Disability

10 things affecting my wellbeing right now!

I’m back with an update that explains what has been affecting my wellbeing since July 2021 and contributing to my online absence.

Mental wellbeing

My mental wellbeing has suffered a lot since I last posted. I’ve had a lot of ups and downs mostly due to the stress of having to recruit Personal Assistants and contemplating moving out of my parent’s house for what will be the 3rd time. My wellbeing improved when I received my budget but the stress of moving creates its own anxieties and challenges.

I’m receiving help from my local mental health centre and attend sessions once a week. I also signed up for an online mental health platform called SpokzPeople. I wanted to write a post for mental health awareness day but was too overwhelmed to post anything. Mental health is important and not just one day a year. Wellbeing is becoming more prominently talked about since the Ukraine crisis. While that situation is terrible, poor mental health can be triggered and improved by small events too. Talk to someone if you are feeling low or struggling no matter what the reason.

Physical wellbeing

At the start of the first lockdown in 2020, I had so many plans for the upkeep of my wellbeing, so many tours and shows to watch online and accessible fitness classes for disabled people were being launched. Then I caught COVID-19 and it all went to hell.

One of the main things I realised after venturing outside again was how weak I was. It wasn’t all to do with being ill. I’d spent the best part of a year in a home where everything was adapted to my needs. This meant I wasn’t struggling to transfer. This was great at the time and a boast to my mental and physical health that most of my pain disappeared but without the daily struggle my body got lazy and I’m still not back to how I was.

In August 2020, I applied for and was given some resistance bands. The scheme run by Wheelpower is now open again. If successful they will post the bands to your home and their website has lots of videos with classes and ideas of how to use them.

Resistance-bands

I have now signed up for both the yoga and exercise classes starting next week. I’m hoping to get myself in shape. Wish me luck.

Dancing with Motionhouse

As I type this it’s our first performance this evening of Wondrous Stories on Thursday 17th March. If you’re in or near Birmingham we are performing in Centenary Square till Sunday 20th March as part of the Birmingham 2022 Festival. Our 8.30 pm performance is being live-streamed on Friday 18th for those who cannot make it in person. Dance and more importantly my teammates in Freewheelin’ Dance have an enormous, positive impact on my wellbeing.

Watch the Wondrous Stories from Friday 18th here: https://www.youtube.com/watch?v=SGTukQOMTkI

Wheelchairs and Wellbeing

Without my wheelchair, my wellbeing would suffer. My wheelchair is my legs and my independence, which is why I’m still searching for a suitable backup chair for when my Powerchair goes wrong. More on this when I have more time, with pictures I promise.

Recruiting PA’s for future wellbeing

Ever since I received my care package in June 2021. I’ve been trying to recruit people to assist me. I’m now having some success but writing and posting ads, conducting video interviews with the help of an advocate and then meeting people face to face has taken over my life. I’m hopeful I now have a good team and will write about my recruitment process in a future post.

Contingencies for my wellbeing

Contingencies, plans for what happens if my PAs are off work, are doing my head in at the moment. I’ve been looking at agency cover but the average cost of an agency in my area is £23 per hour and my council pays just under £16 agency rate. Next month my team will be on minimum wage pay as the council rate for Direct Payments hasn’t gone up for a least ten years. I know there are many people asking for a pay rate increase on the Direct Payment scheme across many different councils.

Journalism

I’m still studying for my certificate in journalism under the ADJ but due to the above, I haven’t managed to progress much. I’m really enjoying the course so far and thankful that the tutors and organisers are understanding when life gets in the way. I hope to complete this qualification before Christmas. Excuse me for mentioning that holiday before November!

Assistance Dog

I’ve always loved dogs. They make me smile from ear to ear! It’s always been a goal of mine to have a four-legged PA and thanks to Canine Partners it’ll happen. Canine Partners train assistance dogs for disabled people. The main tasks for me will be opening/closing doors, picking up anything I drop and assisting me with my coat. I’m hopeful this will mean I can leave the house independently. This will help my wellbeing massively both mentally and physically if I can do things on my own without asking for human help. If only dogs had opposable thumbs… 😂

Volunteering with Disability Horizons

I’m still part of the amazingly supportive Disability Horizons, I’ve just been doing less, mainly due to the time and energy recruitment was taking. I have several stories to edit and a few reviews planned so I hope you’ll keep your eyes peeled. Working with like-minded people gives me a boost and lessens the feeling that I’m struggling alone.

Disability Horizons

Collective voices create change and better wellbeing for all.

Lastly, I’m a member of several survey and disability groups that ask my opinion on different things. Disability Horizons has just started asking people to sign up to assist with market research. Another well-known company is Open Inclusion. There is also The Diversity Standards Collective which pays £10 per survey they send you. I’m not being paid to mention these and they may be others. These are just the companies I am part of and I find it interesting to share my views and hear of others’ experiences as well. The more disabled people provide feedback about products and services the more inclusive the world will be.

Trabasack-Mini

Mini and Mini Connect Trabasack Review

As promised, here is my review of the Trabasack Mini and the Trabasack Mini Connect products. These two have been sent free for me to review. As a long time user of Trabasack Products, I will give my honest opinions of these products.

How are these products different to the Trabasack Curve?

In my Trabasack Curve review, I focused on the differences between the wipe clean, leather-look version of the Curve and briefly explained why I chose the non-Connect, velcro version. The main difference between the Mini and the Curve products is shape and size. Whether you choose the Connect version of either product or not the Mini is square and slightly smaller than the Curve.

