As we enter the month of December there is a buzz of festive activity almost everywhere you turn. From twinkling lights to late night shopping, carol concerts in the local churches to mince pies lining the shelves of supermarkets. Suddenly the festive television adverts begin and children work hard for their annual Nativity play. The joy of the festivities builds throughout the month and advent calendars are opened all over the country, counting down to one special day...Christmas!
This is undoubtedly a time of year filled with kindness, excitement and joy. It is also a time filled with food, social gatherings, late nights, bright lights and lots of gifts. Just like most people, this used to fill me with such glee. To me, the whole month and its traditions felt like the perfect way to draw an end to the year. But, as my health took a drastic turn for the worse, unfortunately this enjoyment wasn't something easy to experience.
I have a long list of complex, life-limiting illnesses. You may be wondering what this looks like. Well, I have multiple tubes in my body as my many of my organs no longer do the jobs they are supposed to. I have to take intravenous medications multiple times a day as well as 16 hour infusions of intravenous nutrition, and require oxygen therapy as I am prone to seizures and fainting. I am reliant on a powered wheelchair and I often suffer weakness in my arms as well. I also have a severe sensitivity to light, I am unable to eat or drink, I suffer spontaneous allergic reactions and chronic fatigue. Although this merely scratches the surface, I believe it is enough to help give an understanding of why Christmas isn't so easy for myself and hundreds of other children, teenagers and young adults throughout the UK suffering with EDS.
My Christmas Challenges
A huge part of Christmas is food; whether this is Christmas lunch or parties with friends, it is something that is not easy to participate in due to the fact I cannot eat or drink. Although I am extremely lucky that I have very supportive and understanding friends and family, attending meals and not being able to eat like everyone else can be emotional. Due to the severe nausea I experience, having to sit around others eating is also often a difficult task.
Christmas is a time where the streets are filled with beautiful lights. This is something that extends throughout the community and holds fond memories of times when I was younger. We would drive around the villages in awe of the incredible displays created and I would see which house was scattered with the most florescent lighting like I was the judge of my own make believe competition. Because I now suffer seizures that can be triggered by flashing lights, this is something I no longer can enjoy. I hold onto to the memories of previous years with a grateful heart, thankful that I could see the lights and have memories to cherish.
Planning ahead
Unfortunately, with Chronic illness, planning ahead is not straight forward. We never know what I will be able to do in a few days' time, let alone longer! A perfect example of this is that I am writing this blog from my hospital bed. I was admitted over two weeks ago when I came in for routine blood tests as I had been feeling a bit more unwell than usual, something we put down to exhaustion after the incredible holiday I had just returned from. As a result, I missed my Nan's 75th birthday celebration, a chance to see the Spanish horses of Vienna in London (which were a birthday present) and Laura Mvula in concert in Bristol. This same issue applies to meeting with friends and family over Christmas. Last Christmas I was very fortunate to enjoy most of Christmas Day (although I ended up in A+E for the evening) whereas the year before I slept from Christmas Eve almost straight through to Boxing Day. It wasn't until my parents told me I had missed the whole day that the gut wrenching feeling kicked in, knowing that Christmas only comes around once a year and my body had failed to recognise that.
It is important to draw attention to is the impact severe illness and disability can have on close family and friends. I have a brother who is now thirteen and I feel very lucky to have such a close relationship with him. Christmas has always been a time we both love and shared together. We spent many Christmas Eve's tracking Father Christmas, decorating the house with snow sprayed branches to hang decorations and deciding on what presents he would like. It's very difficult to not feel guilty knowing he would have been disappointed I wasn't awake to share Christmas with him.
Despite these difficulties there are many things about the festive season I adore; watching the classic Christmas movies, carefully unwrapping all the precious decorations we have collected over the years, hand writing cards and catching up with people I don't hear from so often, buying thoughtful gifts for friends and family then seeing the appreciation in their face, helping where I can to prepare the food for everyone, sitting by the log burner and taking in the excitement around me. This is only possible because my friends and family have been able to work together with me to find ways to make Christmas more 'chronic illness friendly.'
Top tips for creating an inclusive festive season
1.Instead of only going for meals with friends, we have evenings playing board games instead (nothing beats an intense game of Monopoly!) and cards whilst watching films.
2.We have had some great gingerbread house decorating competitions and attended different Christmas fayres and carol concerts. I have many friends that love arts and crafts like I do, so instead of hitting the hectic shops and bright lights we have stayed in and made Christmas wreaths, flower arrangements, Christmas cards and homemade gifts.
3.It is great fun to invite friends and family for a team quiz and the healthy competition can make for a fun filled evening. This is something I hugely appreciate. Keep in mind It can sometimes be hard to ask this of people so when friends offer, knowing I will really appreciate it, I am very grateful. It makes me feel really valued and brings back the Christmas spirit.
I truly believe that every person brings unique gifts to the world and the people surrounding them. I strongly believe that no person should be overlooked because they have different needs to what is seen as 'normal'. If you have a friend of relative that has an illness or disability I suggest being totally open in asking what they would like to do as an activity or what help they might like to make their own Christmas dreams become reality.
There are so many people and many young people who face challenges beyond anything imaginable and going that extra mile to support them can be life changing, whether that's helping practically or donating to a charity like Dreams Come True, a wonderful charity dedicated to granting the wishes of extremely unwell children and young people age 2-21. Christmas can still be filled with the happiness deserved for these brave children with help to give their dreams, often the best gift possible and whole heartedly deserved! Visit their website now to donate http://www.dreamscometrue.uk.com/
