Think I've been told off by GP. lol.: Had to phone... - LUPUS UK

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Think I've been told off by GP. lol.

Boudica1 profile image
30 Replies

Had to phone GP this morning as I'm having a bit of a problem with the chest, wasn't sure if it's the Asthma or other lung problems or the Arrythmias as both causing a problem. BP monitor showed 175/110 but luckily the pulse rate had gone back to normal as during the night a few times it could be around a 100 and suddenly drop into the 50s. Got put on prednisolone and something else, can't remember what she called it and will have to pick it up from the chemist later.

What did she tell me off about? I'm supposed to be shielding but I still have to go shopping because I can't get a online delivery service.

♥️

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Boudica1 profile image
Boudica1
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PMRpro profile image
PMRpro

If you are in the UK you will find a phone number for the RVS service in a post of mine from yesterday:

healthunlocked.com/lupusuk/.......

I think I would have asked her who has invested her with the power to order you about.

Advice is acceptable. But that is where it stops unless we are provided with a much better reason for this ongoing home detention. Nobody was asked to vote on whether it was ok to lockup the population indefinitely.

If you go to Sainsbury's online there should be details on how you can get on the vunerable list if you are not on it already. But I am myself not particularly impressed by their service. Substitutions are often nothing like what was wanted.

Most of the other supermarkets do similar.

happytulip profile image
happytulip in reply to overnighthearingloss

I think that if we are advised to shield then we should. I'm in the shielding community. I don't like it but the way I see it is that if I get sick I would likely land up in hospital putting even more pressure on the amazing staff in the NHS and also putting them at risk from yet another CV-19 patient.

A friend who is a critical-care nurse phoned me this morning at 08:15 after a horrendous night shift. There were tears. She just needed to vent. Last week we lost a dear friend and colleague to CV-19 which she caught at work and another is in his 3rd week of ICU on a vent. We owe them a responsibility.

I get the frustration and I understand the difficulty in getting delivery slots. I was having problems but once I had registered with Tesco and spoke to Sainsbury's I was getting slots become available. The council had also offered me a food parcel too.

It's a difficult time and a very risky time. We all need to stay as safe as possible. I hope you get a better delivery service.

overnighthearingloss profile image
overnighthearingloss in reply to happytulip

I felt you deserved a reply. I have messaged you.

I am yet to be convinced that the current response is entirely correct.

nanleighh profile image
nanleighh

Hi Boudicca, I am worried about your blood pressure, that is very high. Are you on blood pressure medication?

Boudica1 profile image
Boudica1 in reply to nanleighh

Yes it's a bit high even for me but it can just as easily drop the other way along with the pulse rate which can drop into the 50 or 40s for a bit and then back up again. They did put me on Calcium Channel Blockers last year but that not only reduced it but kept the BP and pulse way to low and causing all sorts of problems so I stopped taking them.

Thanks for your concern it's much appreciated 😘♥️.

Take care and keep well.

♥️

Merkat90 profile image
Merkat90 in reply to Boudica1

Hi boudica1 I have something called dysautonomia this makes my heartrate go high standing moving also have lows 45s to also struggle with my blood pressure it goes low low 64/70 then I have 234/179 (picture evidence of this as.my doc didnt believe me after 5 new blood pressure machine they did ) my life is daily struggle esp with two children but I have always got time anyone wants to understand it or needs advice hope everyone staying safe in awful time here In uk I am shielding

Freckle1000 profile image
Freckle1000 in reply to Merkat90

Hi Merkat,

I have POTs. from SLE damage.

Probably not the time to bring it up - but drinking tonnes of fluid - especially first thing in the morning - unfortunately giving up caffeine - and rehab excercises ( squats and step ups - as well as excersises that puts muscle mass on the legs and arms has helped reduce my autonomic extremes. The excersise stuff is hard in shut down - (and when I started it was the most anti - intuitive thing Ive ever done - but it did help me quite significantly )

If you want to know more about the excersises - just ask.

Boudica1 profile image
Boudica1 in reply to Merkat90

The wildly fluctuations of the BP and pulse rate is a concern and the GP has advised me that if/when it happens again along with the very uncomfortable ( my words) palpitations and breathing problems to go straight to A&E. There they can not only monitor what's going on but also give me a injection to try and stabilise things as the hospital have to monitor the effects of the drug and GP surgeries are not allowed to give this injection as they don't have the same monitor's or the training. Sounds a bit scary but I guess instead of toughing it out and wait for it to stop I have to bite the bullet and get the big white taxi.

♥️

Merkat90 profile image
Merkat90 in reply to Boudica1

Also calcium channel also made me very I'll due to mast cell disease

It isn't an either/or choice necessarily.

That black or white response is a direct result of all the fear porn you have been fed by the media.

Fear is something that has the effect of making people abandon their rights.

