And a happy new year…

I think it’s fair to say that 2019 has been a shit show. A political nightmare on a global scale. Environmentally disastrous & frankly a genuinely worrying time to be alive. My faith in humanity has taken a battering this year.

It won’t be like this all the time stencilled onto a pavement

It hasn’t been an especially uplifting 12 months on the personal front either. There’s been loss, illness & a struggle for meaning. It has all felt a little pointless at various stages, but I made it. Here I am living & learning. Carrying on.

Woman in bed with teary eyes

The year got off to a heartbreaking start, but there have been ups. I cemented a crucial relationship & extricated myself from one, which in hindsight, I hadn’t wanted to be in for quite a while. My people have proven once again how marvellous they are. Circling around when needed & letting me be when required.

Txt conversation

There have been a few professional triumphs. I returned to public speaking (terrifying), embarked on a little social media consultation & posed for some excellent photographers. I produced writing I am proud of and my expanded audience significantly.

I applied myself to the task of enjoying life. It’s not always easy when dealing with chronic & mental illness; I’m pleased with my progress. My little ones continue to be of endless interest. I have immersed myself in the joy they bring as often as possible. I’ve allowed myself to enjoy time with someone lovely & undemanding. I even had some successful surgery.

Selection of pictures of children

Most importantly (I think), I have released myself from the need to know where I’m going. I always thought my biggest purpose was motherhood & letting go of that dream has been challenging. I felt bereft of meaning. It has taken time & wise counsel to discover that perhaps I don’t need all the answers right now. It’s ok to take some time to breathe & live. Hopefully other options will present themselves. In the meantime I can work on career goals and hopefully continue to squeeze maximum happiness out of life.

Path continued painted cement ground with foot & walking stick

So, it’s true. Life goes on. I suppose that’s as true on a larger scale as it is personally. We can still strive to be the change. Sadly, it looks like there will be lots of opportunities to test the courage of our convictions. I hope we prove ourselves brave.

Mirror image of fat women smiling

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* Photography Credit – Megi Aben

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.