Happy New Lockdown

This was how my brother greeted me on his first day back at work after the Christmas Holidays and I found it so equally amusing and depressing that I just had to use it for this post. I hope everyone had the best Christmas they could and that New Year was a happy occasion for all my readers.

New Year’s Eve Fireworks

So new year same…activities! Literally! Last year I wrote about how I had lost a PA due to health problems and this year, thanks to COVID-19 I will be recruiting again. I have no idea what this will look like during lockdown but as my Mom helpfully pointed out, I have to find people to interview first! If I seem disillusioned and bitter about the process then, unfortunately, that’s an accurate picture. If any of you have any tips on how to make the recruiting process less stressful please let me know. I’m thinking of starting a support group for people who have lost carers/PA’s this year.

Hands clasping in support

However on a more positive note, whilst I feel pretty negative about the recruitment process and Social Care in general, I’m determined that this year is the year that I get my ducks in a row! (Runaway Bride reference.) I’ve contacted The Disability Union, to assist me with getting my care package. I’ve signed up for the Lifebook Course to try and get a handle on how I want to actually live, all the assessments and stress has made it hard to see the wood for the trees. It may help or it may be new-age hype but I’m hoping for the latter. I’ll also be more active with Disability Horizons this year, writing and editing content. Check out my piece on free online courses available to stave off boredom and improve skills and knowledge during this latest lockdown.

I don’t know whether this year equals a new me but I’m optimistic that it’s a year for change. What are your plans for this year? How are you feeling about the lockdown and the fact that there are now two vaccines available? I’d be interested to hear from you if you’ve had the COVID vaccine already. My disability whilst sometimes frustrating, thankfully does not effect my health so I’m pretty far down on the list. A fact that I’m both incredibly grateful for and at the same time I’m impatient for the world to be vaccinated so we can get back to whatever normal there is for us all. Who’s with me!?

Screenshot zoom Dance

International Inclusion

Yesterday was International Day For People with Disabilities, I hope everyone has had a great day. If you’re anything like me though apart from more disability-related posts on social media today has been the same as many others. The same triumphs and difficulties exist but awareness is growing. This can only be a good thing for breaking down barriers that disabled people experience.

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 and how everyone can be involved and have fun. This festival is called Inclusive Dance World Vision and apparently happens every year with amazing dancers travelling to Moscow to compete. Obviously due to Covid-19 videos were submitted this year and the whole event was live-streamed on the day.

I did plan on posting our entry but have to wait until the big reveal at our Freewheelin’ Christmas show on December 18th. Instead here is our first competition dance from a couple of years ago.

Everyone should be included no matter what their disability, race or religion. As a disabled person the barriers I face are mostly caused by the beliefs of wider society, however as days like the International Day For People With Disabilities, Purple Tuesday and the Inclusive Dance World Vision show, attitudes I changing slowly but surely, one dance at a time, in my case.

Interview With Sam From PHB Hunters

Campaigning for equality.

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. This was agreed and 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. 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 who 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.

Stuck In A Rut!

Hello people. I’ve been struggling with what to write for nearly three weeks, stuck in a rut and wondering what I could write about right now that would be of interest. In short, I’m having a self-esteem crisis and a bit of writer’s block. The ideas are there I just haven’t been able to do much with no mobility aids. I hate feeling useless and thankfully, with the return of my chair last week I’m beginning to climb out of the hole my mind has dug for itself. It has got me thinking though about the pressure that is put upon us to be productive. This post would’ve probably been more topical on World Mental Health Day but better late than never!

I’m the type of person that’s happiest when I have things to do and I feel useful and I think most people are the same. I’d love to know what you do when you’re stuck in a rut, bogged down by monotony, what helps you breakthrough and feel more like you?

For me the first thing I did when I got my chair back was head out for a short walk/wheel around the streets close to my house…I’ve just read that back, maybe around the neighbourhood sounds better? Anyway, it helped. Being able to be somewhere, by myself, helped and that’s what I’d been missing for three months.

I realise this post is a bit rambling but I just wanted to share my thoughts on here. Writing is cathartic for me.

