Your Commissioner - Your Voice

Commissioner Zoë can ask questions on your behalf in her Online Public Meeting with the Chief Constable or Chief Fire Officer. Ask your question and find out more.

Day 15. Living with a Long-term Condition at Christmas

Over 15m people living with a long-term condition this Christmas

For 15 million people in the UK, living with a long-term, chronic illness is another part of their everyday life.

This Christmas and the build up to it, remember that what is already tough on you, might be even harder on someone else. With 15 million people in the UK living every day with a chronic long-term condition, Christmas time can be an even more debilitating time, than their everyday life already is.

I spoke with Polly, who lives with Fibromyalgia. She has put together an image that helps others understand how Fibromyalgia impacts her every day:

This image has an empty alt attribute; its file name is image-19.png

Everyone with a long-term condition will experience theirs differently, even when the exact diagnosis is the same. This is Polly’s story:

Managing my Fibromyalgia during the holiday season – by Polly Etheridge (NYOPFCC)

“there is no such thing as a ‘perfect’ Christmas”

When the holidays come around, many look forward to finally relaxing and unwinding after all the stress that they have felt over the year. But for me, who has fibromyalgia, this can be a more difficult time and the feelings of fatigue and pain that I feel everyday is only heightened by special events, like Christmas. These feelings can debilitate me enough to stay home rather than spend time and celebrate with my family and friends.

Long Covid has been recognised as comparable to Fibromyalgia and has, at long last, given sufferers validation and recognition of the debilitative condition it is. My symptoms consist of, but are not limited to fatigue, widespread pain felt in the muscle and bone, and extreme tender points all over, with my ribs being my most ‘fragile’ area. It also causes depression, headaches, issues sleeping and ‘brain fog’, where I just can’t think straight and/or forget basic information.

Fibromyalgia doesn’t have a cure. To manage the pain caused by the condition, I take a cocktail of drugs, which don’t extinguish the pain, but does lessen it I have also changed my lifestyle, changed the way I work and changed how I take care of myself to manage the symptoms.

Over the years, the way I have been involved in Christmas has changed dramatically to try and manage the pain and stress that impacts my activity. I used to manage the whole Christmas period for my large, extended family. We would have between eight and twenty people over during which I would organise, decorate, host, and cook everything. People just arrived, had a great day, left and I would do everything, including travelling to see friends over the festive season.

However, as my condition has progressed and my mind and body have declined into what I manage now, things have changed significantly. Overwhelming stress caused flare-ups of symptoms where I would experience more pain, and a more intense, ‘hit by a bus’, fatigue after the holiday season had finished. I began to lose my excitement about the days to come and my anxiety rose, because I did not want to let people down, especially my daughter, and this kept me awake at night.

Once I was diagnosed, 6 years ago, I was able to identify what was wrong with me and how to manage it. Since then, I have completely changed our Christmas days. I do very little, I have delegated all of the main tasks to my husband and daughter, (who is now 20 years old) including decorating and cooking and I have passed on the ‘hosting’ to the other members of my family. I still get very exhausted, and pain does increase, but the anxiety I had relating to the responsibility part has completely gone!

This year, I am hosting again though… but doing it very differently. It’s not until after Christmas day and, through my suggestion, is to become a ‘game day’ instead. There will be board games, console games, Taskmaster-type games and everyone can participate or not with any of them (which includes me). Food will be provided, but this will be ‘open packets and put on plate’ foods, so I don’t have to cook. Anything extra that needs doing will be down to my daughter who will be home from university.

I don’t visit friends anymore, or go to many, if any, festive parties, but my closest friends either visit me or take me out somewhere, generally for tea and a scone! So, things are different BUT I have always believed in quality over quantity and how I manage my Christmases now, is definitely top quality.

Merry Christmas all, and remember, there is no such thing as a ‘perfect’ Christmas, sometimes it’s just about doing what gets you through and the art of negotiation and delegation!