The beanbag inside both Mini Models of the Trabasack is also square and unlike the Curve, it is a tight squeeze to fit more than one beanbag inside a Trabasack Mini. Having said that I haven’t noticed any instability that has made me think of adding an extra beanbag. It is only because I owned the Curve first that the option occurred to me. The smaller size means that the bag fits nicely on my lap and the beanbag covers more space. This makes both Mini products very sturdy and comfortable to use.

Trabasack Mini Beanbag

What’s included?

Both Mini versions come with an instruction booklet, two straps, one short, one long. Both have six D-rings each and both come with two ring pull zips. The only difference between them is the tray surface.

Benefits of Mini Connect velcro

The main benefit of the Mini Connect version is that velcro sticks to it. This means that objects stay secure on the tray. Having items stay put can be useful for anybody but particularly for disabled people. The mini Connect can help ensure that items stay within easy reach.

TV Remote held by MediaMount

Trabasack MediaMount

If you are able to view the image above you will see that my TV remote has something wrapped around it. This long accessory, sold by Trabasack is called a MediaMount. The MediaMount is basically a long strip of soft material with velcro all along the underside with two loops at the end to assist people with limited dexterity to grip it. The design means that it sticks to itself and to the Mini connect. This means it can hold items securely and at virtually any angle you want.

Mini Connect Cup held with MediaMount

Mini Connect and iPad

In my previous review of the Trabasack Curve, I mentioned how I had damaged an iPad case by putting too much velcro on it when placing my iPad onto my Trabasack. This time I was more careful…

iPad with Velcro
As you can see you don’t need a lot of velcro 🙂

This small amount of velcro will keep my iPad secure on my lap but enable me to take it off easily when I want to. Trabasack also sell hook tape so if you need some extra velcro they have you covered. You get two strips in a pack and cut them to any size you need.

iPad stuck to Mini Connect
This photo shows my iPad on the Mini Connect which is attached to my waist.

This position is very comfortable for watching videos or reading emails.

Trabasack Mini

The main selling point of the Mini version vs Mini Connect is that the surface is wipe-clean. Which one you choose will depend on whether you want to use velcro with your Trabasack or not. Having said that the MediaMount does work with the non-Connect version of the Trabasack Mini. The accessory will still hold things in place it just won’t stick items to the tray surface.

The photo on the left shows the MediaMount wrapped around a cup that is resting on the Trabasack Mini. The photo on the right shows the MediaMount curled around itself with a hole in the middle. This is an excellent position for my iPhone and props it upright. This makes it great for video calling. Unfortunately, I couldn’t show this as I needed my phone to take the photos. The pitfalls of having a device that does everything!

Reading

Another thing I use the Trabasack for is reading. I have to say I prefer the Mini version of the product for this over the Curve as its smaller size and square shape is more comfortable for books.

Book resting on Mini Connect

The Mini ensures that I don’t feel the heavy weight of even this big book on my legs! I do slightly prefer the Mini Connect over the Mini in this instance as I can stick the MediaMount onto the Connect Surface to prop the book up at a more comfortable reading angle. I haven’t yet resorted to putting velcro on my books! Thankfully Trabasack products are so stable that I don’t have to.

Conclusion

Both of the Trabasack Mini versions are great. As I use all the products more and more I’m tending to use the Curve as a meal tray and for laptop use and the Mini for everything else. I have got really attached to the Mini Connect with the MediaMount. The main reason I always brought the Trabasack Curve, was because of the bigger lip around the edge. Now with the MediaMount, I have the smaller form factor and a bigger edge all the way around.

Mini Connect on my lap with the MediaMount around the edge

Despite its smaller size, it will still comfortably fit my 13inch Macbook Pro inside it.

I think Trabasack says Laptops up to 14 inches for the Curve and Mini Models and up to 17 inches for the Trabasack Max. Whichever model you choose you won’t be disappointed.

Get in touch if you’d like to ask me any questions regarding these or any other products I use. Keep a lookout for my upcoming blog post that I wrote for Access Rating regarding Freedom Day. I also have some useful and innovative products that I will be reviewing for the Disability Horizons shop so keep your eyes peeled!

Trabasack Curve with Instructions

Trabasack Curve Review

I have been given a Trabasack Curve to review. Whilst this product was sent to me free I have been using these products for many years and have brought several. This review contains my honest opinions and experiences of the product.

What is a Trabasack?

A Trabasack is a bag and a lap tray all in one. It is a versatile product that has many uses. My main use is as a removable tray but it can also be used as a bag and for storage.

The Trabasack was invented by Clare as a lap tray for her son Joe who uses a wheelchair. The tray had to be safe and practical to use. There are now three main models of the Trabasack. The Max, Mini and Curve. The Mini and Curve Trabasack models come with or without a ‘connect’ surface. The Connect models are made with soft velcro material on the tray portion of the Trabasack Curve. This is useful if you want to velcro items so that they stay put on the tray. For this review, I was given the option to receive a Curve model with or without this feature.

Curve Connect or Curve?

I chose the Curve model without the Connect feature for the purpose of this review. I’ve learnt from experience that the ability to wipe the product clean is important to me, not because I’m particularly messy but because I have a dog! As my main use for this product is to eat and drink and having owned a Curve Connect for seven years prior to receiving this review unit. I know that dog hair and crumbs in particular stick to this tray like glue! Connect is a lovely feature that is doing what it is designed to do but it is not particularly hygienic for food if you have a pet that moults!

The Connect versions are great for anything and everything you want to stay in place which I will be reviewing next week.

