Yesterday I spent hours listening to a playlist from 1986 (can you guess any?)… my BIRTH YEAR. So yes, I am 36 and that seems to be one of those birthdays when you feel like looking backwards and maybe forwards. A kind of balancing spot in time. Looking back… I have not blogged for quite some time. Almost exactly a year. Have you missed me?... Ha! That blog from October 2021 talks about the end of BORIS’ ROADMAP and how I have managed to start sitting outside the pub etc… But it also noted many worries about not being able to have a COVID booster or an Annual Health Check and how to cope with another long dark winter. Has much changed in a year? Well yes and no. Back in Spring/early Summer (when Boris was still PM!) everyone was told to go out and “live their lives”. This felt pretty scary and unsafe to me as COVID was still raging, there were no masks to be seen, no tests and I could not get a SPRING COVID BOOSTER. Ma asked and asked but got turned away. It was stopping me from living my life whilst everyone else seemed to be going out there. And OMICRON was being more than friendly. The tale of what did not happen is long and shocking but ended with a trip to a big vax centre in Cambridge armed with a letter from my Neurology Consultant “give this man a booster”. It was a struggle, an argument, included startling advocacy from my PAs and eventually I got a booster on May the 21st… It did mean spending 40 minutes in a big shopping centre, my first time since SHEILDING. Guess what? You guess, I caught COVID. My Ma, Sister and PAs gradually all caught it from me and it was not at all like a common cold! 5 days later I was in Intensive Care in my local hospital and my family could not be with me. Not going to detail the nightmare… But I did not come home until the end of July!! We are still all shaken and Ma is quite angry. So look forwards not backwards from my mid-life vantage point >>> FUTURE. Ma and my PAs said that a miracle happened… but several days after hospital I made it to the Cambridge Folk Festival… Just for a few hours each day and had to sleep in my chair quite a bit. Oh it was marvellous and I was able to vote for and choose a new artist for my prize this year. The Wonderful Angeline Morrison… Please take a look at her work on this link. She is already becoming a friend along with Mishra, Katherine Priddy and Nick Hart/all previous winners. Because we had had COVID good and proper… By the end of Summer me and Ma felt a bit free and took some risks with new found immunity and after those locked away years… Ma dressed up as David Attenborough and joined the Strawberry Fair Parade (theme was LOVE OUR PLANET). I went on a holiday adventure in my new BIG BLUE VAN to meet up with some old friends. A proper adventure… night drive to Scotland, choppy ferry crossing to Ireland, a breath taking view from the holiday cottage… Oh and I tried Guiness. It was all amazing! “Get out there and live your life”. So I am back “Pubs, Gigs and Cakes” are a real feature of my life again. I even managed a Tom Jones concert. I’ve got a FLU jab and a COVID booster under my belt/in my arm. BUT Winter is about to become a reality and adjustments will probably be made… quieter times, less crowded places. Going to keep this return BLOG positive… So next time we could talk about the health access barriers/challenges I experienced both as an in patient and now as a (middle-aged!) man with learning disabilities in the community. Health Inequalities are still a huge reality. Did you all watch the recent Panorama programme? But in the mean time… HAPPY BIRTHDAY TO ME and thanks and love to my PAs, friends and family. FIREWORKS PARTY TO PLAN FOR TOMORROW. BLOG POST SCRIPT… Here are some more COVID freedom pics… Hockney exhibition. Taking my whole team punting. Buskers in my garden. Wore my MBE medal to the pub in honour to the Queen.