I have heard from Rhys Bowler but he’s been busy writing a speech for the Disability Cross-Party group of The Senedd, (Welsh Government.) The meeting was a week ago so I’m hoping to find out how it went soon. In the meantime, I have sent Rhys and his friend Sam my interview questions and Sam has very kindly shared her story with me. I’ll post it here next week, giving her a chance to see my write up first.

Please get in touch with what you would like to read from me. Any and all questions are welcome. I’d love to write a series about how I’m travelling the world but unfortunately, that’s just a pipe dream at the moment, as it is for many others in this COVID-19 environment.

Choice and Control

Firstly, thank you to all my readers and followers who have read my blog so far. I’m sorry there has been no new posts for awhile but the last month or so, since I posted has been very hectic.

I mentioned in a previous post that my PA’s were starting soon and that I would share with you lovely readers my journey. My two PA’s started the week of the 17th August 2020, both seem lovely and employing them is my first step back to choice and control since COVID-19. What I didn’t count on is that the agency that I’d contracted back in March 2020 to assist me while I was waiting for the paperwork on my PA’s to be processed and completed, (DBS checks took forever even before COVID-19,) would also want to start on the 17th August! That week I had seven different people come to my house! Worse still they were invited, I was putting myself through this mass meet of people in the hope that I gain freedom and control in the long run. There’s a well known expression about buses and them all coming along at once. After eight months of having no formal care suddenly people were everywhere!

This is very positive in one way as it gets things moving, it was obvious to me age eleven and is now even more obvious at thirty-four that I can’t rely on my family forever. They deserve choice and control as well! I’ve moved out from the family home three times in my life so far but it has never stuck permanently because of my lack of choice and control. It’s why I’m still fighting for a bigger care package as having the money to pay people for what I actually need would go a long way to removing barriers and afford me more choice. Money does that for everyone, disabled or not.

The actual care package, my petition to meet my needs isn’t going anywhere. Just recently my social worker applied for the emergency COVID-19 fund as CHC, (Continuing Health Care,) isn’t currently assessing people and was told I’m not eligible as I can use a Shewee!

Never fear lovely readers this isn’t going to become an in-depth account of my personal habits but for those of you who don’t know, a Shewee is a plastic device to enable women to pee standing up. Now I could do a whole separate post ranting about how if I could stand up I could probably transfer and not need the device in the first place! Let me know if your interested in reading that, but my current thinking is that I’ll bore you to death, so let me just say, in fairness, that some disabled people have apparently found it helpful. I’ve tried it and many variations thereof and am unable to use them sadly. Not to mention that this device, if useful, would only solve one of the things I need assistance with. My Social worker has advised me to put in an official complaint and I’m still waiting for the payroll paperwork to be completed in order for my PA’s to be on my payroll and have payslips every month, despite the fact that they have now been working for me for almost three weeks! #DirectPaymentHeadache.

In other, more exciting news. I’ve started writing for Access Rating as a content writer. The company is run by disabled people and they aim to improve disability access by offering businesses access audits and by use of an app that they have created, enabling anyone to download the app and rate nearby venues on their accessibility. I know it’s an idea that’s been done before via review websites but this is the first app that I know of. The rating system is really easy and takes less than 30 seconds, unless you really want to add in detail, in which case there’s space for that too. I’m really excited to be working with them as it helps me influence greater change for a more inclusive society. The app gives everyone the chance to have their say and is free to download so check it out and rate your corner of the world. 🙂

If you’ve checked out my facebook page recently you’ll see that I shared a link to BBC news which tells the struggle of a man in Wales to be allowed to manage his care package through a Personal Health Budget. You can probably tell that I am not a big fan of the way Social Care is run but I was genuinely shocked to learn that Personal Health Budgets aren’t an option in Wales! They may be a headache but they do offer the most control for a lot of people.

A Personal Health Budget is different to what I currently receive as I receive Direct Payments through Social Services. As I’m asking for a bigger care package my Social Worker is trying to get me funding via CHC. If this happens my needs will be fully funded but at least partially by the NHS. I could still receive my money as a Direct Payment but as things stand at the moment Rhys and others like him can’t, the NHS decides what he receives and who provides that. I’ve since reached out to Rhys and been given permission to send him some questions. I’m curious as to how he manages in a system which, according to everything I’ve read, takes away most, if not all, of his choices and I’m hoping I can assist in some way. I may be in limbo in many ways but at least I can choose who assists me.

