Watching the wheels go round & round…

I’m almost a year into lockdown. There were a few fun outings last year, but for the most part I’ve been home. Man alive, I’m fed up! I’ve reached the take comfort wherever you find it stage. Turns out that’s some random locations.

Old crime shows. Not flashy American ones. They’re too full of hero talk & ridiculously good looking people. They offer no comfort. What I like is late 90’s gritty UK stuff. Proper dark crimes with complicated twisted characters and very few happy endings. It probably speaks to my craziness that these are the tales I seek solace in, but hey ho.

Posters for waking the dead, wire in the blood and cracker

Tic Tacs. I’ve no idea why. A pack of cherry cola ones came free with something I ordered and now I am hooked. I’m not usually big sweetie eater, but sucking on these seems to really help my concentration. Is this some kind of regression to infantile soothing? Who knows. They’re damn tasty, so I’ll carry on.

Candles with fresh outdoorsy scents. Perhaps because I never go anywhere & I miss the world. Probably also because my cat won’t stop farting. Either way I’m obsessed with anything with a whiff of the sea or a refreshing mountain breeze.

White roses in a vase, candles, photo frames on decorative table

Lists. If it isn’t on my to do list I will definitely forget all about it. Lockdown has made this habit rather more frenzied. Every minute activity must be noted & crossed off. I think it might be a reaction to living such a restricted life. I suspect breathing will be included very soon.

Fleecy bed sheets. I’m obsessed. Bought one set on a whim and now want nothing else on my bed. They’re so unbelievably soft and warm. I’ve purchased another complete set and loads of fitted sheets. This way I can have some fleecy goodness with ever duvet set. It’s the closet thing I can get to a snuggle mid pandemic.

Grey fleecy bedsheets

John Oliver. The man is a marvel; smart, funny & genuinely decent. I’ve been rewatching old episodes of Last Week Tonight and finding interviews on YouTube. It boosts my sense of well being to know good people exist in the world. If they can make me laugh out loud all the better.

John Oliver laughing

The Spoonie Guide to Xmas…

Christmas is joyous and lovely and incredibly hard for the chronically ill. On top of keeping up with every day life there are a million other tasks to contend with. Not only is there shopping, wrapping & cooking, but there are a multitude of festive social events. Oh & the expectation that we’ll all be merry and bright.

When you’re chronically ill you don’t get time off for Christmas. Keeping up with seasonal demands when you’re in pain & exhausted can be impossible. Here’s my spoonie guide to surviving Xmas. Plus a little advice for friends of family of the chronically ill.

Make a list, check it twice.

The only way I can keep track of what needs to be done is making a tonne of lists. Lists help combat so many issues. If you’re dealing with brain fog, anxiety, impaired cognitive function, fatigue and so on, lists are life savers. I usually break things down into categories and try to assign a time scale to each list. The trick is to be realistic about how much you can do each day and not freak out if you don’t complete your list. Simply roll over outstanding items. Accept that some times you will have to make cuts. You can’t do everything. The world will not end if you don’t post the Xmas cards this year.

Start early & manage expectations.

I always start Xmas prep super early. The longer you have to get organised the more you can spread the work load. Getting a jump on the shopping also really helps if you have a tight budget. It is much easier to find smaller amounts of energy & money.

Be honest with yourself and others about what you can manage. If you have to trim the gift list or swap a meet up for a phone, do so. I believe Christmas is about embracing the ones we love. Try to work out in advance which parties/get togethers you comfortably manage and communicate that. Float the idea of secret Santa style gift giving rather than buying everyone in your group an individual present. Expensive presents don’t matter. An enjoyable phone call or grabbing a quick coffee is much nicer than forcing yourself to suffer through social engagements that cause you distress.

If you have to cancel, make your apologies, but be firm. You didn’t choose to be ill. You are not intentionally disappointing. Remind yourself of this and try your hardest not to feel guilty.

The internet is your friend.

I do the majority of my Xmas shopping online. It is much less stressful and physically taxing to order from the sofa. The shops are crazy at this time of year. Not to mention the weather is awful. Stay warm & rested and get your festive haul delivered. This goes for food too. You can order in advance and have the Christmas groceries delivered as and when you need them.

Allow yourself to enjoy what works for you.

Christmas comes with a variety of traditions. Everyone has their own variations and seasonal essentials. It’s lovely to uphold family traditions, but only if they work for you. This is your life and your Christmas, you are entitled to enjoy the festivities. If something will negatively impact your health, don’t do it. There is no joy in activities that hurt you.

Establish your own Christmas customs. Whether that is embracing existing rituals or just making up them up from scratch. Deck the halls, wear an ugly jumper, stick cinnamon on everything or don’t. Suit yourself. Celebrate in style, but make it your style.

Don’t be a dick.

This is for the loved ones. If someone in your life is dealing with chronic illness, be kind. We know we disappoint sometimes. We get that we’re not the easiest to accommodate, but please be patient. Cut us a little slack. As inconvenient as our symptoms can be for others, trust me dealing with them every single minute of our lives is harder.

You’re clouding my mind…

Nothing bad happened this week. No extra stressful event. No triggering sights or scents. In fact, it was quite nice. Easy weekend with my man. Luxuriously relaxing day with my sister. Words were flowing. I had nothing more taxing than baby shopping & light housework scheduled. All should have been well, but no one told my brain.

At some point on Monday night my head switched from calm to high alert. Try as I might I can not decipher why. I was one minute thinking about what colours to paint my nails & the next desperately trying to pinpoint my panic. It happens that fast. Like a storm cloud darkening the sky, my mood stiffens. Suddenly my only thought is why do I feel like something very, very bad is about to happen? All I can do is run through every aspect of my life & weigh up how likely disaster is. It doesn’t matter that my checks come up empty. That only makes the anxiety worse. Even If I can’t locate a likely impending crisis, I still feel on the verge of one. The disparity between my thought & feeling drives me crazy.

My body betrays me. It takes its queues from my beleaguered brain. Thus every gust of wind or car in the street sends my heart racing. I can’t relax. I can’t sit still. I can’t get anything done either. My head is too busy with the millions of terrible possibilities it has to discount. I can’t concentrate properly, so every task takes twice as long as it should. Or just doesn’t get done at all because you know, the post man came & I had to hide in my bedroom. What I was hiding from, I don’t know. I can’t think of a single scenario in which someone knocking on my door could realistically lead to a catastrophe. Nevertheless, I cower.

It’s exhausting and it is maddening. Free floating anxiety. I’m basically just fighting with my own stupid head. There is nothing to fear except fear itself. I think that phrase is supposed to comforting; not for me. Illogical, inexplicable fear itself is a formidable opponent. I’ll be ok. Can someone just please tell my brain.