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Before we catch up properly… a bit about BLOGGING, something I plan to be doing a bit more of again now that Autumn (and pretty soon, Winter) is again upon us. People sometimes ask how MY VOICE is at the heart of this blog, given that I don’t use SPOKEN WORDS or tap out my thoughts on a keyboard myself. In all areas of my life, my family and PA’s (many of whom have known me a very long time) are alongside me… sharing experiences, watching, listening, checking with one another how they think I’m feeling about things, what it is I’m saying in the many different ways I use to say it. They say a picture is worth a thousand words, and boy, do they take one hell of a lot of PHOTOS! My blog, like so many areas of my life is CO-PRODUCTION in its purest form. So back to BLOG business and a CATCH UP. FUNSince Boris stuck to my interpretation of The Road Map, I have made the most of going to my favourite local pub and sitting outside. At first we had Winter coats and blankets, sometimes umbrellas but there has been sunshine. Much needed. As ever Ma has been there with the hand gel and policing a safe distance! Summers always would see me with a crammed diary… road trips, festivals, cinema, visiting family in France, London on the train and making the most of all the things that go on in my home town of Cambridge. All this has stopped for now... but we have been on Camper van picnics, visited the sea and walked the dog. The best part of the year so far was my FOLK FESTIVAL at HOME. It was a huge success. We painted all the signs, had a detailed COVID Safety Plan with Live music and drumming late into the night. I had my own VIP safe area and even slept out that night under canvas. PROPER FESTIVAL STUFF. SLIGHTLY MORE SERIOUS STUFF. As well as not being able to be free to join in with all of the stuff that I usually enjoy there have been some changes and challenges around staying safe and well. Before Covid Times I had worked hard for many years to be able to go and see my GP and know that I could have all sorts of reasonable adjustments to support me to advocate for myself… by just being there and well known by reception and clinical staff. Much of this progress seems to have been chipped away. Ma and my PAs have to spend a lot of time talking to admin staff through a crackly intercom on a locked door... I have become a little invisible in the process.
The COVID BOOSTER jab is another worry. I had my second jab well over six months ago and although I was told to SHIELD for all of those months and have had more than my fair share of hospital admissions….. I have not been offered a follow up BOOSTER . We have tried everything… GP, NHS ON LINE, 119… but we just cannot book. It seems that it depends where you live and not whether you have a very serious need. My GP always used to help and support me with these sort of situations but now there is no clear advice…. just “wait for the NHS to be in touch”. Are people who have Learning Disabilities and were SHIELDED for all of those months finding the same barriers? Seeing the dentist is another challenge…more of that next time SO WHAT NOW? My Birthday always means that the clocks will change and I will need to adjust for a while… it always means taking extra care around colds, flu and all those things. COVID has meant that I lockdown even more in these darker months…… HOWEVER…… There are cakes to cook. Fish n’ Chip Takeaway Fridays Gigs to plan in the garden next year AND….. After years of not working, I have joined THE VALUING PEOPLE ALLIANCE as a member of their ADVISORY GROUP. My role is to represent people with Learning Disabilities and… Complex Needs… as ever there will be a lot of issues! This BLOG is a connection and open invitation for people to share any experiences they have… I will add them to my own lived experiences and share with the hope of changing and improving lives. Can but try... again! LAST THING… Instead of updating my CD Player, I have invested in an air purifier...
A BIG ONE If you don't already know, you should do because I have mentioned it a few times but I run a prize at the Cambridge Folk Festival, it's called the Christian Raphael Prize. The nominees usually preform on The Den stage at the Folk Festival and me, my family, PAs and Cambridge Live decide over the weekend who should win. Unfortunately due to the continuing pandemic this has been unable to happen in the usual way, so we have streamed it instead. Here is the streamed event... We have been collecting donations for the artists here, this will still be open for the next few days if you would like to donate to support the artists.
The nominees are... Josh Okeefe Ceitidh Mac Cynefin Burd Ellen Nick Hart Bird in the Belly Also with appearances from previous winners... Bella C. Collins Katherine Priddy Mishra Hope you enjoy the gig as much as we did.
So when Boris announced his ROAD MAP on 22nd February I had a sit down with Ma and the PA’s and we looked for Important Dates that would mean changes for me. So here’s my ROAD MAP which is on the side of my fridge and boy am I looking forward to pub gardens being open! Mind you just because I’ve had one VACCINATION and we’re all testing... doesn't mean I'm in a hurry to get out there and mingle. I’m still doing my Shielded Drives and I’ve had 2 or 3 walks down my road when no one else is about. This week I’m trying out some new masks because I was beginning to feel uncomfortable in the blue clinical masks, and I know I will have to wear masks for sometime to come. Anyone got any good recommendations?
