They say I’m a high risk and cannot g... - Hughes Syndrome A...

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They say I’m a high risk and cannot go out yet.

Teanna profile image
9 Replies

But I’ve got APS, Lupus, Liver failure which is now under control, Under active Thyroid, plus a few other issues. But none of these affect my breathing etc. So why won’t they let me go out for a bit of fresh air???

9 Replies
Ray46 profile image

No one here will know, people don't get told the clinical reasoning when they are told to shield, or indeed when told to stop.

I have APS, Thyroid and Hypertension, all treated, stable and under control, I don't have liver failure or Lupus or other things. I was shielding, isolating from my family (and glad I did - my wife had it) before they told me to, based on my own assessment of my risk. My wife is medically trained and agreed with that assessment, even before she brought the virus home.

The more we find out about this disease the worse it looks for APS - Covid now looks like it _is_ a often sticky-blood disorder, possibly even _primarily_ a sticky-blood disorder (in terms of fatalities), and possibly one worse than APS. We already have a sticky blood disorder, we really really don't need another one. It isn't actually the effect on breathing that is killing many (possibly most) covid casualties, it is the blood in the lungs failing to get oxygen due to clotting.

I don't know which department or specialist has put me on the list, or if it's my GP (which I doubt), I don't know exactly why, I could ask but I don't want to bother them at this time, I have accepted that I am shielding. But if you have concerns you can, and should, get in touch with your doctors to discuss, they _are_ still there. The NHS guidelines make it clear that shielding is not compulsory, but stopping should be discussed with your doctor.

Teanna profile image
Teanna in reply to Ray46

Thank you. I did ask my pain management team why? He told me that I was vulnerable, but vulnerable to what?? I did ask but got no reply. My GP is still away on bereavement & on my notes it’s has no one is to advise or prescribe this lady any medication. So I’m none the wiser apart from feeling very low.......

Keep safe


HollyHeski profile image
HollyHeskiAdministrator in reply to Teanna

I'm self isolating, but I do go out for a walk each day, Im lucky as rural, I dont come across other people often, but if I do, I stay well away.

It's important to get fresh air and exercise daily, if you can by avoiding other people please do.

I'm just coming up to the start of my 13th week, I think I would have gone mad if I didn't get out at all, still avoiding any form of food shopping or chemist.

Teanna profile image
Teanna in reply to HollyHeski

Hi HollyHeski,

I live in the heart of London, although I’m in a lovely part, once you come out of the cul-de-sac (which is beautiful), u are then in one of most busiest parts of London, although the food shops were opened, now they are letting markets trade, we have a big market, lots of small shops will open, it will be impossible to keep to the distance rule.

So I’m really feeling it mentally, although I have a full time carer, but it’s not like seeing my family.

So I’ll have to bide by the rules that’s if I have not lost it by then. At least we have good weather.

Take care and keep safe


HollyHeski profile image
HollyHeskiAdministrator in reply to Teanna

Yes I too are missing my family, my son although severe asthmatic has now been forced to ho back to work and my daughter, stuck on 2nd floor flat, on her own in Londo, she has a communal garden but since the beginning, its been used by all the children in her block (together at same time!) So she's too afraid to go out into it.

Both say they can't see me for a long time, as really don't want to put me at risk.

I find now with people being un locked and more and more out and about, harder mentally but I'm very careful when out walking and particularly pick my timing carefully.

I will be avoiding any areas of groups of people for a long time yet.

Here in the South West we have been low but this is now changing and we are at .9 on the scale. Our beaches the last few weeks are packed! So expecting high numbers of new cases. They are still building our Nightingale hospitals.

I think the stay at home message other than daily exercise is the one to still follow.

Take care

Teanna profile image
Teanna in reply to HollyHeski

Hi HollyHeski, the only bonus I do have is that I have 2 gardens, 1 small out the back and I large at the front. I’m just having the front done, I’ve put a UV canopy outside the back, and now I shall do the same at the front, and the fake turf, and my plants, at least I’ve got the choice of 2 gardens. And I loved to paint, make jewellery and making cards. I was doing this but it’s the ulnar nearby that’s trapped, so there is so much I can do. Anyway, I suppose it’s more than most that I have 2 gardens. But I do need at some point get out.

Thank you HollyHeski for making life a bit easier.

Take care & stay safe.


Ray46 profile image
Ray46 in reply to Teanna

Not exactly good continuity-of-care planning from your doctor, but they are only human - I've known clinicians who have got upset about others messing with (or messing up) their cases and then also got upset about being called when not working!

Good news (maybe) is that it looks like shielding guidelines are about to change - BBC has this tonight:

Personally I'd still be very wary. I am lucky in that I have a garden I can go out into (although i didn't for the first couple of weeks, so I know what it is like if you don't), but it is actually feeling less safe out there than at start of lockdown because neighbours are busy "unlocking" everywhere and there are lots of strangers in the other gardens. Also watching the road from the front door it is clear that people are no longer giving anything like 2m space when walking past other people - at the beginning of lockdown people would walk into the road to pass, now no one bothers.

Generally outside is less risky than inside, but if you are in a flat and have to go through shared spaces to actually get outside then that will be higher risk, if so I'd suggest being very careful what you touch and washing or sanitising hands afterwards.

Problem is we often don't know where the cases are, there are some stats available (e.g. London looks reasonably safe now, up here in the North, less so, some areas still going up) but you may only find out about the one on your street or in your building by word of mouth, probably when it's too late. I know of someone who was supposed to be shielding but went out for a walk every day convinced "it's not in the village yet", bit of a shock then to suddenly find out her neighbour was returning home after a couple of months on a ventilator...

I'll be sticking to the garden for now, but keep an eye on the news - things may be changing soon, even for the shielded.

MaryF profile image

If you have any worries, please do give your GP and or main consultant a ring, and see what their current opinion is on your own personal case. I shall be doing this again with one of mine. MaryF

Teanna profile image
Teanna in reply to MaryF

Hi MaryF.

It’s strange that I phone my pain manager yesterday (Saturday), & asked him whether or not I could go out? As I said in an earlier message, he said that I was vulnerable & to wait until the gov tells u to.

But I’m more scared now to see how many people that are out, disobeying the distant rule, & it doesn’t help with this weather, all the families have got together & had picnics etc, (I’ve seen it on our local TV news). That’s why I love the place I’m in. The tenants association call me twice weekly, the neighbours are great as they know that I’m not allowed out & ask if I need anything etc. But all I could hear today was traffic, sirens going, aeroplanes & a lot of noise. When we was on complete lockdown, u could hear a pin drop.... I also don’t understand is to open markets, what is that all about??? So it really scares me to GO out. I feel so scared bt also lonely. I know I have the gardens, both gardens you can only get them through my apartment, the back garden has patio doors and the front garden is fenced in & the entrance is through my Lounge & again I have patio doors but my fencing is 6ft (2m). So I have more than most families. I’m also wheelchair bound which don’t help with the weight.

I’m really lonely & depressed.

That’s enough of me, I keep repeating myself, bt that’s the first sign of madness.

Regards, keep safe to all....


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