Trabasack Curve with Instructions

Using the Trabasack Curve

The Curve comes with an instruction leaflet and two straps, one short one long. Which strap/s you use depends on how you want to use the product. As I’m always in my wheelchair I prefer to use one strap around my waist. This keeps the curve as close to me as possible and is the most stable. Due to my disability, I cannot reach around my back so if I’m by myself I connect the two straps together and wrap them around my armrests at the front. This position isn’t as good but at least I can secure it independently. The Trabasack can also be worn like a standard rucksack and slung over one shoulder. It may have been created for disabled people but it makes a really great laptop or tablet bag whether you have a disability or not.

Curve on Lap

D-Rings and ring pull zips

The Trabasack has six D-Rings to which the straps attach. These are strong and sturdy as well as being easy and simple to use. Instead of fiddling about opening the hook and then struggling to attach it to the ring, simply press the hook end of a strap against a D-Ring. The hook will be pushed open and snap onto the D-Ring.

Curve strap hook and D-Ring

The zip runs all the way around the product and the zips are fitted with ring pulls so that the zips are easier to use. Instead of having to grip a tiny object, simply place a finger or thumb in the ring and move your hand to the side to open or close the zip. I keep the zips together as I like the way it looks and I have no trouble gripping them but if you want to make it easier to open and close always have one zip at the front of the curve. That way you only have to pull one zip instead of two to open or close the bag.

Trabasack Ring Pull Zips

Trabasack Curve Tray

The tray portion of the product is not only wipe-clean but also non slip. If, like me, you want the wipe-clean Curve the company does sell a non-slip mat, cut to the same shape as the Curve. This can be very useful and can be kept inside the Curve when it is not needed. I have used one before and keep it handy but for day to day, I find the original non-slip surface good enough for my needs.

The tray portion also has quite a high lip/edge on it to stop items from sliding off. I have to say this is why I brought a Trabasack Curve in the first place. I saw a photo of somebody in a wheelchair, using a Trabasack Curve to carry a plate that contained an English breakfast. This may not sound impressive but the plate included baked beans, the person’s lap wasn’t level and the plate and more importantly ALL the food was on the tray!

english-breakfast

Curve Tray Bean Bag

The reason the breakfast didn’t end up on the floor wasn’t just due to the built-in edge around the tray and the straps. The Curve also has a removable bean bag inside it to help keep it level. If you spend a few seconds setting it up on your lap then it really is very stable. I have leg spasms so this isn’t just empty praise. Before I came across the Trabasack Curve I couldn’t use a tray at all as food simply slid off my lap!

Curve Beanbag

Eating with the Trabasack Curve

Eating outside and using unsuitable tables when out is possible with a Trabasack Curve. Unless I have a lunch box I do prefer to rest the front edge of my Trabasack on a table as then I don’t have to bend to my lap to eat, (my knees make it very low!) Prior to having a Curve when eating out, I had to lean forward as my wheelchair wouldn’t fit underneath restaurant tables. In fact, when we went out for a family meal two weeks ago I forgot that my Curve had been taken off the back of my wheelchair. I then had no choice but to lean forward. Doable but a lot less comfortable.

Dinner Plate on Trabasack

Trabasack Curve and iPad

Weather permitting, I like to sit outside and write, watch films etc so I love my iPad. I love my iPad on my Trabasack Curve even more as I’m not restricted to sitting where tables are.

Another big plus is when I have finished using my iPad I can place my iPad inside my Curve. It is nice and safe on my lap. I am now hands-free and don’t have to worry about people possibly stealing my property from my wheelchair. With my original Curve Connect, I put velcro on my iPad case and stuck my iPad to the tray, giving me even more peace of mind. I actually ruined an iPad case doing this. Trust me when I tell you a little goes a long way! I put plenty of velcro on the case and it worked too well! I had to remove the iPad from the case to get it off my Trabasack!

Storing items inside Trabasack Curve

I wish this bag had been around when I was at school. A laptop up to 14” can fit inside the Trabasack. It wouldn’t have replaced my school bag, too many books but I could’ve kept my personal belongings on my lap. This is what I do now. I find my laptop too heavy on my legs to use with the Curve but many people do. The Trabasack Curve is a fantastic bag for electronics whether you have a disability or not. The padded inside ensures devices are protected.

Price and conclusion

The Trabasack Curve costs £39.95. The Connect version is slightly more, £44.95. I thought this was expensive for a tray and expensive for a bag. I brought my first one telling myself I was ridiculous for spending so much money. This review Curve is my 5th Trabasack. This isn’t because they are not long-lasting. My oldest one has just broken after seven years. The thread holding one of the D-Rings together has broken and years of using it outside mean it’s sun-bleached. It is still perfectly usable. I wanted to have more so I could keep one in the car and on the back of my wheelchair.

If you struggle to eat at standard tables or without a tray. Perhaps you need a flat surface to lean on to read. Maybe, like me, you want a portable table for your electronics. You won’t be disappointed.

If you have or know a child that needs toys etc within easy reach this will facilitate that. A big plus for me is that it’s also more portable and aesthetically pleasing than the trays that Wheelchair Services provide to their clients.

Look out for my review of the Trabasack Mini Connect where I will be adding Velcro to my iPad case, just in a much smaller amount than before!

A period of adjustments

A lot has happened since I last posted. I stayed in, got somewhat comfortable on zoom and start to accept the way things are. Then the world starts to open up again. I’m not complaining far from it! A lot of little and not so little adjustments are needed to get used to going out again. The whole world is in the same boat. This post is all about the changes that are happening and the adjustments I’m making to get used to my new normal.

Adjusting to wearing a mask

Unless you’re exempt for medical reasons we’ve all had to get used to wearing masks. It’s only now that I’m actually leaving the house that I’m using one. As I also wear glasses. This is extra tricky as the steam meant I could barely see where I was going and sometimes had to remove my glasses for safety. Not very practical as my glasses are as necessary as a mask and thankfully a lot more comfortable!