One other good thing is online music festivals. With PA’s and Ma I watched CELTIC CONNECTIONS MUSIC FESTIVAL and a spin off festival called CCM LIVE. Lots of great music and lots of fantastic musicians playing right in my front room (on the TV at least). Made me stay up late! As you know there are two musicians that are very close to my heart both winning my Cambridge Folk Festival prize. KATHERINE PRIDDY delivered a fantastic evening at FOLKSOC and I’ve just listened to a podcast with MISHRA on my shielded drive, quality stuff. Click here to find the podcast.
So, Rest in Peace Samantha. Before I sign off from this blog just wondered if other people with epilepsy found it was a bit more difficult after their VACCINATION, I certainly had a few uncomfortable days. When I next blog we might all have stories to share about a little more FREEDOM, let’s see how the ROAD MAP goes…
Yesterday a picture popped up on my screen saver from 4 years ago. It was taken on Valentine’s Day when I was very unwell in hospital, this sparked a conversation with my sister, Ma and one of my PAs about what love is. We sat up to late into the evening discussing this (masks on, social distanced and windows open natch) and it turns out love means different things to different people at different times. We Googled Valentines Day and found this out about Saint Valentine. He is not just the Patron Saint of love but also of BEEKEEPING and EPILEPSY! When we were talking we did agree on one thing, that love does seem to be about always looking out for someone who is important to you! It’s almost exactly a year since I’ve stopped being out and about. There have been so many moments and examples of love and kindness despite my door being closed and my mask being on. Here are a few tasters… My Dog – A constant companion watching out for me. He is right there for me when I am having a seizure (love and epilepsy (but no bees))
Today is the first day of Feb 2021… it has a lovely pattern. 1 2 2 1and backwards it is 1 2 2 1A good day to say Happy New Year! Somehow, even though SHIELDING and LOCKDOWN were real things, I haven’t had time to blog since November. I spent a lot of time in December wondering how Christmas was going to look in the world. It was beginning to feel a bit scary with Boris’s talk of everyone visiting their grannies. But then on the 22nd we went into TIER 4 and I got an immediate text from GOV.UK saying it was time to officially shield again. (nothing new for me then.) But Christmas happened and it was great. My sister Doc saved up all of her annual leave, self isolated and then emerged so that all my PAs could have a Christmas holiday and I could make FESTIVE with my family. It was great, here is the photographic evidence. Much mask wearing and hand washing and thank god for my weighted blanket as the windows and doors were open for ventilation. On News Years Eve we had a bonfire and symbolically burnt things we wanted to leave behind. These included Boris, Trump and Covid-19. One out of three… not bad! But we were talking and thinking a lot about how to stay safe in the New Year. We had no sight of a vaccination or testing for us, so we made some radical decisions. I asked everyone in my team to make me a diagram of their networks to show risk levels. After having a long old chat, I’ve had to make my team smaller to make me safer. So this is how 2021 looks so far. 1. I’m taking lock down seriously as directed by GOV.UK 2. Ma is still anti baccing everything, as directed by GOV.UK 3. I only have 1 PA a day, it keeps the Covid away! Seriously though there has been some progress. I’ve made lots of plans for 2021, none of them include travelling over seas, although I would really love to see my French family, but lets not go there at the moment. I’m working on a music area in my garden as festivals seem very unlikely this year. It just looks like a patch of mud at the moment but watch this space. I’ve just enjoyed nearly 2 weeks of an online folk festival called Celtic Connections, it was AMAZING. And it even included the wonderful Katherine Priddy. So lockdown hair is happening again but my campervan is serviced and MOTed and ready for action. And here is some really GREAT NEWS… Last week me and Ma and 2 of my PAs got jabbed with the Pfizer vax. Ma was really worried about emerging from isolation and queuing with the crowds. But reasonable adjustments a-plenty and it went really well. I now have lateral flow tests at home too and me, Ma and the PAs all test twice a week. PPS - Here's some suggestions to beat lockdown boredom... cookingreadingbird watchingshielded drivingdrive by catch upSUNDAY BLOGA bit of a Blog on a Sunday evening before Strictly Results Show ….. yes, I am quite taken with the glitz and action!
SO …… CATCH UP!
