Tag Archives: chronic illness

‘Shielding’ in a Time of Pandemic

community, disability, life, Rants and Ramblings,

download

I’m really too ill to be writing this, but I am incensed!

I aplogise if it doesn’t make sense, but I’m in my 4th week of non-COVID-19 pneumonia.

So, last night I just happened to walk in the room as the bbc happened to mention that vulnerable people would be allowed out from Monday.

I checked the Government website – nothing.

Then this morning I saw this tweet.

This raises three questions in my mind:

1)Is that what counts for a Government Announcement now?
2)What has changed that suddenly makes my very poorly lungs safe if I get Covid? (In conversation with someone they pointed out that it isn’t more safe – they’ve just got space for me in the hospital!)
3) there’s still nothing on the government website (and no communication via the inane text service that started and stopped)

I’m writing this listening to the Daily Briefing – and it makes even less sense because the talk is of extending Shielding at the same time as easing it.  I am very confused – and not a little furious – and unsafe.

This is all heaped on top of my experience of Shielding.

Register on Gov.uk as vulnerable they said and you will get lots of help.  I registered on the website the minute I got my letter, I have heard not one thing.  I have not heard from the supermarkets to get a ‘priority’ home delivery shopping slot (and I have spent absolutely hours on the phone to Sainsbury’s trying to get registered and failing), I have never had a phone call to check if I’m ok and I have never had a food parcel.  My husband has had to keep running the risk of going shopping once a week.

My GP surgery has, as ever, been fabulous, caring, helpful and cannot do enough to help me.  When I have had to go in to the surgery, they have had full PPE and all care has been taken.  So imagine my shock on going for a much needed x-ray during the week.  The hospital website lays out all kinds of rules.  I expected to have to account for my presence at the door, and to have to persuade them to let my husband come in with me…

But other than a large yellow sign that you walked past saying not to come in if you had symptoms, that was it.  I had no mask, as I had no intention of going anywhere. No one stopped us, asked us what we were there for, or gave us a mask.  It had been implied that there would be special arrangements for if someone with a cough needed an x-ray, but no. The radiographer had a mask, apron and gloves on, but the person on reception who stood less than 2m away to give me a gown didn’t – and no one seemed to mind that I hadn’t – even though it was a chest x-ray I had gone for.  I was shocked, but a friend said she had heard similar in another hospital.

I can’t really write any more, but just needed to share this.  My lungs are really not good.  COVID-19 is I am sure, the last thing they need.  My GP surgery has been doing its absolute safest best – but I’ve seen little evidence from anywhere else.

(Oh and I would absolutely love to see my Granddaughters in the flesh, amongst other people – but I’d like to be able to see them for the next 20 years!!)

 

Top Tips for Isolation

community, disability, life, ,

I realise I never shared my top tips here – in case they help anyone in this difficult time.  All gained from 15 years with a debilitating illness that keeps me home most of the time. And as someone who is in the ‘shielding’ category, to remind myself when I am beginning to forget them.

As shared on the brilliant website of my friends (lots of other helpful stuff on there too – do take a look)

  • Keep in touch
  • Don’t make all your contacts from within your “tribe” – see other perspectives
  • Always have something life enhancing in your day
  • Still eat as healthily as you can
  • Get whatever exercise you can

– and don’t turn on the TV before lunchtime!

Hope they help!  Stay safe

A Strange and Vulnerable Land

community, disability, hope, life, love, Rants and Ramblings, , , ,

I have found the last couple of weeks really hard. Not because I am stuck at home, I’m used to that – though I am missing being able to go out for a brief meander when I can, but because social media, once my lifeline and refuge has been taken over. I am not proud of that, but it is how it is.  I have practically stepped away from Twitter (though this will still post there!) and Facebook, which always seemed kinder is becoming difficult too.

All of a sudden people are bored, or triumphant of how they have coped with one week of being at home in social isolation.  I’m sorry for you if it is frustrating and you are missing your ‘normal’ life, seeing family and friends and feel that you have nothing to keep you occupied. I am delighted for you if you have been able to find quality time with your household, have learned something new, or new ways of doing old things or feel your life has been enriched.

But for some people this week will have been absolute hell.  Perhaps the people in their household are the last people they want to spend time with, or are actually dangerous to be with. Perhaps this week has been a final straw emotionally, financially or health wise.  Perhaps it has underlined all that is wrong and it is difficult to see a way out.

And for some vulnerability, isolation and being stuck at home is their norm. For the people who love them they were already sacrificing and giving so much. I commend to you this article by the excellent Chronic Illness Inclusion Project that expresses it better than I can.

It was our life long before this and will be our life long after this.  We always miss out on social events, going out and about, visiting the cinema, taking part in groups, going to the pub and almost anything that involves leaving your home and sitting somewhere else; or if we do it takes such an enormous effort and payback it’s probably seldom worth it.  Yet no one before has offered them such plethora of faith live streaming, invites them to virtual meet ups, checked on how they were doing, offered to do their shopping…

That is our life, we get on with it, we have our own networks that we operate from our sofa or bed. And no one really gives it a second thought. Everyone is, quite rightly, going about living their lives. Few have thought about the socially isolated – until now. Though to be honest it feels as if most are thinking about *their* social isolation, not those for whom it is their normal.

And then this morning I saw this:

It is a fabulous vision, and there will be an after.  I truly hope people have learned and will carry forward lessons on community and healthy ways to live. But not all of us will be able to leave the social isolation behind. It is our ongoing reality.

When ‘after’ comes and everyone has gone back to their busy lives, even with their new insights, will the online connections still be there for those still inhabiting that land? Or will they disappear? Perhaps that is something to think about.

Is your friend, family member or colleague still socially isolated? Are they living in a dangerous place that continues to need your support? Will you go back to hang with your tribe, or will you remember the new tribe and new ways you have found?

I know we are all doing our best in this strange time and place we find ourselves. But spare a thought for those for whom this is not new, or truly not safe and for whom ‘after’ will not be a bright new dawn, but a same old same old.

Thanks.