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Navigating through lockdown

serenkserenk Member Posts: 18 Courageous

I’ve been shielding with my boyfriend for around 10 weeks now. I have a condition called EGPA, which is a type of vasculitis, and my boyfriend has Ulcerative Colitis. These are both autoimmune conditions which make us vulnerable to illness. As a result, we have had to live in the strictest conditions to avoid contracting the virus.

What has lockdown meant for us?

We haven’t been able to go outside, not even for food shopping or to see anyone outside of our household. As a result, we’ve had to rely on supermarket deliveries, the kindness of friends and even strangers to bring us essential supplies. Whenever we bring something into the house, we must fully disinfect it and wash our hands regularly.

It has been hard, but we are both incredibly privileged and recognise this daily. We are both in full-time employment which enables us to pay our rent and bills, and we're lucky to live in a flat with a garden. Fortunately, no one close to us has died from the virus, which is an unbelievable relief that thousands of people over the country do not share. 

Lockdown has also meant ongoing confusion and uncertainty.

Daily briefings in the early stages focused on the healthy and the elderly, but not the 14 million disabled people in the UK. As a disabled person, it’s not unusual to feel disregarded or ignored. You just have to look at the inaccessible PIP assessment or the general lack of accessible infrastructure to know this. However, this lack of acknowledgement was particularly scary when the pandemic hit.

Identifying who is vulnerable

Vulnerable people were told by the government that they would get a letter from the NHS, but there was no actual definition. It was also implied in early briefings that Public Health had an automatic button that would let the UK’s vulnerable population know what to do all at the same time.

Letters have been received in drips and drabs. Some have received the official letter from Public Health, and others have had a letter from their GP.

Neither my boyfriend or I received one by the deadline, and the instructions in this case were to contact our GP. Our GP told us they knew nothing about it. I then rang the hospital department managing my care who said I was the highest risk possible.

Some departments over the country, including mine, sent out a generic letter to patients which asked us to measure our level of vulnerability using a table of categories. If we fit into certain categories, we were to shield for 12 weeks. The problem was that these categories were generally vague and unclear which made it impossible for people with comorbidities to work out how to protect themselves.

Black and white photo of someone wearing a mask.

It’s been really difficult

I’ve felt frightened, frustrated, grateful, lucky, and upset all at the same time.

I’ve been terrified of my boyfriend contracting the virus. But I’ve had more faith he would get through it than if I were to catch it.

Firstly, I have lung damage and live with asthma which makes a severe respiratory threat incredibly real. Secondly, I have a compromised immune system which can’t fight infection like a healthy person can. Also, I have read stories of people with historic lung problems being refused ventilators. It was not hard to imagine myself being in that position.

The wider impact

There were numerous stories of healthcare professionals having to choose who would qualify for a ventilator and who would not. It was heart-breaking to read. To imagine the pain that patients, families and doctors went through due to a complete lack of resources is inconceivable.

I have felt rage and frustration. It infuriates me when they say we have avoided a catastrophe, as if the UK does not have the second worst fatality rate in the world at the time of writing.

I feel devastated that so many people have lost their jobs and their lives.

If I could send one message to people now, it would be to please stay home. If you can go to the shops, go for walks or exercise outdoors, please do so carefully. Every time you join a group of people or break lockdown rules you are forcing vulnerable people to shield for longer. Not everyone has access to a garden, a job, an income or help.

How has lockdown been for you? Have you been able to access the support you need? What do you look forward to? Let us know in the comments below!


