Coronavirus: self isolation and practical tips

Oh my goodness! Off the forum for 5 weeks and it has been so busy. What did we do before coronavirus? Seriously, I have been overwhelmed by the care I have received from my surgery, A&E, everyone in my local hospital (especially the SCU nurses who were also dealing with first cases of coronavirus) the paramedics and district nurse team. The hospital went in total lockdown the day after my operation and it was strange having a guard of honour of nurses as I went off scu (although I had been in because of major surgery)and being wheeled through empty corridors. I admit I spent a few tearful days when normally my family would have come and distracted me, then the fear of being returned to hospital due to a bad infection. All is good now, and I just need to build up my strength. My final dressing came off yesterday and at last I was able to have a relaxing bath. Yippee! Joy in simple things is what will get us through this. Take care everyone xx

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So so glad you are in the mend! XXX

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@Pisces56 I echo the thoughts of our other lovely forum members, it’s so lovely to hear from you and hear you are doing well. We missed you of course, but very pleased you took some time out for yourself, so very important! and hope you had a nice and relaxing bath :smiley:

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Thank you @Nichola75 @SuBloodcancerUK and my special buddy @Erica. I think my body is taking longer and longer to recover from each knock back, and as I have always been a glass half full girl I am getting quite impatient. I tried to do a few things at the beginning of the week, and have spent the last couple of days paying for it. Of course hubby has had to put up with my tantrums and frustrations, but has dealt with them in the usual calming way. My parents are not dealing with me being ill very well. I am eldest of eight. Mum is 90, dad is 86 on Sunday, and both are in their own home, and getting lots of help, but even so I have to bite my tongue when they ring. I am going into the garden now for some Vit D before it gets too sunny. My skin is so sensitive since I had chemo. Sending love and virtual hugs to you all

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Hi, @Pisces56, @SuBloodcancerUK and @Nichola75 I can’t tell you off @Pisces56 for ‘just trying to do a few things’ because I am rather prone to do the same thing. I see-saw from feeling a bit better, overdoing it and paying for it and it takes longer to build back up than spiral down. I never learn and I sort of know what I am doing. Yes, virtual hugs, I wonder if society will ever be able to hug again!!

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@Pisces56 I hope your parents are doing okay? and how lovely that you have a garden :sun_with_face: hope it wasn’t too hot for you?

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Hi all. I know we had some discussion in this topic a while ago, but Blood Cancer UK are looking to write a blog/article for people who are shielding, which lists some shielding tips for others shielding at this time.

If you’d like to share anything that is helping you with any aspect of shielding at the moment, please let us know on the thread below :point_down:

Whether it’s a way to virtually keep in touch with family or friends or something you’ve found helps with maintaining your well-being through this tough and uncertain time, we’d love to hear it. Your quotes will of course be kept anonymous in the article!

Thanks everyone :slight_smile:

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Thank you for introducing this topic. I have found journaling very helpful during this time of shielding. By this, I mean writing down how I am feeling whether it is a good day or a bad day, or something in between! Just to put my thoughts on to paper helps me to release the emotions of the day. Often this is in poetry form as this is what I enjoy but it doesn’t have to be a poem. It could be a drawing or some other creative exercise. I have recently heard about creating a Tree of Strength where you draw around your hand and wrist to form a tree shape and then add leaves to your tree. Each leaf can have a word on it that describes how you cope in difficult times, for example it might be an inner strength, a coping mechanism, a hobby or interest or the name of a family member or friend who supports you. You then have a visual aid to help you through the tough times and the actual activity of drawing the tree I found relaxing! Hope this is of help. Thank you. Willow

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Thanks, @Willow, A Tree of Strength is an interesting idea. I can encompass so much more visually and I will remember it more than in words. I am a very symmetrical person so drawing around my wrist, hand, fingers and thumb might make me more creative. Willow, are you drawn to trees?!!

