So it’s Christmas Eve Eve today and everyone is rushing around getting their last minute Christmas gifts and food shopping. I, on the other hand am led in bed writing this blog post, waiting for Martin to finish his last half day at work before the Christmas holidays.
Christmas is such a busy time of the year, with everyone rushing around and not being able to think straight. I used to be like this. I used to love the hussle and bussle, the Christmas crowds, walking through the high street, with all the lights twinkling, hearing a Christmas singer and the smell of mulled wine, crepes and hog roast. But that’s all changed now..
Having a brain injury can limit you in so many different ways, ways you don’t realise until you are stuck in that situation and suddenly start to feel the fear and panic rise within you. I can no longer participate in the Christmas crowds, they move too fast for my unbalanced legs. I can no longer make quick decisions at the market stalls which are always so busy. I can no longer keep up with the same pace as before, I’ve had to ADAPT.. That big word right there, commonly used to describe your life changing when you experience a brain injury! You have to adapt to what you can do right now, so if you are tired, you need to rest. If you can no longer run, you walk. I am struggling the most with adaption because I don’t like feeling defeated, I want to be able to do all of my Christmas shopping in one day instead of one shop a day. I want to walk between the Christmas crowds instead of feeling the rush of anxiety as soon as someone walks too close to me. We need to remember these things will change with time 🙂
I seem to always start possibly negativitly? Maybe that’s just how I’m programmed but this is how my Christmas with a brain injury has gone so far…
Whoever created this little gem, thank you so much! I mean, having a brain injury causes a lot of fatigue, having Encephalitis causes even more fatigue as it affects the whole brain! So when I literally can not move out of bed, which for the past few weeks has been most days, I have managed to buy nearly every single Christmas present online, having it delivered straight to the door, #SpoonieService – the postman and delivery driver had got so used to me and my slowness they knew to wait a few minutes for me to get to the door and would joke that I was still in my pyjamas! I would definitely recommend this to anyone who finds the shops too stressful or atleast getting an idea of what you want so you can get in and out of shops with minimal stress! I found the whole entering card details extremely stressful, especially if I was having a bad day vision wise, but I realised a lot of places accept PayPal and you only have to enter a password for that! Result!!
AVOIDING THE CHRISTMAS CROWDS
Now this was probably the hardest one! But we seemed to be lucky 2 out of the 3 times we had to visit Bournemouth Town Centre. The first time we went was Friday 18th December and the centre was completely dead! We managed to get a seat in a booth inside the German Bar to have a mulled wine and a hog roast burger 😍 yummy! It was lovely and quiet and very relaxing compared to previous times/years we’ve been there- you usually can’t get a seat inside or outside.
We went into town again the next day and it was heaving!! This is when I struggled, I realised that I hadn’t prepared myself properly for how busy it would be and because a brain injury is invisible, no one can see it and some people can be very impatient to get past you. I used breathing techniques learned from a recent mindfulness course which helped me to cope better! I would suggest week days if possible or writing a list for each store so you can reduce as much stress as possible. Also always go with someone who fully understands your condition so they know not to rush you or cause you unintentional stress and remember to PACE PACE PACE!!! Rest whenever and wherever you need to!
So I really didn’t expect to have any problems with this except my hands don’t always work properly but after wrapping 5 presents, the fatigue kicked in immensely! I was crazy tired and felt useless for a good few hours after that mini present session. I couldn’t understand why. I was thinking how I was going to wrap all these presents by myself when I was getting tired so quickly when a great idea popped into my head!
– if you are a Spoonie/someone with a brain injury/someone with chronic pain/someone with a chronic illness you are used to spending a lot of time in bed as you get tired easily, so you are used to doing a lot of your daily activities in your bed so I decided wrapping presents would be a great idea because then I could rest/sleep whenever needed and pick back up when I awoke. It was a lot easier too as it relieved a lot of pain I had when sat on the floor.
So being festive is all a big part of Christmas, you’re supposed to eat, drink and be merry, but how can you do that when you don’t feel great? A lot of people with brain injuries or Encephalitis are on strong medication and can’t drink alcohol or are on specific diets so can feel like they are missing out but you can make great substitutes! Mulled apple juice instead of cider, alcohol free mulled wine, gluten, wheat, dairy, egg etc free mince pies and other Christmassy foods! I use Instagram for a lot of inspiration if I’m stuck. Having family and friends who understand your condition will help with your festive spirit as you will feel more at ease and less stress if you have others to share this with. Taking one day at a time and planning lots of rest will help.
Everyone loves a good party, especially a Christmas party whether it’s a work, family or friends party. It can be stressful and tiring for an able bodied person let alone someone with a disability. First of all you need to chose what you are going to eat, usually weeks in advance – now I have to plan in something that isn’t going to flare up my IBS, acid reflux, hiatus hernia, a migraine or sickness. I won’t know how I’m feeling until that day either so it’s just fingers crossed, luckily me and Martin work on a similar food plan so we can swap. Next you need to work out where it is and how you are going to get there and back because you can’t drive because you’ve had you’ve license taken away for epilepsy. Then you need to find an outfit that isn’t too many buttons as you can’t do buttons up anymore, you need to be comfortable and be able to go to toilet on your own with minimal problems. Then try to avoid all the bugs on the lead up. When you reach the day, I would recommend that you rest mentally and physically all day as you need to prepare for the evening. When you arrive there will be flashing lights and disco lights, which can effect epilepsy sufferers and people with light sensitivity like myself. The volume of chatter is so loud and you can struggle to hear what people are saying to you. When the music starts, it’s usually impossible to hear and if like me, your medication causes hot flushes, you’ll be flushing all night. But it’s not that bad! With learned breathing techniques, I calmed myself and lost most of my anxiety in the first 10 minutes and by the end of the evening I was comfortable enough to have enjoyed myself. I definitely had to prepare myself all day as I was exhausted the next day from those few hours!
DECORATING THE CHRISTMAS TREE
I wasn’t able to help put the tree up properly this year as again I was so tired but I made sure I could put the decorations on it. We have the same decorations each year and each one has a special meaning. Since my brain injury I have become very OCD so it took a very long time to get the decorations in the perfect place. I still move them around every day. It can be very frustrating living with OCD as you can’t stop until something is perfect and I can stress myself out until I end up physically sick. I (unfortunately much to everyone’s dismay😂) don’t have the stereotype OCD where all you want to do is clean. – I am very conscious of germs especially when I was first diagnosed but I have the type of OCD where I write lists usually about lists and need to have an order and time for everything! I get very stressed if I cannot complete lists or find a notebook or if something goes wrong. I have regular CBT for this, it is just something I have always done.
I suppose this was kind of how my run up to Christmas went and some advice on how to keep your Christmas stress free 🙂
P.S it was Mine and Martins 5 year anniversary on 19th December, he has been so amazing through this whole horrible illness, encephalitis usually ruins relationships but this has made ours stronger!! He got me an early upgrade on my phone, so I’ve got a sparkly new iPhone 6s which I’m doing my first post off of it now woo! And I have to share these gorgeous rainbow roses he got me!! 😍🌹
Merry Christmas and have a lovely day xxx