Week 6

At least, I think it’s six weeks since we started isolation? I lose count. 

We are all doing OK. We now have priority access to supermarket deliveries from the government sharing the extra vulnerable shielders lists, we can now start to repay the kind neighbours who have helped us before now. We have had no issues with drug supplies yet (even had the local pharmacist deliver to our door so we can avoid pick up in person). And best of all, Isaac is well. He finished the anti-fungal treatment with no issues with his liver function (but with the dry lips again, but not bleeding like last time). The community nurses came the other day for bloods and post flush, and it felt really odd to have someone else in the house again. 

I’m so thankful that the kids are coping so well with lockdown. No, they don’t study all day, but they create, they write, they get energetic, they play with each other, they redesign their rooms, and best of all, they seem happy. For me, I am more restless. I want, and I miss. And for now, I’m just trying to park that whole question about when this might end, not so much for us, but for Isaac, and all those others more vulnerable. Sending out the biggest virtual hugs to you all. And thank you to everyone who has messaged to ask how we are doing, never ever get sick of all that kindness. Stay well x 

Never felt so lucky to have a garden (and our now completed new pond) and lakes nearby for dog walks; I hope these pictures cheer you, rather than frustrate if you can’t do the same!

 

Who gets treated?

I’ve just seen a CF Foundation (US) update that tells viewers that they are having to urgently advise doctors that CF lives ARE now worth saving, that things have changed, that having CF is no longer a CERTAIN death sentence. It seems that doctors are being forced to choose who to treat, and those with genetic or chronic illnesses may be bumped off a list. I have no words. Sorry, this is a really crappy blog update. But it’s very real. 

Oh, my Obie love! 

Drowning in ‘what if’s’

I can very easily drive myself crazy with ‘WHAT IF’S’.

My endlessly whirring and annoying mind. 

I am forever looking for ways to try and quieten them (...alcohol... sleep?) or shun them (... it is not going to happen head in sand approach, or the fact finding research, choosing only to read the studies which look to disapprove my worries). 

But never more than now are the what if’s trying to escape, run riot, shouting and screaming at me (the little shits). 

And I’m not only worried about Isaac (and others) contracting the virus.

Reading about the exit strategy for Corona Virus lockdown, it seems very likely to be a staged approach, with different categories of potential release based on; a) if you have COVID-19 antibodies b) age group c) geographical location and d) your status in terms of vulnerability. 

Makes sense, it’s never going to go from all to nothing without a sure fire second peak (anything like herd immunity will still be a way off). So, maybe the young, and those in rural areas getting first release? Or schools only (a model I saw today supposes that the school closures only reduce mortality rates by 2-4%)? And those who have already had the bug getting back to work sooner (this assumes immunity lasts sometime, which we don’t yet know)? But in all of the scenarios I read about, one thing remains the same; those on the extremely vulnerable list will be in lockdown for longer - and reports vary on this from being weeks, months, possibly a year... even, until the vaccine is available (likely, autumn 21)?

So, could we be asking Isaac to stay home, shielded for up to 18 months? 

What might the psychological impact of that be, on a fifteen year old? The impact to his physical and mental health? His education? His social skills? His relationships? His sports? His whole life? I can’t even begin the fathom this, and to be honest, I just don’t want to. I know this is worst case scenario, but that seems kind of fitting for 2020 so far. 

Sorry, feeling a bit... depleted. We are all well, and have everything we physically need. Isaac started another round of anti-fungal treatment for the aspergillus growing in his lungs, his fantastic CF team are ensuring we have a supply of all we need. We have community nurses coming over this week for his monthly port flush as normal. We have fish in our new pond, and have been enjoying the sunshine, camping in the garden with the kids. Lots to be grateful for too x