Friendship and relationships in Lockdown
As the gov. adds more and more advice to people about ‘doing more out there’ my SHIELDING advice has stayed the same. Fairly clear. But ….. I have been seeing some friends and had drive bys in the car with generously socially distanced meetings on the driveway. Then last week… a breakthrough! My sister had quarantined for the two weeks of her annual leave and tested negative for COVID-19 twice, and was able to spend two days in our own family circle, BUBBLE. She’s back to work and carefully masked and socially distancing now but we are feeling so much better. Being me, not putting stuff into words and needing lots of close support, has meant having PA’s in each day, risky but life saving, and usually 'being out there being seen' is how it works for me. This has been a particularly tough time and as I’ve said in my blog before “INCLUSION is when they miss you when you don’t turn up”. So have I, and people like me, slightly disappeared?
All these relationships are really important, oh and nearly forgot …… last thank you to Jade for walking my dog and of course to my Ma and Sister for reminding me to wash my hands!
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Two blogs in just over a week, maybe because I don’t get out a lot! Seriously though I have a couple of things to catch you up on. Medicine
This year we have not been able to have a pre-appointment to take bloods, and check my weight and blood pressure. The Doc focused a lot on MENTAL HEALTH and how I was coping with being SHIELDED during CORONAVIRUS TIMES. He asked how would people know how I was feeling? Was my mood ok? Was I sleeping well? It was really thorough and we talked about the future. My Doc said that I would have to stay SHIELDED for the time being …… but should begin to think about balancing RISK against my MENTAL HEALTH. Maybe a drive in the car or a walk at a very quiet time? At the end of the appointment we checked my Health Action Plan and decided that I really DID need a blood test and that I would go OUT! next week to the surgery during SHIELDED patients TIME. It would drag my Ma out of the door also and maybe begin to build some confidence. At the moment my 3 monthly Dental Appointments and seeing my Neurologist about my epilepsy are all on hold …. So good to know that the GP wanted to be thorough.
Music as medicine While I have been in Lockdown, Music has been Medicine, it can really change how we all feel, I certainly smile! On Saturday my very own Riff Raph Promotions Live Streamed a folk gig, this is what happened.....
Loads of my family and friends watched from their sofas, as did I, and we raised some money. So a big thank you to everyone who joined in and especially to Katherine Priddy, Bella Collins, Tony Phillips, and Mishra. If you would like to watch the gig back you can here -> Riff Raph Promotions Future Folk Gig Music really is Magic, I have made so many friends through it even though I’m stuck at home at the moment. The difficult bits My Ma’s been getting a bit down, my sister had to have a test for Covid-19 and my front gates are still shut, but…. We have been sitting on the front drive pretending it’s the beach watching the world go by and lighting the fire pit. Music, Medicine and the Magic of fire!
GOOD STUFF Things that are going Ok in Shielded Isolation are that my GP has been great, I’m trying out a video link annual health check. I’ll let you know how that goes. Gov.uk keep sending me ration boxes which given my special diet are not always suitable. I wonder how some elderly, shielded, disabled people can survive on these rations, however there is always a giant onion, mega size toilet roll and plenty of shampoo. REALITY STUFF Missing all of the “inclusion”, being out and about stuff that I love, like Pubs and Gigs and its difficult to find flour for Cakes. Can't really make plans about how the future looks. I am thinking about having to wear a mask and getting used to it, when I am finally let out. Then there’s all the cleaning. Ma is still obsessed with Anti-bacing and I’m having to learn to wash my hands which is a real sensory challenge for me.
I’m trying to watch and find out how people with learning disabilities are being treated during this pandemic. I’ve been getting a lot of info from Twitter and there are some shocking stories. Serious reality for me, DNAR forms. My GP rang me at the beginning of my shielding and said he had to fill these forms in. Me, my mum, my sister, and one of my PA's had already had a long chat about it. The GP agreed we would have a chat each time I'm ill with everyone who matters to me. The last of bit of reality is that I think that me, and people like me are becoming invisible....maybe forgotten. Finishing on a bright note, check out my live stream gig on Saturday. (www.facebook.com/events/246990149747568/) still no pubs, no gigs, some cake and covid-19
Going to be a bit to the point... although there is plenty of time to talk at length.
I had already started my own SELF-ISOLATION and my Ma was on an ‘antibac’ mission, when the nation was told it was going into LOCKDOWN. I then got a letter on… 27.03.20
…telling me that I am in the group that should be SHIELDED – for at least 12 weeks!
