What if we viewed lived experience as an asset? As an asset of professional, economic,…
Come along with me on a week of my life, covering 15th-20th September, in which I had a very full-on time, various Skype calls/conferences, leading a virtual workshop, 3 separate speeches, and an NHS England meeting, and everything I got up to. I hope it gives some insight into my life and both how challenging and how amazing it can be. The ups, the downs, the toll what I do takes on my body, and the incredible highs and positivity of the work I do and the joy it gives me.
I love my life, it isn’t easy, sometimes I wish people could just spend a day in my place and everything I deal with, but also because I’d love people to see just how much is possible in spite of the difficulties I face – to experience the constant hurdles and challenges I have to overcome, the ‘payback’ for what I do, the suffering I endure, the times of complete desperation and feeling like I just can’t cope, and based on that experience to be inspired and motivated to think “what can I do, with what I have now?”. When people ask me how I do what I do, I always say “I do my best, with what I have, for as long as I have it, and make the most of it”. Living with a degenerative life-shortening condition is not easy and this year has been a massive struggle, I don’t feel going on and on about things helps (will explain a bit briefly below) but sometimes I do myself no favours in that people see the life I portray and the things I get up to and have no concept of the suffering and struggles and hurdles, the horrible conversations we’ve had to have, fighting against my body and the payback I suffer for pushing my body beyond its limits all the time, and the absolute terror I feel when confronted with the reality I try to distract myself from – it’s not denial, I don’t deny what’s happening, but I do everything within my power to constantly divert my mind away from dwelling on reality.
The truth is, my infections – the 4 incurable infections I’ve had for many years (and possibly others we haven’t yet identified) – are now so severe and so resistant, that every day I am symptomatic – daily fevers (up to 38.8˚), chills, rigors, sweats, muscle and bone pain, headaches, nausea and the pure exhaustion and worsening fatigue – and my CRP (a marker of inflammation including infection) refuses to drop below 27 – it’s currently 32, up from 28 on 5th Sept – not horrendously high, but under 9 is normal and when you consider October starts on Tuesday, having had an elevated CRP for almost 10 months now is not normal, but we don’t know exactly what it is that is causing it. I was at the hospital this Tuesday just gone, and am back again this coming Tuesday, for yet more tests, but my team have no ide what it is, or what to do, and are thinking of doing some scans. The resident E.Coli in my kidneys often makes me septic (causing 9 out of my 14 episodes of sepsis), but urine cultures only show mixed growth due to my Ileal Conduit (Urostomy), blood cultures are fortunately negative, the other infections don’t usually – though possibly could – make me systemically ill (Staph Aureus and Pseudomonas in my PEG site and Faecal Streptococcus in my redundant bladder that means my bladder constantly is pus-filled and leaks) – and they’re even considering now if it’s another type of inflammatory problem that could be elevating my CRP and causing the fevers, chills etc, or whether it’s an infection we just can’t find, or it’s a combination of the incurable infections I’ve lived with for years getting worse. I just hope we can get to the bottom of it, as antibiotics just don’t work so I have to live with these symptoms and push through, but it makes life bloody hard, and I feel like utter s*** all the time. We’ve had some unpleasant conversations, I am updating my advance care plan to take into account changing needs and preferences – I finally will be doing a DNACPR, I’ve never felt ready but now I know I need to do it – alongside all my other documents, and mum finds it really hard to think and talk about. The consultants have basically said that now, there’s little we can do. I’ve been palliative for almost a decade since those initial conversations informing us my condition was going to prematurely end my life, I shouldn’t have seen my 18th birthday, and then the expectation was that I wouldn’t exceed my early 20s, and it’s my 26th birthday next week, but despite being ‘palliative’ there have always been things we could do, or try, interventions, or meds, or surgeries. Now there is nothing. The goal now is just to try and keep my failing body going for as long as we possibly can, and hope that it does so for a very long time yet.
But, when all’s said and done, I still love my life and will continue fighting to live it to its fullest. I don’t have time to be ill, let alone to die! I have too many plans yet to fulfil. And life is only just getting good too.
Sorry for a very long waffling post. This is only scratching the surface of what’s going on right now but I won’t bore everyone with everything – I just want people to appreciate that the life I portray on social media is far harder, more difficult, more painful, and more challenging than I portray on social media, and it’s not as wonderful in many ways as some may think it is. But I still love my life, and will fight to the death to live it to its fullest.
Just do your best, with what you have, for as long as you have it, and make the most of it. My illness isn’t any less severe or less complex, or need any less intervention and invasive support, if anything it is more so, but I just do what I can to push through, push my body, aim high and do all I can, whilst I still can.