Replies

  • NotNot Member Posts: 2 Listener
    It has been hard. Hard to access care, hard to understand the technology for virutal visits, etc.
  • christian96christian96 Posts: 101 Member
    Definitely been challenging. No trips out. Lack of decent health care. 
  • serenkserenk Member Posts: 18 Courageous
    Not said:
    It has been hard. Hard to access care, hard to understand the technology for virutal visits, etc.
    Very true! I had a letter for a rheumatology appointment, and I emailed to say I wasn’t comfortable coming to the hospital. They told me it was over the phone, but my letter literally said to go to the hospital! So confusing. 
  • serenkserenk Member Posts: 18 Courageous
    Definitely been challenging. No trips out. Lack of decent health care. 
    100%. My legs have been hurting from not being able to walk around properly. 
  • christian96christian96 Posts: 101 Member
    This is a longer response. Sorry about my previous reply it was very short. Yesterday morning I tried to call the local orthotics department. I was ultimately unsuccessful in doing so so I then decided to send the head of department a email instead with a photo later that afternoon and also submitted another referral online too. I’m hoping that they can call me back first thing tomorrow morning to confirm things. On another site, one afternoon several weeks earlier I read all about how people had all kinds of operations and appointments cancelled etc. That is scary isn't it? Tests that were scheduled just got cancelled suddenly. 

    My husband has had a few non emergency appointments postponed due to the lockdown as well. His annual eye checkup was postponed. Many other people have had either a virtual or phone appointment in lieu of a proper face to face consultation at a hospital these days. One of my amazing doctors even called me in early April to apologise but his department had decided to cancel all booked appointments until further notice. My primary disability is open defect spina bifida, cannot remember my exact lesion level but it is mid lumbar I suspect. I also was born with clubbed feet as a result. Nothing too serious but I do have some care needs and can barely walk. A routine urodynamics test was cancelled, this was originally booked for last month but has been pushed back until early July now.
    I also had a cardiology appointment. 
  • serenkserenk Member Posts: 18 Courageous
     christian96 said:
    This is a longer response. Sorry about my previous reply it was very short. Yesterday morning I tried to call the local orthotics department. I was ultimately unsuccessful in doing so so I then decided to send the head of department a email instead with a photo later that afternoon and also submitted another referral online too. I’m hoping that they can call me back first thing tomorrow morning to confirm things. On another site, one afternoon several weeks earlier I read all about how people had all kinds of operations and appointments cancelled etc. That is scary isn't it? Tests that were scheduled just got cancelled suddenly. 

    My husband has had a few non emergency appointments postponed due to the lockdown as well. His annual eye checkup was postponed. Many other people have had either a virtual or phone appointment in lieu of a proper face to face consultation at a hospital these days. One of my amazing doctors even called me in early April to apologise but his department had decided to cancel all booked appointments until further notice. My primary disability is open defect spina bifida, cannot remember my exact lesion level but it is mid lumbar I suspect. I also was born with clubbed feet as a result. Nothing too serious but I do have some care needs and can barely walk. A routine urodynamics test was cancelled, this was originally booked for last month but has been pushed back until early July now.
    I also had a cardiology appointment. 
    Hi @christian96,

    No need to apologise! It sounds like you have a lot on your plate, I’m sorry to hear it.

    Yes, I’ve heard lots of people have appointments, surgeries and procedures suddenly cancelled. It’s heartbreaking to think how big of an impact this has had on people who waited so long for those appointments in the first place.

    I think the thing that scares me most is wondering whether my life would be considered valuable enough to save if it came to it. It’s a horrific trauma for everyone involved - the patient, the family, the medical staff, the friends. 