Music… lots of music. All of my favourite gigs cancelled, including my favourite, the Cambridge Folk Festival. But we had an online concert with Katherine Priddy and Facebook music sessions happen all the time.
Some of my PAs are still coming in. They are all very restricted in their own lives to help keep me and Ma safe. Big thank you… no words really. We are finding ways to have fun like…
Last week I was really ill. I know my GP well and he was fab on the phone but things got so serious that he said “HOSPITAL”. Ma could not come with, my sister insisted (on the phone) that she would - “NO ARGUMENTS” - to protect Ma, my PAs and their families. All packed and ready for the ambulance when a consultant from the hospital (also fab) phoned and gave lots of advice to try and make sure I get to STAY HOME. It was very frightening, thinking we would all be separated and although my hospital passport is up to date, along with lots of photos of my friends and family, the thought of hospital is scarier than ever at the moment. We soldiered on and after a couple of days all the meds started to work which means I have, indeed, managed to STAY HOME. No Pubs, No Gigs, Some Cake and the Corona Virus. Let’s not go over all of the obvious stuff, like SELF ISOLATION, WASHING YOUR HANDS and worrying about where to get my next lemon drizzle.
GOV.UK have told me to do 5 things because I fall into a high risk category.
I’m going to go over this list in my next few short blog posts and today it is the first item on the list… “STAY AWAY FROM ANYONE WHO HAS SYMPTOMS” Sounds easy! I have been properly self isolating, stayed at home, no pub, no visitors, no shops but I do have to have people coming into my home to support me. I’ve spent a lot of money on cleaning products and keeping the place clean, even the Amazon deliveries are getting put over the gate. At the moment my PAs and their families are well but some have other jobs which involve social contact, have underlining health conditions or have responsibilities to support vulnerable people in their own families. My challenge is to trust that my PAs are not taking too much risk and bringing the risk to me. It’s easy to say “don’t mix with people who show symptoms” but I am hearing that a lot of people don’t show symptoms and are actually already ill with corona virus. Ma says that the World Health Organisation says TEST, TEST, TEST, so that we know who is ill and who is better. I cannot see my sister at the moment because she works in a hospital where she may have been in contact with people who might have corona virus. She has not been tested and it’s too big a risk for me. So staying safe… I’ve bought my team each a pair of slippers to keep the outside muck outside. As Boris said today, “We will turn the tide” slipper by slipper.
So my life now falls into 2 halves, Summer and Winter. Before all of this Corona Virus stuff, me and my team talked about SELF ISOLATION after a fashion. In the Winter months staying at home more is essential for me. Trains and buses are NO GO zones and although I get invited, some of my favourite pubs and gigs are out of the question until the sunshine returns and viruses die. Corona Virus is adding an extra layer of anxiety to life, there is little real information. People with learning disabilities need more advice and clear stuff too. Having been a founder member of The Improving Health and Lives Advisory Group, we worked to raise awareness of how important FLU VACCINES are for people who have learning disabilities and their circles of care and support. So for me, every Winter is about…
1. Flu vaccinations 2. Staying in/Not travelling 3. My carers not coming to support if anyone in their family is unwell 4. ‘‘Saying No’’ to conferences, working groups I am no stranger to SOCIAL DISTANCING and ISOLATION. Thank goodness for my phone and iPad and HAND GEL! Hello everyone, 2020 has begun with some speed! January was the month of visitors. My lovely French cousins arrived and then an old friend flew in from Ireland. I was able to be the host, took them to my favourite pub, had a music session at home and shared fish and chips at my ideal seaside spot. Then with February came the Six Nations Rugby and long weekend afternoons spent in front of the pub TV. Me and my Welsh Rugby shirt are happy to see a championship with teams from across Europe. BREXIT is something that is still a subject of discussion with my family, PAs and visitors. We wonder and worry about what will happen this year. One of our friends has already been asked (told) not to speak French down her phone in a shop in Swindon! Being half French myself and often found smiling in the midst of family French-English, exchange and laughter, there is some fear and sadness. Then 2 weeks ago my first “PUB QUIZ AT HOME”. I am raising money to make the accessible area at Cambridge Folk Festival a more colourful, fun and interactive space. So my kitchen became a pub for the night and we had great fun. My multi-national team, with 3 people from Portugal, 1 half French and 2 English people came second. We already have a date for the next quiz and I’m just putting together my Facebook Events Page. Social Media is really important to me and although I work hard to be part of my local community, Tweeting, Blogging and Facebook gives me a wider set of connections and means having what Greg (my PA) calls “An Online Presence”. Last year I launched Riff Raph Promotions with a really successful Benefit Gig for Cambridge Strawberry Fair. So I decided to give it “An Online Presence” and set up a Facebook page. Please give my page a “like” to see what I’ve got planned for the future. An early announcement, I’ve started to organise a Benefit Gig on the 23rd of May with Katherine Priddy. Back to day-to-day stuff. Last month I did The Great British Bird Watch. After investing in a bird-feeder in front of my window. This involved sitting on the sofa for an hour with cake (as suggested in the RSPB pack) and looking out of the window for a whole 60 minutes, 1 Magpie and 1 Bluetit spotted and noted. Next year I am NOT planning on doing The Great Bristish Birdwatch again! Then yesterday I went and brought a plastic pond to set up a wildlife area in my garden. When not venturing out to the great outdoors of my garden, I sheltered inside from storm Ciara and the Corona Virus and we have all been reading 1984 and the daily i newspaper together. Which is fact and which is fiction?