Yes Erica. How did you guess?! Trees hold a lot of symbolism for me, especially willow trees which are my favourite. They are able to withstand storms better than other trees because they are flexible and don’t break. I like the image of being firmly rooted and drawing strength from the roots like the tree planted by the water. The bark of willow trees has healing properties. The drug aspirin is derived from the bark of the tree, so I am told. Lesson over! Thanks for asking. X

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Rationing the amount of news I consume though it is important to consume some. Looking for reasons to hope (e.g. the vaccine which is looking positive). Some people simply may have to move home temporarily especially if a family member simply has to work. That is what I did as I found shielding at home with a family of six others not shielding was just impossible for me… not feeling safe. Having a structure helps to the day. Doing some exercise tho I am finding that hard to motivate myself to do! Allowing a bit of comfort food so you enjoy it but not so much you get fat! I am not trying to lose weight at the moment but keeping an eye to make sure I am not loosing. Video calls even if you have never tried them before they really do help… A VIDEO SUPPORT GROUP would be awesome hint hint. Finding something productive to do that distracts you. Some kind of project. If you are nervous jus keep those kids off school especially if they are the only ones needing to break quarantine. Education can wait! besides which no fines. IF only I felt safe to get out… would be good to walk if I could but worry about others not social distancing and dont like bending the rules. We are just beginning to think in our house about what is the difference between rules and advice and wondering about exercising some common sense but I feel nervous about that. I found reading the news items on Blood Cancer UK and the Gemma videos (where has she gone we need more of her reassuring tones!) helped me to understand afresh WHY I am doing what I am doing. I remind myself often that it is just like chemo when you give up six months of your life to devote to getting well so you can hopefully live decades. I Have got an x box just recently so I can play some games. Mixing up the routine so it doesnt feel like each day is the same so I haven’t watched much TV for a few days so am looking forward to watching some later this evening. Think about small ways to improve your life e.g. I am about to buy a cooler for the bedroom I am in. Tiny comforts mean a lot more. I got an amazing blue tooth keyboard so O could sit in the garden typing WhatsApp messages more comfortably. I bought myself a box of my favourite chocolates from Amazon and…ooops I just thought of that now so I am going to buy another one right now! You get the idea find SOMETHING fun. We are also trying to grow an avocado treee from the pip of one we ate. It will take years to grow fruit and one day I will look back on this time thinking that was the 2020 plant. Life WIL go on it WILL be behind us and because I am shielding fully and so is everyone I live with I KNOW I Am safe… I recently had an exacerbation of asthma and developed a bacterial chest infection. I knew it wasn’t COVID as it cant be. I would have been a LOT more stressed if it was. As it was my GP has put me on antibiotics as we know it is sadly still possible to get infections from your throat etc without catching bacteria from someone else. Do games with people. Try to build some precious memories and talk late into the night about things that matter to you. Find ANYTHING to talk about that isn’t covid… and do some experimental cooking. We start planning the next meal during the one we are eating!

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How could I forget… CAKEs COOKIES and ICE CREAM! Screw the diet!

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Hi Alice, thanks for coming up with this post now. I am a person that thinks better after reflection and I like to work in hindsight.
My shielding tips for then or now:
Top tip for me is to keep to a routine that works for me, which includes doing my exercises as I also have osteoporosis. I also do a pilates DVD every morning. I try to keep the window open for fresh air.
I am also trying not to eat more as emotionally and weight wise that is not good for me, but for me it is important to have the odd treat.
I am now aware how heightened my emotions went when Covid-19 struck and that they haven’t really subsided, they have evolved. I know I do not deal with scary, stressful emotions well. At first I was scared of the pandemic and catching it, how on earth could I put my life on hold, how would my family change their life, how could I not see my family and my friends and getting obsessed watching the media news.
I went into lockdown in our flat and my fears were also not getting fresh air, exercise, food, getting bored and how would my husband and I get on - he likes his quiet routine in the flat, he is not a great conversationalist and I like human contact, conversation and debate.
I then diverted my fluctuating emotions into trying to get on line food shopping, getting on the vulnerable list, getting an emergency gas central heating appointment etc. I am very aware how unbelievably elated I was to get on the vulnerable on line delivery list, a delivery slot, a emergency heating engineer, phone/texts from my medical team and local voluntary services. I had a weird mixture of emotions when I was fortunate enough to receive the NHS letter/text. I felt yukky, vulnerable, but also it was a weird sort of ‘badge of honour’.
As the weeks have gone on I only read reliable Covid-19 news sources like the NHS or Blood Cancer UK. I am listening to more music, I am also reading a good book, slowly. I got a jig saw out, but the box started to gather dust so I put it away. I lurch from one job I did not know needed doing to another and I have fallen in to a habit of doing more housework.
I was aware of hitting a low and feeling tearful. Interestingly I have heard other say the same. It started when my husband went to drop off some papers to our son’s, he was only gone about 15 mins, but I felt really isolated and tearful in the flat for that time, then friends started saying on the phone that they were going to meet other people, social isolating.
Now I can feel my anger coming out in all directions, often directed at the TV and when I had the window open last evening someone had a wood burner going.
Perhaps I have had too much time with my head, never a good combination.
I have made the odd resolution for the future like I am determined not to say ‘yes’ when I really want to say ‘no’, to apologise immediately I am wrong etc.
I have embraced modern technology whilst I have the time and some patience otherwise I know I never will, however it has been very stressful.
I have kept in contact with friends a lot more and in different ways, I have even put pen to paper to a couple. I have realised who are the friends I want to keep in contact with and spend time with. It is the support and supporting friends that are getting me through shielding.
The Blood Cancer UK forum has been my biggest support, top tip.

