Anyway, we're in mid-lockdown as I write this. My wife has been self-shielding for 69 days, or nearly 10 of the 12 weeks. I think we were both clear that it wouldn't be 12 weeks and then business as usual, but I don't think we were quite expecting things as they currently are. I was imagining that at the end of 12 weeks the Government would issue further guidance for self-shielders and we could work with that. As it stands the government are sending kids back to school, unleashing barbecues nationwide, announcing that the rules were open to personal interpretation and if you're a parent you can pretty much do whatever. As I write, it seems that something like 50% of parents are ignoring the government and keeping their children at home. They don't have faith in the government, it seems. Neither do I.
What this means is that while people who are self-shielding have been told they can go outdoors a bit now. It doesn't mean either I or, crucially, my wife, are happy that it definitely is safe. My wife probably isn't the only person with a disability to feel that she isn't top of her government's list of priorities. Certainly she can't be the only person who has ever applied for PIP to feel undervalued. If official policy towards the vulnerable us as callous as it has been towards care homes, then my personal preference would be to keep my wife indoors until the next election.
Getting advice on managing or supporting long term health conditions is tricky enough at the best of times. In an ideal world we'd been able to call on the professor who gave us the Ehlers Danlos diagnosis, as we have a list of around 200 follow up questions we'd like to ask. Better yet, I'd happily trade in my carer's allowance to have a therapist on speed dial. That would be a dirty trick, though. I don't get carer's allowance.
The simple fact is that I have questions about how to be a decent carer all the time, but I would need four or five specialists on tap to give me all the information I need. Right now I have just one question – how do I keep my wife safe during this global pandemic? The good news is that I do have a source, for once. The bad news is that, as discussed, I don't trust this source. This is really frightening because I don't want my wife to end up as a number being announced by Matt Hancock while he struggles to keep a straight face again. So what can I do? Keep the pressure on my MP to keep the pressure on her boss to do better. Do my best to keep up to date with the science directly. Keep in touch with organisations like the carers trust. And hope this goes away soon.