People need to be able to step back a little and start to make more nuanced responses.

I am not a passive patient. I take many steps to fend off infection without even involving my GP.

I am a control freaks nightmare as I am proactive in my own right.

My current attitude stems directly from being totally out of control at an earlier time and indeed spending time in ICU and very nearly on a ventilator.

I now do my utmost to ensure no further repeats. It can be done with the necessary reading and learning how to combat infections at the earliest opportunity. Or even better warding them off completely.

There really is much money to be made by those heavily indebted to pharma approaches.

The same big names seem to be linked time and again whenever there is a virus scare.

This is not the first. H1N1, SARs, Zika, Swine Flu, Ebola etc. This is however the first where they have taken it a step further and decided to lockup the world.

The effects of this are many and varied. Food production needed for everyone to survive is just one of the chains being hit.

You know what is being reported. Think a bit on what is not being reported.

I have stayed home. But I can see increasing reasons to question this.

We also do need to get the economy going again for a multitude of different reasons and it's not a reasoned response to say that to do so will just kill people.

It may be that if a second wave is due it will be more successfully countered during the summer months anyway.

This is not the black or white issue we are being encouraged to adhere to.

See this from an NHS doctor

drmalcolmkendrick.org/2020/...

Roarah profile image
Roarah

I have spent weeks in an icu and I can tell you now the prospect of shielding until this virus threat ends, which let's be realistic is most likely years from now, is far worse than facing death. I have followed the rules in the us since the end of February but i can not do this much longer. This is not living:(. I think Sweden is doing it better and their fatality per capita is now lower than the uk I believe.

overnighthearingloss profile image
overnighthearingloss in reply to Roarah

ukcolumn.org/article/who-co...

I know you have similar players in the USA.

happytulip profile image
happytulip in reply to Roarah

It's interesting how we are all managing differently. For me, lockdown isn't too bad. Don't get me wrong, I don't relish the experience but because I am so extremely intolerant to UV light (it is so severe it has caused organ damage), I have to isolate indoors from about April to mid September every year. I used to love the summer before I got lupus but since I have become so UV intolerant I have become very isolated so I've become used to it.

This is the time of year that I usually find the most mentally difficult because a lot of my friends are going out and about and doing all the outdoor activities that I used to love. But now because they aren't going out I'm not getting FOMO. That must sound really selfish?

A few of my friends have been in contact saying that now they are beginning to understand what it must be like for me in the sun months.

The one blessing is that at this time of year the evenings are longer so I can get into my garden when the sun has gone in.

I wish it wasn't due to a pandemic and all its tragic events but having to stay hunkered down and away from UV has definitely prepared me for this and is helping me cope a lot better than some I know.

But I agree, it's not living, it's just existing.

Amakura profile image
Amakura

I'm in the same situation. I suppose your GP was, in a round about way, displaying hard love due to them being on the front line and witnessing the virus first hand.

I haven't told my GP, despite being put on steroids and having asthma plus a recent lung flare, I still need to venture to the supermarkets. The government delivered food, the vast majority of it, I can't eat due to it triggering my asthma and eczema. My pharmacy won't deliver my medication plus I have no friends or able bodied family to help as well. My local authority were meant to allocate me a volunteer to assist with my shopping but how many weeks in, no one has presented themselves at my door.

When I've got to venture out into the 'virus jungle', I make sure I go during the early hours after the essential worker plus elderly time slots, as hardly anybody is in the supermarkets etc. However, this week, is the complete opposite. It's very busy out there. So now I'm googling businesses that can deliver items or even offer a volunteer to assist me with my shopping.

As soon as I get home, I bathe, I wash, I disinfect everything but I'm aware I'm playing Russian roulette.

All in all, don't be too harsh on your GP and it sounds like it just came out wrong. Her delivery could have been a bit more softer but the core essence of what she was trying to relay was care.

Stay safe

Boudica1 profile image
Boudica1 in reply to Amakura

I'm not being harsh on GP I actually found it amusing in a way. I was put in the sheilding group due to the multiple lung problems and Arrythmias I have plus a host of other things. But I'm also my husband's carer at the same time but he's not on the list.

I am finding at the moment the same as you about shopping and it's actually a dream if you can pick the best time. I check out the ques outside and if it looks ok it's good to go and get round with no bumping into contact with anyone.

I think the problem you had this week is more than likely due to those people who are paid at the end of the month which is why we tend to try and keep well away from Supermarkets at the end of the months even in "normal" times.

I've been getting phone calls from the council for help with food and shopping and the like so will probably go down that route.