    I really hope you get to have some contact with the department soon to reschedule your appointment! 
  • AwesomelorenzoAwesomelorenzo Member Posts: 108 Connected
    I just wanted to go out. A few shops have a one person from a household rule in, which is fine, but I like having my parents around incase I do something wrong. I might listen wrong and do something wrong. That's what's been really annoying.
  • serenkserenk Member Posts: 18 Courageous
    I just wanted to go out. A few shops have a one person from a household rule in, which is fine, but I like having my parents around incase I do something wrong. I might listen wrong and do something wrong. That's what's been really annoying.
    Thank you so much for your comment. That sounds really challenging. Is there anything in particular you worry about doing wrong? 
  • christian96christian96 Posts: 101 Member
    Thanks. I luckily heard back from the orthotics team today. Appointment has been postponed but they will let me know more in due time. My yearly bladder health test is also booked for next Wednesday morning. I even chased up on my missed cardiology appointment. It has been rescheduled for August now. I finally made a much needed appointment to see my wonderful hairdresser again. And yes I fully concur with you. It was very painful to read, I teared up. But my fabulous Christian therapist has chatted with me via email and by phone each week to see if I am fine. There will definitely be a backlog of missed or cancelled appointments all over the country when life is back to normal. I wonder what will happen. Does not look good, does it? 
  • newbornnewborn Member Posts: 683 Pioneering
    Lack of exercise is a worry.  It is a little hurtful to realise nobody knows disabled people exist!  Jolly advice is useless, when it  is to do this or that, invariably  requiring a set of perfectly standard knees, as minimum kit.
  • serenkserenk Member Posts: 18 Courageous
    Thanks. I luckily heard back from the orthotics team today. Appointment has been postponed but they will let me know more in due time. My yearly bladder health test is also booked for next Wednesday morning. I even chased up on my missed cardiology appointment. It has been rescheduled for August now. I finally made a much needed appointment to see my wonderful hairdresser again. And yes I fully concur with you. It was very painful to read, I teared up. But my fabulous Christian therapist has chatted with me via email and by phone each week to see if I am fine. There will definitely be a backlog of missed or cancelled appointments all over the country when life is back to normal. I wonder what will happen. Does not look good, does it? 
    Thanks. I luckily heard back from the orthotics team today. Appointment has been postponed but they will let me know more in due time. My yearly bladder health test is also booked for next Wednesday morning. I even chased up on my missed cardiology appointment. It has been rescheduled for August now. I finally made a much needed appointment to see my wonderful hairdresser again. And yes I fully concur with you. It was very painful to read, I teared up. But my fabulous Christian therapist has chatted with me via email and by phone each week to see if I am fine. There will definitely be a backlog of missed or cancelled appointments all over the country when life is back to normal. I wonder what will happen. Does not look good, does it? 
    It’s certainly going to be a challenging time for many. It’s great to hear you’ve had the support you need! Chasing up appointments and things can be exhausting, so kudos to you. 
  • serenkserenk Member Posts: 18 Courageous
    newborn said:
    Lack of exercise is a worry.  It is a little hurtful to realise nobody knows disabled people exist!  Jolly advice is useless, when it  is to do this or that, invariably  requiring a set of perfectly standard knees, as minimum kit.
    Unsolicited advice is the worst! It’s presumptuous and dismissive. I completely agree with your lack of exercise concern - I went for a tiny walk the last week (fully masked up) for the first time since March. My legs have only just stopped hurting. Even though I’ve been keeping up with yoga as much as I can, the deconditioning has been real!
  • christian96christian96 Posts: 101 Member
    Since my last post, plans had to be changed. My orthotics appointment is next week but no date yet however. I need to chase that up. And my delayed cardiology appointment is mid July now. With regards to my rescheduled hairdressing appointment I have a date at long last finally. My husband's missed neurosurgery appointment is on Wednesday afternoon at two pm. He has a vp shunt that may need to be replaced again. 
  • serenkserenk Member Posts: 18 Courageous
    Since my last post, plans had to be changed. My orthotics appointment is next week but no date yet however. I need to chase that up. And my delayed cardiology appointment is mid July now. With regards to my rescheduled hairdressing appointment I have a date at long last finally. My husband's missed neurosurgery appointment is on Wednesday afternoon at two pm. He has a vp shunt that may need to be replaced again. 
    I'm really glad everything is slotting into place for you! It's nice to have dates in the diary. I really hope your husband is okay - how are you feeling about that? 
  • christian96christian96 Posts: 101 Member
    Nervous but it has to be done @serenk! Keep him in your prayers. His operation has now been scheduled as he is a urgent case. But we will not know for sure until his test results come back. He went and had his yearly brain scan this afternoon. 
  • serenkserenk Member Posts: 18 Courageous
    @christian96 you will both be in my thoughts. If you ever need a chat, I'm always here to listen :) Sending you well wishes
  • MarkGibbons1MarkGibbons1 Member Posts: 13 Connected
    Lock down has been hard on me especially on my mental health issues I've had a few psychotic episodes due to my paranoid schizophrenia. But have made the decision to not go out until the brand new year next year has I don't trust this government or there advisers. I am going to do this because I've now got used to shielding and don't think the time is right this year.
  • Wini1960Wini1960 Member Posts: 125 Pioneering
    MarkGibbons1 Hi if you dont go out its possible to develop agoraphobia. I have had this condition off and on for years. I would suggest trying to get out for a walk otherwise you will become deficient in Vitamin D and just add more misery to your mental health and I'm sure you don't want that. All the best going forward.
  • dkb123dkb123 Member Posts: 121 Pioneering
    It really has been no different for me, I shop online and I do not  go out, still don't, I am the sort of person that is content with my own company, and I have a garden where I grow my own veg, so quite self-sufficient really, it's all about routine, when you have one, the days just fly by  
  • MarkGibbons1MarkGibbons1 Member Posts: 13 Connected
    Hi Wini1960,
    I'm terrified of leaving the house had to go for a blood test 3 weeks ago had a mask and gloves on. My anxiety was bad couldn't breathe with the mask on. So I will go out in the garden if it's nice but nowhere else until I feel safe. I understand your worry for me but if I know what I'm doing I'm fine but thank you
  • Wini1960Wini1960 Member Posts: 125 Pioneering
    MarkGibbons1 Yes getting out into the garden is a good idea. If you have a lounger you can relax with a good book.
  • MarkGibbons1MarkGibbons1 Member Posts: 13 Connected
    Yes that's what I do love reading books wini1960 
  • Wini1960Wini1960 Member Posts: 125 Pioneering
    MarkGibbons1 Keep that going. All the very best going forward.
  • AwesomelorenzoAwesomelorenzo Member Posts: 108 Connected
    The government is ****. The virus is ****. The handlement is ****.
    Everything is ****!
  • RonniRonni Member Posts: 162 Pioneering
    Not everything. Just quite a bit at moment. 

