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Christmas time has a special meaning to all of us. To me, it is so much more than the superficial exterior it has become over time. It is ultimately about family, love and laughter. It is about being thankful for what you have, especially for your health and the health of those you love. There is no greater gift you could have. For those reading this who may not have a true insight into chronic or incurable illness, I truly hope you can appreciate your good health in every way. Health without doubt provides you with the eligibility to build a consistent and fufilling life. Health is what many individuals and families, including myself, will be praying for in the future. Something so precious, that so many will go without, not only at Christmas but each and every single day. For years, my wish at Christmas time has always been for a new body, better health and for more doctors to have an understanding of my complex illnesses.
I personally love the thought of Christmas. I love the meaning behind Christmas, watching home videos of when I was little and relished in the magic, the decorations, the films, the music, seeing my family, the nostalgia, the thought of young family memebers getting excited over Father Christmas, my dog getting so excited over his toys and the overall community spirit of Christmas. It was always one of my favourite times of the year, however the more ill I became the less I felt that love. I am however, trying to reignite those feelings and reconnect with my inner child the more I coach myself to cope with my long term, chronic illnesses. I want to feel the celebration just as much as an able bodied individual.
As exciting as Christmas may feel to many of us, it does not dismiss the pain a chronic illness implements into an individual's daily life. Sadly, an illness will continue to feel debilitating whether it is Christmas, your birthday or any other random day of the week. Our suffering doesn't disappear just because Christmas has arrived. We unfortunately can not push our bodies to do more just because Christmas has arrived. Our pain does not disappear just because we have plans, nor can we force ourselves to feel uplifted and happy just because of the festive season. It is lovely that others take pride in doing so, but it's not always possible for people who live with chronic pain, disability and illness despite their wish to do so. We take from the day what we can and hopefully along the way, create some happy memories despite our daily obstacles to overcome.
As much as those who have chronic illness may try to uplift themselves during the Christmas season, it is usually with much difficulty. Sometimes we try to do so for our own sake and sometimes for the sake of our families. We do not want to nor intend to mope or look sad over the festive season, however it is not particularly easy to remain and force happiness and joy when consumed with such intense pain, head to toe. Especially during a time where joy is aimed to be around every corner and celebration is a key element. Where if you do not seem joyful, you must be ungrateful. We try our best to put a huge front on, yet sometimes our efforts fail because there is only so much acting you can do when living in daily pain. Chronic illness ultimately causes unwanted limitations upon your everyday life with unpredictable symptom changes, hour to hour. This bittersweet factor however, tends to be more frustrating during this time of the year.
Now I do not want to put a downer on the thought of Christmas. I am just being a realist from my own experiences as someone who has spent the majority of their Christmases, living with multiple chronic illnesses. Where symptoms have done their upmost to cause a ruckus and rear their ugly head. If you are chronically ill and aim to enjoy it, that is fantastic. I think that is what we all wish and hope for. However personally, putting an unrealistic amount of pressure on myself to get through the day without tears, pain or envisioning an 'idealic Christmas' is something I am not aiming to reach for. More so, because I hate the rejection that may come with that if it does not go to plan. Chronic illness has taught me over time to never have any expectations. In doing so, I do not allow myself to feel incredibly let down. You just have to do what you can do and ultimately, give yourself a huge pat on the back for whatever that may be. I manage to travel five minutes round the corner to my grandparents house on Christmas Day and I feel like I have travelled half way up the country by the time I arrive. So much goes into every little hour, from getting ready, to showering, to the smallest movement that our bodies will always, well and truly pay for.
If anything, our high and consistent pain levels have the potential to become even worse during this festive period. I know that personally, I do not look at my condition has containing 'pain flare ups'. This is usually because there is never a day where my pain is less than a 7/10 on the scale. It is always consistent, always there and is something that I have unfortunately carried around on my shoulders from the start of my teenage years. Yes, it has become a lot worse overtime, but it just feels normal to feel as awful as I do and to carry this weight around. It can not be switched off no matter what and those with chronic illnesses have to voice that to those they feel should know, especially when feeling overwhelmed with a busy schedule. Not only do schedules become busier in the month of December, things like the colder weather can also have a huge knock on effect in our ability to cope with our pain levels. I spend a lot of my time bed bound in the winter months. I feel fatigued and lifeless from doing the square root of nothing, bar my usual dosage of coping with chronic pain in my entire bodily structure. Life is a matter of balance in chronic illness and whilst we take the good with the bad in most circumstances, we also can not dismiss our pain during the Christmas season. It is also wrong for others to do so. Just because we may look ok on the outside, doesn't mean we are feeling good. We are just putting on a brave face to get through the day without desperately drawing much attention to our illness, pain limits or disability despite the fact we might feel like we are breaking.
Healthy and able bodied individuals may feel drained around Christmas, let alone the body of someone with multiple, complex chronic illnesses. I have found it so hard over the years to fake my pain levels in front of others and a lot of the time, I have crumbled and have had to put myself in bed. Despite not wanting to do so. During the festive season, those with chronic illness still need to continue to make rest a priority. This doesn't mean others should distance themselves or fail to invite us to join in with festivities. We would love to attempt to join in with small occasions or outings, yet the chances of our pain allowing us to participate may be incredibly slim. It doesn't mean we have to be excluded, further plans can be adapted or made to help us feel involved, possibly like coming to visit us at home. However, the thought behind an invite may mean more than enough to us.