I received a tip from one of the carers belonging to the agency that assists me. Cross the straps that go behind your ears. This was said very matter of factly. The person assisting me to shower was wearing a mask, gloves and apron in a steamed-up bathroom but her glasses were clear! Having tried various methods suggested by the internet, the next time I ventured out I tried it and to my surprise, it actually works!

Do you like my fashionable life jacket?

Reintroducing myself to eating out

My first meal outside my house since February 2020 happened on the 19th of May 2021. As eating out was an activity my friends and I did at least once a month, it was weird to feel so nervous and not know what to expect, especially as I booked a place we used to visit all the time.

Armed with masks and sensitiser we all turned up. I was twenty minutes late as I realised ten minutes after leaving home that I’d left my handbag behind! Prior to this, the only outings I’d been on were walks to the park or around the block. I hadn’t picked up my handbag in over a year! Madness in itself! Successfully checked into the pub via the track and trace app I cautiously removed my mask. It felt lovely and strange to sit close to people who weren’t my immediate family. I felt like I hadn’t seen my friends in years and also as if I saw them last week and COVID-19 was just a bad dream. Regardless, it felt amazing to catch up!

Menu adjustment perk

Restaurants, pubs cafes etc now have their menus accessible via apps on smartphones. This is so that staff and customers can have less contact and to discourage people from moving around. The pub we were at was offering table service as well but they also had an app which could be used to place your order. I hope this survives after the COVID-19 precautions. It was nice to be able to see what options were available to me rather than having to ask other people. It’s very convenient to be able to place your own order yourself and would be more inclusive for people with hearing and speech difficulties too.

Pub-app

Anxiety adjustment

I don’t know whether I’ve mentioned on this blog that I suffer with anxiety. I’ve mentioned how weird but nice it felt to be out. Last year I felt anxious to be stuck in. It’s like my brain has been reprogrammed. As horrible as COVID-19 has been, the lockdown was freeing in a way because I wasn’t worried about getting anywhere or whether a certain place was accessible. Everywhere was shut and suddenly courses/tours and entertainment were online! Living with my family, surrounded by my belongings and my bedroom and bathroom adapted to my needs I no longer had to physically struggle.

Now that I’ve started going out again my old worries are coming back. The flip side to this is that seeing people and being proactive is healing the parts of me that really struggled being in lockdown. I’m a people person, even with anxiety. No situation is without its positives and negatives. I try to be as positive as possible and to organise myself so that my reasons for anxiety are as minimal as possible. Are you feeling anxious about entering the world or even just your street again? I know plenty of people are, even google thinks so…

How do you feel about adjusting to the outside world?

Adapting to study again

At the end of April 2021, I was accepted onto the Academy For Disabled Journalists course. This course started last year and is run by Ability Today. I would have never been able to do this course if it wasn’t for the pandemic as Ability Today is based in London. Moving the course online, the organisers have decided that it will continue to be delivered this way after restrictions have lifted. Another example of keeping things as inclusive as possible. I hope places that have offered online resources continue to do so. I have loved being able to go on virtual tours and experiences. While I miss face-to face-interactions, studying online is also easier in lots of ways. I’m really enjoying the course and I have a press pass. Look out world, (when restrictions are over, obviously!) At the end of the ADJ, I receive a Certificate in Foundation Journalism.

Press Photo

I’m going to be learning skills and knowledge to get me closer to my dream of being a travel writer. Although I’m really looking forward to the video unit. If you suddenly notice a change in my content then this course is probably why. Writing is still my go-to though I don’t think that will ever change.

Since I started writing this post I’ve received confirmation that I have my care package fully funded! I’ll write more details about it later on but it didn’t seem right not to mention it as I’ve used this blog as my catharsis surrounding my care struggles. The only way is up says Yazz and I happen to agree. Until next time.

The Vaccination Process | Booking, Safety and First-hand experience

I’m back with a guide to the vaccination process! Thank you all for being so patient. Please check out the rest of my posts. The content is the same but hopefully, they are now easier to read and more useful information is provided. I have now added alt text and descriptions of images and videos properly. I apologise to my visually impaired readers for not doing this before. Please contact me if any part of this blog is inaccessible to you, whatever your need or disability.

I received my vaccination on 20/02/2021. While a big part of me is sick of talking about COVID-19 I hope it will help tackle any uncertainty or fear surrounding obtaining your vaccination. It is subjective, as was my post on my experience of the virus, so the opinions expressed are entirely my own and should not replace medical advice.

Booking your vaccination

Many people with disabilities have already had the vaccine as many of us are either in the extremely vulnerable category or category six. I’m category six as I have an underlying disability but have no health issues from that. In England the NHS booking service now says you can book if:

  • you are aged 50 or over
  • are at high risk from coronavirus (clinically extremely vulnerable)
  • work as an eligible frontline health or social care worker
  • your condition means you are clinically vulnerable
  • you have a learning disability
  • someone you care for is at high risk from coronavirus

Physical disabilities aren’t mentioned but don’t let this put you off. Clicking the booking service link above will take you to the NHS website, where you will be asked to enter your date of birth and your hospital number. The system then determines whether or not you are eligible. If you are eligible to book your vaccination you will be taken to a page where you can select a place, date and time to receive it. If you don’t know your hospital number, you will be asked to provide your basic information in order to continue.

Vaccine booking screen requesting hospital number

When trying to book my vaccine in this way the system told me I wasn’t eligible. So it’s worth trying as you won’t be booked in unless you meet the criteria. You’ve nothing to lose!Several people I know and people I don’t have got appointments this way before official invitations arrived. I also contacted my GP as I have to recruit carers/PA’s and felt at risk with the prospect of having an increased number of people in the house, without the protection of immunisation. Understanding my situation, my GP agreed I should be moved up the list but I still had a six-week wait. It is always worth asking!

