Please note: 12-3pm is simply the time when the ME Association and I will be more present online, but Blue Sunday is not limited to these times. I understand only too well how we all need a bit of flexibility with these things! An Instagram giveaway will run throughout the day (not affiliated with the MEA or Instagram) and you can post your tea parties photos and comments at anytime.
I have been looking in to how you can join in with the tea party for M.E. via my blog, rather than via social media. With the help of a friend on Twitter I have found a way!
If you’d like to join in by posting a photo of your own little tea party set up and share it, you can do so in the comments section of the blog posts I share on the day. I will then be able to reply to you and we chat about all things cake!
Please get in touch if these instructions aren’t clear enough and I will do my best to help.
2. Click on Choose images. This will take you to your Camera Roll (phone or tablet) or give you the option to find the tea party related image you wish to share that you have saved on your laptop/computer.
3. The photo you’ve selected will appear with a choice of links below it. Copy the Direct Link (circled here in red.) It will likely be the second link down.
4. Come back to the tea party post I’ll have shared on Sunday 17th May (www.the-slow-lane.com) and scroll down the blog post until you find the comments section. Circled here in red. You will need to enter r name and email address but your email address will not be visible once the comment is posted.
5. Ta da! Your image will appear in the comments section under your name. I will then be able to reply to you and we can chat. Other people may reply too and you can strike up a conversation with them if you feel able to.
Please feel free to have a practice on this post if you’d like to.
I hope these instructions help and that more of you will be able to join me on Sunday 17th May!
3 weeks today is tea party day. Seems I’ve started early on the whole ‘Go Blue’ thing!
This week I’d like to get certain things ticked off my To Do list so that, for at least the week before the tea party, I can rest as much as possible. But I know only too well that things don’t and can’t always go to plan like that. We shall see. If it gets done, it gets done. If it doesn’t, it doesn’t.
For those of you without a social media account, please know that you’ll be able to join in on the day. I’m working on it! You’ll be able to comment and share pictures of your own in the comments section of the blog posts I’ll share on Blue Sunday (17th May.) I’ll share detailed instructions as soon as I can.
Even though there’s no Real Life event to prepare for, an afternoon of being online and replying to comments and posts is quite the undertaking for me. Had the Real Life event been going ahead, I was going to ask for some willing volunteers to help keep things ticking over online and make sure all photos were shared and being replied to. It is always such a juggling act trying to do both on the day. Especially when you’re never very well. Perhaps that’s something some of you might like to help me with next year?
Have you saved the date and spread the word? I’d love it if you could 💙
Any given day is not instantly marked as Bad because of the symptoms I might experience.
At any given time, if asked what my symptoms were, I would struggle to list them. In order to get the hell on with life, I have had to normalise them in my mind. It’s not been an exact science. There is still fear when the feeling of mild pins and needles appears in my legs, because that can be a sign a bout of paralysis is coming. And the feeling of swelling behind my right eye has never, ever been anything other than scary.
But on the whole, I have really managed to come to terms with the fact that the symptoms I experience each day, are my Normal. Some symptoms are actually quite amusing! The majority are just plain baffling! One boiling hot foot and one that’s so cold it burns?! How?!
And so on the days where I am too exhausted to wobble further than bed to bathroom, I still wouldn’t say that that fact makes it a Bad day. Healthwise, sure, it may well be on The Anna Scale of things. Yet today I’ve had a text from my cousin. And I’ve messaged a friend. My husband is safe at home with me during ‘lockdown’. The sun is shining. I have an internet connection which means I can look at social media even if I can’t engage fully with it today. My husband will likely wash my hair for me later. The house is quiet (our neighbours must be out!) There is lasagne for tea. For me, for the version of myself that I am today, I wonder how those things can make it into anything other than a Good or Nice day.
I have noticed recently that some people assume I, or another chronically ill person, cannot possibly be happy in a life dominated by illness. But your perspective shifts when you’re in the thick of it. It has to if you’re to find any joy and contentment in life when the things that made you who you were have gone.
So many people are defined by their productivity, something that’s not helped by a society that places more value on a person’s abilities than on their kindness, for example. I was too. The loss of identity I can still feel, because I defined myself by what I could do, almost ten years in can be enormous. But if I defined myself in terms of productiveness all of the time (and I do some days) my life would be miserable. My self-esteem would be non-existent.
In addition, I still believe I AM being productive, just not in a conventional sense. Even though I have no choice in the matter at all, being in bed and resting IS productive in my eyes. It in impossible to push through and get up and dressed and do any of the things that need doing or that I’d like to do. Impossible. And so what good would it do me to lay here wishing for something different than what I’ve been handed today. In resting, my energy stores are slowly replenishing. That’s going to help me digest food easier for the first time in a few days. It’s going to help the symptoms related to exhaustion (the blurred vision, nausea, inability to read or walk or breathe easily) to calm down a little. What’s not productive about that?! Your mindset shifts. You come to celebrate and view things as wonderful achievements; things that you’d once not even registered as being ‘things’ at all.
There are less than four weeks until the tea party. One of the silver linings of this year’s event being ‘online only’ is that I can risk using some of my energy on baking in the run up to Sunday 17th May.
For the first few years I couldn’t manage any baking at all for the tea party. And then I could bake on thing. And then the next year, I baked two things. It is incredibly risky for me though; doing something as taxing as baking so close to such a big social event.
This year is different! There is far less preparation and organisation needed and so I can indulge in more baking than usual. Last week I made a gluten free orange cake. It did not go well! The week before I made a gluten free lemon and poppy seed traybake, half of which is currently in the freezer ready to defrost come Blue Sunday. As there is so little else I’m needed for at the moment I can rest and recover slowly after each baking adventure.
This week, it’s coffee and walnut cake! The current ‘lockdown’ is actually allowing me more freedom than you’d imagine. With no visitors, no appointments and no meeting up with friends, I able to do more than usual because less time is needed to rest before and after a visitor, for example.
Baking is never without incident though! Even when eggs are like gold dust due to panic buying, my brain doesn’t always register how incredibly wasteful it would be to drop one. The signal from my brain to my hand seemed to get lost somewhere along the way and my hand didn’t grip it as it should have.
And when making the butter-icing, it seems there was great confusion between the bowl of icing ingredients and…the bin. The last of my icing sugar was therefore, very carefully, sieved into the bin. Laugh or cry! That’s brain fog at its best