Posted in Archive, covid-19, february 2021

Covid-19 Vaccine with Chronic Conditions

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Covid-19 Vaccines have been rolling out for several weeks now. I am fortunate enough to have had my first vaccine, Pfizer, administered last Saturday. The uptake the vaccines for Covid-19 has been fantastic to see. However I am aware from the questions that have popped up on my facebook page, and private messages that there some concerns out there on how safe these injections are for people with chronic health conditions. A worry I completely understand. I have a history of anaphylaxis myself to certain foods, and a have had psychotic reaction to two different medications previously, it has left me very wary of trying any medication that I’ve not previously had. But I’d much rather trust in the figures that say its going to be ok, than risk catching Covid-19. I’ve put together information gathered from a few of the charities/societies that this represent the conditions this blog covers, in the hope that it will provide those of you who want some information with what you need, and reliable resources to turn to (all the sections are hyperlinked so you can link through to them).

Covid-19 Vaccines| Dystonia UK

Dystonia UK put the safety of the vaccinations to their three medical advisors, all three agreed that it was safe for Dystonia patients to receive (including those receiving botox injections). It was suggested that if you have not already heard from your dr/gp in regards to your vaccination appointment and your breathing is affected by your Dystonia then it may be worth chasing this up.

Covid-19 Vaccines| Ehlers-Danlos Society

For those with Ehlers-Danlos who are wanting to talk to their Dr I recommend going to the Ehlers-Danlos Society website where there is a link for advice for clinicians on the matter. The site currently states that they are note aware of any studies that have specifically examined EDS or HSD with covid-19 injections. However those who have chronic conditions that could be made worse if they were to develop covid (including potentially Long Covid) the benefits of protection from the vaccine outweighs the risks associated with the infection on vaccination side effects.

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Covid-19| PoTSUK

For those of you with PoTs/Autonomic Dysfunction/MCAS who are specifically interested in the vaccines ingrediants list then click here. This will take you to the PoTS UK page dedicated to information on Covid-19 vaccine info, where you can find a full ingrediants list for both the Pfizer and Oxford injection.

The recommendation that PoTS UK are giving so far is that for PoTs patients, if your condition is uncomplicated then it is not a contraindication for the vaccine. If you have MCAS and experience very severe allergies, you need to discuss whether you are suitable for the vaccine with your allergy specialist.

Further information can be found on the link given above.

Personal Experience

I had my Pfizer vaccine jab 7 days ago. I was invited to book after being deemed extremely clinically vulnerable throughout the pandemic. The set up was simple, our local rugby stadium has been converted into a vaccination centre. Volunteers split us up as people arrived, those who were there via the mass vaccination scheme to one room, those for the GPs vaccination, like myself, into another. After confirming who I was, and being given some literature to read through on the jab for afterwards, it was done. Personally found it less painful than the flu jab, and far less painful than botox injections! It was then off for a 15 min sit in a chair to ensure that there were no unwanted side effects before being allowed to leave.

Side effects wise they have not been to bad, my arm has been a bit achy and I felt very low energy for maybe 36 hours. Quite similar, but not as bad, as to how I react to the flu jab. The provided information leaflet, did warn that the second jab could provide slightly more side effects, however I’ll take a couple days side effects any day in exchange for proctection.

Overall nothing to be concerned about. Relatively quick, very easy, fairly painless.

Posted in Archive, covid-19, January 2021

Disability & Discrimination During Covid-19

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As the world adjust to Covid-19, those of us shielding in the UK (and the thousands of other impacted disabled folk) have read multiple news report to see how it will impact us next. Reading through each new regulation brought in to ‘flatten the curve’ screamed ableism. Whilst I agree the new rules were needed there was no consideration for the disabled people in society. Even under tier three regulations when we were allowed to reemerge from our homes after months of shielding, the regulations had no adaptions for us. They were discriminatory at best; put yourself in our shoes and suddenly being faced with having no access to a public disabled bathroom, having to que to shop with no where to sit when your physically need to, a lack of parking because many disabled spaces are now being taken up by outdoor seating for pubs and restaurants. Many disabled people who were being interviewed for research by Inclusion London reported that they felt excluded and marginalised.

There was a fantastic article in The Guardian today, with an interview by paralympian Sophie Carrigill addressing inequality, specifically around how the needs of disabled people have been ignored throughout our multiple lockdowns; you can read the article here. I completely agree with her, my social media is full of adverts every couple of scrolls trying to encourage me to sign up to one fitness program or another. Even my gym is going live and notifying me, along with influencers left, right and centre. Yet I am aware of only two people currently who cater with workouts for the disabled. What really shocked me though was when I went to comment under the article on facebook. It was disability discrimination and frankly simply disability hate comment after comment. The completely ignorance of people was astounding.

Adaptive Workouts – Disability FriEndly

A fellow Dystonia warrior Gina, runs Adaptive Martial Arts (I’m meant to be trying this when I’m having a healthy run myself!), which you can do via Zoom currently. The second, is a woman I recently found on instagram who teaches dance via her wheelchair her handle is @katestanforth .