Safely attending your vaccination appointment

Unless you are exempt from wearing one for medical reasons you must wear a mask when attending your appointment. It is understandable that you may feel nervous going out, especially if you’ve been shielding and this is your first outing in some time. Allow your self plenty of time to get to your appointment, the last thing you want to do is rush.

Think about how you will get to your appointment. Although bus services are still running many people, myself included, find them inaccessible. I’m lucky as my GP surgery is only a fifteen-minute walk/wheel from my house. The taxi firm,Uber, is offering a £15 discount on trips to or from major vaccination centres around the UK and their drivers follow COVID-19 safety measures. In some cities, they offer wheelchair accessible vehicles. Carry out a local internet search for transport services in your area which also may be able to help.

Getting vaccinated

On the morning of my vaccine appointment, I got up and dressed in loose clothing. The needle is inserted into the upper arm muscle of whichever arm you choose. Wearing a jumper with sleeves that would roll up high enough saved me from getting undressed at the doctor’s.

My Mom accompanied me as I need someone with me when needles are involved. This is because my startle reflex could cause my arm to move when the vaccine was being administered. Cerebral Palsy startle reflex means that I jump at loud noises or sudden sensations. Someone holding my arm still is just for safety.

Arriving for my vaccination

We planned on walking but as it was raining heavily my Dad took us in the car. I’m very lucky to have them available to assist me. When we got to the practice there was a big queue as someone had been taken ill earlier that day so COVID-19 vaccine patients were backed up. This prolonged the appointment to one hour and 40 minutes! I was hoping to be in/out within half an hour!

Having joined the queue outside Mom helped me put my mask on and we slowly inched towards the front. When we made it inside the tent staff were using to check people’s details I was told that as I’m a wheelchair user I could’ve gone straight inside and stayed warm. I am affected if I get too cold but only in that it can take a long time for me to get warm again. If you have difficulty queuing for whatever reason it’s worth asking if there are any adjustments that can be made for you.

I handed in the form with my details on and we were shown into the surgery and into one of the consulting rooms. The form asked for my name, address, date of birth and questions about how I’d been feeling the last ten days.

Receiving the vaccine

Once inside the consultation room, I was informed that I was going to receive the AstraZeneca variant. I was a bit disappointed. I’d hoped to receive the Pfizer vaccine instead as I’d heard it was more effective and had fewer side effects. There is no proof of this. Some days later a friend told me they had heard the Pfizer was the worst for side effects, guess things affect people differently.

I was asked which arm I wanted the vaccine in and I chose my left as I drive my chair with my right hand. The needle was in/out before I knew it and it didn’t feel any worse than a scratch. The nurse then told me that I may have flu-like symptoms and a sore arm which should last no more than a week. I was then told I could leave straight away and I didn’t have to wait for fifteen minutes. I’m not sure why but I was asked if I drove, (I don’t,) so maybe that is why I didn’t have to wait. We were in the room for approximately six minutes.

Vaccination card

I haven’t been given my second date yet. My GP practice will send me a link to book my appointment sometime in the middle of May.

Side effects

I had my vaccine at 11.10 am and didn’t start feeling ill till about 8 pm that evening. I then experienced a minor version of the joint pain I had when ill with the virus, together with shivering for a couple of days. The worst thing was the injection site became swollen and sore for roughly five days. I was thinking about ringing my doctor when suddenly the swelling went down.

Conclusion

Even though I was uncomfortable these side effects were nothing compared to being ill with COVID-19. Many people experience far fewer symptoms than me. I would encourage anyone and everyone to get vaccinated. The symptoms far outweigh the benefits both to myself and to society. My only caution. Check with your doctor if you have any allergies, are pregnant, breastfeeding or have a compromised immune system. These circumstances may affect when you can be vaccinated and which variant you are given as there are different ingredients in each.

I hope this post is reassuring. If you would like to ask me anything about the above, please do. My next post will be a review of the recent Naidex virtual event.

Screenshot zoom Dance

International Inclusion Day For People with Disabilities

Yesterday was International Inclusion Day For People with Disabilities. I hope everyone has had a great day. Apart from more disability-related posts on social media today has been the same as many others for me. Awareness of the need for inclusion and its benefits is growing. This is a good thing for breaking down barriers that disabled people experience. Barriers still exist.

Inclusive Dance World Vision Festival

On Tuesday, 1st December 2020, my dance group were part of an inclusive dance festival in Moscow. Britain, along with many other countries celebrated the inclusivity of dance. The festival showed how everyone can be included and have fun. The Inclusive Dance World Vision festival apparently happens every year with amazing dancers travelling to Moscow to compete. Due to Covid-19, videos were submitted this year and the whole event was live-streamed on the day.

Inclusion in dance

I did plan on posting our competition entry but that will be revealed at our Freewheelin’ Christmas show on December 18th. Instead here is our first competition dance from a couple of years ago.

Inclusion for everyone

The disabled community continues to advise and raise awareness so access and acceptance will continue to increase. Everyone should be included no matter what their disability, race or religion. The barriers I face as a disabled person are mostly caused by society. Days like the International Day For People With Disabilities, Purple Tuesday and the Inclusive Dance World Vision festival show that attitudes towards disability are changing. Change is happening, this is proven in the thought that now goes into designing buildings so that they are inclusive.

Interview with Sam from PHB Hunters

Sam-Stickland

About Sam

Sam resides in North Wales and lives with a disability called Limb Girdle 2e Muscular Dystrophy which is a progressive condition, meaning her needs have increased/grown more complex over time. Sam is now forty and has been employing her own PA’s since she was twenty.