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Yes, Willow trees are beautiful and elegant and everything you say. Erica means Heather, sturdy, often colourful and able to survive all sorts of weather and soil conditions.

Other than exercising and trying out new online classes - there are so many - the Internet is a great way to try out new things and learn new skills, I try to set myself goals for the day to help use the wealth of online content to aid mental stimulation. Distancing is tough and one day merges into another, then another week has passed so setting goals, like learning to make bread or downloading the podcast I didn’t get round to when I was rushing around, keeps me focused. A couple of goals a day make me feel like my day has a purpose and on the whole - until last week - kept me mentally strong.

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Thank you SO much for these so far everyone! Really good tips. Keep them coming! :slight_smile:

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@Willow this is such a lovely idea, thank you for sharing it for the blog. I hope you’re doing okay today.

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Hi Alice I will share something here that got a bit long (was originally written by me for another forum where I have a reputation for being a bit of a wind bag! Maybe some of this especially the bit about referring yourself to regular check in calls may be of help: Is self isolating getting harder for you as time goes by?

Almost 12 weeks ago in a mammoth computer operation [the UK government identified a big group at significant risk of harm from COVID19. They were labeled as the “ elderly and extremely clinical vulnerable “. Somehow the label is almost rather stigmatising especially for those of us who are not even close to being elderly! The corona-crunch has affected everyone but perhaps some patients who are in this group of extremely vulnerable have been among the most impacted.

It certainly marks us out as rather different from everyone else. That sense of apartness and loneliness only grows as the general lockdown for “normal” people is gradually relaxed. Our own lock down looks highly likely to be extended beyond the end of June but no official decision has been made. And even in other countries experts in blood cancer are urging patients to take extreme measures to ensure they don’t catch the disease. So I suspect that whilst the details may be different elsewhere some of the thoughts and feelings are the same.

Many of us are grateful for the mere fact our government has gone to so much trouble to try and keep us safe. There were some inevitable teething problems, but as far as I am aware no other country has gone so far in trying to do this.

To be totally self isolating and told to not even leave our homes for any reason other than essential medical appointments is a major ask. So if you reading this and know someone else in that position please don’t forget to stay in touch with them to check they are OK. I think many of us are having good days and bad days as time goes on. It definitely feels harder for some of us now other people are beginning to be released.

Are you a rule taker or an advice bender?

Some of us want to follow the advice we have been given as if they are hard and fast rules. Somehow having the decisions made for us about what is risky behaviour is helpful for some (including me). Others, particularly those who live rurally have been making their own risk assessment and going out in isolated spots for walks. Now the general public has had the limits of how long they are able to be out lifted that may surely have become more difficult for some of the vulnerable to do safely as the numbers of people out and about goes up.

Many of us living in cities and towns have always felt that bending the advice in that way could not ever be safe for them due to the crowding of open spaces. Both groups sometimes feel a bit concerned about their decisions either way. We are missing out on a lot of social contact, and shielding is not a rule but rather advice. Like everyone in the UK we are subject to certain laws, and also certain suggestions. It seems important to distinguish between the two and I do hope we will soon see some more clarity on certain points in our shielding guidance. I do believe, however, that if you are going to make your own risk assessment it is wise to first carefully [consider the available] evidence(https://bloodcancer.org.uk/news/) that blood cancer patients are at greater risk.

In the news there is so much focus right now on getting “normal” people back into work and other relaxing of the rules. We do not get mentioned often as a group. And so far the “extremely clinically vulnerable” have not been considered as a group that should get priority for testing of ourselves and family for COVID19 antigen or antibodies. This feels a bit of an oversight as knowing you or your family have or had the disease could be literally life-changing for us.

