Darkness, Hope and Special News – An Update from Kara

Close-up shot of Kara. She has cropped dark hair and wears glasses. She has an oxygen tube in her nose.

The following piece has been written by Kara herself

Thank you for being my light

For four years I have lived in a dark place. But it has been pierced with multiple small beams of light which, added together, have given just about enough light to help me keep going. 

If you haven’t guessed yet, that light has been you all. Every prayer said, every thought sent out to me through the universe, every message I had, especially when my life was literally on a sharp knife edge: they all made a huge difference. Thank you so much. 

When I said my final goodbye to you all in November 2020, I wasn’t being overdramatic. I had been told I would most likely pass away within a day or two. There was a time when my Mum and Dad were told I would die that night, and they sat with me, waiting for the end. There have been multiple scares, including me falling into a deep coma last summer, and my parents again being told that the end was imminent. How I am alive to this day, I do not know. 

Dark times

Over the last two and a half years, its been so awful I can’t begin to tell you. In and out of hospital almost constantly. We added it up and I’ve spent more times in hospital than at home by a wide margin. I’ve had so many cannula attempts I can’t believe it – I can guarantee it’s been well over 100 attempts, and that’s not including blood tests. I’ve been a regular in the theatre with the two midlines, the one central line in my neck and an attempted PICC line for long term access that went wrong.

Kara fighting for her life last year

There has been so much. The awful chest infections where my breath was so short I couldn’t say a sentence. Multiple times of things being so, so bad they called my mum, dad and sister, worrying it might be the last days or hours. It has been horrific and so few have known how bad it has been. 

The other tremendous challenge has been getting all the services working together so that I could go home safely. You don’t just have to fight your body but the systems too! Goodness it hurts. I’m so thankful to have my Dad and my carer managers fighting for me. 

A glimmer of hope 

What I do know is that I’m lucky to have been looked after by some amazing doctors. I feel like I’ve been on an episode of House, because they actually did all sit around a table with a paper pad scratching their heads, screwing the paper ideas up into the dustbin. Doing all tests they could think of, getting in touch with specialists, and doing multiple multi-disciplinary meetings, some online so I could join in. Eventually they came up with an experimental treatment that took over a year to put in place, and which had every chance of doing nothing – but which, if it worked, had the potential to be life-changing. 

I’ve finally had this six part treatment. I’ve now been home since 19th December without a single trip back in, and it’s February now! I’m now on a three month course of antibiotics and an anti fungal once a week too, and so far this seems to be working – but of course it’s early days. So we cross our fingers. 

Life still feels like climbing a mountain every single day, but I feel better able to face it, thanks to the time I’ve had at home. And for the first time in a long time, I feel hope. And that, my friends, is something I’ve not felt in very long time.

And finally – exciting news!

And next the exciting news from team Kara: the production of my second album/EP is officially in the pipeline! It is once again being produced by the wonderful Liam Hicks and his close colleague Alex McCrea! I never thought I’d get to do this again, so it is super exciting and means everything to me. I have poured my heart into new songs which express the depths of what I’ve been through over the last couple of years. It’s been a lot to process, and its just come out in song. 

It’s going to be a long, slow process but I hope you will be part of the journey. 

Thank you again for everything. 

Kara’s first album, It’s Still M.E, is available from all major platforms. It reached number 8 in the UK download chart in 2020

Her fundraiser (for vital research into severe ME) is still active, and donations can be made here.

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