Sunday, 8 December 2013

Christmas with a chronic illness


Image: Americas Best In Portsmouth

This is the first year in quite a few that I've felt really festive and quite excited for Christmas. The past few years I've been too unwell to really get into the seasonal spirit - with Christmas creeping up on me and suddenly having to buy lots of presents. Then, being too worn out to really enjoy the day.

This year I'm doing better and am so excited for Christmas. I've already had a fake Christmas lunch with friends, watched the pantomime (for work, but still) and yesterday I went to the Reindeer Centre which was so good (it's in Ashford - if you live near there you have to go!).

I feel like I'm now more aware of my condition (POTS) and how that affects me. This year I've definitely got a lot better at knowing my limits - so I thought I'd share some thoughts on this as we get into Christmas. It's often a relaxing family time, but it also requires a fair bit of energy and preparation which, regardless of which chronic illness you have, will be difficult.

I think the hardest thing mentally about a holiday like this is the distance between how it "should" be and how it is. You want to be having the best time, but if you're in pain or fatigued that will be tough. It's too easy to put unnecessary pressure on yourself to keep up with everyone else.

So try to let your preconceptions on how the season should be go. Focus on what you're doing and who you're with - and enjoy that. Don't focus on what you can't do, as that'll only bring you down.

If you do find yourself struggling and feeling low - talk to someone. Don't worry about bringing them down - your loved ones will want to be there for you.

If you find it difficult to have that kind of conversation then turn to the support available online. It was a fair while into being ill before I searched my condition on Facebook. I am so glad I did.

There are several groups with people all around the world, sharing experiences so similar to mine: the same frustrations, rants and questions. When you have a chronic illness the experience can feel so isolating - and to be able to post and receive answers at any time from people who truly understand is so, so appreciated.

Celebrating with loved ones, you may find they will want you to have the best time possible, but that might not always be expressed in the most helpful way. Some may suggest pushing the boat out - "it's Christmas - one drink will be fine" etc. If that genuinely will be fine for you, then why not. If you're not sure, or know this will make you feel worse, stick to your guns.

Do what you need to do to have a good time and stay well. Equally from the other side of this, don't let anyone guilt-trip you for having "too good a time" when you're ill. Sometimes we do more than we should and know we'll suffer for it later, but it's worth it.

Basically - crack on and have a good time: you understand your illness and limits better than anyone.

In terms of more practical advice - it may seem an obvious one but online shopping is so helpful for buying gifts. You have time to research and get ideas, then do all your shopping without having to venture into crowded shops.

If you do want to do your shopping in town, wear layers you can easily strip down from. I find that I get so cold outside but then as soon as I get in the shop I overheat very quickly with the heating, warm clothing and the physical activity of browsing. I'm much more likely to have an episode if I let myself overheat.

Also don't forget to keep drinking! When you're in the midst of shopping it's easy to forget, or to worry about where the nearest toilet is, but it's so important to keep hydrated.

It's also a good idea to try to plan your shopping for when it's quieter. So if you can go on a weekday that's ideal, but if not at least try to avoid lunchtimes when workers will often be hitting the shops.

If you do get a stuck in a long queue and you're a fellow POTSy - remember your counter-maneouvers: shift from one foot to the other, and tense up your leg and bum to keep the blood flowing rather than pooling. Alternatively, if you do need to crouch or sit down, don't worry what people will think - just do it. It's better than the alternative.

Having someone with you when shopping is helpful too - for the company but also if you do need any help - whether carrying gifts or for bouncing ideas off of. I'm sure that's the same whether you have a chronic illness or not, but having the support there just in case is an especially good idea.



I hope this might help a little in getting to really enjoy the festivities! Comment below if you have any of your own tips for coping with and, most importantly, enjoying the holidays with a chronic illness.

2 comments:

  1. Thanks for your ideas and advice. I decided that I will actually enjoy the Christmas holiday season this year, but we'll be celebrating at my home. I have neurocardiogenic syncope as well as epilepsy and I noticed how I started allowing peoples misconceptions to impact me. I'm looking forward to this Christmas with family anrd friends. Thanks for the reminders as well Blessings to you and your family this holiday.

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  2. Hello Marie A.Carter-Gain , I also have Neurcardiogenic Syncope I have a awareness group on facebook.
    I love celebrating the birth of our Savior Jesus! He helps us learn more about what we have & keep us here on earth with our children or loved ones!

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