To begin with, she did this with the help of The Independent Living Fund, a benefit that unfortunately no longer exists. When the Independent Living Fund was scraped her local authority funded her entire care package, continuing to provide funds through her Direct Payment.

Agency workers

This worked well until Sam’s Social Worker persuaded her to use an agency to carry out her care rather than employ PA’s herself. At this point, her Social Worker applied for her to have half of her 24-hour care package funded by CHC. Sam agreed due to pressure, lack of support and her continued struggle to have a working contingency plan in place should any of her PA’s be unable to work. However, as soon as this decision was made Sam lost all autonomy and had very little or no say in how she lived her life.

Back with the Direct Payments Scheme

After a lot of battling with her local authority, Sam now employs PA’s once again through a Direct Payment, enabling her to live her life the way she wants to. She has this option as she is jointly funded by BOTH the local authority and CHC. This option is not available to those like Rhys who’s care isn’t jointly funded.

Sam campaigns with Rhys to try and ensure that all citizens in Wales, not least Rhys himself has the same freedom that she enjoys regardless of how they are funded. Below are the questions I sent to Sam after I saw their campaign on the BBC website and later on Facebook, Welsh PHB Hunters (Every human being has the right to be free.) The questions were sent before I knew she had won the right to have her Direct Payment again, which just goes to show you should always fight for your rights.

1. How long have you had your current care package?

I’d say from March, as I’ve been able to hire my own PAs since then, through a jointly funded package. However, I now believe I had a jointly funded package for almost 3 years, but I was falsely told by social services that it was CHC funded and therefore I was unable to use direct payments to employ my own staff. I now distrust my social worker and the people who are supposedly there to help us.

2. Are the agencies that are assisting you currently person-centred in your opinion? I.e. do they listen to you?

I no longer use a care agency, but can say that when I did they all said they were person-centred, but that only went so far, my views and opinions weren’t listened to when it really mattered, and they were just a business trying to fill their contract requirements any way they could.

3. Do you have any say in how your care calls are structured?

Yes, I have complete control now. I do the rotas, ok holiday, and I am in charge of all employment matters. Although I am checked in on a lot by nurses and social worker, (pre covid.)

4. What reason have you been given for the discrepancy between the assessment carried out by Social Services and the one by NHS? Needs are needs surely?

This is a Rhys question but from my perspective. My social care team really wanted the monies to come from health to save them money, they did not support me at all, and it was the health side that agreed my needs weren’t nursing as the social care team were trying to suggest.

5. How did you meet Rhys?

I was talking with Rhys and we can’t remember exactly how we found each other! It was through our fight for care and somehow we started chatting over Facebook. Since then we have spoken every day and started a long-distance romance!

6. In August, you wrote a letter to the Welsh government. Why now?

I think we both wrote letters prior to this, mine began in February, but at that time I was unaware of Rhys’ campaign. Once I connected with Rhys, I upped the ante and began to fight for PHBs as well as for the framework on legislature changes for joint funding to be made clearer. We have since written to charities, disabled organisations, magazines, MP’s and AM’s. Basically, anyone who will listen and support us.

7. Why do you think the push to use agencies is so high, are they more cost-effective? In England, agencies are more expensive than hiring your own PA’s/carers.

They generally are not cost-effective, but I believe that the social care team see them as an easy solution to them, less paperwork and less face to face work. They leave any issues to be dealt with by the agency involved, which leads to more problems for us. CHC funded care must currently use agencies in wales, hence the fight for PHBs, I believe this is to pass over any accountability to the agency instead of the NHS, and due to the work needed to change the current framework. It isn’t about what is best for us.

8. I read on your Facebook page that Direct Payments are unlawful when using CHC do you know why? Has anybody explained this?

It’s just not allowed because of the current CHC legislation. If you are jointly funded it is lawful, but it is not well known, as I found out during my fight. It needs to be clearer for users and the organisations involved.

9. How is a second lockdown affecting you?

The lockdown is hard, I miss seeing my family and my niece who’s grown so much since this all began. It obviously makes a long-distance relationship harder as we can’t travel as much. I had plans to travel this year! 😂 I worry about covid obviously but my PAs are all taking precautions to safeguard me and I appreciate that immensely. 2020 has been a hard year for everyone.

10. What does a typical day look like to you?

This is probably more Rhys, as I have a PA 24/7. I can get up at a time of my choosing; toilet, eat etc when I want. My only constraint is being in bed by midnight, as I have a sleeping night and PAs have to have 8 hrs sleep. Breaks for PAs are quite flexible depending on our plans for the day.

11. What do you do to relax?

Photoshop, and artwork. I can spend hours doing this on my computer, as it clears my mind. I love a bit of Netflix, music and days out with family or friends (pre covid). I try to study something new as often as I can, but Rhys’ campaign has kept me busy since August, so I’m only doing short courses at the moment.

12. Have you been given a reason why individual cases can’t be heard but group cases can?

I think this is just policy for the heads of departments, such as Vaughan Gething and Julie Morgan. We are encouraged to contact our local ministers.

13. Can you explain a bit more about Independent User Trusts? Why are they not suitable for your needs?

We have had difficulties with this ourselves so I’m just going to use what we currently have.

The Welsh government are proposing Independent Users Trusts (IUTs). An Independent User Trust is described ‘as a commitment on the part of trustees to manage an agreed sum of NHS money (or other resources) in a way that puts the individual at the heart of decision-making and gives them choice and control in their life’. Confused? I know I am? I ask is this clear? Because we have struggled to get a clearer definition so bear with us a little.

