Fatigue and Christmas: Managing Expectations

[This is written based on what helps me, with my symptom levels. It isn't magic one-size-fits-all solution, but hopefully it will be helpful for someone.]

Christmas with limited energy get's complicated very quickly! You know that doing the whole 'standard' routine is going to be too much, but also don't want to let anyone down. You feel the weight of expectations both from yourself and from others.

For me, the most important tool has been communicating. And by communicating I don't just mean 'telling people what you can and can't do'. To work it needs to be a much more two-way thing.

So here, in no particular order are some things which help me:

1. Remember: Things which are blindingly obvious to you can be totally incomprehensible to someone else - so be prepared to explain 'the basics' right down to what you mean by 'bad day' or 'can't cope'. And only say you are fine if you really are! My stock phrases to replace the 'I'm fine' lie are "Given how busy I've been, as expected." or "All things considered, not too bad"
2. Pre-agreed visual cues (like coloured wristbands, flashcards or hand signals) to let someone know your status without it needing to be talked about also makes a big difference. No-one (including me!) want's to spend Christmas discussing my symptoms, so having a non verbal way of communicating the key info that might otherwise be invisible to them means we don't have to talk about it, but they still get to understand!
3. Do not attempt to discuss your adapted Christmas needs if the convo is already heated. Save it for when everyone is relaxed - perhaps over a Christmas-y snack.
4. Instead of saying "I can't do that",  say "If I do that, then this.....". This helps people understand you haven't given up, increases the chances that they will understand, and also opens the door for finding sensible solutions. For example: "If I try to spend all of Christmas afternoon with everyone, I will get so exhausted I'll have a meltdown or shutdown. But if I spend half an hour with everyone, then take a break to recharge, and then come back again, I'll be able to join in a lot more and I think it will make things better for everyone."
5. Involve family in the decision process. For example: "I know we always do a, b and c. But this year I really won't cope with them all. However, I reckon I can do two out of the 3, and have a nap during the the other one. Which 2 do you think we should prioritise?"
6. If there is a part of the day that someone really wants you there for, talk about what would be needed to make that possible. 
7. Plan adaptations during an event that will maximise your ability to join in. For me, being able to lie down means I can spend a lot longer 'joining in'. Planning the room with a 'Horizontal Hannah' space makes a world of difference.
8. Consider alternatives and be prepared to compromise. For example, if I think I will only cope with around 30 minutes at a time with guests, I ask others for input on which 30 mins they would prefer me there for - as guests arrive? in the middle? as they leave? That way people who will be affected by my need to limit involvement are a part of planning it.
9. Think of ways you CAN be involved remotely if relevant: videocalling. Asking for, sending, and commenting on photos. Being positive and interested about aspects of Christmas you won't be able to be involved in. Perhaps the family go on a walk, and there's no way you will be able to join them. But could you have a treat up your sleeve for when they return? Or could you suggest a photo challenge for them on their walk, which you can then have fun judging when they get back?
10. Could other people join in with something you do to help you recharge? (listening to audio books while doing a jigsaw is one of our family Christmas traditions).
11. Pace. And let people know you will be pacing. This means not 'keeping going until you crash out completely' but doing short periods of challenging stuff, then withdrawing to recharge, then joining in again. When people see me leave, and then join back in again later without fuss, they are usually much more accepting and calm about my needing to leave and needing to do things differently - the fear that you are 'giving up' and 'letting disability define you' can reduce as they realise that by being sensible with what you do, you actually can be involved more.
12. Remember that it's not just about Christmas day, but also about before and after. Let family know about pre-charging and recharging time you will need. If you decide you are going to push your limits majorly on one day, make sure family know to expect hibernation the next day!
13. Have a plan for if symptoms are worse than expected and you have to step back from more than you hoped. Being prepared for a 'what if I can hardly get out of bed' day means that it can still be a nice Christmas (festive snacks and drinks within reach, fairy lights, clean bedding and PJs, TV programs and audiobooks). I try and make it so it can be as nice as possible without extra input from anyone else, even if I'm totally flolloped. This means no-one else is under pressure on my behalf. If no-one can give extra input, I will have a good Christmas from bed, but if they can give extra input (like pop round with a plate of dinner and a hug) then it will be an even better Christmas.
14. Make your bedroom Christmassy, so even if you have to spend a lot of time in there, it still feels nice. 
15. Ensure your outfit allows you to relax and self manage. My favourite is tunic or wrap-around dress that's a bit smart but also comfortable, with leggings (so I can sprawl in whatever position I need to), fluffy socks, and a lightweight scarf that can give the comforting feeling of 'snuggle' without making me overheat.
16. And above all: don't allow yourself to put pressure on yourself. It's OK to step back, to recharge, to manage your time so that you can enjoy day. 

Sorry this turned out rather longer than I planned, but maybe that increases the chance of there being something in the list that is useful, and I hope you all manage to find your way to have a happy Christmas.