I’m so grateful for this choice and having that inspires me to improve things for us all. This keeps me going, especially as for the last month both my electric wheelchairs require repairs! My private Power Chair has an as yet undiagnosed technical fault and the wheelchair given me by wheelchair services has unsuitable footplates and arm rests meaning I can’t leave the house in either one! I have two chairs and I only need one to be working. When I next post hopefully they will both be in working order. What was that about buses?

Until next time.

My Suspected COVID-19 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 COVID-19. I believe that is what it was but because testing was not widely available then, I’ll never know for sure.

My Experience

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 Covid-19 – 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.

Recovery time

The quickest to recover was my brother, who felt ill for about three weeks. Friends with family members who have had confirmed Covid 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 Covid-19 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 Covid-19, 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 Covid-19, 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 Covid-19, 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 toilets will be mandatory in big public buildings in England and that 37 motorway stations will have Changing Places toilets installed. These 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.

image of a Changing Places toilet. Showing a toilet, grab bars, changing bench, shower, shower seat, a privacy screen, pull cord and a ceiling track hoist.
A Changing Places Toilet
(image copyright, changing-places.org)

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 and 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 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 decisons 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.

There’s a good reason for this. With the toilet in the middle of the floor there is plenty of room either side of the toilet for a CareGiver 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. I could use the grab bars with assistance if the grab bar was long enough for me to put two hands on it while at a 90 degree angle to the toilet. 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 hear how accessible Changing Places toilets are for you 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!

Update 07/07/2020

Thank you to everyone who expressed concern for my health over the last few weeks. I am now fully rcovered. 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 recify the situation.

This poll is no longer accepting votes

Is This Blog Accessible For You?

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.

Self Isolation Activities

I’ve seen a few of these posts pop up since I said I was going to post and while I’m not surprised by this, COVID-19 is after all the only topic of conversation at the moment. Having contracted COVID-19 I have to say audiobooks kept me sane has I didn’t have to focus on anything. I sincerely hope that non of my readers share my experience but being read to is a great way to pass the time, especially if you’re feeling under the weather or just fancy a lazy day. I hope you enjoy reading how I’m spending my isolation and I’d love to hear how you are filling your days during this crisis.

Colouring

I love colouring books. I’m unfortunately not arty and cannot draw to save my life. The beauty of colouring books is that the hard work is done for you. I’ve recently discovered an app called Pigment which I now use on my iPad. It’s available for IOS and Android and makes things even easier as you can finger tap or use a stylus to fill in an area or just set it so you can’t colour over the lines. Great if you have limited hand function. I find as much as I like pencils and paper, after 20 minutes my hands are really sore, whereas on the iPad I can keep going for longer. The app is free with in-app purchases which I recommend you leave alone unless you’re really attached to extra brushes, or colours as the paid version is £7.99 per week! There are plenty of free pages without having to spend anything though. Pigment also lets you import pictures to colour in. There are other free colouring apps, Colorfy is a good example, (also available on Android) but this is my favourite. Check out a couple of my pictures below.

Organise Email

If you’re already a superbly organised individual then feel free to scroll down.

Not the most entertaining thing in the world to do but if you are looking for a way to be productive then this is a good place to start. Having completed this task I can tell you it’s very satisfying and feels even less like work if you have music, the radio or your favourite audiobook on in the background. My process for organising my account followed this pattern, feel free to follow my work pattern or invent your own.

1) Open your email client or sign in using your web browser and click on your inbox

2) Have a piece of paper/your phone next to you before scrolling right to the bottom of your inbox.

3) Go through and read each message, BUT before moving to the next message decide if the email you are currently reading needs to be kept, filed away or left in your inbox because you have to take action before it can be moved. If it’s an email from Amazon or similar trying to persuade you to buy something you don’t want/need then pressing the delete key can feel like a big accomplishment, especially if like me, these kinds of emails have built up over the years! If however it’s something you want to keep, think about a category folder that you could create for that email and write it down on your piece of paper. A few categories I use are: Receipts, Social Services and Volunteering. Move onto the next email in your inbox when you have written a category down and leave the email in your inbox for the moment.