IUTs are in fact one of the ‘methods’ that an individual can now use to manage a personal health budget when a direct payment is not possible, AS IN WALES Right? But we are not being given the option of utilising the other methods, just an IUT.

So it’s our understanding:

• You have a team of 6 trustees almost like a syndicate.

• You get to choose who those 6 people are “how generous”.

• You speak to them, and they then speak to the NHS.

• They make a decision for you over how your care is provided, “bearing in mind it’s your care”.

• And they control the purse. “So we never, in fact, see the money ourselves.”

So, they are making us answer to a group of individuals, which granted, we can choose, but they decide and then purchase that care for us!

Is this not completely obscuring the idea of independence?

We are accountable adults, who have self-control over our own life’s, and finances! So why are they suggesting we are incapable of taking care of our care finances? The notion is completely condescending! The only thing that makes us different from everyone else, is a physical disability?

In our eyes, this means that IUTs fail to put individuals at the heart of the decision-making process, and instead take away our choice and our control over our care. Which surely we deserve? It merely mimics the same system currently in place, just given a new name… In line with the Social Model of Disability, the Welsh Government says it is committed to disabled people fulfilling their potential and achieving their ambitions and dreams, by removing barriers that get in the way of such ambitions. The Welsh governments current IUT plans are building these barriers up, rather than demolishing them, are they not?

We truly can’t understand how our own Welsh government thought it was okay, to put people who needed 24-hour care in a situation, where they don’t have any choice in who provides their care for them.

My thanks to Sam for answering my questions.

Having had several written conversations over social media with her, I have to say I completely agree that the proposed solution, Independent Users Trust’s, (IUT’s) does not give disabled people the freedom and autonomy that they are requesting. I can’t understand why a Direct Payment is available in one instance and not another! Judging from the campaign, I’m not the only one.

If you want to find out more visit the Welsh PHB Hunters Facebook page. They welcome any support, wherever you live and are currently looking for people who have experienced agency care to participate in an article they are writing. If you’re interested send them a message here.

My Suspected Coronavirus Experience

This took longer to write than I thought it would. The idea was proposed to me by Disability Horizons magazine, I hope people find it interesting. It was pointed out to me when I submitted this to the magazine that I never actually received a positive diagnosis of Coronavirus I believe that is what it was but because testing was not widely available then, I’ll never know for sure.

Contracting Coronavirus

I live with my parents and brother. Back in April, I believe we all caught Covid-19, but our experiences of being ill were different.

Thankfully, none of us had it seriously enough to need hospital attention, but the road to recovery has been slow, particularly for me.

I’m disabled and have cerebral palsy, but I don’t think this makes me no more vulnerable to the virus than an able-bodied person. I’m probably as fit as any other 34-year-old who doesn’t exercise regularly.

Having watched my brother and mother become ill first, I knew it was only a matter of time before I caught it as my parents are my main caregivers at the moment.

My brother and parents’ symptoms

My brother and dad had what can only be described as ‘typical’ symptoms of Coronavirus – a high temperature and cough. How they felt matched closely with what we were being told in the news, so we assume they had the virus.

At the time, tests weren’t even widely available for NHS staff, so there was little chance of us being able to get tested. I would like to get an anti-body test, once they become available, to be sure that’s what we had. But I’m pretty convinced as it is.

Coronavirus recovery time

The quickest to recover was my brother, who felt ill for about three weeks. Friends with family members who have had confirmed Coronavirus tests have said they experienced a horrible week, perhaps 10 days.

For me, it was two months from catching the virus before I started feeling close to normal again.

Back in April, the information available about how long we might all be ill suggested that we should’ve begun feeling normal towards the end of my second week.

But, as time went on, more details came out and the times seemed to vary. One article I read described someone having what he called prolonged Covid-19. They were ill for three months.

Pain

My first symptom of possible Coronavirus was pain. I assumed it would be sweating because there was so much talk of a high temperature.

It initially made me question whether I actually had the virus. But with my brother and dad having had what seemed so like Coronavirus surely it couldn’t have been anything else? 

I had what I can only assume was nerve pain. I say this because every muscle and joint in my body ached to the point where I couldn’t cope with sitting up as my hip joints were the worst. It was unbearable.

Pain killers didn’t touch it, but there would be random moments where suddenly all pain and discomfort would disappear, only to reappear again sometime later.

Temperature and cough

I didn’t really have a temperature, as has been talked about so much. I woke up sweating a few times in the night, but my temperature was stable.

I instead felt cold most of the time, and generally off-balance, which wasn’t fun. I also didn’t have any breathing difficulties or indeed a cough.

Confusion and rambling

Being confused and disorientated is not something I have experienced before, so this was new territory.

One second I would be convinced I had to do something, but the next I couldn’t remember what it was at all.

I tend to ramble anyway – why use one word when you can use 10?! But, apparently, there were times when I didn’t make much sense at all.

I was also aware that I wasn’t thinking as fast or as clearly as I normally do, right up until a few weeks ago. Thankfully, I now feel like myself again now.

Tiredness

Together with the other symptoms, I didn’t know what was going on half the time and, despite sleeping a lot, I was constantly exhausted.

I have so much sympathy for people who suffer from fatigue after experiencing what I did.

I’d be sitting or lying down, either watching TV or listening to an audiobook when my body and brain would suddenly want to sleep. Even worse, if I didn’t get my head down straight away, I would go dizzy and experience headaches.

The tiredness lasted the longest, about 15 weeks in total. Even when all the other symptoms had disappeared, I couldn’t actually concentrate to read or do anything without needing to go to bed soon after. I couldn’t look at my phone or laptop without getting an instant headache.

