Tag Archive for Nhs

Two months in ….. Covid-19 and me.

Uk gov poster reads, stay alert, control the virus, save lives

As I sit here on a Wednesday evening and type up this blog, I must begin with saying that I am well. I am not, nor have I been unwell with Covid-19 or had any symptoms. (Lets just hope that hasn’t put a ginx on it)

As all news channels are continually reminding us,

We are living in unprecedented times.

And that is putting it mildly. As I touched on in my previous blog post over eight weeks ago; when we hadn’t actually fully entered into enforced social distancing and restrictions on what we did and how we did it.

Social distancing and being aware of those around you are not so easy when you have sight or hearing issues. (I can only assume that people with other disabilities must also be finding this time hard)

The country as a whole has never seen anything like this in peacetime…..

Even the amazing Captain Tom Moore, who set out to raise £1,000 for NHS charities as he walked 100 laps of his garden in celebration of his impending 100th Birthday (who has actually raised over £33 million to date) says that this virus is nothing like any of the wars he was part of.

We have seen our country led by our amazing NHS workers, supermarket staff, delivery drivers, teachers, support staff among many many others and where The Daily Briefing has become part of a daily routine for so many, along with the weekly ‘Clap for Carers’ on Thursday evenings, I am struggling to find the words to write.

Yes, you did hear that right…

All of my volunteer roles are suspended.

Planning for my next big adventure is on hold.

My house has been rearranged multiple times.

I hold weekly meetings with my small group sisters from church.

Sunday morning worship is all online via a live church platform.

And in all honesty; I find using Zoom absolutely exhausting. However, at the same I time I am incredibly grateful for this way to be able to stay in contact with others.

Daily life and this ‘new normal’ isn’t easy on anyone. However, I made a conscious decision at the beginning of this to be more of a Positive Patsy that a Negative Nancy; don’t get me wrong, I have hosted a few pity parties for one. But actually the way you react to a situation is what strengthens you as a person.

For me, the biggest part of this is my independence, there are no other adults living in my home. My son has continued to live between me and his dad, while my daughter has been isolating with her dad and step mum for about 10 weeks and only seeing her on my phone has been heartbreaking, however she needs to protect her dads health and being 14 she is actually incredibly well adapted for not going out and only speaking to people via WhatsApp and Instagram.

Delivery slots for shopping are still few and far between, however one bit of good news is that Tesco have (off of their own backs) enabled those with visual impairments to register for their priority delivery. While sight loss charities Guide Dogs, RNIB and The Thomas Pilkington Trust have been working on a petition to make the government aware of the vulnerabilities of those with sight loss and the need for these to be included within the Governments scheme especially to enable access to home delivery from supermarkets.

The Bad news is that my guide dog Fizz doesn’t understand why when we do go into town that we are not going into Caffè Nero, Coffee 1 or Costa (being that they are all closed). She is however grateful that we can still shop in Wilko and Poundland, because actually for cleaning supplies, medications and toiletries I have found these stores much quieter than popping into a supermarket for anything I need between deliveries. (And the plus for Fizz is that both stores have pet aisles!). And for my own sanity, having the ability to pick up these little bits myself has helped me feel in control.

Guide dog Fizz sat with her red and white check harness infront of a wall painted with a giant rainbow to support the nhs

Social distancing has continued under the government guidance and I fully understand and support the need for this, to not just keep me safe; but to also keep others safe…. Especially key workers.

For me it is simply the struggle for me to do this…… Although Fizz has started to just stop and stand still when anyone comes near us, I have found different stores difficult for different reasons. Especially since the introduction of one-way routes. My local Coop store has been the best by far. Not only have they put arrows on the floor to point you in the right direction; they have also put big red ‘NO ENTRY’ markings on the floor for aisles you should not enter at that end. Simple, yet for me incredibly affective as I can see the red much clearer than the blue arrows.

As I said before, I have decided to be more of a Positive Patsy (and not as in continually drunk like the Patsy in Abs Fab) and in turn my anxiety has reduced as this ‘lockdown’ has continued. There have been occasions where I have missed the queue of people socially distancing to get into a store. It was not intentional that I queue jumped, it was rather that Fizz has set routes and entrances that she is use to using. I have tried my best to keep the distance between me and others, but I have also made mistakes. And when we have been out on our daily exercise Fizz has taken to just stopping, standing still and waiting for the other people on the path to move out of our way or cross the road. Which (at the moment) I can’t decide if this is a good or a bad thing.

