Christmas 2018 was rough- on my way home from an amazing trip to Nepal we had a lay over in Turkey and I got off the plane as I was very sick. In reality I should’ve seen it coming & done something about it before I got on the plane, but I was just a girl who wanted her bed.
I spent Christmas morning in a hospital somewhere in Turkey with my lovely friend, thankfully due to the time zone differences, by Christmas afternoon I was with family asleep on the sofa- half a roast potato down and a glass of squash.
Most Christmasses for me tend to be a little rough as someone with a chronic illness- I honestly am in awe of how my mum managed to cook, host, and be simply amazing each year with chronic illnesses herself.
Now its safe to say I would not be trusted to be in charge of Christmas day as my body is very unreliable but I would most definitely make an amazing plan for everyone to follow.
Here's a little helping hand if you're feeling a bit overwhelmed with the thought of your first chronic- mas.
delegate jobs-
it's christmas no too many cooks spoil the broth rule
– Start early
cooking, prepping, as early as possible!
– Prep
your veg and leave in water.
– ByoB-
Bring your own bottle & a dish.
– gadgets
to help you cook.
– Presents or secret santa
get as many as you can online or do secret santa
–nap
if you usually have an afternoon nap still do! Everyone will be full of food anyway. If your Christmas is anything like the typical one- the dads, uncles, grandads will all be asleep on the sofa by 5pm anyway!
-Games
– Playing games with brain fog can make things exhausting! Watch others play or join in but don’t feel pressured. You could use this time as nap time!
– Clothing
If you know me well you’ll either see me in a dress or pyjamas there is very rarely any in between, stay comfortable but feel pretty.
– Alcohol
be careful, tablets and all day drinking do not mix particularly well. I’m not going to tell you not to drink because to be honest I’m a uni student and I’d be lying if I told you I didn’t binge drink every now and then. Nothing compared to other students lorddd Brits have a problem. But be careful. Maybe drink one out of three festive parties! Find a drink that doesn’t make you feel worse (I assure you mixing bacardi and tequila leads to a flare up) some people struggle with wine. For me that’s a safe drink. Know your limits. Look after yourself!
– Avoiding certain foods-
dairy wheat anything that makes your condition worse, find good foods. Spend a little more if it means it saves you prep for example.
– Organise
yourself or ask for help to do so. Pre planning can reduce anxiety greatly.
– say no
Don’t do anything you cannot do or don’t want to do!!!
– money boundaries
Don’t make yourself broke trying to make others happy. DIY and personalised gifts are my favourite!!
-photographs
SEEING PEOPLE YOU HAVEN’T SEEN IN A WHILE CAN BE SCARY!
– Don’t feel obligated to take tonnes of photos if you’re struggling to stand on your own two feet. Forcing a smile isn’t always needed! Take one photo to document yourself being there
DRUGGGGGGSSSS
– Now I’ve got your attention… Stock up on your medication !!! Please. If you’re on regular medication and you’re anything like me this is very important! I’m very very very bad at medication management. I don’t take them properly. I lose them. I take them twice. I forget to order them. I run out. I don’t take them regularly. Over the Christmas season the UK practically closes. Scrambling around in all your hand bags on Christmas Eve trying to find those extra tablets. (covered in fluff and a little sticky) PREPARE! Get your tablets sorted out before hand, ask for a reminder to order some more. Get them delivered. Blister Packs. Get someone else to pick them up! Anything that could help you. The worst thing is being on hold to 111 (unnecessarily wasting their time as this could’ve been avoided)
Recently I had a mini Christmas with my uni friends. I must say we are all very good cooks & despite the shouting in the kitchen & laughing at each others attempts the food was amazing & we had a lovely time. This gave me a bit of an insight into how my energy levels could be at family Christmas events. I chopped a lot of veg – my fingers are very hypermobile & they were feeling rather sore. I needed a lie down on the beanbag before we even put the food in the oven. (I kid you not we started getting ready about 1 o’clock and dinner wasn’t on the table till 11pm!!) If I had kids on this day to deal with LOLLLLL I’d be struggling!!!! I drank too much red wine- I had a headache. I took on too many responsibilities. Something I know I do a lot. Saying no or explaining I can’t results in me and my ‘boom and bust’ way of living. SAYING NO IS VERY HARD. As is the honesty that comes with it. I would suggest pre- planning in rest is very important.
– Appreciate
all the love from the people around you & you’ll have a better day!
Rosemary stuffed chicken (a homemade veggie wellington by me for us veggies)
Student presentation for sure!
The best cauliflower cheese I have ever had
-pacing
Try not to over do it. Have some down days booked in too- down doesn’t mean sad or low, it can be very beneficial. Ask for help if it’s needed but also accept things may not be perfect.
CHRISTMAS IS OFTEN CHAOS!!!
-driving
– Be the designated driver! Often people would hate this. I like driving, although I don’t drive if my tics are bad or I’m extremely fatigued, so have a good taxi number & some cash too! If you drive you can leave when you want. You can avoid overdoing it on the alcohol & stop others drinking and driving. Having a car has become so good for me to be able to leave when I would like. When I am tired or have had enough social interaction.
Be a little selfish
– Make sure if you have tonnes of people staying you still get your own bed. Just because it’s nice to offer your bed to the guests – be a little selfish and know if you don’t get a good sleep you will struggle more.
– Flu Jab
if you are prone to flu, get a jab to prevent it!!! Don’t set yourself up for failure.
paper plates
– If the pressure comes down to you to wash up- why not get some fancy paper plates and serving dishes!? They do really pretty gold ones and Christmassy ones – it’d save you some spoons 🥄 (Both literally and emotionally)
The spoon theory..
ASKING FOR HELP! This week has been particularly rough- not the foggiest clue as to why!!! My first universal credit and PIP- ‘Personal Independence Payment’ payments came through- I was feeling a little rich (rather humorously as the amount you get is pennies – unless you’re an ex offender!!!! (I’ll save a fun fun fun PIP post for another day) I decided to write a Facebook post in local community boards offering to pay someone for their time. The response was incredible and I had so so many offers of complete strangers willing to give up their time to help me, free of charge. I was very embarrassed to post this but in hindsight I’m so so glad I did.
A post by me in a local board
ASK FOR HELP! Things that take me hours and hours could take an able bodied person ten minutes. People won’t know you need help unless you express it. I've asked for help lots before and If complete strangers are happy to help out then so are your loved ones!! The risk of falling over or injuring yourself is not worth it particularly in the cold!!
Blankets and dressing gowns are a must!!! Take them with you to wherever you visit (keep one in the car;) if people have a problem with you sitting in your comfies because you feel unwell then they are the problem!
Have a very Merry Christmas, ask for help, stay happy & look after yourself.
Heres to a happy new year!!!!!!!!!!!!!!!
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