Covid-19 Vaccination - Side Effects, My Experience

My GP is fantastic. He is very engaged with his patients and uses Facebook to provide updates on Covid-19 vaccines. In the last few weeks, my area was ahead of the national average and it became apparent (via my GP's updates) that no further vaccine was expected before Feb 22nd. That has subsequently been updated to Feb 26th. So, my hopes of getting the jab were put aside for a while. I didn't mind, I knew my turn would come.

Fast-forward to last Friday (Feb 19th). News reached me that a clinic within my postcode was accepting patients who are eligible for the jab. As a Type 1 Diabetic, I am a part of Cohort 6 in England. That means I was eligible. I booked the appointment online for the following day! A mix of nerves and excitement hit me. I think more excitement than nerves. I'm used to having vaccines. I've had my flu jab, each year, for a while now. The nerves arose from being in a public place with people. Actual people. Attending an appointment for something which will ultimately allow me to do that very thing without fear.

You've probably read about the experiences of others who have had their vaccines. It seems that organisation is as good as it can be for the majority. No surprises, here. Same. I was told to wait for 5 minutes before my appointment time before joining the queue. It took a little longer than 5 minutes before it was my turn. A mix of people were in the line. My cohorts! and some clearly from cohorts relating to age. Shut it! They're not my cohorts! I'm in the young diabetic group.

The jab was no more painful than a bolus injection. I was handed some paperwork (the one in the pic) and a little card, detailing the type of vaccine I've had and the date. Then freedom! Well, not quite. Back to lockdown.

Then, nothing happened. I don't really know what I was expecting. I was expecting something! Tick-tock! Where is the headache? The feeling rough? Perhaps I've got away with it. 

No. 2am, Sunday morning. Something exploded. I was woken by violent shaking in my chest. That spread quickly throughout my body, followed by the coldest I have ever felt. It was horrible. After a few hours of questioning my decision to have the jab and wondering if this is a normal side effect and spooning a hot water bottle to within an inch of it's rubbery life, I fell asleep. The rest of the night was spent waking and sleeping, tossing and turning, freezing and sweating.

When I tried to get out of bed on Sunday morning, it was then that I noticed everything hurts. Every bone in my body was aching. I spent the day taking paracetamol and ibuprofen and sleeping. The side effects started to subside as the evening approached. Eventually, I went to bed at around midnight. Only at that stage did I feel confident that things were improving.

Now, here we are. Approaching 48 hours after the jab. I'm almost my usual self. A little weak, perhaps but nothing to write a blog about... Oh, right. 

I do not regret having the vaccine, AstraZeneca - if you're interested. Over 120,000 people have died within 28 days of having a positive Covid test, at present in the UK. I know that b*stard virus has touched people I know. I know it's taken their family members and friends. I know people have suffered tremendously on many levels. If my day or two of feeling rough is my experience of Covid-19 then I'll take that gladly. 

Others have had no side effects at all. We're all different. Please don't fear getting your jab. Do the right thing.

 

Hearing Voices

 

It's been around 4 years since I became "active" in the online diabetes community. In 2017 I started watching and engaging with YouTubers before finding my way to some online forums. Eventually, I found Twitter and #GBDoc and that has remained my online diabetes go-to ever since. I've dipped my toe into Facebook but didn't really find the groups there to be friendly and moderated groups don't hold much appeal to me. I have an Instagram account, too. I enjoy some of the engagement on IG but I haven't really found the platform lends itself to peer support, personally.

Social media (Twitter especially) has been a huge, positive influence on my diabetes. Of course, as with any social aspect of life, there are instances when people you engage with are not friendly, are aggressive or simply don't like what you have to say. The more people you "meet" the more likely it is that you'll experience some form of negativity. And so it is on Twitter. I'm fine with that. Only a few days ago, I checked the list of blocked accounts on my account. There were over 40 but the vast majority were simply spam bots. A few people replied to my tweet with their blocked numbers and some ran into several hundred. I felt things have gone pretty well for me in that regard!

My train of thought led me think of the people I have engaged with. The names from the early days who are seemingly no longer around, the ones who have been there since day one and the new ones, hopefully good friends of the future. 

My mind also wandered to the popular accounts, the frequently heard voices. That brought about thoughts of the opportunities and assumed authority granted to some of those voices. We've been here before, haven't we? I've certainly engaged in such discussion on Twitter. I may have even started some of that discussion!

