Christmas is a funny time of the year. It’s meant to be a ‘holiday’, but it ends up being a sack full of stress for most people. Buying presents, Christmas dinner, sending Christmas cards (and trying not to forget anyone) and more. However, when you live with a chronic illness there’s more added stress. The stress of actually being well for Christmas. If you’re not it not just shitty for you. It also puts a damper on the festivities for your family and friends.
Obviously, nobody really has much control over whether or not they get sick (it would be great if we did!) but around Christmas time it’s extra tricky. There are multiple sicknesses flying around. Cold, flus, stomach bugs, chest infections that turn into pneumonia to name a few. When your immune system is already weak it’s pure dumb luck if you make it through the winter months without catching anything.
For me I’ve been in the situation where it was looking like I was going to be spending Christmas in hospital. Luckily I always made it out just in time, a few times on Christmas eve. I’ve also had many Christmases where I just haven’t been well. I used to always say that all I wanted for Christmas was to be well enough to eat my Christmas dinner. Now I try to just ‘go with the flow’ and if I’m well I’m well, if I’m not I’m not.
I haven’t had a mad dash home for Christmas in a while, but this year I’m cutting it fine once again. Four weeks ago, on the 28th of November I was admitted to hospital for a central line infection, and I’ve been here ever since. This has by far been one of the most difficult and crazy admissions I’ve had in a long time, and that’s saying something! What made it more difficult is that I’m the whole way down here in Dublin, and my family are at home in Donegal. On the other hand, all my consultants are here, and they know me so I’m being well looked after.
When I was admitted and they found I had the line infection I thought I’d be out in two weeks, after two weeks of antibiotics. I got a new line put in and everything was going good and then I decided to form a blood clot in my neck. This led to me being put on blood thinners, so a few extra days in hospital while they figured out the correct dose to send me home on. Then, me being me and liking to keep things exciting I decided to start bleeding from a tiny wound in my thigh, and when I say bleeding, I mean bleeding. It was actually crazy how much blood was coming from such a small wound. I bled through multiple pressure dressing and those absorbable dressing pads. The nurses had to give me a hospital gown because I bled through all my pyjamas. I actually went through eight hospital gowns! After bleeding like that for a full day and night I was taken off the blood thinners, but I continued bleeding. I bled so much I needed two blood transfusions. This was a new experience for me so I suppose it was kind of cool adding it to the list of infusions I’ve had, but it was also really scary. Finally, I stopped bleeding. This fiasco meant the coagulation doctors had to go back to the drawing board and decide on a plan that tackled the blood clot in my neck, without causing me to almost bleed out….a week before Christmas day.
While all this was happening, I had end of semester exams and assignments due. Of course, I would have been more than eligible for extenuating circumstances, but the thought of pushing all my exams and assignments to next year made me feel physically sick. I asked for an extension for one of my assignments an essay that I had thankfully already started (being organised comes in handy sometimes). I then had the minor issue of the group assignment for that same module, at that point I knew I wasn’t going to be out in time, but thankfully my group was amazing and I was able to do my bit in the group project from my hospital bed. The last part was a face to face exam. Before the whole bleeding incident, I was sure I would be out in time for it as it was on the 20th of December. I actually was discharged on the Friday before, but then I started spontaneously bleeding. When I was still bleeding on the Saturday I thought there’s no way I’d even be allowed a few hours out to do the exam if I don’t stop bleeding. Realistically if they hadn’t managed to stop the bleeding by then I’d probably have been in ICU or worse…. When the bleeding stopped and I had my blood transfusions I knew I likely wouldn’t be discharged by the Wednesday (exam day), but I thought as I’s stopped bleeding I could get out to sit the exam and come back. Unfortunatly, because I had been taken off all mu anti-clotting meds and I still had an active clot in my neck they couldn’t let me leave the hospital in case of thrombosis. I found this out on Monday evening. I know, I could have left it, but what had been keeping me going all the previous week was studying for this exam. I don’t have control over a lot of things in my life. When I have to be in hospital or even just due to not feeling well I have to miss out on things. Over the years I’ve found I can have a certain amount of control over my education. I can study, learn, do assignments (most of the time) and exams whether or not I’m in hospital. There’s never really been an issue. The problem with this time was there was only 24 hours to get it organised for someone to come out with the exam, supervise me doing it and bring the exam back. I new this was a big ask of my lecturers at UCD, but I also new if I didn’t get this particular module finished I would never be able to relax and recouperate. It would be hanging over me all over Christmas. Also, as I had nothing else to really do except study and watch stuff on my laptop I felt I would never be more ready to take this exam than I was. I felt physically well enough to do the exam, if I didn’t I would have asked to defer it as I also have a fear of failing exams (weird, I know). I spent all day Tuesday calling, texting and emailing everyone I could think of who could possibly help. Initially my lecturer felt it wouldn’t be good for my health to do the exam, it would be added stress. I needed her to understand that not doing the exam would be bad for my mental and physical health. Finally after I was told I needed a letter from my consultant to state that she felt I was physically well enough to do this exam, and a letter from the senior nursing staff to say they were ok with someone coming in to supervise the exam. I got these easily enough because the ward staff are amazing and were so supportive of me getting the exam done, and my consultant is always amazingly supportive too. Plus, they all knew that I needed to get the exam done. So I did my Biostatics 1 exam in the hospital and I’m so glad it’s done, because Biostatics makes me stressed.
After the exam it was Christmas. The exam and studying for the exam had kind of taken my mind off the possibility of being in hospital for Christmas, but I still have another day. So if you have a chronic illness, or you have a friend or family member with a chronic illness I have one word of advice. Christmas is just another day. It’s not nice feeling unwell or being in hospital any day of the year, but don’t put stress on yourself to make one day of the year perfect. You can do all the Christmassy thing any day. Maybe a day you feel good so you can fully enjoy yourself.