Hope you’ve enjoyed my blog. Please share and let me know what you think. A year has zipped by since my last NEW YEAR'S PHOTOGRAPHIC LOOKBACK. Like last year... some highs and some lows and plenty of "PUBS, GIGS AND CAKES" oh and a party. Towards the end of the year I got involved with talking with Dimensions about people with lots of needs (labelled PMLD) and them being seen as leaders. Then some other talks with NHS England about how hospitals are still difficult places to be for people with learning disabilities and complex needs. But mostly my chats take place in the PUB where I've built a bigger group of friends who sit and talk and ask questions. That is where I was to be found on New Year's Eve. So, INCLUSION continues to be my favourite idea for 2020 and am happy to see this as the theme for LD England's Annual Conference. It was truly difficult choosing photos to sum up my year... No New Year's Resolutions just... Staying busyStaying Healthystaying out there JanuaryFebruaryMarchAprilMayjunejulyAugustseptemberoctoberNovemberdecemberAnd so it begins... are we all in it together?
On my regular journey to the Pub I'm beginning to see Christmas Trees and also Election Boards. Before Christmas I have a few gigs to attend but first and foremost is my General Election blog. I've been voting since I was 18 and this is how it works. My P.As, family and friends help me to think about the main issues for me and other people in my situation. We find Easy Read Manifestos, invite canvassers in off the the street and go to the pub to talk politics. Oh, and the odd rally/demo. So this week we supported the University Lecturer's strike by attending their rally in Cambridge City. Billy Bragg gave us some encouraging words and songs. He talked about music not being the answer but being an important way to keep up hope and energy and get messages across, a man after my own heart! We met up afterwards for a chat. This is my list of some of the things I want to hear about in this election... 1. The NHSI'm a bit of a "frequent flyer" as I have a lot of complex health needs and being able to get excellent, all round healthcare is not just a luxury for me. Other people with Learning Disabilities have to put up with huge health inequalities at the moment, so I worry about what the NHS might look like in the future, especially if it's sold off to America. ( I've been to 2 Anti-Trump Demos by the way.) The NHS is important to me as a family member. My sister is a junior doctor and my mum is "an older lady". She tells me stories of being born in Wales when the NHS was very new and her school friends died of measles. 2. Social Care & BrexitThis is obvious... me and my friends will always rely on lots of people with lots of skills who can support me to live my life to the full. They need to be paid well and need access to good training. This depends very much on my Benefits and my Human Rights. Brexit is a real worry to me as I have have already lost 2 of my Polish support workers, who left because they were worried about their futures here. I will always rely on great people to support me but Brexit could limit my choices. 3. All The Other Issues
It had been pouring for days but when my birthday dawned there was bright sunshine and fallen leaves. Started my day with a pyjama breakfast party watching the South Africa verses Wales Rugby World Cup semi finals. Mum sang the Welsh National Anthem (in Welsh, slightly off key) and my sister and her boyfriend cooked bacon and eggs. (Not for mum... she is into her 5th decade of being a veggie and did I say, she is Welsh?) Will move on quickly as Wales lost. In the afternoon my kitchen gradually filled up with cakes, friends (some from the pub) and two musicians, The Lightwaves. All of my favourite things in one balloon festooned place. It was a really lovely party. Thank you to everyone who came to chat, reminisce and laugh.
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AuthorHello, I'm Christian, welcome to my blog. Archives
October 2021
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