While the frequent speakers and brand ambassadors might dislike what I have to say next, please realise this; I've spoken about diabetes, I've represented two brands and I've accepted paid advertisements on my tweets. I've also turned down conference involvement and a third brand representation. Why? Because I'm a firm believer in a community voice being the voices of many and not a frequently selected few. Who and what I choose to represent is very much driven by that. Also, don't forget that I'm a straight, middle aged, white man.

We're stuck with the online variety of conferences and webinars, right now. It may continue in this way for a good chunk of 2021 or beyond, until we get the virus under control. I've been excited to see new conferences and webinars pop up in the last 12 months and remain excited at the prospect of more in the coming year. However, almost without exception, I've been disappointed at the names listed as speakers and, to some extent, the subject matter. I'm not disappointed at the quality of speaker or what they personally might have to say. I'm disappointed that it's the same names time and again.

The argument might be that people simply don't volunteer to speak at conferences. That is true but I believe there are two good reasons for that and easy solutions:

- Firstly, speaking opportunities are never widely advertised. I cannot remember seeing a single tweet, post or mailing list email which asks for volunteers to speak. So, advertise!

- Secondly, the majority of people who might be interested in speaking will not volunteer themselves openly. I know this from 2 years of finding hosts for the #GBDoc Tweetchat. YET! when asked directly, nearly everybody showed an interest in hosting. It might be a British thing. In general, I think people don't want to come across as "The Big I Am". So I often ask directly and the responses are far more favourable.

Why is this important? I think we need to hear the voices of many to get a broader range of views and experiences. I think we need to allow attendees to gain inspiration from all types of people from all backgrounds, not just who the organisers think are "inspirational". I think skin colours need to be varied. I think accents need to be varied. I think disability needs to be represented and I'm not just referring to diabetes! I want to hear the stories and experiences of people I've never heard speak before. I want to hear from professionals that I've never heard speak before. Those people and no doubt others, such as members of the LGBTQ+ community need to be heard. They are a broad representation of the diabetes community (online and off) 

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

BUY DIABETIC DAD A COFFEE HERE

KISS

 

Happy St Valentine's Day!

Today probably means very little to some of you. If you're single and looking for love or heartbroken or lonely then today might be pretty painful for you. I'm sorry if you fall into those categories. Rest assured, life rarely stays the same if you seek out ways to change it. If you do fall into the painful categories then I have great news! This blog isn't about St Valentine's Day! Woop!

The title of the blog is wrong. It should really read "K.I.S.S"

Keep It Simple Stupid

And that's what I want to touch on, today. Keeping things simple. Sorry about the photo, by the way.

I've had two experiences with the NHS in the past week. Let's look at the good experience, the simple one, first:

- I noticed that Freestyle Libre 2 was now available to NHS patients. I've been a Libre 1 user since 2017, self funded for a while and NHS funded latterly. My initial thoughts on Libre were mixed. I vlogged about it! You can watch one of those videos here : Freestyle Libre Inaccuracy - A Diabetic's Rant More recently, I've been a happier bunny. Accuracy has improved, I've found inserting the sensor into a thigh to be far better in terms of sleep and general comfort, no fails and nothing has fallen off. Cool, so Libre 2 seems like a natural progression. Here is what I went through to get it on my prescription:

Friday, 1.30pm - I emailed my practice nurse and politely asked if my Libre prescription could be changed to the new version.

Friday, 4.00pm - The nurse replied to tell me that has now been done.

That's it.

I felt like rushing to my doorstep and applauding.

No red tape, no need to sign anything, provide BG data, travel to the clinic, complain on Twitter, nada, nothing. Super duper!

And the not-so-simple experience?

- My lovely pharmacist called. He was processing my repeat prescription and, after scanning the 'script "barcode" his computer said 'No!'

In England, people with Type 1 Diabetes are medically exempt from paying for prescriptions. We fill out a form, the doctor signs it off and we get our medical exemption letter, card, number, whatever it is. That is then given to our chosen pharmacy and we're good to go! free meds!

Only the exemption award trophy expires after 5 years. Somewhere in the dark recesses of my mind I remember renewing this before. And here we are again. 

In a pandemic.

Stay home, shave wives, protect the DFS sale... or something.

It's also winter. And despite climate change, it's really cold in England, right now. Snow and ice on the pavements. Did I mention that I have a visual impairment?