Lack of taste and smell

Not being able to taste or smell anything is now a recognised symptom of Coronavirus, but it wasn’t at the time my family was ill, so that threw another curveball.

For me, the virus caused the weirdest sensation. It wasn’t like when you have a cold and you can’t taste anything, or only taste the catarrh in your throat.

Everything tasted like dust. There was no texture to food either. Everything I put in my mouth could have been the same food.

I suppose at least it didn’t taste horrible, but trying to eat with no sensory feedback was hard. The lack of smell was easier to cope with as I’d experienced that before.

It was also weird when these senses suddenly came back. I was actually overwhelmed for the first two or three days afterwards as everything was suddenly different.

Nausea

This was the worst symptom. I suffer from nausea anyway, but it seems as though this virus had taken it to a new level.

As mentioned earlier, I had no breathing difficulties and I didn’t really have a cough. But I do believe that this virus, assuming it was Coronavirus, attacked my digestive system.

I felt like somebody had turned me inside out. If I didn’t eat, I felt ill, and if I eat more than a few mouthfuls, I was sick. It was a delicate balance that I’d mostly figured out by the beginning of week two.

The rest of my family stopped eating altogether for around two days and then felt better. My nausea lasted about six weeks.

I’ll probably never know if my theory is correct, but it was disconcerting to have an atypical experience when every day the news and NHS were discussing what to expect. My mum’s symptoms also echoed mine more closely too, so it wasn’t just me.

I hope reading this has been interesting and useful in some way. I’m so grateful that none of my family had to go into hospital.

With lockdown relaxing, I just hope people will be sensible so that everyone can get back to ‘normal’ and leave their homes without worrying about catching this awful virus.

I’ve been very lucky, but I never want to feel like that again. Stay safe everyone.

My next post will be about the importance of choice and control and how I’m still having to fight to achieve this! So much in fact that I’ve started a new Twitter hashtag, #DirectPaymentHeadache. If you or someone you know is having issues with the support you receive, DP or not, please get in touch. Together we can effect change for a more inclusive world. 🙂

Changing Places Awareness Day 2020

Today, 19/07/2020 is Changing Places Awareness Day in the UK and the government has announced that Changing Places toilets will be mandatory in big public buildings in England and that 37 motorway stations will have Changing Places toilets installed.

What are Changing Places toilets?

Changing Places toilets enable people who are hoisted or who cannot use standard disabled toilets to be able to relieve themselves in dignity and comfort with enough space for the equipment they need and also the people needed to assist them. Fitting a disabled person and the people assisting them into a bathroom with the door shut is a squeeze at best and impossible at worst. Changing places have plenty of space.

Changing Places Equipment explained

Changing Places Bathroom
A picture of a changing places bathroom with all the different components/adaptions labelled.

The hoist means that the facilities in this toilet can be used by people who otherwise can’t transfer. The height-adjustable bed provides a safe and clean surface for people who cannot use a toilet to lie down. The fact that it is height adjustable means the person/s assisting are not having to bend into awkward or painful positions to assist with toileting or changing the person they are with. There is even a shower so that an individual can get clean if needed, complete with a privacy screen. The floor is designed to be waterproof and easy to clean. This is a great step forward in inclusivity but it is not wholly inclusive.

I’m really pleased about the decisions made by the government today in regards to this as it means access and freedom to so many disabled people but I cannot use these toilets as there isn’t a static bar on a wall next to the toilet. Different adaptions suit different people and that is why it’s important to be conscious of inclusive design.

Why is the toilet in the middle of the floor?

With the toilet in the middle of the floor, there is plenty of room on either side of the toilet for a carer to be on each side of it. If someone is being hoisted two people can often be needed. This is also the reason there is plenty of space between all the equipment in the room. I’m not sure what the answer is to make Changing Places inclusive for all. My one idea is to make the grab bars on either side of the toilet longer. With assistance, I could then use the grab bar. I’ve yet to see any longer grab bars that fold up though. If they exist please let me know. Also, I would like to your experiences of Changing Places toilets and if you’ve found the shower in them useful?

Thank you to everyone who has voted in my poll so far, if you haven’t please consider voting now! It’s anonymous and will really help me make this blog inclusive.

My COVID-19 experience post is coming this week so keep your eyes or your inbox peeled by following me. Simply scroll down to the bottom of this post or click on the appropriate icon to the right. I’m now on Twitter!

Covid-19 and upcoming articles

Thank you to everyone who expressed concern for my health over the last few weeks. I am now fully recovered. Apart from your kind concern, I haven’t received any COVID-19 questions from any of you lovely readers yet but there has been plenty of interest in the actual article. It occurred to me that perhaps I’m overthinking things and I should just write about my experience but also that people may be concerned about anonymity. Please be assured that anything you ask me, only the question will be used. There is still time to get in touch if you’d like to. It also crossed my mind though that this blog may not be accessible to everyone. I’d be grateful if you would take a minute or two to vote on the accessibility of this blog. If it isn’t accessible tell me how to rectify the situation.

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Thanks for Voting!

As lockdown relaxes for some of us, I’m starting to put things in place for my new PA’s to start and will be writing about my journey as I go. I also have a couple more articles to write for Disability Horizons, a list of online courses which are still available to do from home and a money advice article. Keep your eyes peeled for those! I have a busy few months ahead. Stay safe everybody.

My COVID Experience

I’ve been asked by Disability Horizons to write about my experience of COVID-19. Rather than just write how I felt I think it would be of more interest and use to you, the readers, if I answered any questions that you might have about what it’s like to be ill with this virus. I’m really interested in what you would like to know and I’ll do my best to answer them. There are no silly questions so get asking.

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