My PA’s, Ma and I continue to be part in a Public Health England’s Advisory Group. We had Teams meeting all through LOCKDOWN 1 and I knew that a report on how COVID-19 had affected People who have Learning Disabilities was being written …. BUT …. The messages in the report when it finally came were more than shocking. Please read this article from Jonathan Senker … so much more to do, understand and act on. Then came LOCKDOWN 2 …. pubs closed again, and the clocks confusing us all by changing. I have found this all a bit difficult. My sleep patterns changed then had to deal with the deep gloom by 4:30pm. HOWEVER …I have been trying to get out earlier in the day for a drive or a safe walk and then indulging in an evening bath, TV and early nights. The early nights are particularly pleasurable as I spent some time designing, decorating, and re-lighting my bedroom and bathroom as a LOCKDOWN winter project. Pretty pleased. Thank you Jade …. Decorating in PPE and abiding by our strict rules …. STAR decorator. Also, I had my birthday in late October and managed a Zoom catch up and take away curry. One of my presents was to have some PJ’s (essential day wear during LOCKDOWN) made by a friend of a friend in Tanzania. This involved choosing fabrics from a Tanzanian market online and then being measured live in Africa on Facebook Messenger (great fun), Ma used some of her rusty Swahili. The results look stunning….. just waiting for shipment now. SO BLOG MAIN MESSAGES :
On the Health Front… I had my annual consult with my neurologist on the phone… Was ok, but not ideal as my Ma had to do all the talking and my doc needs to see how I am looking/moving/listening and all that for herself. Anyway… Next year it will be a video call. Next year! Hurrah… The dentist had a cancellation so I had a check up! He told me to chase up my next appointment because “ I don’t want you to get lost in the system because of the back log.” My epilepsy has been quite up and down over the last few weeks and gets in the way of going to the pub and stuff as I end up sleeping and/or feeling anxious and not being able to settle into anything. Another hurdle… over the last few months it has been quite a challenge to balance and juggle my support plan… all because of Covid-19! Self isolation, quarantining, finding tests and waiting for results, all those things make putting together a support plan very tricky. My Ma has had to take being “on-call” and “back up” to the extreme. We all talk and scratch our heads a lot trying to plan ahead and come up with a solution as the months ahead are looking tricky! Any creative ideas Boris? Talking of “tricky”, having a flu jab is a bit complicated this year. It seems that I am not flagged up as particularly vulnerable or as a “paused shielder”, I just have to compete with all the other under 65s to have a clinic appointment. By the time we rang the GP all of the slots were gone but then they found a cancellation at 8.45 on a Saturday morning. Quite difficult for me as getting up takes time and support… So does getting to the surgery… Also my PAs don’t arrive until 10am. We asked for a reasonable adjustment but it was not forth-coming. Anyone else having problems? GOOD STUFF... Lets end with some good stuff… -This blog got mentioned this week in a fab new book by Sara Ryan, here is the link. -Dusted off the camper van and had a trip out. -I got a new chair to sit and watch Boris on the telly, ha! -I am planning on decorating my bedroom to get in some warmth, colour and light before the dark evenings. I am looking at colour charts online. -Getting into cooking and have ordered some interesting ingredients from my online Sainsbury’s shop. -All of my Ma’s cook books are now in my possession. Oh… I had a hair cut and… What’s next Boris?
So what has changed? Mostly the weather. Sunshine has meant a bit of freedom. We talk a lot about Risk Assessments at home .When everyone is happy we go off in the car and wear masks, use loads of hand gel and find sociable places where we concentrate on kind of staying away from people. Actually there have been some good moments…a walk in the Botanic Gardens , a trip to the coast and the very special opening of my local pub just for me and my family and PAs. The BIGGEST and BEST bit was my Folk Festival at Home. More sunshine meant that a few of my local musical mates came to my garden (Mum had a very long list of garden rules and strategic hand gel dispensers!)and we had a weekend long handmade festival ending with a major light display each night for four nights…..just like any other festival though we got rained off just as it got dark on the last night ! Last week …just a few days into liberation I got poorly again and had to visit GP …..outside the surgery as I had a fever. A rough couple of days, antibiotics and a COVID-19 test for me and the whole team. My Ma did not enjoy the experience but I impressed everyone by being super cool about the whole thing! We have all had negative results , so on with more of the same….handwashing, finding safe space to be outside and making plans for when the sun stops shining and life has to be lived back inside.
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AuthorHello, I'm Christian, welcome to my blog. Archives
October 2021
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