Category: ME Awareness Page 7 of 13

Last year a brilliant group of friends dressed up as Princesses for M.E. Awareness day, at the time I was invited to join in by the Queen of the group who organised it all but unfortunately I was unable to given everything that was going on in my life at the time. This year I’m proud to say I’ll be joining them on May 12th!

The aim is to raise money for M.E. charities; that’s right not just the one charity, we’ll each choose our own charity to fundraise for! Of course some of us might pick the same one but they’ll be a few different ones mixed in. I shall be raising money for Invest in ME as it’s a charity I feel is doing a lot to aid research into ME.

I’ll be posting photos of a Princessified me on all my social media accounts on the day and where possible I’ll be tagging Invest in ME and their fundraising account Let’s Do It For ME so the photos and event can be spread as far and wide as possible.

I’ve set up a JustGiving page: https://www.justgiving.com/PrincessClare or you can donate via text by sending PCJW78 followed by either £1, £2, £3, £4, £5 or £10 to 70070 (For example PCJW78 £3 to 70070) You can find the pages of other UK based Princesses on our team page: http://www.justgiving.com/teams/teamprincess

For now I need to get on with sewing sequins onto my knitted crown ready for the big day!

If you want to know more about The Princesses and ME check out the Facebook page or this post on Queen Sian’s blog!

To preserve my energy supply for Christmas, a lot of the work is done in the weeks and sometimes months leading up to Christmas.

Christmas Shopping is not a one off event done during December. Oh no. My Christmas shopping begins whenever I see something I think suits someone in the shops, no matter what the time of year! So this year my Christmas shopping began way back in June. Yes I have to find somewhere to store it but it also means I don’t have to go on a special shopping trip just to buy people’s presents and then find I can’t get anything suitable! Plus it also means I can budget my money better. Always a good thing!

Cards get written in November sometime most years. I try and keep the number of cards I send to a minimum, wishing most people a Happy Christmas online via my Facebook or Twitter pages. Again it’s not a case of not wanting to send people cards, it’s just a case of the cost; both in energy and postage! I can’t afford to send as many cards as I’d like by post, but I also can’t afford the energy spent writing them all either. So if you don’t get a Christmas card from me it’s not because I don’t like you!

Present wrapping can also begin in November, possibly earlier. If the present is there it may as well be wrapped and ready as early as possible so it’s one less thing to do in December! So if anyone looks in our living room window in November to find a girl sat on the floor surrounded by festive wrapping paper and presents they shouldn’t be surprised!

For Christmas in my house the dining table is quite a big thing. We don’t spend the earth on it but it is always made to look festive and pretty to make it special on the day. So preparation for that also begins early. Ordinary place mats get wrapped in festive paper; this all started when we didn’t have enough matching place mats and has since continued as it looks very festive! Again this sort of thing is done late November/early December if possible.

Literally anything that can be done early, gets done early. But even then I’m carefully pacing, making sure I don’t overdo it. It would be stupid to risk a relapse so close to Christmas while preparing for it! That’s the one thing I’ve learned over the years; it doesn’t matter if everything isn’t perfect, as long as you’re well enough to enjoy the day that’s all that really matters!

 

In this series of blogs on Christmas with a chronic illness I share my ways of coping with the festive period. This first one is all about coping with impromptu visits from family and friends.

Ever wondered how to cope with Christmas when you have a limited energy supply? I think it’s similar to planning it with a limited monetary supply. The key is planning and budgeting.

But I’m used to budgeting my money and energy supply during the rest of the year, so Christmas shouldn’t be too much different should it? Money wise, no it isn’t. But energy wise it is. You see Christmas is a time of spontaneity for most people, they drop by the house to spread Christmas cheer with little or no warning which makes managing a limited energy supply rather difficult. But it can more or less be done.

For the most part I spend Christmas with my immediate family. But like I say visitors pop in throughout the Christmas period (usually in the lead up to it) which drains my energy before the actual event. So these days I’ve taken to retreating to a quieter room; I stay for a few minutes to say hello and wish them a happy Christmas but if I feel my energy levels dwindling I move to a quieter place. That could be the kitchen where there’s only one or two people chatting and they don’t mind me not participating, or if I’m feeling really drained I choose to go to my room. It’s not that I want to be antisocial and not see our family, friends etc. It’s just I simply don’t have the energy to do that AND have a good time on Christmas day, Boxing day etc. with my family and whoever we have staying or for dinner that year. So I hide.

Of course I’m lucky living with my parents and sister, in that I can hide away – there’s still someone there for the visitors to talk to. If I was home alone things would be a lot more difficult and I don’t know how I’d cope. I imagine I’d find a way but I suspect there would be a big impact on how I spent my time during the actual event.

Look out for more about Preparing for Christmas in my next blog!

This post has taken me a while to write and publish, longer than I had hoped it would. You see unfortunately for this blogger, my internet has been playing up and I’ve been lucky to load a website. Heck it still is playing up and this may not even post by the time I’ve finished, but we’re giving it a go.

Back to what I originally intended to post…

I have been overwhelmed by the support I received for my birthday celebrations. I would like to say a MASSIVE THANK YOU to everyone who sent me birthday wishes, cards, presents and of course to all of you who donated to my JustGiving page! You made it possible not just for me to reach my £100 target but to surpass it! THANK YOU SO MUCH!!! Each of you added to my happiness during my birthday celebrations. And I’m sure your donations will make a difference to Invest in ME’s efforts to find the cause and a cure for ME.

Also a big thank you to those who shared photos of celebrations to the Facebook page and used the hashtag #ClaresBirthdayThursday on Twitter!

I had a quiet birthday, resting most of the day before seeing most of my family in the evening. Of course the only logical M.E. attire was a pretty dress with slipper boots!

My Birthday Outfit of Pretty Dress and Slipper Boots

We all consumed lots of birthday cake lovingly made by my Dad! I was very lucky in that he made me two birthday cakes – one coffee and one chocolate!

My two birthday cakes!

My JustGiving page remains open as I have some offline donations to add. And my birthday celebrations are continuing this week despite an energy slump! So if you still want to donate and continue my birthday celebrations feel free too!