Screenshot Of Email Folders I've Created

4) Go through all your emails. You should now have deleted all useless ads etc and be left only with an inbox full of emails that you need to take action with and emails that need to be filed. You will now also have a few categories jotted down.

5) If you use an email client, I use Mail on a Mac, you now need to visit your email account via your web browser and create folders for all the categories that you noted down. I use Gmail. Folders are called labels in Gmail and to create a new folder you need to click on an email, find the label icon and type in new label/folder name and click ‘create new.’ Do this for each of the categories you have written down.

Screenshot, How To Add Labels/Folders In Gmail

NB: Remember to untick the boxes unless you want to move the current email into your new folder.

6) Now you can go back to your inbox and go through it again but this time you can move each email into one of the categories you created. I had emails going back as far as 2016 and it took me about two hours to do all of that so definitely a I’m bored and have nothing more important to do but it makes life so much easier once done.

I also organised my photos into folders in a similar way by putting all the photos from all my devices and memory cards onto my computer hard drive and shifting through them one by one, with my favourite music playing in the background. 🙂

Video Calling.

I haven’t done a lot of this as I find video calls exhausting at the moment but it is a great way to stay in touch while we all can’t see each other in person. I really feel for people who haven’t got access to the internet at this present time. I’m mostly using Zoom, as I can have it running on my Mac and everyone can access it. Unlike Facetime, where an Apple device is needed. I’ve just started taking part in two regular quizzes and I’m hoping I’ll feel well enough this Friday to take part in my Freewheelin’ dance class again, after over a month’s absence.

Audiobooks

I use two audiobook services, Audible and RBDigital.

Audible is relatively well known and is owned by Amazon. I love the choice and control you have with this service. For £7.99 a month you get one credit on a recurring monthly subscription, unless paused or cancelled. Find a book you like, listen to a sample, this is particularly useful if like me you find some narrators more enjoyable than others. Purchase the book with either a credit or buy paying by credit card. If once you have brought the book you don’t like it for any reason you can return it, and exchange it for another book, as long as you do so within twelve months. When you fist sign up, you have access to a trial for a month, which, as they point out means you get your first book free. At the moment, I’m listening to Wicked by Gregory Maguire. The book is very different two my favourite theatre production. 😉

Screenshot Of The Audible App On My Phone

Tip: when signing up for the free trial, choose the two book a month option, you will get two free books and if you love the service but £14.99 is too expensive you can always downgrade to the one book a month subscription before the trial ends. If you cancel before the trial is up, won’t be charged and you’ll get to keep your books. Pausing membership is where you take a break for three months. You are still a member, membership and billing restarts after three months but for the paused period you are not charged and no more credits are added to your account. Great for when you have too many books to listen to and need to listen to those before picking your next read.

RBDigital is the service Birmingham Libraries uses for it’s members to access audiobooks/magazines and now apparently also newspapers. In my experience it’s a lot more limited than Audible but it is a free service. A valid library card is required and set up is done through your main library webpage. Your city may not use this service, some use Overdrive. Below is a screenshot of Birmingham Libraries page explaining set up and the RBDigital app on my phone.

Screenshot of RBDigital app, displaying A Harry Potter Book

Ebooks

Ever since I’ve owned E-Readers I’ve loved ebooks. They are so much easier to hold and I can read whilst sitting outside, great when the weather is nice and sunny. I use a Kindle Oasis and an app called Libby. Libby is the ebook app for my library and can be downloaded onto all android, and IOS tablets. Like the RBDigital app, listed above, a valid library card is required but set up can be done through the app itself. The app will ask you to select your local library and input your library card number. If you have an E-Reader that uses the Epub format rather than the Kindle/Mobi one, loans from Libby can be sent to your ereader. The only but rather substantial drawback to my kindle. I use Amazon to get most of my books, which is why I prefer the Kindle of others. Kindle Unlimited is currently offering a free trial to new customers and Project Gutenberg offers free out of copyright books to the public. I’ve also just discovered a website called Manybooks.net, which I’ll be exploring for new books soon.

Writing

Last but definitely not least is writing. It helps me relax and get any and all ideas out of my head before I go to sleep at night. At least that’s the theory, it doesn’t quite work that well in practice. While I was ill I couldn’t write at all which is why this post has taken so long, I still find looking at my laptop screen tiring. I couldn’t wait to start writing again so I’m pleased to be getting back to some semblance of normality in these strange times.

