Christmas 2018 was rough- on my way home from an amazing trip to Nepal (we stopped over in Turkey) I got very sick. In reality I should’ve seen it coming & done something about it before I got on the plane. Christmas morning was spent in hospital with my lovely friend. Christmas afternoon was spent at my families house- I had a glass of squash and half a roast potato. You can’t predict when you will be unwell but you can pre plan for those occasions!
– Start cooking, prepping, as early as possible!
– Prep veg and leave in water.
– BOB- Bring your own bottle & dish.
– Buy or acquire some gadgets to help you cook.
– Presents- get as many as you can online.
– Sleeping- 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!
– 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!
– Dressing – 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 consumption- 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.
– Don’t do anything you cannot do or don’t want to do!!!
– Don’t make yourself broke trying to make others happy. DIY and personalised gifts are my favourite!!
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 and then move on;) SEE MY BODY IMAGE BLOG POST FOR MORE ON THIS. I get very nervous to see people when I haven’t seen them in a while & it’s mainly on the way my appearance deteriorates. Blue lips, dry skin & big bags under my eyes all seem to be signs I’m looking a little poorly. Weight gain!!!! Oh & I guess it’s my first Christmas with Tourettes! Prepare for some festive tics. When people haven’t seen me with Tourettes I almost feel like they’re waiting for it to happen. Or shocked by changes.
– 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
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!!!
– 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.
– 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.
Ask for help Be brave. People won’t know unless you ask.
A post by me in a local board
ASK FOR HELP! Things that take me hours and hours could take an able bodied person 10minutes. People won’t know you need help unless you express it. 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!!
It was completely overwhelming to have so many lovely people offer all sorts out to me. I had professional cleaners offer their time free of charge. Handy men and builders offering to install anyrhing I needed free of charge. A brand new mobility scooter ( worth a lot of money) gifted to me free. Incredible. Nice people do exist.
All in all this helped me prepare for Christmas a lot easier. I’ve had 4 doctors & hospital appointments this week- DRAININGGGGG!!! Try repeating yourself to every single medical professional you ever see. One day I woke up at 18:00pm another at 20:00pm- my point is, if I hadn’t ve asked for help or admitted I needed it, I would still be sat in a pile of rubbish in my room, my house would still be filthy and I wouldn’tve been able to shower!
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!
I’M STILL LEARNING TO MANAGE MY SPOONS! 12 a day. Not 2012.
Have a very Merry Christmas, ask for help, stay happy & look after yourself.
Heres to a much healthier new year!!!!!!!!!!!!!!!