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, November 2021

Prolapse, Painsomnia & Filters

It’s hard to know to where to start. I’m so tired from the painsomnia and I know that is partially responsible for my level of frustration, emotional upheaval and general anger towards this current situation. Focusing on one hour at a time seems to help.

Being very much limited in my capacity to move much is hitting me hard. Having finally found a medication that helped my Dystonia, then developing this prolapse and adapting to its limits feels like a slap in the face. I cannot empty my bladder fully due to it, which is resulting in bouts of incontinence with no warning, I haven’t been able to go the loo properly since Thursday last week and that’s causing its own pain. I move around with my thighs clamped together terrified of making it worse. There are 36weeks to go before the first consultant appointment.

Acknowledging that this hit my mental health is important. I was already in a bad patch due to ongoing hair loss causing anxiety. This new complication on top knocked me down, hard. I know I’m a fighter and will adjust with time. However it’s important to recognise that what I’m feeling is valid.

Before I sign off I want to touch on one thing; look beyond the filter. In the first photo above the filters has smoothed out most signs of exhaustion, my eyes almost look sparkling and awake. It’s a nice image with little hint of what’s going on. This is an image I would post on my personal profile or my author page; it doesn’t reflect my current issues. The second photo is filter free, the bags under my eye are clear to see and the dark rings obvious. The puffiness in my face from my meds hasn’t been smoothed out. This I would post on my Dystonia and Me page. It is a truthful image.

I never posted either photo (until now). It got me thinking about the need to act ok when I’m not. It’s quite a damaging reality. We see it everyday. Just some food for thought. Personally I’m going to stop using filters, see the reaction to truthful imperfections and struggles. Live my truth. (unless me and my daughter are using it to be bunny’s)

Posted in Archive, November 2021

Learning To Cope With A Prolapse

I woke up the other week with a pain that felt slightly familiar but I couldn’t quite put my finger on it. I lay in bed gently testing my muscles and noting what was spasming or dislocated. After all it’s not unusual for me to wake up with a dislocation here and a spasm there. Satisfied that no major joints were out of place I got up. Then it hit me.

The pain in my vaginal area brought tears to my eyes. I immediately clamped my thighs together. I can only describe it as feeling like my uterus was plummeting out of me. A quick check with a mirror confirmed what my nerves were telling me. Prolapse. Again. This time far worse.

Ive been back and forth to the drs multiple times since that morning. Honestly the difference between seeing a male Dr and female Dr is gobsmacking. When I saw the female practioner I got asked how I’m managing, offered pain relief, and my concerns listened to. When I spoke to the male Dr he dismissed my pain levels telling me that he couldn’t understand it as a prolapse shouldn’t hurt – never mind the fact I also had an Infection in my uterus at the same time. He gaslighted me completely.

I’ve been researching like a madwoman since I started this journey in desperation to make sure I am referred to the right department as quickly as possible. 38 weeks is the current wait time to our hospitals urogynyolgical clinic. 38 weeks. I can’t wrap my head around that figure. Meanwhile I’m sitting here with my prolapse literally outside of my body causing a significant amount of pain.

Ive been pretty upset, a lot of tears have been shed. My mental health has not been great and I’ve not really got my head round this yet. I know that the prolapse will be due to my EDS. I can accept that. What I’m finding hard is the fact I can barely do more than a few minutes movement before needing a long rest due to pain.

Im not sure how long this journey will be but I’ll keep it documented. I’m sure this reads as a ramble but it helps me to get it all written down.

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 may 2021

An Open Letter to Stagecoach & Arriva Bus

Dear Stagecoach & Arriva Bus,

I’m writing you an open letter as one of your disabled service users, and a frequent customer. I’ve had a few issue traveling before but today took the biscuit. Myself and my two young children were using your service to travel home from a hospital appointment. We flagged a Stagecoach bus down first. The driver pulled over, explained that he had already allowed two prams on, one was in the allocated buggy area and the other in the wheelchair space; neither parent wished to fold their pram down or move and off he went. I was more than slightly shocked as this is against your covid-19 policy which is listed on your site. I’ve screenshot it below, along with a picture taken from another of your buses which points out that it is law for a buggy to be moved from the wheelchair space should one need to board. Yet we were left in the rain.*

screenshot taken from stagecoach accessibility facts and question page focusing on wheelchair v prams.
Stagecoach Accessibility FAQS
Sign stating the law that wheelchairs have priority

Arriva Bus, it was one of yours that we flagged down next. This time, there was only one pram on board. Inexplicably the parent and pram had placed themselves in the wheelchair area despite the buggy section being free. When your driver asked them to move so we could board, they refused to move and the driver simply shook his head at me said “Sorry, love.” And drove off. This caused quite the stir at the bus stop, with others asking if this was something that happened often. It is quite disappointing to say that this is not the first time that has. Here is a screenshot from your own website Arriva of your policy for wheelchairs and prams.

Arrivas website instruction of priority of wheelchairs over prams
https://www.arrivabus.co.uk/help/conditions-of-carriageArriva Bus Carriage of Wheelchairs and pushchairs

Considering how much time has passed since Doug Paulley first brought his discrimination case to the supreme court back in 2012 over this matter I really expected this issue to be non-existent/on its way out. However experiencing it twice today within a matter of minutes is beyond a joke. How do you explain it to a four year old that two bus drivers didn’t want to follow the law? “Sorry we are not getting that bus either because the driver didn’t want to point out that it’s actually law for her to move over into the pram space. Despite it being his job.” Its disheartening, upsetting, discriminatory and lazy.