Take care and keep well. ♥️

Frosty1960 profile image
Frosty1960

Can relate to that my surgery had missed me for shielding letter not suprised as they are hopeless, meant no chance of getting a delivery so have had to go for odd bit to keep me going I had stocked up before lockdown but am getting low now will hopefully be able to get delivery now otherwise will have to suffer trip to supermarket not something I look forward to. 😟

Merkat90 profile image
Merkat90 in reply to Frosty1960

I also didnt get a letter or call

bluebell99 profile image
bluebell99 in reply to Merkat90

Have you registered on the GOV.UK website? They tend to tally up the information you give and your doctor's surgery through your NHS medical number. Tesco and Sainsburys were both quick off the mark in adding me to their vulnerable list. They sent an email confirming this within days. Your local authority can help with getting prescriptions and deliver a free box of essentials to keep you going.

There are plenty of volunteers out there, just google your local area.

Merkat90 profile image
Merkat90 in reply to bluebell99

I seem to been real lucky got asda shops online so far

Boudica1 profile image
Boudica1 in reply to bluebell99

Yes I am registered on the Gov site as extreme high risk and so far my experience with the supermarkets online shopping for the vulnerable is zero and I've even checked the Gov text to make sure I've filled it in correctly. So at the moment I either have to take the risk and shop or rely on the handouts from the local council.

So far the whole experience is ridiculous and just adds to the feeling of why bother and thats on top of shielding making me feel as if I'm either under house arrest or worse like I'm back in the medieval times and a leper who has to be avoided by the "healthy population", thats how it feels to me when things are delivered to the door step and they almost run away.

I know this is supposed to be for my own benefit/safety and try to keep myself occupied but when you feel healthy and am also a full time carer for my husband who isn't on the high risk register it all seem to be totally bonkers because if he goes out and does everything they say he could still bring the virus in to the home. Sorry I hope you don't think I'm being ungrateful but to be really honest at the moment I might just as well be going about my "normal" life and to hell with it because living like this isn't life at all.

Sorry to be such a moaning Minnie.

X

bluebell99 profile image
bluebell99 in reply to Boudica1

It sounds like you may have fallen through the gaps. Please don't apologise for feeling frustrated and ignored, many would and do feel the same.

I can only suggest you enrol the help of your county council, they may be willing to sort this all out. Failing that you may have to endure the long wait on your favourite supermarket helpline. I have heard of others who have been successful in that.

Keep your chin up, apparently there is light at the end of the tunnel if politicians are to be believed and it can't come soon enough for all of us.

Xx

Frosty1960 profile image
Frosty1960 in reply to Merkat90

Its so frustrating as besides lupus I have chd and have problems with breathing after losing half a lung to cancer. 🙁

awareness75 profile image
awareness75

Sorry for this question, but is this thread a continuation of a previous one? You say she told you off by saying....?

Boudica1 profile image
Boudica1 in reply to awareness75

No its not a continuation of a previous commitment. The first part was explaining the reason for the GP consultation and the second part was because of the difficulty of being in shielding as I'm actually my husband's carer and can't tell my daughter about it because she has Bypolar and is easily tipped out of balance if you see what I'm saying.

X

awareness75 profile image
awareness75 in reply to Boudica1

Most people know, it's not that simple to cut yourself off from any routine you might have, especially if you fall into a corona vulnerable category. Your GP and to be fair, some other health professionals sometimes lose sight of this. If we were a communist type country, complete isolation might be easier because our lifestyles would be less diverse. I think the powers that be and authorities are now finding out, just how different everyone's life and needs are, but the hard way.

AimeeA profile image
AimeeA

Boudica, physicians are on the front lines of everyday seeing the damage and death caused by covid, so they must take it very seriously since they see up close and personal the effects of it.

So I imagine they are very overtired and can be cross with people, but it is out of concern and trying to impress on you how serious the damage and death from covid can be. They are just trying to protect you.

Boudica1 profile image
Boudica1 in reply to AimeeA

I know my GPs are worried about me and not only because of the covid 19 virus. Like most people I'm very independent but I am also somewhat stubborn when I'm feeling unwell and have a very bad habit of sitting it out and waiting for whatever to pass. But she has explained that some of the symptoms I was having could be very serious and cause some dangerous effects.

Can't think of the right names of what's what, still tired and brain fogged and all I want to do at the moment is sleep.

I do remember that she said it could be something to do with the Sjogren's or be something completely different.

My body has a very annoying habit of playing up with nothing much showing in the bloods which makes it difficult at times.

So now I have to wait for it to go crazy again and get to the hospital.

The phone hasn't stopped ringing today what with the GP but several times from the local council about help with food shopping and so on and then the garage we use letting me know that they are still working for the front line and key workers so explained things to them and they are doing the mot (car safety checks by law) as it's due this month.

Thanks for your reply it's time I get some sleep as this flare or episode of what has left me exhausted and I'm having trouble keeping my eyes open.

Take care and keep well.

♥️

Cann profile image
Cann

What do they expect - you to stay home and starve to death? Many of us are in the same situation and have to do our best to survive. Take care. x

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