My pain and disability has like usual, deteriorated a lot over the last year so again my Christmas action plan needs adaption. Pacing is something we all attempt day in, day out. During the busy holiday period, it becomes something that needs perfect precision. Typically there is already so much you need to do, or possibly even want to do. A lot of the time, we may waver off the path yet it does help to attempt to be as strict as possible with pacing during this busy month. This year I am attempting to prioritise what needs to be completed, first and foremost. I am trying to spread my responsibilities over the course of a few weeks so that they do not feel as overwhelming. Although the chances of this going to plan may not turn out how I envision them, a plan of action makes me feel better and slightly more organised. Ultimately, at the end of the day my pain, illnesses and symptoms will be the overall boss who will dictate and decide what I am capable of. No amount of will power or mindfulness can change that fact, however when I feel slightly more able to complete the tasks on my list, I will try my hardest to dedicate a day to do so. I am also consciously aware and aim to not jam pack my schedule because ultimately, I am the only one who will cope with the pain that comes with that. I hate missing out, yet I also hate the thought of making my day any more difficult to cope with than it already is. So I will do my upmost to find that happy medium.
In the lead up to Christmas, there has been so much I have wanted to do with my limited energy. I have just had to accept that I am not superhuman and that my illness and disability will not allow everything to be a success. With things like hospital, travelling and appointments to also cope with on top of Christmas, the energy levels are just slim to none so I have to out weigh their importance. I am trying to adapt what I can achieve, even on my bed bound days where my mind feels active but my body has reached its limit. Although it can feel incredibly frustrating to live in a body that feels against you, your mind is still very capable and you will find something to occupy your Christmas spirit with. I will also stress that it is not a bad thing to ask for help from others. If they already have an insight into your struggles in being disabled or chronically ill, they will understand that it is not silly to ask for their help. Despite you convincing yourself that it might well be. With things such as wrapping presents, Christmas shopping, cooking or baking they may find an area where they are able to offer their services. Any little helps and it doesn't hurt to ask. Maybe even make a night of it with friends where you can also spend time with them, watch films, listen to Christmas music or play games.
Christmas only comes around once a year and the intentions behind it involve ending the year on a celebratory high. So if you are lucky to be around family and friends, try to take from the day what you can. You won't be pain free at all, you may still have many tears over the festive period but try to see the good in the moment. Maybe that will be in friends coming to visit you at home, being around family you haven't seen in a long time, crafting or watching Christmas films. It may be painful to be lying in bed during Christmas, whilst you hear your family downstairs roaring with laughter but look towards the positive. Some people will be completely lonely on Christmas. Many of us are lucky to have the love of our families surrounding us despite our battle against complex illnesses. I was very fortunate last year that during my time in bed, I had multiple family members take turns to come and sit with me to chat and keep me company. Which was lovely as my body felt too weak to relocate myself down the stairs at this point. I still got to join in and make conversation, without actually having to leave my bed for a few hours.
Whilst we are quick to forget those who may be suffering at this special time of the year, take a minute to say thank you for what you currently have in life, no matter how big or small it may seem. Some will not be so lucky and it is those people we must think of at Christmas time. Whether you are chronically ill or not, there is always someone worse out there. My own example being, from the age of 9 I have struggled to digest my food. As my illness as progressed, it now means that I know can only digest a few mere bites without the symptoms of stomach and intestinal dysmotilty acting as a constant pseudo blockage to all attempts of food and drink. This without fail, puts me in bed everyday. However, despite the pain that brings with every small meal, I am the lucky one because many are fed through tube feeding with my illness. Although that has been proposed to me as the next step, it is not my present and for that I am very lucky. There will be many who will not even manage the handful of bites of Christmas food I am lucky enough to eat. There are many who will be spending Christmas in hospital or in a poor country. There is always something to be thankful for within your pain and lifestyle. I think acknowledging those aspects continuously keeps you grounded within your struggles and keeps your fighting spirit alive in knowing it could be worse. I don't feel grateful for my pain, I don't feel grateful for daily suffering, I do however feel grateful that it is not any worse than it could potentially be right now. It is always about finding perspective in the circumstances that feel against you.
Last but not least, Merry Christmas to all of my blog readers. I will be thinking of you all, hoping that this Christmas despite your pain, you can engrave some lovely and joyful memories. I hope and pray that your pain will not rear its ugly head in the worst form and I thank you from the bottom of my heart for your support this year. Thank you for taking the time to continuously read these lengthy posts of mine, to get in touch with me, to share your personal stories and for sharing my writing on social media.
You are all incredible individuals who I have the upmost respect for and I wish you nothing but the best.
2014 CHRISTMAS POST
*If you are able to part with a small donation this Christmas, it would mean the world to me if you could please donate to a Ehlers Danlos UK. It will ultimately, help to make our invisible, visible and go towards raising the awareness we are in desperate need of.