I never thought I would post this but I am worried I am getting too settled into isolation after a month. Just over a month ago my life was busy with a fairly packed social diary and feeling I had to do things. Then suddenly the next day I was a vulnerable person, in isolation in our flat for 12 weeks, with an empty diary, apart from medical appointments. I suddenly felt fearful and anxious and thought perhaps I wasn’t invincible. I then had to grips with using Skype, Zoom and Microsoft Teams. I then had the anger, stress and frustration of hours trying to get an online shopping slot, this is ongoing, but I am more chilled out about it now. I have sorted out my medical appointments with telephone consultations, prescriptions or postponing appointments. I am keeping in touch with a lot more friends in all sorts of ways . I am in a good routine. Thanks to on line shopping I have some Pilates DVD’s and I do one every day and other exercises. Initially I seemed to have all these emotions flying around in my head, but they have really slowed down and my head seems to be getting calmer. I now think that I am getting too comfortable in isolation and I wonder what it will be like, in the future, stepping out into society again. I wonder how others are?
Erica, I certainly have a routine now and wonder how I fitted in my previous life. On Mondays I have a WhatsApp video call with ex colleagues, on Tuesday I have a Spanish lesson via Skype and later a Zumba class via Zoom, on Wednesday I have a meeting with friends, Thursday another Zumba class and then on Friday a teaching session with my grandson.
Apart from these events I clean half the house on Monday, the rest on Tuesday. I do the ironing on Wednesday. Every day I spend over an hour improving my Spanish via Duolingo. I try to get outside each day, without going beyond my garden so am constantly weeding, deadheading and trimming shrubs. Garden is looking very tidy. I also cook dinner every day and we have not had the same meal twice in five weeks.
So I am not bored but confess I would love to go shopping or for a walk, but I am lucky, I have a garden, lots of friends, no financial worries so am so much better off than many.
I feel overwhelmingly lucky to live in a beautiful rural area and to have a large overgrown garden. I get fully engrossed in hacking and chopping swathes of overgrown shrubbery, brambles etc. My progress is very easy to see, instantly rewarding, and my neighbours are reaping the benefits, either from the light, or in the case of the children, bundles of harvested bamboo canes to “make things” out of. I have only recently been revaccinated after a stem cell transplant last year, no gardening allowed prior to lockdown. What had at times felt like a chore (or had made me feel faint during treatment) now feels exhilarating. This period of shielding initially felt like the post transplant phase, with the bonus of feeling well and having energy. I’ve sorted the house, which had gradually got more cluttered. I had spent so much time with my poor mother who has end stage lewy body dementia and parkinsonism that, on top of the effects of myeloma, I could get little done. Now I cannot go to see her, and although that is awful for her, and heartwrenching for me, it has freed me from a caring role for the first time in six years. I’m not sure how this level of isolation will feel after many months, but I can’t see our predicament being over in the foreseeable future. In the meantime I appreciate having daily what’s app group contact with others in my local myeloma support group, and reinvigorated contact with friends and extended family.
I’m not sure that I’m feeling comfortable, but I am feeling glad to be alive.
@Maple I think your comment about being grateful to be alive echoes with many of us. Unfortunately I am not able to do very much at the moment, but hacking at an overgrown garden sounds very therapeutic. I can imagine the den making that is going on with your bundles of bamboo.
@Joan I think I could do with you to sort my house out. As I am not allowed to lift anything heavier than a kettle for a while I can see all the jobs piling up. I do manage to keep the bathroom and sink area in the kitchen clean, but this week is the first I have managed to do a bit of light reading since a major op, followed by getting a nasty wound infection which hopefully has been seen off!
@Erica I think I could live in my little bubble quite happily, although I almost said to G one day, I think I will come and do the shopping with you today! The only thing that really upsets me is not seeing my children and grandchildren. Our youngest, who is living alone and working from home, is the one I worry about the most. I know he misses seeing the rest of the family as he usually visits every 2/3 months, but hasn’t been home since Christmas.
All our neighbours are in their 60s and 70s and we have had a few conversations across the gardens…no secrets here. Lady two doors down has asthma and was hospitalised with Coronavirus, but is home, next door neighbour is in hospital after a fall…7 vehicles sent out on Monday night!!! After the ambulance coming out to me 4 weeks ago there is certainly never a dull moment in our little cul-de-sac
Take care everyone
Hi @joan you wore me out with your routine and I only have our flat to clean. When I had my hysterectomy a few years back @Pisces56 and was not supposed to lift anything my husband said just tell me what needs doing and I will do it, great, I thought. Every time I asked him to do anything he would say that it did not need doing so I had to watch the jobs pile up for a while which was not good for me psychologically. I am finding exercise DVD’s better for me than on line classes as I can pause or rewind to go over bits again and they are also on a large TV screen. I am so impressed with not having the same meal for 5 weeks, my repertoire is not so impressive, I am devoted to my slow cooker. Yes, we are the lucky ones.
