Posted in Archive, COVID-19, January 2022

Covid Round Two

Whenever I get ill with something like a cold/your more normal bugs, or as I prefer to call it muggle sick, my body always protests. Sunday I was feeling off and presumed I was having an ocular migrane, I get them often so didn’t really dwell on it. Alarm bells started going yesterday when I woke up with a temperature, sore throat, ringing ears and eye pain still. The lateral flow was negative so chalked it all up to an awful cold. After all I’d had covid a few months back and I am fully vaccinated.

It was a bad night of neck, jaw and back spasms. Upon opening my eyes this morning all I wanted to do was put pressure on them both. I recognized the pain. I had the same issue for almost six weeks following contracting covid last autumn. Sure enough this mornings lateral flows came back positive straight away. Which explains why my spasms have been playing up. My body is doing its usual protest, a way of saying it’s overwhelmed.

I’m feeling pretty run down but greatful to be vaccinatinated.

Meme depicting the a squishy monster covid monster clinging to a cartoon person whose trying to escape
Posted in Archive, September 2021

Covid-19 has arrived in our household

Toward the end of last week our youngest woke with a fever. She didn’t have a cough, a runny nose or anything that particular screamed that it could be Covid-19, nor were we aware of anyone that we had seen recently who had developed it. So we were not particularly worried. However we arranged for her to have a PCR test as govt guidelines list a temperature as one of the signs to watch for. We didn’t expect a positive result, thinking instead it was far more likely to be a normal cold. After all the kids seem to have colds constantly. Less than 24 hours later at 1am in the morning my phone buzzed to let us know we needed to isolate. She had covid.

We tried our best to keep the anxiety at bay. Both myself and my partner are fully vaccinated, having received our vaccines at the start of the year. Yet after shielding for so long, and reading up on the virus over the past 18 months on the many different issues it can cause, it was hard not to worry. Both my son and I were shielders. Stefan, tested positive two days later. Whilst he has been undeniably feeling rotten and suffered more than Evie, he has luckily coped far better than we expected and is now seeming more like his cheeky self again.

We thought that we may have escaped catching it. Almost a week went by and then Damon tested positive. I was already isolating away from the rest of my household to try and avoid catching it as I had developed sinusitis which my body was already struggling to cope with. At my partners suggestions I was feeling worse rather than improving on my antibiotics I took a lateral flow test. The test result line appeared in less than twenty seconds. So off we went for a PCR again, which soon confirmed what we all ready knew.

This extremely short blog has taken me nine hours to write – ridicules I know. The fatigue I am experiencing is unreal I keep falling asleep while writing it despite being sat up with laptop on me. My body is not happy with a mirad of symptoms between dislocations, nerve pain, fatigue, spasms, no smell and taste, itchiness all over, breathlessness and spams on the left side of face which feels is as if it is determined to detach itself from my skull and be on its’ merry way.

My apologies for not getting round to live on facebook today. I needed to sleep. Hopefully tomorrow if I am feeling up for it I will do but it will depend on how I’m feeling.

Posted in Archive, July 2021

Acceptable Collaterable Damage for Freedom Day

With Freedom Day ear marked for July 19th and the majority of restrictions being casually tossed away one would have thought we were turning a corner where the public as a whole could breath a sigh of a relief. But with herd immunity being discussed again, talks of case numbers reaching 100,000 daily, it has to be asked are we offering up our disabled, our elderly and our unvaccinated under 18s as collateral?! Its worth remembering that six in ten people who have died of covid in the UK were disabled. The disabled community have been hard hit throughout this pandemic and failed by our government.

As a household two of us were classed as clinically extremely vulnerable and had to shield, perhaps it’s unsurprising that I’m not celebrating freedom day. I am double jabbed and have a degree of protection, but my four year old son who also had to shield, whose school seems to constantly have new cases, he has no protection from a vaccine yet the government suggest classes will no longer have to isolate?! Madness!

The term Freedom Day keeps being tossed around but what freedom is there truly when there is also talks of introducing shielding again for the clinically vulnerable this winter. I’ve spent 14 months shielding already. I understand why people are clammering for to get their normality back, yet surly little and gradual is better than throwing fuel on the fire?

We know so little about Covid-19 and indeed long covid. Can our primary school children/younger generation develop long covid? How will this impact in the long term?

Personally for me I’ll still be wearing a mask in crowded areas/public indoor areas, and keeps a distance from other people. I know people will think I’m over reacting however this is what I believe is best for my family and myself and until covid cases etc are much lower or a vaccine is introduced for children I feel it’s necessary.

Posted in Archive, July 2021

Injection Day and referral thoughts

Picture of Rebecca wearing a facemask and holding a takeaway coffee cup sitting in a hospital waiting room waiting for an appointment. Wearing a brown cardigan, black white spotty top, blue disposal facemask,
Waiting to see my neurologist

Today was botox day up in London with my lovely neurologist. He’s happy that the medication we started on a few months back is keeping me far more stable, which is amazing, so we are keeping that in my treatment plan. I’m currently on a medium dose so we have room to play with should we need to come winter when I typically go down hill due to the cold.

I’ve finally gotten the date for my video fleursoscopy which is the middle of next week. I’m a little nervous but it will be good to shed some light on what’s been going on internally and if there is anything specific that we can do/change to tackle it. This is to tackle the chronic aspiration.

Then it’s on to blood tests. Whilst I don’t mind these particularly, my veins are world class players at hide and seek. No matter how much I drink before hand they like to hide or better yet collapse. I often leave blood tests looking somewhat like a pin cushion. These are being done just to double check there’s nothing being missed and causing any issues whilst we wait for Gyny to see me. They were meant to see me almost a year ago. However they keep rearranging and cancelling my appointments, which my lovely GP is chasing. In the meantime I’m left with regular pain flares that leave me doubled up in pain.

I’m hoping now that more people are vaccinated that appointments/refferals may start going back to normal. Specially orthotics is one appointment I’m looking forward to, my knees and wrists need new splints. It’s not an urgent appointment in anyway but it would make day to day life a bit easier and reduce pain a little more.

In the meantime I’m ticking along. I’m looking forward to the schools breaking up and making the most of the summer holidays before my eldest starts primary school full time.

This made me laugh a lot. Credit to Theraspecs
Posted in Archive, COVID-19, february 2021

Covid-19 Vaccine with Chronic Conditions

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.

.

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

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

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

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

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

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.