I would ask that both companies refresh your drivers memories on your own policies, and on the law. You may have stuck signs inside the buses but that is pointless if you are not going to act on them!

R. McDowall

*I want to acknowledge the kind stagecoach driver who was coming towards the end of a break and witnessed all of this. After waiting a few minutes and realising it was a while before anymore buses going in our direction would be there, cut his break short and drove over to us to let us on. I couldn’t have been more thankful.

Posted in may 2021

Looking forward

Recently I’ve been on a bit of a rollercoaster of emotions. Hence why I didn’t automatically return to blogging following my son’s operation in March. I wasn’t sure where my head was at and needed to work through it. A handful of events had triggered it and I was up and down more than the seesaw at the park.

I’d had an assessment where I need to provide extreme detail of all my conditions right from the start to now. You can imagine how emotionally exhausting that can be, explaining to someone why you had to give up your dream midwifery degree, relieving the rapid decline in health over the years and what I do to cope. I hadn’t anticipated it to affect me so strongly but it did.

It’s taken awhile but my head’s back where it’s stronger. I think during these covid times where we don’t have our usual coping mechanisms it’s quite easy to feel sucked under. Previously I could have rung up my friends and been at the soft play laughing over a fruit shoot, while the kids ran themselves to sleep. Spirits lifted, dark cloud averted.

Im looking forward now, and focusing on the future. On the post lockdown adventures with my family, with having friends in for a brew and a natter. But also accepting that lockdown has taught me that I don’t need to be on the go and out every day. If my body’s saying no then PJ’s, Disney and baking is it. That’s perfect too.

What are you looking forward to?

Posted in March 2021

Medication Success

As I have mentioned previously following a discussion with my neurologist I tried a couple of different medications to see if we could get a better handle on my spasms. In particular the spasms around my jaw as these cause me significant issues with pain, dislocations, and make it next to impossible some days to relocate my jaw; I’ve had the joy previously of coming round from an operation to have my jaw relocated under GA, only to dislocate when I wake up due to spasms, and have my surgeon coming running over to put it back in and bandage my jaw up. Not a pleasant experience.

Trihexyphenidyl is the medication we have added into my daily regime and it has made a huge difference. Little things like I can brush my teeth now with an adult sized toothbrush rather than a children’s one are possible, and instead of dislocating my jaw by brushing my teeth, my jaw is just in a small spasm and achy. My son commented the other day on the fact that my face isn’t wonky all the time and asked if my Jaw Dr had fixed my jaw. We had a quick chat about mummy’s silly brain and moved on, but for me that showed just how amazing this medicine has been.

I saw my neurologist the other week and he has suggested increasing the dosage further as I am currently not experiencing any side effects. I’m waiting to receive a copy of his letter to my gp explaining that I have the go ahead to do this at my own pace, so we can see just what improvements we can get.

Right now, thanks to lovely female hormones, I’m sitting here feeling quite sore all over as my body goes downhill each month due to the fluctuating hormonal changes. I’ve had several subluxes today in shoulder which have in turn aggravated neck spasms. Normally I’d be quite grumpy about all of this, and yes I’m not exactly thrilled, but having the Dystonia side of things more controlled doesn’t half make coping with the EDS etc, easier. Everything just feels that little bit more manageable right now, and that’s fantastic.

Posted in Archive, february 2021

Cancard UK; Fantastic leap for Chronic Conditions in 2021

What is Cancard UK?

The Cancard UK is a fantastic leap forwards for pain patients and people with qualifying* chronic conditions in the UK. Essentially it is a card issued by Cancard LTD to its membership that provides evidence to the Police that the holder has a qualifying medical condition for which medical cannabis may be prescribed. This card indicates to the the police that the holder is therefore in possession of cannabis for medical reasons and that that they should confident in using discretion when they encounter a Cancard holder providing they are in possession of small quantities.

*You can find a list of qualifying conditions of their site, upon application you be asked to either provide a summary of care or have your GP sign to prove that you meet application criteria.

Why is the Cancard necessary?

Currently there is a short list of qualifying conditions for that entitle you to a private prescription of cannabis in the UK. However these are extremely expensive; An initial appointment* costs around £150, a follow up appointment which is required every couple of month £65, each prescription at least £30 per month. *Pricing examples taken from The Medical Cannabis Clinics.

For most people these prices are just not affordable, especially not long term. However it is known, and more evidence is coming out in support of this, that for certain conditions cannabis can provide significant relief, reduce pain, and help manage symptoms.

Does this make it legal?

No the law has not changed, however all police forces in the UK have been briefed on the the card. It has been co-designed and is backed by senior members of the police force, and guidance has been issued by them stressing that officers should feel confident in using their discretion in cases of possession when the holder is also in possession of a Cancard. It does, however, prove that you are legally entitled to a cannabis prescription which is a huge step forwards.

Cancard UK

If you are interested and want to know more I would highly recommend spending some time on their website and also on their social media. Not only can you apply for the card through the site which is an easy process, but it is also full of great resources such guides to self medication, how to handle being stopped by the police, the different components in cannabis and how each one affects different conditions such as epilepsy, spasms, pain etc. The Cancard UK is a great tool to utilise as well, one of the most recent videos was a tutorial demonstrating how to make it into a oil, which for those who prefer not to smoke is a very handy guide.

Next Steps

Currently the card does not cover growing your own plant at home, and pharmacies are still not selling to card holders. However, they are working on expanding so that growing is covered and therefore reduces the risks taken by the user.

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.