Those things aside; even if life was totally normal and it was a beautiful day for a 4 mile stroll, what an utter ache in the plums! A 4 mile stroll encompasses the journey to the GP surgery and home. Assuming I fill out the form at home and not in the surgery (stay home) then it's another 4 miles. Then it'll be time to show my exemption to my pharmacist.

It's totally pointless to renew a medical exemption for a life long condition. It causes additional stress and burden. In my case, it's pretty dangerous.

I know this is probably on the agenda of things to change. I'm happy to hear that, but I wonder just how complex is it? In the scheme of things, it's not a massive issue but it is an issue and one that every person with T1D will face every 5 years. It needs to stop. This renewal system needs to be dragged into 2021. There is no cure for what I have.

C'mon NHSE and prescription processors, let's sort this one out. It's really simple and once it's done you'll look much less stupid.

 (Thank you to Julie Tickle for sending the renewal form to me in the post, saving me from one perilous journey.)

Fear

 The difficulties of T1D have been chewed over and over for years. New difficulties appear, from time to time, as people become comfortable or brave enough to start talking about them openly. I think we've seen that, recently with eating disorders and the mental health impacts on individuals living with Type 1 Diabetes. 

That's good, right? If we talk and share experiences then others don't feel alone, HCPs take notice, treatments and referrals can happen, we can get better or maintain health. I've always been a sharer in regards to my diabetes and, if you know me well enough you know that I encourage others to talk as openly as they care to.

It's not easy to share. At some point you'll probably be on the receiving end of negativity. Eventually, somebody will likely tell you that you are "attention seeking" or "showing off". That may be true. Social media is a place for seeking attention for engagement and I'm certainly guilty of showing off... I'm a sharer, remember? but for the right reasons. You may also be on the receiving end of self doubt. Did you share too much? Eek! Perhaps it's time for a social media break or to even abandon your accounts entirely and become a lurker, a reader, no longer sharing because it's safer that way. That happens. It's a shame when it does but it's also understandable. The Internet can be a vicious place, a scary place. #DOC is not an exception.

Social media fear is certainly a thing. I know I've written many tweets and decided against sending them. Sometimes I light fires on Twitter but I really do prefer the peace. Honestly, I do!

Fear plays a huge role in living with diabetes. I've read countless tweets from people who are frightened of what's happening to them and what might happen to them. The eye clinic, the lasers, the blood tests, are my kidneys okay? why have I got pins and needles in my foot? That chest pain.... Perhaps some of those are familiar to you. And your reaction? Fear.

Fear of complications and fear of dying seems natural. After 36 years T1D and a good taste of eye complications, I still "feel the fear". I don't think about things each day but, from time to time I get that moment where everything stops and my brain is entirely focused on what I have. Then it's gone. That briefest moment containing all the fear, all the self pity, all the anger and sadness. It might only be a split second! It feels like I've swallowed an anvil. Then it's gone.

What's the solution? 

I suspect the answer is in acceptance and to expedite acceptance probably means therapy, if not for all then for many. 

Right now, I don't think therapy would serve much purpose for me. I do, however think the newly diagnosed should be seeing a therapist as routinely as a dietician, perhaps even more frequently. And for as long as it takes. 

I reached the stage of acceptance a long time ago. Fear still crippled me when eye complications appeared on the horizon. My head went into the sand and instead of facing up to some uncomfortable weeks and months and coming out relatively unscathed, I hid away and my reward was a lifetime of visual impairment after two years of surgeries and pain. 

Would the news of eye complications and an offer of therapy have helped me? Possibly. I may have faced the fear of lasers and injections instead of pretending it wasn't happening. 

Could it help others? Possibly.

Is it time for newly diagnosed diabetics and people diagnosed with complications from diabetes to be offered immediate, on site, therapy as a matter of urgency and total normality?

You tell me! The comments box is below.  

2nd Class Diabetes

'We'd like to invite our Upper Class Diabetics to board first.'

'Thank you for your patience. We'd like to invite our Premium Diabetics to board'

'Are you guys still here?'

'K, I guess you test strip users can get on board'

It's Super Bowl weekend! and all the talk on Diabetes Social Media is of Nick Jonas and the Dexcom ad'. That's not entirely unexpected. I remember the first diabetes tech ads on UK TV causing much discussion, so it seem natural that one of the most expensive advertising slots in the world would attract some interest when diabetes tech is featured.

I watched the ad' earlier, following a JDRF UK tweet which suggested the impossibly good-looking Jonas was bringing Type 1 Diabetes awareness to the Super Bowl. That tweet is here if you'd like to read it.