Hi @Maple, I now live in a flat without a garden, but your exhilaration really oozed out of your post at your gardening and housework achievements and even better that you can see the results. It must be heart wrenching not being able to see your mother after being her carer for 6 years, a very time consuming role. Yes we will all support each other through these uncertain times.
@Erica thank you so much for starting this topic 
It has been so interesting to hear people’s thoughts. I can imagine too that this is likely to be something which may stay in peoples’ minds for a long time to come when the restrictions are lifted. This would be so understandable. Do keep posting everyone and share your thoughts
Feel rather like you do, Erica. Up here in Scotland’s cold shoulder, we seem to have settled into a routine which, apart from not having to do the shopping and not being able to cycle to our nearby coffee shops, is not THAT different from usual. Daughter, neighbours, the veg box people and the village shop give access to all the groceries we need and 1/2 acre garden keeps us busy. We could walk 5 miles in any direction and probably not see a soul. So have a slight nagging feeling of guilt, slightly assuaged by donating to appropriate charities and, now, making washing bags for frontline staff to use for outer clothing. Daughter got involved in this first, and asked if we had any old pillowcases she could re-purpose. Then when we supplied them, she complained that they were less worn than their everyday ones! So now my wife is making them from scratch; who knows, we might even clear out 50+ years of accumulating sewing material that “might come in”.
I had to laugh at your daughter saying that your donated pillow cases were less worn than their everyday ones. Your families NHS washing bags sound wonderful and I bet every one of them is really so appreciated.
Not sure where the bags idea came from, but the intention is that they are supplied to frontline carers in any context so that they can just chuck their outer garments into the bag at the end of a shift and put the bag straight into high temperature wash without needing to touch the clothes again, or risk shaking any droplets into the air. A group of Syrian refugees who are settled in Inverurie have acquired old sewing machines and at the last count had produced just under 500 bags.
Seems like an incredibly simple but effective idea.
@DickM you have spare pillowcases? Our bedding is whipped off, washed, dried, and put back on. Okay, we do have a 2nd set to ring the changes. Certainly using up material around the house is putting it to good use. My sister, a teacher, is working part time with children of key workers. During her spare time she made some scrubs and bags for her daughter, who works with young people with mental health issues. They did not have any scrubs, and 2 patients had coronavirus (now recovered)
The place you live sounds idyllic. We were due to celebrate my husband’s 70th on a rail tour of Scotland next month, but hope to do it next year instead.
Pisces56, you clearly don’t visit the right charity shops/car boot
sales to stock up on bed linen and the like! Of course, having lived
through the end of WW2 and subsequent rationing, we are inveterate
hoarders, and now is a good time for a cull! When you do get your rail tour, make sure you stop in Inverness for
a while. And either take the train Inverness to Kyle or get the
(probably by then seriously overcrowded) one over the “Harry Potter”
viaduct up the West Coast. No matter where you go, it’s a beautiful
country. Says someone born in England but who has gone seriously
native since moving up here 13 years ago.
Your daughter is probably like me, only buying when things need replacing. I used to hoard, until I had HL, then spent my time clearing out so that my children didn’t have to. When it became obvious that I would never return to work all my smart clothes went to charity shops.
As I can no longer fly we go on Great Rail Journeys, which are not cheap, but a tour manager is there to make sure all goes smoothly. We have done a few trips in Europe, but didn’t think it would be worth getting another passport this year. We start in Edinburgh, and spend time in Ballacullish and Inverness. We were booked on several rail and boat trips. Something to look forward to after the madness is over
Hi Erica, I hope you are keeping safe and well?
Like you, I’m finding I’m getting comfortable in isolation, there are no pressures to do anything outside home. The only downside for me is that Peter’s home has been on lockdown since twelfth March and so my main worry is that by the time this has all calmed down, he won’t recognise me. As you know, he has a degenerative brain condition which in turn presents with some dementia type symptoms; therefore, his memory sometimes gets affected. On his lucid days I fear he will think I just walked out one day and didn’t go back! This leads to a lot of anxiety on my part, as I’m sure you can imagine.