Disability Discrimination – The evidence

There has been a significant rise in negative attitudes towards people with disabilities since the start of the pandemic, or to be more specific since the start of the shielding and need to wear a mask. Its not hard to find evidence of this, its all over social media but also sadly there multiple news and police reports on the subject.

A report by the neighbourhood watch found that a recent survey carried out found 62% of deaf and disabled people organisations reported an increase in disability hate crime referrals on the previous weeks – this was just after it was announced face masks were to become mandatory. I myself have twice been yelled at for not having mask on, once whilst relocating my jaw and once yesterday whilst having a sip of a drink.

The findings from Inclusion London Briefing are really quiet troubling about the rise in Disability Hate Crime during the course of this pandemic, you can read it here. To name a few examples 1) A rise in hate crime by neighbours including a rise in hate crime against disabled children whilst they are at home by neighbours. 2) A rise in verbal abuse against disabled peoples and instances of being spat at whilst out of the home due to inaccurate perception the disabled person being a ‘virus spreader’. 3) An in increase in online hate crime, often on social media platforms, in which disabled have been that their lives are inferior and that they are taking up resources from non disabled people.

Disability Inclusion Post Lockdown

Where do we go from here? It’s going to take a lot of work and advocacy to get us to some level of equality – which the Inclusion London Briefing article briefly does touch on. I don’t know when that will happen and how we go about getting the public to flip their perception again. Part of the way that perhaps that can happen is that when we come out lockdown the regulations allows for disabled people to use our bathrooms when necessary, and doesn’t turn our much coveted gold dust parking spots into garden seating for pubs. But that would only be the start, we need a whole lot more to turn peoples attitudes around.

Posted in Archive, January 2021

Mental Health: It’s About Surviving Not Thriving

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Mental Health Custom Poster

The current times we are living in are unique. Nothing we have ever lived through before could have prepared us for a pandemic requiring multiple lockdowns and restricted social interactions. Reports on rising rates of depression, anxiety and mental health issues are really not surprising. There is no normal currently. Life has become about surviving not thriving through each moment, and focusing on the little wins as they come. If you wore actual clothes instead of fresh PJS today then in my eyes you are smashing Lockdown Three.

If you are struggling right now and feel like you need a bit of help please do explore the options below. I myself have tried several of them and am more than happy to discuss this if needs be. Simply send me a message via the Dystonia and Me facebook page and I will get back to you as soon as I see it.

NHS resources for Mental Health Help

  1. https://www.nhs.uk/oneyou/every-mind-matters/?WT.tsrc=Search&WT.mc_id=Brand&gclid=CjwKCAiAr6-ABhAfEiwADO4sfRJl_Cdhon5SUEsyIIISYLnZpfvy7_X_HoT1E-XINaDydvctSQR3xRoCA9YQAvD_BwE

This link will take you to the NHS Every Mind Matters page. Take the time to really explore this site as it is full of information. If you are finding it hard to absorb maybe bookmark the page or print off some bits and come back to it. One of the great aspects of this site is that it has a feature called Your Mind Plan Quiz; you answer 5 questions and it creates a plan designed to improve and maintain your Mental Health.

2) https://www.nhs.uk/conditions/stress-anxiety-depression/moodzone-mental-wellbeing-audio-guides/

If audio guides are more your cup of tea then these free NHS audio guides may do the trick, there are multiple ones to choose from depending on what aspect on your mental health you are struggling with.

A-Z Mental Health Charities Link

https://www.nhs.uk/conditions/stress-anxiety-depression/mental-health-helplines/

Whether you need help yourself, or you concerned about a loved one, these charities and support groups will be able to help or point you in the right direction.

Urgent NHS Mental Health Helpline (England Only)

https://www.nhs.uk/service-search/mental-health/find-an-urgent-mental-health-helpline

This 24 hour helpline is available for people of all ages. The link will take you straight to the assessment which will get you started.

Posted in Archive, January 2021

Lockdown, Homeschooling and Work

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With the introduction of the new lockdown I had had been planning on getting crafty with the kids again. That idea was snuffed out after an email landed in my email box confirming that nursery would be doing live home lessons followed by tasks to be completed, photographed and emailed to his teachers. All well and good except my partner works shifts and I have an 18 month old whose favourite word is no, also takes no as a yes and will most deffinently try to touch every key on my laptop.

So today was the first home school lesson. After half an hour of technical wrestleling we finally got on to Teams and were met by a chorus of STEFAN. The children were happily mucking around with each other, my daughter was desperately trying to join in and the teacher? Her laptop had the same issues mine had to start with and never made it to the lesson. Round two tomorrow!

Dystonia and Me Holistic Health Coaching is officially up and running which has added a lovely touch to my evenings. I have been thoroughly enjoying chatting with different people with a range of issues and starting them on their journeys with me.