I hope you’ve enjoyed reading about how I’m spending my lockdown. Get in touch and let me know what you’ve been doing to keep busy. If anyone has any podcast recommendations please let me know as I’m interested to know what all the hype is about but unsure where to start as there is so much choice!

Till next time stay safe and well.

Accessible Rooms And How To Make Them More Accessible

Due to a certain well known virus most of us aren’t going anywhere at the moment but I said I’d write this before the COVID-19 madness started and it occurred to me that the house arrest many are experiencing at the moment is a good opportunity to get organised for when we are able to travel.

 

Questions to ask before you book your accommodation.

I’ve found the best approach is to think about what would make your stay IMPOSSIBLE and then structure your questions around making sure the impossible can’t happen. The obvious one for a wheelchair user is steps. I always specify the exact thing I need or don’t need. Using the example of steps above the question I would ask is. Does your accommodation have any steps? The key word here is any. If they say no, I follow up with, none once inside? The reason for this is I have then often been told that the entrance has no steps but that the bathroom is split level. People tend to think about entrances when you ask any access question.

Blue Door Entrance

My Top 10 Questions:

1) Does your accommodation have any steps?

This is a deal breaker for me, unless there are lifts. Hotels often have alternative access but If I want to book a holiday cottage for example it has to be wheelchair accessible. Steps may not be a barrier for you. Your insurmountable barrier may be that you need your accommodation to have hearing loops etc. Personalise this top ten to your circumstances.

2) If there are steps are there lifts/ramps available to get to where I want to go?

I ask this because some people see in black and white and it might not occur to them that there are steps at the front but step free access at another entrance. Finding this out means I have more choice available of where to stay.

3) What are the width of your doorways?

This question is one I don’t have to ask as I’m lucky enough that my biggest piece of equipment, (My PowerChair,) fits through standard doorways but it is a close thing sometimes! To be safe, measure your chair from widest point to widest point. Then you can say I need doorways to be no narrower than xyz. Please note: if you have a piece of equipment bigger than a wheelchair, e.g a hoist, measure that instead. Bit obvious but still worth pointing out, you want the doorway/s to admit you and anything you might need.

4) Is there a wet room?

I need a wet room, as I can’t access a bath or any bathing setup that isn’t flat. Obviously you could change this to whatever set up you prefer.

5) Are there grab bars next to the toilet, fixed to the wall?

Again this is very specific to me. I cannot transfer without static bars that are fixed to the wall. Fold up ones lift up as I stand, I’d be there all day! You might need fold up bars or no bars so a side transfer is possible, or enough space around the toilet to use a hoist. If you’re able enough that a toilet is a toilet, then leave this out.

6) Is there a shower seat fixed to the wall?

This is the set up I find most accessible as I find hired shower chairs an expense and they are often too high for me to transfer into. There are companies that will lend you equipment and many deliver to your accommodation, for a fee of course. You may be wondering why this question didn’t follow the wet room question, If their isn’t a wet room I can’t stay there, ditto if I can’t access a toilet. Given that the specific’s of the shower area are saved until I’ve ascertained the bathroom and toilet space are accessible.

7) How high is the bed?

My biggest issue isn’t that I use a wheelchair it’s my height coupled with my disability. I’m 4.8ft, just short enough to make an already challenging transfer that much more difficult! I therefore need a low bed. You may need a high bed to make it easier to get out of it in the morning. It’s also worth asking if there is space under the bed itself. If you travel with a hoist or hire one the last thing you want to discover is that the hoist cannot get close enough to the bed!

8) Are the light switches near the bed?

If you’re like me you might need assistance in the night, sometimes however I just want to roll over and check the time without disturbing the person assisting me. If the light switch isn’t reachable from the bed this isn’t possible. It may sound trivial but I’m no good at routing around in the dark!

9) Do you have adjoining rooms?

This question is more for hotel rooms and the fact that I need assistance. If this doesn’t apply leave it out but if I need anything at stupid o’clock my family or my PA’s have the luxury of coming straight to me and not having the honour of traipsing a public area in their PJ’s! If sharing a property then this isn’t needed.


