For the past 7 years, I have always been extremely apprehensive for the festive period to arrive but more so, for Christmas day to arrive. I think its fair to say that this might be something that others find difficult to fully enjoy too if they are in similar situations where illness overtakes the spirit of Christmas or festivities. Whether you are chronically ill yourself and can relate to this post or you are a parent to a child who is chronically ill, this may hopefully give you an insight into the down moments that can come at such a joyful time of the year for so many.
One Christmas that really stands out to me where I felt like this illness had really reached new heights of getting the better of me was on Boxing Day in 2010. I was sitting at the table waiting for the family to arrive for day two of Christmas and I just remember feeling like I was drowning in how isolated I felt. I wanted to sob my heart out over how overwhelmed my illness was making me feel so I grabbed my phone, joined an EDS forum, wrote a thread and had a reply within minutes from such a lovely positive girl of similar age. It's safe to say that message gave me hope to get through those next few days when all I wanted to do was bury my head in my pillow and cry. I had finally spoken to someone with the same illness and it just gave me the confirmation I'd been searching for that it wasn't just me feeling so out of touch from life.
Once October ends, Christmas (as well as the thanksgiving holiday for those that celebrated last month) seems to swiftly approach us and it's not always easy to just forget pain and enjoy the moment. Pain seems to overall anything and everything at the best of times. It's an evil dictator the majority of the day. Schedules tend to become busier around this time of year, fatigue and pain seem to surge. It's often hard to adjust from being in bed to having family or friends constantly visiting, possibly some shopping trips out and getting yourself organised for Christmas. It can feel overwhelming and draining for people with chronic pain. Emotions may run high for some of us and moods can be low from what pain they may be experiencing.
Some people, including myself find it hard to want to celebrate whilst in pain, every year it passes and sometimes I know for me personally, I've taken the day for granted. Only looking back do I realise nothing in that moment would have changed my pain, but my attitude could have been adapted. I wont be hard on myself for feeling like this in the past because it was and still is a learning experience. My mum would always say 'treat it like any other day' but I didn't want that, Christmas is supposed to be a really special day of the year and I wanted it to feel good and be enjoyable. Instead I felt isolated and abnormal with all the pain I was experiencing. Pain whilst eating, drinking, sitting and standing, fatigue from doing absolutely nothing. This is something I deal with daily but it just felt even more bitter-sweet and unwanted at Christmas.
I have experienced the majority of the festive seasons in my life as someone who is ill. We have lots of family Christmas videos of the 90s and early 00s and in every year without fail, even as a child I had either been up all night being sick with stomach pains, having pots tremors (which obviously made no sense back then) or had a chest infection, cold, flu symptoms. My poor Mum used to say Christmas Eve was like a hospital ward for myself and my brother. If it wasn't me with something wrong it was him, or both of us if Mum was unlucky.
I definitely count my blessings daily, it always helps me to keep a perspective on things in my life, but especially at this time of the year. Things such as family, their health and happiness, having a roof over my head, food on the table and being more fortunate than some people and family's in this world. However for a long time, even as a child despite my family's huge efforts, pain has always ruined my experience of Christmas Day. However over the last year or so I have tried to adapt my thinking pattern and instead remind myself that when this time of year eventually arrived I would instead try to figure out the aspects I love of Christmas in advance. These are things such as; the decorations, the family being together, Christmas music. I'm glad I can now give credit to the parts of the holiday that I can take some enjoyment from and emphasis on making the most of these things rather than focusing on how difficult and unpredictable pain may make the day.
Holidays and poignant points of the year can bring out many emotions in someone who has a chronic illness. Not only does the New Year loom, where you know that when people wish you a happy and healthy New Year it contains small print that this probably doesn't apply to you, it's also another year over experiencing pain whilst being quite sure to enter the next with just the same thing you wish you could leave behind. That might seem very negative, but personally I have found over time its easier for myself to try to digest and accept my illness in this manner over believing there might be a change and getting more upset in the long run. Chronic means long term or incurable after all.
The majority of us may not be able to actually join in with aspects of Christmas or New Year parties, festivities, physical shopping experiences. This can often make you feel worlds apart from your friendship groups or normality for someone of your age when the general talk of the month or season is of these topics. Instead of dwelling over something you can't change this year maybe its easier to take the approach of being happy for those that do get to experience these points rather than jealous. I used to often rack my brain with thoughts over why I couldn't do what others were, don't get me wrong at times it can still be a really sensitive topic to adjust to. However, right now I just have to accept that its not going to happen at this point in my life. If I can't change it at this moment in time, I shouldn't let it worry me, get the better of me or drag me down. That perfect saying about holding a grudge comes into my mind, 'Holding a grudge is like allowing someone to live in your head space rent free'. For the circumstances that can come with chronic illness, if you can't physically change them on a certain day or point in your life, let it go for now.
This year rather than focusing on how much pain may be interfering in my day, I am going to try and think of the positive aspects I can take from the day instead. 7 years on living with daily controlling pain, I have come to accept that this year pain will be no different and it's better to embrace and acknowledge its presence rather than fight it. Instead of doing what I did in the past which was focusing on how much the pain was ruining my day I will take the approach of encouraging and focusing on the parts of the day that make me happy. This is not something I have tried in the past so this is definitely a new approach and ball game for myself.
Everyone knows their limits and how they deal with a situation fittingly. Some people like to be hopeful, some positive, some negative. We all deal with the cards we a dealt in life differently and hopefully find our feet in coping in the suitable manner with our own approach. It's taken me a really long time to find my own technique of dealing with illness at major points of the year. These elements and strategies can change daily, like I always say chronic illness is a daily battle and everyday we adapt, learn, change, grow and most importantly, we have no choice but to find a way in which we cope.
So below I will list the three things I hope will bring me joy this Christmas, feel free to make a mental note of your own or leave a comment stating anything you love about Christmas or what you are looking forward to despite pain this year. (I know a lot of us will be thinking and wanting a new body, heat wraps, V pillows, pyjamas!)