Colourful heart enlarging in further colours being touched by a human figure in blues and purples

I would love to hear if any has had the vaccine yet? From the calculator I predict mine to be late Feb to March at the current injection rates and would be interested to hear your experience in the comments. I personally will be accepting the offer of the jab, I just would like to go in to it eyes open to side effects.

Posted in Archive, October 2020

New Found Independence

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After discovering recently the wait to be assessed in my area for an electric wheelchair was likely to be several months if not more, we decided to explore what other options were out there. My happy accident after days of searching and getting to the point of really feeling like I was just going to have to accept that I was essentially mainly house bound at the moment, I stumbled across National Mobility Hire, which I have until April 2021; hopefully by then I will have had my assessment but that’s about the current wait time. I only wish I had found them sooner. This morning they dropped my electric wheelchair off and it’s as if they gave me the key to life back.

As soon as Damon had got home from work we set off out with the kids to test drive the chair. It was a complete and utter dream, to be in control was empowering and so uplifting. It gave me such a boost. Since loosing the use of my leg I’ve been unable to take my son to school, such a basic task every parent does and it has devastated me. We weren’t entitled to help from the council as he’s not compulsory school age, my partners hours change every other week so he couldn’t take him, and Covid-19 has limited our options for help as we live in a Tier 3 area. Honestly with each week that was going past it was harder to figure out; this chair completely changes that, it enables me to get him there and back again. Knowing I can do this myself again brought me so much joy.

Posted in Archive, October 2020

Dystonia & Me; Spoonie Talks

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Some of you who have popped on to here over recent days will have noticed small changes popping up around the site. It’s an exciting time for the blog. In the eight years its been running for it has had the same look, so it was about time it had a make over along with a brand spanking new feature. Hopefully this means you’ll find it easier to navigate, but as always I’m only a message away and you can always drop me a line over on the Dystonia and me Facebook page if you’re having any difficulties.

Dystonia & Me; Spoonie Talks Logo

Spoonie Talks is the blogs latest new feature, this will be a weekly podcast posted up every Friday evening. I am overly excited about this. It’s an idea I have had bubbling away in the pipeline for awhile but it was never quite the right time. However sometimes you’ve just got to grab the pandemic by the horns and give things a go, so I’m launching Dystonia & Me: Spoonie Talks podcast and hope to have the first episode up and running by the end of the month.

How can you be involved?

While some of the the episodes will just myself talking, I’m aiming to make this an interactive series bringing light to issues that my readers, and the Dystonia and me community feel strongly on. This really could be anything! It could be on a specific condition that you would like to spread awareness about, you could be a carer and wish to discuss what that’s like, maybe you want to share your journey to diagnosis, tips on balancing illness and home life, pacing, perhaps you are a charity and want a platform to speak on. The possibilities are really endless.

If you think this is something you may be interested in, drop me a message through the facebook page and we can have a chat. The more the merrier!

The Return of Facebook Lives

During National lockdown I was on the Dystonia and Me facebook page twice a day doing facebook lives to check on how everybody was doing both physically and mentally. This meant I could provide links to resources for those who were struggling, and hopefully for those who were feeling isolated it meant that they had something to look forward to.

Now with my health not being at its most stable at the moment twice a day is not something I can commit to, however I feel (and some of you have messaged) that the lives returning would be helpful with so many local lockdowns in place again. With this in mind I’m going to be coming Live on the Facebook page 7.30pm every Monday and Wednesday night. It wont always be awareness spreading, it might just be a friendly chat to see how you are all doing, so join in in the comments. I will schedule these on the page, you’ll be able to set reminders for those who want to join.

I’ll see you all tomorrow night.

Posted in Archive, march 2020, September

Isolation Week 2

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Although I only received my instructions to isolate myself for the next 12 weeks from the government on Monday, we had infact already been in isolation for a week as both myself and my partner Damon bad been symptomatic. Whilst I’m pretty much symptom free now, Dame is still locked away upstairs as he remains unwell. Whilst he would only be considered a mild case, it’s worrying none the less.

We decided early on that we would follow all instructions to the letter as we know how risky a simple cold to me can be. The symptoms I had last week had me reaching for my inhalers constantly. What hit home in particular for me was our two year old son is also on the shielding list due to his medical issues. Luckiky, as much as he desperately wants to go to the park, he’s quiet happy accepting, that there’s a nasty bug outside, so for now he can’t.

It’s hard however to follow the governments instructions when my partners in isolation. For example I’m not really supposed to be particularly near our children and supposed to be three steps away from everyone. Well with Damon isolated I’m the sole parent, and they are now both sleeping in our room. There’s no alternative. But we’ve got to make the best out of a bad situation.

I’m starting to experience more spasms and pain as my Botox wears off. My next lot is supposedly in London at the end of next Month which I’m expecting to be canacled. I’m hoping an alternative can be arranged at a local hospital in the meantime.

I would love to hear how everyone’s isolation is going. So please in the comments on my Facebook page do let me know. I’m aiming to keep this isolation diary updated daily either with blogs here or VLOGS on the Dystonia and Me page.

Stay inside. Stay Safe. Support our NHS.