Let's watch the commercial! 

If you're using your phone and the video isn't embedded above then you can watch the video here

What do you all think? Are the unaware of Type 1 Diabetes viewers going to be woke?

Possibly! 

Firstly, type isn't mentioned here. Just 'Diabetes' which, on it's own, is fine IMO. Perhaps all types of diabetes can benefit by using tech. I have T1D. It isn't mentioned. So bringing awareness of my condition to the Super Bowl viewers isn't really happening. Indeed, it might be argued that the ad' is damaging and breeding the ignorance that all diabetes types are the same. We know they're not. That's not throwing any type of diabetic under the bus, it's simply a fact. JDRF UK is a Type 1 Diabetes charity, remember.

Next up! "Finger sticks, really?" says the heartthrob. Yes! REALLY! What a horrible piece of marketing to the US viewers who are struggling to buy their insulin, rationing their life saving drugs AND their finger sticks. Can you imagine settling down to watch the game and, after taking your second and last finger prick of the day because that's all you can afford, you're greeted by Jonas. Finger sticks, really?

Wow.

I know it isn't down to the CGM company in the ad' to reduce the prices of insulin and test sticks and everything that goes along with having diabetes (any type). But it isn't alright to openly mock those who rely on those things to get by. Not by choice, remember. Many Americans (and nationals of other countries) buy what they can afford for their health. A CGM can be a luxury which is currently unobtainable for many.

I see this "class" system in various aspects of diabetes. Fortunately, in the UK we appear to have sights on a level playing field, thanks to the likes of Prof Partha Kar OBE. But in America and other countries? I can only imagine the thoughts of "What fresh hell is this?" when you watch that commercial and you're struggling to afford the diabetes meds and tech that you need.

Finger prickers, I love you guys. Don't give up fighting for the things you need at affordable prices. You're NOT a 2nd class diabetic.

 

Shares in Diabetes

Diabetes is certainly a long term investment. Selling out would be great, wouldn't it?

Sadly, this particular deal is locked in for life. Unless, of course, there is a cure in around... oh, shall we say 5 years?

I can already imagine that you're reading this and demanding to know what this blog is about. Shares? in Diabetes?

Like the FTSE Check 100? 

Or the Low Jones!

Maybe it's going to be something related to Pharma and their Banting Juice businesses.

No. What I'm going to write about today is the sharing of information in regards to your diabetes. The passing of tips, the screenshots from heaven (or hell), the freely offered resources you have stored in your brain from your diabetes experiences. Perhaps your HbA1c! Eeek!

I think it's all marvellous. I think it's really useful to hear about the experiences of others but not to compare myself or make myself feel like a failure because somebody had a better day than me. It's great to read about the successes and the tone of excitement in a tweet when the sender feels good about how they're managing their condition. I love that! and I take huge encouragement from A1cs which are lower than mine, TIRs that are higher than mine and people living great, long lives with Type 1 Diabetes.

I know sharing isn't for everybody. I know some take things very personally. I can't offer much advice if that relates to you, only that Diabetes is an endless supply of good and not-so-good times. Everybody has had an awful day but not everybody will tweet about it. 

I TRY to offer both sides of my Diabetes "coin". I tweet about the good days, the awful days and everything in between. I tweet about the things that I shouldn't do, such as reuse my needles and lancets, much to the eye-rolling of the DSNs. 

I won't apologise for that and I won't change. I do actually change my needles now, I mean I won't change what I choose to shares. I do my best to be a real diabetic. I do my best to give my honest views about diabetes. I... just do my best, as I'm sure many of you do. There is no such person as the perfect diabetic.

So, take on board as much shared information as you can. Don't try to emulate anything without proper medical advice. Don't be afraid to offer your views or your experience. You'll be surprised at just how many people you're helping.

Talking of sharing experiences! How do you fancy earning an extra £80 for a quick telephone call? I'll let Anne from QualWorld explain:

We are conducting a market research study among young people (16-20) and carers of children with T1D that would like to share their experiences of living with T1D. We would like to hear from carers of babies, toddlers and children up to the age of 13. Teens between 13 and 15 have the opportunity to participate together with their carer or under the supervision of their carer and express their own opinion, but carers can opt to speak on behalf of their 13 to 15 year olds if they wish to do so.
Participants will receive £80 GBP for a 60 min telephone interview.

To take part just visit: http://tiny.cc/r5b8tz

For information email: anne.verbeke@qual-world.com