I think I might be becoming ‘institutionalised’ and am actually quite fearful of going out (whenever that is), as I do think there will be a second wave which will hit just as hard once people relax their social distancing.
I, like most people am finding lots to do around the house, but some days, I don’t want to do anything apart from do puzzles and watch tv - and that is what I do. I can’t concentrate on any books at the moment which is strange as reading is/was one of my main hobbies. My son (who lives with me) and I do Zoom quizzes with my daughter and son in law who live in London. I pray we will all come out of this situation but only when it’s safe to do so.
I have a holiday to France booked for 7 July (a cruise down the Seine) but I doubt I will go now, even if restrictions are lifted. I can’t imagine coming out of isolation one week and the next, going on a cruise in France.
So, that’s me - comfortable in my bubble. Fearful of going out when I can.
Stay safe. Xxx
Oh, how lovely to hear from you, although the safest thing is probably for Peter’s home to be in lockdown, because of the nature of his illness it must be a extra great worry for you. Perhaps sometimes we have to listen to our bodies and do puzzles and watch tv, I firmly believe that I keep going and keep going, emotionally and physically, and then when I have more time for myself my body says now I need some time for myself to replenish my batteries.
What would we do without Zoom (the word for 2020)? At least this time has made me get to grips with it and made me keep up with technology. This time has also, in a funny way, brought me nearer to family and friends. How is it for you living with your son in such close proximity?
It has made me keep in contact more with people close to me and also some on my Christmas card list. I have even written a couple of letters to people not on the internet. I also dread what our phone bill will be.
Yes, perhaps the 7 July is a bit optimistic, but who knows. I also think we will have to watch we do not get caught up in a second wave of the virus, if there is one.
Stay safe, Buddy.xxxx
Hi Erica
Luckily my son and I get on very well- so all good on that front. He’s a good cook as well, so that is helping.
I’m going to try and join in the coffee morning this week, if there is one. My computer bit the dust last week but luckily I now have a new laptop, so I’m good.
Take care
Vivien xxx
@CLL6 Hi Vivien, I hope you and your son are doing okay? And it’s so good to hear you are able to keep in touch with others via zoom! As you say, it’s very understandable for it to feel daunting thinking about life after lockdown and the prospective of going out. But am really glad you are talking things through on here
.
Interesting what you say @Erica ‘suddenly the next day I was a vulnerable person’. That’s how it was for me too. I hadn’t told anyone about my CLL since a few close friends when I was diagnosed over 10 years ago. We’ve moved since then, and I’ve been living a normal (though guarded) life. It hadn’t been relevant to tell anyone about my CLL: they didn’t need to know. Suddenly I could see I needed to ‘come out’, and did. And then I got formally classified as ‘extremely vulnerable’ and locked down for 12 weeks.
Oh what a change! Yes to anger, stress and frustration, and hours trying to get an online shopping spot! And also to lots of fear. But now we’ve settled into a very loosely structured routine, life goes on, and we count our blessings every day.
I do step out occasionally. We live in the country and so it’s quite easy to go for a short walk whilst keeping a safe distance. I don’t do this every day (sunny weekend days are too busy) but it really helps me mentally to do so. Otherwise the outside world becomes a place of fear. When I do go out I recognise it for the place I know and love. It’s not that in my imagination.
But yes I do, in general, feel a lot calmer now, and I feel quite resistant to the Zoom structures that are emerging. Not because of the technology, but just because of the intrusion of the outside world into my bubble. I can’t imagine what life after this will be like, and I’m not sure what I want it to be either.
Thanks Su, six weeks into lockdown and I’ve just received my letter from my GP surgery. I already have a letter from my consultant, so not worried about that. I’m also getting a weekly delivery from Sainsbury’s. Taken a while to get there but I think it’s a matter of keep going on the website until slots become available. I just happened to log on on Tuesday lunchtime and lots had been released.
Hope all my Blood Cancer Uk buddies are staying safe and hopefully see a few tomorrow morning on the coffee and catch up session.
Take care
Vivien xxx
Hi, @Somerset, a great big welcome to our community form, I was very struck by your words, which could have nearly been my own, but I live in a much more densely populated town, so I have stayed within our flat. The words that have stuck with me are ’ I can’t imagine what life after this will be like, and I’m not sure what I want it to be either.’, wow, we have choices, a very good point. I am not going to say ‘yes’ to things I really do not want to do for a starters. I am also going to try to keep calmer and taking things at a slower pace and also more grateful for what I have. Thank you and take care I look forward to hearing more from you, we will get through these times together.