I am so excited for 2020 already. We have some holidays booked and Baloo has a big birthday quite soon into the New Year. There is a lot to look forward to and enjoy. I am enjoying the planning but at the same time, I am scared that I will alter our plans.

My health is unpredictable so is Baloo’s and thinking more than a month in advance makes me worry. I have a lot of change happening right now to do with restructuring the help I have been getting from a few places. We are trying to cobble together a better service that suits my ME/CFS. It is a tad stressful, so I find myself looking forward to all these wonderful things to escape the now I’m facing and then the panic sets in.

I don’t feel like I am alone in saying that the future becomes another F word when you have a long term chronic illness. You have no clue what will happen and how you will cope so you tend to just block it out. Of course, we have to plan Christmas, birthdays and holidays in advance but for me and my family that tends to be several plans planned. We adapt as we can but it doesn’t eliminate the uncertainty. I know we all experience this, ill or not. It’s just magnified if you have to plan everything to make sure you survive and don’t take a huge hit to your health.

People also want you to have a plan for your life and what you want to do next. It’s not that we don’t want to do these things because I think most people like to know where they are heading it’s that we can’t see how the future will work. Let alone plan for our lifetime of ambitions. I know some people are doing incredible work with a chronic illness and I’m just not one of them. I still try to live each day to the max but I’m trying to keep standing when storm waves are heading my way. I need to continue to keep getting up and trying new things and not being scared of the future so I put myself in the happy-fear of the future.

I also try to live in the now because even though this year has been rough wonderful things are happening and have happened. I’m grateful for the fact Baloo and our families support us in every way they can. They are willing to work with us and be present when we need them. My present is scary but I know that I will be looked after. I know we all will continue to work to get Baloo and me in the best position possible and if that isn’t achievable it will be worked to our advantage. The future is my F word but that can’t be helped.