So, for someone who couldn’t find the words to write this post, I have managed to take up quite a bit of your time. It’s turned into a long post; however that said, I hope that you have enjoyed it.

Please do Stay Safe, if you can Stay Home, Protect the NHS and above all please Take Care.

Encouraging 100,000 Genome update

Back in 2014 after initial genetic screening was ‘inconclusive’ Proffessor Moore at Moorfields ask my permission to enter my blood into the 100,000 Genome Project. A project conducted by the NHS looking specifically at cancers and rare diseases to support treatments, diagnosis and research. (For full details on the project please visit https://www.genomicsengland.co.uk/about-genomics-england/the-100000-genomes-project)

As the name suggests it is a research programme that looks at all 100,000 genes. So I was advised it would take some time before any results were expected back.

However, Prof had felt that given my various conditions that were going on with my eyes I would most likely have some interesting results come back.

Fast forward 5 years and this arrived in the post.

Photograph shows a letter, blood form and plastic canister for holding blood vile in

Preliminary results for my genes are in, but to look at these in more detail I have been asked to send in more blood! Thankfully I was able to book in with my local doctors surgery and pop my samples back in the post. (Which is exactly what I did)

In the meantime I had my bi-annual visit to Moorfields, where the registra I saw started to explain the preliminary findings; Prof wasn’t wrong in his thoughts !!!

Which all I can say at this time is that they are most certainly interesting and not what was suspected at all. Not in a bad way, no illnesses or disturbing diseases were discovered; but in a way that has opened more questions than it has answered.

So, now to wait up to a year for the detail results to come back and hopefully a clearer understanding….. Watch this space.

What a difference a year makes

Selfie photograph of my face, with a scarve on that is blue with red popppies. I am wearing my glasses and my hearing aids with my hair

On 20th March 2017 I found myself sat in the audiologists office having my hearing aids fitted; which I wrote about in What does sound sound like?.

I had previously been told I would only need a hearing aid for my right ear, yet when I arrived at my appointment I was actually fitted with a hearing aid for both my left and right ear; a pleasant suprise, yet a very welcome on.  Because in giving me hearing aids for both ears the audiologist was able to programme the strength in each side differently so that I heard the same.

I wont’t lie, I hated wearing them.

It took me a long time to get used to ‘hearing’things again.  The little things, like the kitchen clock; the dogs gnawing on their bones; the sound of my feet on the pavement.  But (following the audiologists advice) I soon learnt to ‘not hear’ or rather ‘tune out’ these sounds; sounds that my brain had learnt to ignore (just as it does for most people who can hear perfectly well)

I also quickly learnt how little and inconspicuous my hearing aids were.  With very few people realising that I actually wore them.

When they were originally fitted, I had them set by the audiologist to automatically adjust with no input from me.  However this was not while I got used to them.

In July ((1 beep, 2 beep, 3 beep, 4) I had my hearing aids adjusted and since then I have gone from strength to strength in using them and wearing them each and every day, just as I would with my glasses (even though I now get so little from wearing them-wearing them is a daily habit)

I have also added to my ‘tech’ to go with my hearing aids, with my amplicomms personal t-loop system I am able to listen friends in busier environments, have calls streamed directly into my ears with the microphone around my neck; I am also able to listen to audible and music too.

My CPiC and I are working on using it as an aid to my climbing….. But that is a whole other blog post!!

So, what have I gained in the last year?

I have learnt that just like glasses for me, hearing aids to not ‘fix’ my hearing; however they do enable me to hear more and clearer than if I don’t wear them.

I have been able to feel safer out and about, especially with hearing traffic and its direction.  So much so, that in recent months I have gone back to enjoying walking into town (about 2.5 miles) with Fizz guiding me.

I have also learnt that I can ‘shut out’ noise if I want to sit quietly with a cuppa or a cold pint, then I can turn my hearing aids down, put them into the induction loop setting and I can sit peacefully.  So I can have ‘selective’ hearing too!!

Its been an interesting year of wearing hearing aids, I would be lying if I said I am getting used to them….. But I am finding the postitives with them, both with my own hearing and with the connections I have made with other people who have hearing and sight issues.

I am still wanting to work on fundraising for my own pair or ReSound Hearing Aids, which are so much more ‘tech’ friendly with my iPhone and Apple Watch, but that is a work in progress.

 

One beep; two beep; three beep; four

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