Happy 2020!

Happy New Year, Everyone! Oh my goodness, how is it 2020 already? I was discussing this with some friends this afternoon, “how am I 26 years old but have lived through 4 decades and seen a new millennium?”, It’s absolutely amazing when you think about it. Firstly, I would like to apologise for my long absence from blogging on Terminally Tough. I have kept the majority of our social media running and as you can see, TT has had a bougie little revamp. I’ve had lots of questions from my regular readers and followers as to why I stopped blogging on TT for so long and I believe you deserve to know the truth.

Unfortunately, due to legal reasons I cannot divulge all the details and as this loosely involves my children, this is all I am willing to share. Over the last few years there has been an ongoing custody agreement with one of our children, one party became nasty and my family became targets of abuse. Some of this abuse became so harmful that it was reported to the Police and dealt with as a disability hate crime. Sadly, this disability hate crime has come in peaks and troughs over several years now and earlier this year it became so bad, that my life was put in serious danger. It has been dealt with by the Police and hopefully that is the end of it. However, due to the nature of these offences, I was advised not to blog until the abuse had stopped (just as a precaution) and because of the severity of my health and circumstances, I was put on an adult ‘at ‘risk’ register by social services.

Now that situation has been dealt with, my family and I are living a much safer and happier lifestyle. It is true, my health has deteriorated but that is just a side effect of having these types of conditions. It is something we live with every day, it is our ‘normal’ and apart from poor health I have a wonderful life. For me 2019 whizzed by and from one perspective I am glad of that because my health hasn’t been so stable this year. My regular followers and previous readers will know that I have a suprapubic catheter.

A suprapubic catheter is a hollow flexible tube that is used to drain urine from the bladder. It is inserted into the bladder through a cut in the tummy, a few inches below the navel (tummy button). This is done under a local anaesthetic or a light general anaesthetic.

– Bladder And Bowel Community

My SPC (suprapubic catheter) got stuck one afternoon when my nurses came to my home to fit a fresh tube. I was sent to my local hospital who forcibly removed the old tube and inserted a new one. This caused permanent damage to the SPC site and my new SPC became stuck to my bladder wall, scar tissue had grown over the end (blocking the urine flowing freely) and I was in agony! An SPC is supposed to be changed regularly, mine are changed every 6 weeks as I’m prone to infection, but my local hospital left the damaged SPC in for 20 weeks. Due to becoming septic, excruciating pain and heavy bleeding, I was rushed to my specialist hospital in central London 3 times over a 5-day period. I was admitted and had emergency surgery to remove and refit my SPC. I have never received
such exceptional care in all my years of hospital treatment and actually onlyhad one PTSD episode whilst I was an inpatient (which is unheard of for me).

To find out more about the kind of catheter I have this link to the Bladder and Bowel Community, who explain it in more detail with very little medical jargon.


Now that 2019 is over and despite the levels of pain I am still experiencing, I feel refreshed and ready to take on whatever 2020 brings. I hope it has many glorious opportunities to offer, not just to me but to the ones I love. My family and friends have been incredibly supportive this year and so have my loyal followers. I have to say that the highlight of 2019 was of course the birth of our beautiful puppy, Tywin and the biggest low was losing our beloved dog Chippy. With Tywin joining our family, I felt like I had a new purpose and totally re-immersed myself in the world of puppy classes, dog parks and of course, supported Anthony in founding and opening his business, Buttons & Leash Dog Walking. Disability and chronic illness is relentlessly lonely and isolating for me, so one big joy of having Tywin so young, meant that we had to socialise him. Socialising Tywin has allowed me to make some fantastic new friends, friends I now cannot imagine my life without.

Moving away from South London 4 years ago and being unable to work or transport myself places, meant that I struggled immensely to socialise in my local community and build new friendships or support networks, but Tywin has completely changed all that. These new friends of mine come from similar life circumstances and we click on a much deeper level that I first imagined we could. They have been a tremendous wealth of knowledge, support, suggestions and laughter, so they are my second greatest aspect of 2019 and a part of me can’t help but think “did Chippy send them to me?”. I hope you all thoroughly enjoyed your festive period and treasure your new year even more.

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emerging trends in technology and intelligence

Ella Hollis

Trying to find normality amongst multiple chronic illnesses.

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