    Cant do out about the **** government. The virus and million and one other **** things.

    But u dont stop searching or fighting  amongst that **** theres some good. 

    We just gotta stop looking in the wrong places.

    Strangely though. It's those places and people meant to support us that are full **** right now. 

    But theres some good out there too.
    Stop looking in the places your meant to look to. And look elsewhere. Worked for me. 

    Stop focusing on the ****. It will just bring you down.

    Hope you find some none **** out there.
  • AwesomelorenzoAwesomelorenzo Member Posts: 108 Connected
    I stopped focussing on that ages ago. My driving actually went right for once!
  • RonniRonni Member Posts: 162 Pioneering
    You can drive that's good. Wish I could. I would get a comers drive of take photos. Simple things
     Preferably away from the choas.

    Hope your driving will get you out more. Grab a camera. Or phone camera. Find a silent place sunset or sunrise. 


     
  • Wini1960Wini1960 Member Posts: 125 Pioneering
    Wini1960 My view on this pandemic is twofold either it's an opposition or an opportunity. I love to knit but I've not done it for a while do to my mental health. I would knit baby accessories for the local hospital. It's about making the time we are in lockdown a productive one. When you do nothing it's far more damaging in the long run. Lack of self confidence, self esteem, self worth. However, we see ourselves, is what we are attracting. If you believe in the law of attraction.
  • dkb123dkb123 Member Posts: 121 Pioneering
    I agree  if it wasn't for the lockdown no one would have and the time a space to think about how to help other, they would have been just to busy with life, I hope that the lessons learned regarding how life is so temporary and goes by so fast will help people to value what they have  and to be more compassionate to each other 
  • Wini1960Wini1960 Member Posts: 125 Pioneering
    dkb123 Totally agree life is what you make it. Of course we have our dark moments but when we are in a good space, milk it for all it's worth. Its amazing what comes out of dark places for me so much creativity. Have a great week😁
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