Tuesday, 6 December 2016

Preparing for Para-Christmas!

Last year Christmas was rather fraught because my little niece was so sick in hospital, but all being well this year's Christmas should be rather nice. I'll have both of my brothers at home with me and my mum, as well as their respective partners, the baby and the dog! Only John will be missing but I will see him afterwards at New Year. I'm looking forward to it but there are also a few things I'm anxious about. I've been thinking about how I'm going to handle it, and in the process I've discovered that a lot of people with chronic illnesses get nervous about things like Christmas. The problem is that you're meant to have a lovely time and so is everyone else - but if you get tired easily, or you can't cope with the conventions or traditions that your family observes, then the problems you may experience overshadow the general merry spirit. This year, I'm going to do things a little differently.
All the rest of my photos are going to be cheery after this one, even if they're not completely appropriate!
First and foremost - Do not feel guilty. It seems ungrateful to find elements of Christmas difficult. I know my position could be worse. I could be homeless, I could be stuck in hospital (fingers crossed that won't happen!), I could have nobody to be with, I could have no heating, and so on and so forth. However, being prepared for the fact that Christmas isn't all just fluffy reindeer with glittery flying snowmen friends is just sensible. So, if you find Christmas difficult for ANY reason, don't feel bad about it! First time without someone you loved? Hundredth time without them? Concerned about feeling ill on the day and letting people down (this is my biggest fear)? OK, these are valid concerns and you're allowed to break out of the enforced jollity for as long as it takes to plan and carry out a bit of self-care. As much as anything, I've written this paragraph to convince myself...
and if I'm not miserable about Christmas then Rosie certainly shouldn't be!
So, fatigue is always my biggest weakness. Throughout the days that the others are here, I need to be able to retreat to my bedroom to rest whenever I need to, whether it seems acceptable or not. To do this, I need to make sure I don't feel guilty about it. Rest is a simple thing that makes a huge difference: if I rest properly, I feel OK; if I don't rest enough, I feel dreadful. Also, 'rest' for me isn't the same as other people's rest. Other people can rest by watching television together, but for me it isn't restful to be in a group because there are inevitably conversations and so on which are really tiring for me.
Food is next. It's common at Christmas to eat a massive lunch and a much smaller tea, but this doesn't work for me. I need a big evening meal to keep my pills down overnight, so I need to think about portion sizes all day. I also need to eat regularly enough to stave off migraines - so any delay to meal times (because of things not being cooked yet, or because of having to wait for the baby to wake up, or whatever) is something I need to be able to deal with. Again, it comes down to not being afraid to do my own thing.
So hungry you could eat a horse...
I'm concerned about the expectations others will have of me. We are quite an active family. My brothers and their partners will want to go out and do a lot, and I won't be able to keep up. I won't even be able to stay up and talk to them from the sofa all day. Whether this is a big deal for them or not, it makes me feel pretty rubbish. Years ago (many years ago!) I would have been joining them and I wish I still could.
Edward, my brother, wearing a cushion on his head, with a rather bemused Rosie.
I'm also worried about various things flaring up over Christmas whilst the GP surgery is closed. There are various conditions (such as iritis/uveitis) for which I can't really keep medication in stock. If one of those comes up, I need to decide whether it's severe enough to go to hospital, because that's basically the only option other than wait for the surgery to open again. In the case of uveitis, that's an easy choice - I can only get the medication for that from hospital, after all - but what if my lung flares up, or I can't keep food down?
When most people think about preparation for Christmas, they think about sending cards, buying and wrapping presents, getting food ready, and what might be on TV. Here are the things a spoonie needs to think about, and how you can tackle them:
  1. Medication. Have you got enough?! Have you got more than enough? Have you got every type of medication you think you could need? The key to this is preparation. If you haven't already done it, act NOW to get as much medication as you can.
  2. Have you got enough safe food and drinks? Is there anything you have to ensure you have in because running out of it would cause you major problems? Make sure you buy extra when you do your grocery shopping.
  3. Most spoonies don't have a huge disposable income, so making/writing/sending cards and presents is a good idea, but takes a lot of prior planning.
  4. Christmas shopping has to be done in stages. If you, as a non-spoonie, feel exhausted after a busy day out shopping, imagine how it feels when you start out feeling that bad (every day). If you want to go out and buy presents for people, you need to accept that it will take multiple trips!
  5. If you're going to stay with someone else (family or friends), let them know what you think you're capable of. If they know in advance that your energy is very limited, they will know not to expect you to play games all night, or to spend hours peeling sprouts.
  6. Since Christmas does sap your energy a bit, it might be a good idea to sort some of the smaller decisions out early. For example, pick out some outfits and put them aside so that over the busy, tiring days, that's one less thing to think about.
  7. Keep going out if you are able, even if bundled up and not under your own steam. A bit of fresh air around the gills works wonders.
  8. Christmas parties - nightmare! I'm only going to one (maybe two at a push), which would be one more than last year. Remember that parties are meant to be things that make you feel happy and feel better about yourself. If you are dreading it because you know it will make you feel dreadful, then don't go! It isn't compulsory! And if it is compulsory, then it doesn't sound much like a party...
  9. Decorate. I love Christmas really. I'm not a grouch or a Scrooge; I love it as a religious festival and I love seeing family and friends more, having special food, giving and receiving presents, and so on. Most of all, I love the decorations. I like the lights, the glitter, the tasteful and tasteless decorations! Being a spoonie doesn't mean I can't enjoy a bit of glam. This year I will have wonderfully tinselly crutches and wheelchairs. I want fairy lights on my chairs. I'm going to look like the personification of Christmas. The fact that I can't stay awaake for much of it is irrelevant!
Have a very lovely Christmas. Here's a photo I took a few years back of an alarmed reindeer to see you on your way.

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