Preparing to be a bridesmaid as a spoonie

So as you all know by now, I have several chronic illnesses, the main issues being my ME and fibro.  As they make me very poorly, I spend a lot of time in bed and resting.  This is obviously a huge problem when trying to hold down a job, but we won’t go into that now… It is also a bit of an obstacle when it comes to life events.  By life events, I mean the big stuff that you just really don’t want to miss out on.  Close friends hen dos, weddings, baby showers etc.

I was honoured to be asked to be chief bridesmaid to my oldest friend last year.  We have known each other since we were babies and I really want to do a good job as her bridesmaid.  She was my bridesmaid at my wedding in 2013 too.  The wedding is tomorrow and I have spent months being terrified I would be too unwell on the day.  Sadly with ME, it is not “mind over matter”.  If your body decides you can’t move or walk that day, well then so be it.

I still don’t know how I will feel tomorrow.  What I do know is that I have done everything I can to try and prepare for the day.  I hope some of these tips could help you, if you’re also a spoonie and have something coming up that you really don’t want to miss.

1)  REST

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Obviously.  This goes without saying as this is what I spend the majority of my time doing anyway.  But in the last week I have made a concerted effort to look after myself, getting plenty of sleep and good quality rest.  I have kept up with my medications, done some light stretching and just generally taken care of myself.  I hope that all this rest will mean I will be up to it on the big day.

2)  PREPARE IN ADVANCE

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As a spoonie, the last thing you need is to use up lots of energy the day before an event by preparing everything you need.  I have done everything I can possibly do well in advance.  I am sleeping at the bride’s house the night before the wedding, and I packed my suitcase last week.  There are items I couldn’t put in until last-minute of course, but there was lots (like underwear, PJs etc) that I could pack in advance.  Yes, even packing a suitcase is tiring when you have ME!

I have had acrylic nails done professionally, so I could have them done earlier in the week and be ready.  I had my speech printed earlier in the week and have already packed that too (wish me luck!).

3) MAKE BACKUP PLANS

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I will be at that wedding if it kills me, but I know that I will struggle to be up and about for the entire day (starting with hair at 9:30am and finishing at the end of the night-do).  So I have made “contingency plans”.  One of my best friends and a fellow bridesmaid has a room booked at the hotel.  I have asked her if I can use it to go and lie down or have a nap when I need to.  She has kindly agreed.  Knowing that I have somewhere to escape to if I feel particularly bad is really reassuring.  Don’t be afraid to ask for help if you need it.

4) BE PROUD!

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It’s easy to be hard on yourself as a spoonie.  You feel like you are constantly letting people down, saying no to plans, being “boring” etc.  I know I probably won’t be up on the dancefloor all night like others.  I may not make it to the end of the night do.  I might have to stay quiet and just watch conversations for a bit as if I’m tired, I struggle to follow what is being said.

But I will not be a failure.  It will have taken a lot for me to manage the day and I will be extremely proud of myself!  A few years ago, I never thought I’d be proud to just be up and out of bed haha.  But you have to work with what you have been given, and if I could say one thing to my fellow chronic illness sufferers, for whom every day is a struggle, it would be…

WELL DONE, I’M PROUD OF YOU.  

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