Posted in Archive, September 2021

Covid-19 has arrived in our household

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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, August 2021

Freedom; Are The Disabled Included?

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We recently were fortunate enough to spend a chunk of time down south visiting my mum. It was a lovely break away from routine, and the kids were over the moon to get to have a ‘extra long sleepover’ with their Granny. If it weren’t for the newly added hand sanitizers that appeared on every corner one could almost forget about the pandemic for a moment.

On our way home we chose to pull in at a service station to let the kids stretch their legs after hitting the que of another incident. The kids dad took them off to the toilets whilst I popped into the shop. I only needed a couple of items, and instantly looked for a basket as one hand is strapped up at the moment due to scaphoid fracture. There were none.

It may sound dramatic to say that I started to feel anxious at this point but it’s true. I can’t hold things in my fractured hand and my other is occupied with my trusty walking stick. In the end I resorted to cradling the items in the crook of my elbow. I dropped them repeatedly. The staff noticed from behind the counter and did nothing other than stare. Other customers, who were incredibly kind, helped me gather up my shopping as I shuffled about, hunted for a basket and confirmed that due to Covid they’d been taken away.

Eventually, feeling really rather embarrassed at my inability to hold a couple of items, I approached the staff at the tills. When I queried the lack of baskets, I was met with a shrug and a murmured grumble about Covid. I asked about how they expected their disabled customers to cope, after all they had watched me struggle and drop my items several times. In reply he simply offered to scan my shopping and bag it for me, let me pay, then he would watch it so I was free to carry on shopping. It was crystal clear that they had not faced with this situation so far.

Numerous charities and research groups have been saying this through out the pandemic; the disabled community are being left behind. Article after article has stated how disabled people have reported feeling overlooked, forgotten, isolated, ignored. Just today there was a piece on how two York Councillors were not allowed to vote on accessible parking in their area as by being disabled they had a prejudice – madness!

Freedom day has come and gone, yet now things have reopened I’ve found that actually I’m running into more restrictions that affect my disability than prepandemic – for example in the same service station they wouldn’t open up the disabled toilets as they didn’t have a designated staff member free to monitor them. They had a member of staff a few feet away though in the ladies directing women into cubicles.

While it may sound like I’m riled up about not very much it’s not something im going to let slide. I don’t by any means think that the staff in the shop should have magically have transfigured a chocolate bar into a basket but they could have offered a bag for me to go around with or to have walked alongside me and helped. Either way I would have been and out in less than half the time if if id just had a little bit of aid. Which is something I’ll put in my letter when I write to them later this week.

Posted in Archive, July 2021

Botox Side Effects – facial drooping

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Botox for me is life changing. Without it I would be hospitalised on an NG tube, unable to talk, swallow, eat, or drink. I’ve ended up in that exact situation previously. It’s unpleasant to say the least. I’m fortunate enough to receive Botox from my neurologist every twelve weeks and then a top up at the six week mark in the cycle from my maxofacial team to keep my jaw going.

I am extremely fortunate to experience very little in the way of side effects. Generally speaking I get ‘botox flu’ for a few days after and a flare in my complex regional pain Syndrome symptoms in my arm. This time though my mouth has been weakened slightly by the Botox. It’s not physically painful in anyway at all, it simply means the corners of my mouth are dropping.

At first I didn’t notice it to much, then I was hyper aware. I found myself wanting to be in pictures as little as possible as I knew I’d fixate on the turned down corners of my mouth despite the focused effort to smile. I was finding myself deleting photos of myself and the kids, myself on days out etc, over something as ridiculous as an altered smile.

It’s not as obvious in both photos above, but the fact I’ve kept these picture is a big step forward. I started to think about the example I was setting my children. It was not a healthy one. I do not want them to grow up thinking that we should scrutinize photos for imperfections. Photos have always been for us a treasure trove of memories, to help remind us of the many memories we have made together. Both my kids love getting our photo albums out to look at and this something I hope long continues.

My altered smile, is not permanent, however it is a reminder that I am one of the lucky ones who receives treatment and responds to it. That is something to celebrate not to fixate on. Whether it stays droopy or returns to normal I’ll keep snapping photos of our days out making memories. After all it wasn’t long ago I thought Dystonia meant the life I have now would be impossible. Forever thankful for Botox injections and medication.

Posted in Archive, July 2021

Acceptable Collaterable Damage for Freedom Day

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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

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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 june, June 2021

First MaxFax Injections in a Year!

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Today I received my first lot of maxfax injections in a year! These are to help control my recurrent jaw dislocations. Normally these are timed so they are six weeks after my last lot of neurology injections to help max the benefits from both. The pandemic put a bit of a pause to that.

It was a new Dr today who treated me, who couldn’t quite believe that despite looking fairly normal, upon exam my jaw was still out of place. So we opted to switch things up. I had the usual jabs along with some new ones. Hopefully we will see some improvement.

I’d forgotten how much Botox flu can wipe me out. So I’ve medicated up and I’m mentally allowing myself to slow down for the next few days to help recover.

Posted in may 2021

An Open Letter to Stagecoach & Arriva Bus

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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.*

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.

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

Ambulant Wheelchair Users

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For those who don’t know me personally when they see me coming along me in power chair they naturally presume that I’m wheelchair bound. It’s always an interesting situation when they see me move my legs so I’m more comfortable, or stand up to get in to the house. Sometimes I need the chair full time due to injury or severity of spasms, other times I need it due to length of time we’re out for and my body cannot handle it.

Whilst I’m confident in using it and appreciate how much freedom it provides. I’m not quiet used to the interactions yet with people with nothing nice to say. There’s been a few occasions of people telling me if I lost weight I wouldn’t need the chair, or to stop being lazy and walk. Presumptuous really considering they have no clue why I’m in it but also hurtful. I’ve always been a sensitive soul and I need to learn to toughen up.

I’m currently using my chair full time due to yet another injury thanks to my EDS. I find it odd how many people still are surprised by ambulant chair users. It’s an area that deffinently needs more discussion and awareness. I’ve used wheelchairs on and off for years due to my many conditions, as my EDS has deteriorated the use has increased. It enables me to still function and go about my day to day life independently, something that is very important to me. I couldn’t be more greatful for my chair.

Using my power chair to get home from church.

Posted in may 2021

Looking forward

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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

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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.