Another reminder

Someone else’s opinion does not come close to your lived experience. If someone who isn’t you, deems your symptoms or your circumstances to be “not that bad” it holds no relevance whatsoever.

You are allowed to feel however you damn please about your chronic illness on any given day. No-one gets to decide what is or isn’t a big deal to you.

Your feelings are valid. Please do not berate yourself for being in a different headspace than other people with the same health condition.

Our circumstances and symptoms are different and unique even when we have the same diagnosis.

You are not wrong for feeling frustrated, angry or despondent about your health restrictions. Someone else is not right for feeling grateful, happy or blessed despite theirs.

The way we feel on any given day can and perhaps should change constantly. Because, my friends, we are human beings.

Go gently with yourself.

A Covid Christmas

People have talked at length about how much the pandemic has taken from them. I haven’t been able to relate at all. Until now.

Most of the freedoms people have lost to the pandemic I lost long ago.

When the lockdowns and shielding started, I was already housebound, unemployed due to ill-health, isolated from regular contact form friends and family, unable to have regular visitors…

So the pandemic hadn’t really taken away any of my freedoms, as there were so few freedoms to take.

I might not have had much, but I’ve always had two important days a year regardless of my health. Those days are ‘Blue Sunday’ (the tea party for M.E.) and Boxing Day. My favourite days each year. Be it pyjama clad and shuffling to join in with as much or as little as I could, I always had the 26th December to be with my extended family. We’ve done the same thing for over thirty years; all got together at my parents’ house for another Christmas dinner, Secret Santa, games, and family time. We are a very close family – there’s only one month age difference between me and one of my cousins. We al grew up together, holidayed today, we’re each other’s bridesmaids.

But the pandemic took Boxing Day from me this year. And my goodness did I feel it.

Mr Tree Surgeon and I were always going to have Christmas Day to ourselves this year. Christmas time has become quite tricky and hectic for me since my family expanded through marriage. It’s always lovely, but I couldn’t wait to have a Christmas time more suited to my health and my pace of life this year. And it’s been so nice! So nice! But Boxing Day…I have never not seen my family on Boxing Day…

Huge wins for me – being able to get dressed properly for the first time since August and being able to sit at the table. I did vomit from the apparent ‘exertion’ but we’ll ignore that bit.

With me still shielding, my dad due to have surgery, my grandma being our most precious person ever, and it just not being responsible to get together regardless of restrictions, we cancelled our annual Boxing Day gathering a while ago.

Of course with this relapse, it’s hard to know if I’d have been able to spend the day with my family anyway. But I have had Christmases poorlier than this one, and even then I had Boxing Day.

It’s given me a little taste of what 2020 has been like for the people around me who live a life that’s very different from mine. It’s been impossible for me to understand how hard this year must have been for them, and I’ll never truly grasp it, so far-removed am I from mainstream society. But, yeah, it sucked to lose something that has the power to keep me going even on my hardest health days. I’ve missed all-sorts of things this year due to my M.E. Holidays, gatherings, video quizzes, meals out… But to lose my favourite day to this pandemic felt quite different.

ID: Anna looking out of the window. She’s wearing her Christmas pyjamas. She’s reflected in the window glass.

Busy doing nothing*

*by nothing I mean getting through a single day whilst drowning in debilitating and restrictive symptoms…

Being off work doesn’t mean I’m free. I have an incredibly hectic schedule, full to the brim of feeling too awful to do anything.

The implication that I have an incredible amount of spare time irritates me. In truth, I hardly have any at all.

I might be free in that I have no plans, but I’m rarely available. I get small pockets of time during the day, if I’m lucky, where certain symptoms might ease enough to allow me to reply to an email, or read comments left on my blog, or brush my teeth, or go and see the guinea pigsā€¦

With this in mind, I don’t need you to give me tasks or things to do to keep me occupied or make me feel useful. I understand your thinking, but I don’t need it. In fact it adds unnecessary pressure and stress, as I invariably have to pass on the task to others, or completely write off the rest of my day to fulfil what you’re asking of me.

It also adds to the feeling I am already fighting that my life is often pathetic and lacking purpose.

I feel other people project how they’d feel if they had to live their lives like mine; ie. they’d feel it was pointless and devoid of all meaning and so would need these small things to do in order to get some sense of fulfilment.

Your reasoning, that x, y, or z will give me a sense of achievement, seems inaccurate. Because I get a sense of achievement in so many places. I put this jumper on myself. I made this coffee. And perhaps the greatest achievement of the morning was realising I need to be back in bed after only 15 minutes of being out of it.

My life might be so different from yours, but different doesn’t mean less.

ID: Anna sitting up in bed wearing a grey jumper. She’s holding a mug of coffee and smiling at the camera. She’s sporting her Relapse Haircut (where 5 inches were hacked off with the Good Kitchen Scissors). She looks fine, good even. She’s not. But for the few seconds it took for this picture to be taken, she looks fine.