A little reintroduction

There are a few new faces around here so I thought I’d reintroduce myself ahead of next week’s tea party

I’m Anna. I’m 31 and I’ve had #ME/CFS since 2010

I write a blog called ‘M.E. myself and I’ where I share, quite honestly, my own experience of having M.E. It started as a place for me to help those in my life understand the huge changes that came about when I suddenly became unwell

I live with my husband, known as Mr Tree Surgeon. We met four years into my chronic illness ‘journey’ and within the first six months of our relationship we experienced things most healthy couples will likely not experience until old age, if at all

I have one sister and two brothers, who all avoid my baking efforts like the plague

Over the 9.5 years of having M.E. I have made monumental progress. But I am still unable to work or live independently. I am still unimaginably unwell every single day but I’m so grateful for the progress I’ve seen

I started the ‘Blue Sunday’ tea party in 2013. The name came from the title of a blog post I made about the 2014 tea party and stuck. It was @oliviahcole (on Instagram) I believe, who came up with the tag ‘The tea party for M.E.’ when she joined in years ago 💙

For someone whose greatest achievements have become managing to boil an egg independently and safely, it was a pretty big deal that the ME Association approached me and asked if they could use ‘Blue Sunday’ as the inspiration for their Go Blue 4 ME campaign. No biggie

I have a walking stick, a mobility scooter, and a wheelchair. Different aids for different days hey! (@health_and_unwellness & @wheely_good_time On Instagram have an amazing graphic on this)

In the last year I have experienced a decline in my mental health after reaching the conclusion that I will not become a parent; a direct result of how the severity of my M.E. impacts on my daily life. (I do not accept unsolicited advice or suggestions on this topic at all, but I cherish your understanding and support)

I have three ‘free range’ guinea pigs. Rowan, Delores and Juanita. Delores and her sister Popcorn were my first ever pets, and Pop was the best rest buddy a chronically ill gal could ask for

Bring on the cake!

This is your official ‘One Week To Go’ reminder! 💙💙💙

You can donate HERE

IMAGE DESCRIPTION: Blue writing on a white background reads “Blue Sunday. Join us online for the tea party for M.E. Sunday 17th May. 12-3pm. Wear something blue. Have yourself a slice or two of cake. Post a photo online. Donate the price you’d pay for tea and cake in a café. Connect with others online doing the same. Use the hashtags #BlueSunday2020 #TeaPartyForME2020 on Instagram and twitter or post in the ‘Blue Sunday – tea party for M.E. 2020’ Facebook Event. Photos can also be shared on http://www.the-slow-lane.com”

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.

Joining in with Blue Sunday without Social Media

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.

1. Go to Post Images

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.

Delores in her Blue Sunday tea party modelling debut

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 week countdown

3 weeks today is tea party day. Seems I’ve started early on the whole ‘Go Blue’ thing!

IMAGE DESCRIPTION: By some small miracle Anna is sitting up and is dressed. She’s wearing a gingham blue jumpsuit (that makes her look like a walking tablecloth) and a white cardigan with blue embroidery. Her hair is braided back off her face. She is smiling at the camera.

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 💙

Perspective

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.

Delores came to visit me

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.

Posts from over the years that touch on this a little , and sometimes show how my perspective is ever-changing: Better than yesterday, worse than tomorrow, Human Being vs Human Doing, Setback Survival, The Fear, Sink or Swim