I plan to live as well as possible, within my limitations and enjoy what I can, when I can — nothing in concrete.”