Although some of us did get official calls to check up on us early on, few have spoken in any of the forums I am in of having that in an ongoing way. Since there is so little said about how much longer our home isolation might be extended, it can sometimes feel as though we are being forgotten.

In fact the NHS, government and the patient charities are clearly taking great care and thought in working out what our next steps should be. It is however hard to see a safe way out of the current situation for us any time soon.

There are some crucial questions that do seem to be outstanding, but I am pretty sure I heard in one of the press conferences that we would be given priority for the vaccine, presumably with our households, assuming it works. The current clinical trials do however exclude anyone who has an immune compromise as far as I can gather this seems to be because they are not sure it will work rather than having any specific safety concerns.

There are so many huge decisions for government to make I’m personally not too concerned that they haven’t thought yet about whether to extend our shielding. Truth is they want us safe. And no other country in the world has been this proactive about blood cancer patients as far as I’m aware.

Do you feel lonely or anxious?

If you are anything like me you have good days and bad days. The worst are the days you feel forgotten. As people begin to go back to work or travel to beaches and parks and even shops there’s a real risk that a whole day or even a whole week for some of us might go by without us being able to talk to anyone.

Early on some people spoke about receiving official calls to check they were alright or for a friendly chat. I never did get one. It turns out you always could ask for this and they have actually been widening the group eligible since they have so many volunteers! I do think such calls from someone who’s job (volunteer or paid) is to do that may well be beneficial for all of us whether we realise it or not. If nothing else because it forced us to ask ourselves the question are we alright or not?

One thing I’ve noticed about myself is there are some days I withdraw myself more than others. And actually I sometimes feel that “society” by which I suppose I might mean the NHS have forgotten me. That thought is a little unfair however, since when I’ve reached out for support it has always been there for me. For example I had to get antibiotics and steroids for an asthma exacerbation and presumed bacterial chest infection over the weekend and we managed to navigate our way around avoiding me needing to be assessed in A and E. Having things at home like a peak flow reader (if you have asthma), a blood saturation monitor, a good thermometer, and a smart watch that measures your pulse all really helps the clinicians in their remote risk assessments.

I first saw the above new tweet from NHS England yesterday evening. It mentioned the ability to self-refer for help and support for all self isolating people. One listed item was a regular weekly friendly phone call check-in service. We all miss out on so much social interaction, even silly things like talking to a shop owner, that it might be nice to know such a call was coming in a few days.

To be honest I felt a bit embarrassed about it when I first saw this and my British reserve came in. I thought other people probably need this more than me. After all I do have some friends and family, but the answer to them when they call mostly tends to be “I’m doing “OK”.

Having reflected on this over night, I reminded myself that hundreds of thousands have volunteered to be part of this service. Quite a few have not had any tasks allocated to them yet. I know how much I like to feel like I am making some sort of difference to other people, so since it is more blessed to give than receive I thought why not “bless” someone with the opportunity to call me? Some of you probably talk to fewer people than I do and knowing one person had a job they’d committed to doing to ask you how you were might really help ease the sense of isolation.

So I decided to refer myself for these calls. I invite you to consider doing the same. I found just talking to the person who picked up the phone to sign me up was a really rather normal feeling and we even had a little bit of a laugh when they said I sounded quite young (I sure don’t feel it these days!)

Of course such calls do not replace specialised or professional help if you require that, and many of us may well find we need proper counselling as the weeks become months. If you are feeling stressed or concerned about issues relating to your situation, the Blood Cancer UK telephone support helpline is also currently open for extended hours. It has a great approach to supporting us at the current time via the phone, but also through their website news section. The organisation is regularly in touch with the government, NHS, supermarkets and even specific employers to make representations on our behalf, as are some of the other charities several of whom also have helplines.

If I can swallow my pride and call and ask for this help maybe so can you. If you find you dont like it you can always cancel, and the lady assured me it would be easier to stop these phone calls than it was to stop those helpful food packages many of us were given initially whether we wanted them or not!

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I’m not sure how helpful this will be to your blog, but in my blog (mostly about words and music and language) a while ago I wrote about the word “shielding”: it’s here.

b.

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Hi @Adrian and @BobK99, thank you for sharing your tips and experiences through other post and blogs, I’m sure this will be helpful to others to support them during this difficult and challenging times.

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