It’s taken 365 adventurous days to complete my journey around the Sun, travelling in the first-class carriage of the Cokerland express; final destination unknown; current stop forty-one!

It can be difficult for someone suffering with lupus symptoms to engage and be social even if it is their birthday. It’s hard to think of celebrating when you’re in pain or facing yet another hospital stay.  What is there to celebrate when your year has been one of anguish? Living with lupus is like playing a constant game of roulette so the texts asking “what are you doing for your birthday?” can be anxiety inducing.  Although you may want to party, there’s every chance that on the day you need to be in bed. When appointments are so limited, one scheduled on your birthday may be a drag but it’s usually not worth trying to reschedule.

After being diagnosed in September 2018, I spent my birthday in the hospital. I’d been told I had a tumour four days prior and was fearful of the future. Everyone was trying to phone and wish me well but the last thing I wanted to do was connect, let alone celebrate. In 2019, I’d started a new job so, despite recovering from surgery and knowing my body needed rest, I worked on my birthday. My mental health was poor, I felt if I wasn’t active, I would plunge further into darkness. Hoping if I swam like a swan, I’d eventually become one; I wore a smile when my friends took me out, but genuinely I enjoyed their company.  A week later I was thrown a wonderful surprise karaoke party which helped. Singing like the Whitney I could’ve been, I was reminded of what it was to have fun – not even vertigo could’ve stopped me from shimmying.

My 2020 lockdown birthday consisted of drop-in visits in the garden. I look back at those pictures and cry weighted tears that balance sadness (because of how I looked) and happiness reflecting on how far I’ve come. In 2021, I celebrated my 40^th birthday and decided to plan a joint party. Friends had passed away and I wanted to practice gratitude for even with the isms and schisms of lupus, I was alive. I sought to bring joy to those around me.

This year, I chilled – meeting friends and family individually.  I’ve achieved so much this year, such as writing and publishing my book baby “The Wolf and the Butterfly”.  I had a lot to celebrate but needed to do it in a way that looked after my mental and physical health.

Why celebrate?

• Because each day brings hope that things may change, things may get better.
• Because we survived the previous day, month, year.
• Because it’s when loved ones get to show us how special we are to them.
• Because your birthday is a reminder of how amazing you are.

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Ways to enjoy your birthday when in a flare:

• Put you first! I find it helpful to make sure that people around me know how I’m feeling. Post on Instagram or whichever platform you use. An example could be, “Hey, I know you all love me (why wouldn’t you) and want to wish me a Happy Birthday, but I’m not feeling too great today, please understand if I can’t take your calls, I still love you and will get back to you when I’m able”. Don’t be afraid that it’s presumptuous, you can’t afford to be worrying about what people will think.
• If you have appointments, create a birthday playlist, songs that lift your mood, and make you want to sing while you wait.
• Wear a birthday badge, hospital staff get it. They’ll make an effort and may be that extra bit nicer because of it.
• Wear your favourite colour or item. I’ll put on my favourite piece of jewellery or wear purple underwear.
• Ditch the diet – obviously don’t eat foods that are detrimental to your health, but if you’re restricting yourself – give yourself a day off, eat the cake!
• Buy yourself a present. It doesn’t have to be big, just something that will remind you of your awesomeness and to spoil yourself.

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My 41^st birthday was a triumph because I no longer approached my birthday with expectations of how it should be celebrated. As the saying goes “another year older, another year wiser,” and with each journey travelled post-diagnosis I believe I am.