Back to ‘normal’ (very reluctantly)

No one has really seen me since I relapsed because we’ve been in lockdown, so they don’t have any real concept of how the relapse has affected me other than through what I have shared online. So with restrictions easing I face explaining to them that lockdown might have eased but my symptoms have not.

There are things I could do this time last year that I now cannot manage. Because I have M.E, and with M.E comes huge variations.

And surely I should be “better” after over a year of not needing to go out or physically do very much. *insert upside down smiley face here*

It’s making me think of the times when some people felt they’d made plans as Anna-friendly as possible, yet STILL I cancelled or declined the invitation. And rather than offer me sympathy for having to miss out on yet another lovely occasion, they instead decided to point out how great they’d been to book a restaurant with wheelchair access/sort me out a lift/get in gluten free food/choose a specific venue because of its location…How sad they were that their plans were being affected by my health. Spoiler alert: you can be disappointed that things aren’t going to plan for you, but still have empathy for the person who is missing out completely.

I’m tired of the easing of restrictions already. Sorry, but I am. It’s just complex for me that’s all. I haven’t missed saying “No” or having to explain that “Yep, I’m still too unwell to join in.” I haven’t missed not being invited. I haven’t missed watching the world go by as I stay here. I haven’t missed the misplaced pressure or the guilt. I’ve had so much freedom in lockdown, in so many ways. And now it’s back to ‘normal’. Well I haven’t missed it.

IMAGE: Anna sitting on the front step in her vibrant rainbow pyjamas from Next. She has unicorn slippers on. A yellow mug is next to her.

What ‘Blue Sunday’ means to people with M.E.

Every year, about this time, I start to get a little bit uncomfortable ahead of the Tea Party For M.E. I think it’s because it feels close to self-promotion in a way. “Join in with this charity event that I created!” I know the fundraising event is a wonderful thing. I know it is. I just cringe a little when it comes to advertising it. As a recent post suggested, I’m not in this for the fame or followers. And the attention and compliments come flooding in as tea party prep really gets going. I’m still learning what to do with praise and often wonder if I just come across as ungracious and rude when receiving it, because I simply don’t know how to respond.

I’ve asked for more input from others this year, as I truly feel that the event has become yours as much as it’s mine. I asked people with M.E what ‘Blue Sunday’ (the day the tea party if held on) means to them. The response was so wonderful. And so this year, ahead of the tea party, I want to share your words rather than more of my own, about what ‘Blue Sunday’ is and what it means to so many of us living with M.E.

What ‘Blue Sunday’ means to you.

“When I was first diagnosed I felt like no-one was doing anything about M.E. Then I found out about your ‘Blue Sunday’ tea party for M.E – all these individuals, all with their own little version of M.E, coming together to raise awareness and have a cuppa. I’ll be forever grateful to you for that.”

“Community, awareness, connection, and a little bit of joy!”

“It’s a chance to come together with my online pals and do something nice to raise money for an important cause.”

“I felt like a part of something, and I didn’t need to leave my bed. It was lovely.”

“A really positive way for our friends and family to join in and support us.”

“A brilliant and fulfilling way to feel part of helping raise accurate awareness and money, while not pushing a poorly body too far. It’s wonderful to be a part of.”

“Blue Sunday makes me feel less invisible every year and it’s joyous to see everyone come together.”

“Living with M.E can be hard. It’s exhausting, limiting, and there’s a lot of grief. Blue Sunday is wonderful because it feels like a celebration!”


“Blue Sunday provides a wonderful opportunity for positive awareness and a stigma-free platform to share.”

“Brilliant idea, really inclusive. And a perfect excuse to get the posh tea set out.”

“The MOST wonderful sense of community. A day to feel less alone, from the comfort of my own sofa.”

“Inclusive, warm and welcoming.”

“I’m newly diagnosed with M.E and it’s just so lovely to have this amazing event to look forward to!”

“An event to look forward to and get friends and family involved to start a conversation about M.E.”

“A wonderful way to connect with my online community. I just love seeing everyone’s photos!”

“The Blue Sunday event is a testament to the resilience and absolute strength and dedication of Anna. It feels symbolic to the very nature of resilience in people with M.E. That this event is run by someone with M.E. And this is only possible through months of planning, and Anna using her energy allowance for the day so many times over for something to help others.”

See you on Sunday 16th May. As people are joining in from all over the world, the event will run all day but I will be most active online between 12-3pm GMT.

Visit Blue Sunday 2021 for more details.

M.E. myself and this little community of ours

I don’t think I will ever be able to articulate how much of a difference this community makes to my poorly little life.

I’m just sharing a little bit about life in the slow lane and the thoughts and wonderings that come with that. And hoping you’ll come to my little tea party, and that it’ll help remind you that you matter and that there are people and charities out there who care and who are fighting for you every day.

That’s all this is. This account.

A safer place for me to share and offload with people who know that “Get Well Soon” doesn’t apply.

In truth, I can get lonely, and this is a large part of my social life. I need to talk about ‘all this’ somewhere that’s accessible to me, and where I can trust people not to change to topic to one “less depressing”. And it makes my whole day to see some goodness in yours. When Mr Tree Surgeon and I chat about our days when he’s home from work, I so often share what you’ve shared – if you’ve told me that you’ve baked a cake, or got into the garden, or managed to have a shower, well, that’s what I tell him about as my news. You matter to me.

But I’m not convinced I’m cut out for a bigger following; not as thick skinned as one can need to be on the internet, especially not since being more unwell since this relapse. A lot of people celebrate reaching each milestone when it comes to followers, but I’ve just been feeling uncomfortable and overwhelmed since I hit 3000 (Instagram followers) last month. I thought it might be nice to get to 2000, for Tea Party For M.E. purposes, but now it feels a bit scary that there are so many people here.

But a larger following is great for the tea party.

A larger following means more people are reached – more people who might potentially join in and feel less alone. More people who might have forgotten that they’re so worth a fundraising event dedicated to them after M.E changed their whole lives.

Making more people aware of the tea party potentially means more donations to charities working on our behalf to advocate for us, support us, and fund vital biomedical research which can lead to treatments.

Thanks for supporting me and being so nice. And making me feel like I’m not in this on my own.