It has been a while since I wrote anything on here about Soph, her deteriorating health, and how it has impacted her parents and I who care for her, but I am in a moment where I think its important that people try and understand her suffering again...

Soph's health deteriorated throughout 2020. She has been diagnosed with severe ME/CFS. She is now bedridden - apart from 2/3 times a day to toilet and watch the birds at brekkie - her pain has worsened and she now writhes in pain that is indescribable and unimaginable to most...

When lights go off at 21:45 for her, for the next two hours we hear her scream and wail as she lets out a days worth of pain and anguish which she tries to hide from us during the time we can see and hear her more. Despite everything she wants to make us as happy as can be...

Her speech has been getting worse. I now understand her mainly because we talk about familiar things. I worry that people who haven't watched her deteriorate would find her unintelligible. She can also only manage company for ~1 hour in total a day...

Her vertigo is frightening to someone watching it. How she copes with it I have no idea. Watching put her hands out every 30s trying to re-ground herself is heartbreaking and you do not get used to the scared scream of someone feeling like they're going to fall over and over...

At the end of 2019 (of i remember rightly) we had the head of Gloucestershire NHS out and they essentially said there was not much else they could offer Soph or her parents and me in terms of treatment or support. We have got through a year of pandemic essentially on our own...

At first lockdown I made the decision to switch my treats to a 1 week stay in every 4. When I am with her, I do the majority of the caring and it is mentally and physically exhausting. However it remains so important that her parents get the break they deserve...

I do not understand it personally but I also give Soph an emotional boost! Seeing her smile on my return remains one of the highlights of my life. Seeing her hold her face at the pain a smile induces is not...

I still work as an ECR and try do as good a research I can. I applied for fellowships last year and one may still come off. I do not think caring responsibilities are dealt with very well for ECRs in research but then again I am not exactly sure what else my Uni could do...

Given everything work is going extremely well and I imagine most people do not actually understand the severity of the situation. Papers still - eventually - get submitted. R code still - eventually - gets written. It all just takes a little longer than it used to...

My bosses, friends and workmates have all been - and continue to be - incredibly supportive. I go through phases where I want people to know about my situation and when I would prefer people not to be. I suppose I want to normalise talking about these things in science more...

We still hope Soph's health will improve. Her mum looks tirelessly for new treatments but it just feels crazy to be doing this outside of the NHS and modern medicine. She is the strongest person I know. She has so much to give the world. She will be able to one day.

As these threads are always horrible to read, I will say Soph still adores the birds. Even more so now. And the moon on the very rare occasions she can see it. I try and photograph both to show her the beauty of the things she loves. As she says: "Nature is magic"...

Go enjoy being outside and the simple things for someone who can't. If anyone has incredible photos/drawings of birds/nature they are willing to share for Soph she will appreciate them all.