10) Can you email me pictures of the property/room type that I’m looking at booking please?

I will never go anywhere again without first seeing pictures of where I’m staying and the layout. Even after all the above things can be topsy turvy upon arrival. Even with the best will in the world people misunderstand and in some cases, give completely the wrong information. Prior to my stay in London I asked all above questions and received satisfactory answers. Upon arrival, the shower seat was secured by a portable seat which was hung over a static grab bar and was VERY shallow. I eventually got my money back as I had one shower over three days which nearly ended with me and my PA on the floor as the seat wasn’t stable! I will write a review of my stay there within the next couple of weeks. I did on this occasion request pictures but they weren’t clear and I took a chance. Businesses should be happy to provide clear images of either where your staying or a comparable room/building. If they are not, find somewhere more helpful who will accommodate you.

Clip Art of A Camera

Products To Make Accommodation More Accessible

Having found somewhere to visit and phoned the business to ask about access requirements it’s quite likely that the place you want to stay isn’t perfect and not as straightforward as it would be if you were in your own home. Instead of not going anywhere and staying home, (sound familiar?) there are products out there to make accessible rooms accessible to you?

Portable Hoist

Everybody is unique and because we are all unique our version of accessible is different. What works for one person may not work for another. Some people cannot manage without a hoist to transfer from A to B without a hoist. This doesn’t have to mean that travel is out of the question. If you are hoisted, chances are to save space and for convenience you have ceiling track throughout your home. Unfortunately this isn’t portable. There are however portable hoists available for purchase or hire. See the image below. If hiring a hoist you may want to check the dimensions with the company to check that it will fit through doorways.

hoist
Picture Of A Portable Hoist

Granted this isn’t small by any means but you can see that it does fold and can be moved about. For the purposes of this blog post all images are taken from mobility websites and I’m not endorsing any particular product just giving some idea of what’s available. If you use something that I haven’t included in this post. Please get in touch.

Patient Transfer Aids

If you don’t need a hoist but need some help transferring there are many aids available. You do need to be able to weight bear to use these.

Patient Turner
Patient Turner

A Patient Turner, like the picture above is a device that assists you to transfer without putting strain on the person helping you. Stand on the disc with knees against the pads, holding onto the bar at the top which you can also use to pull yourself up into a standing position and the patient turner can be wheeled short distances by your PA. Not sure how portable they are in practice but the top bar can be unscrewed for transport on most models.

Turntable

The image above is of a turntable, a more portable device then the patient turner. The disc turns around, enabling an individual to be assisted from A to B without having to struggle to move feet and turn around. Stand on the disc and with the help of someone else the movement to turn around is initiated, the disc turns around. This is what I use to get from my wheelchair to bed. By positioning my wheelchair next to the bed, disc on the floor, under my feet, I can stand, (with the help of my PA.) The disc turns and my legs go from being in front of my wheelchair to in front of the bed. A 90 degree turn has been achieved and all I have to do is stand, very portable.

Transfer/Bath Step

I use this because it is very rare that things like beds and chairs are low enough for me to transfer onto. This steps are study and non slip and add height for those of us who need a bit of help in that department. I use it together with the turntable above. The step I use is made up of different blocks so that you can add or takeaway layers as required. Very useful and in my case means I can stay in places where otherwise I would need a specialist bed that goes up and down.I use this because it is very rare that things like beds and chairs are low enough for me to transfer onto. This steps are study and non slip and add height for those of us who need a bit of help in that department. I use it together with the turntable above. The step I use is made up of different blocks so that you can add or takeaway layers as required. Very useful and in my case means I can stay in places where otherwise I would need a specialist bed that goes up and down.I use this because it is very rare that things like beds and chairs are low enough for me to transfer onto. This steps are study and non slip and add height for those of us who need a bit of help in that department. I use it together with the turntable above. The step I use is made up of different blocks so that you can add or takeaway layers as required. Very useful and in my case means I can stay in places where otherwise I would need a specialist bed that goes up and down.

Transfer/Bath Step
Transfer/Bath Step

Blocks

These blocks come in different heights and in rectangle, square or round shapes. They can be used to make furniture higher, either for transfers or so a hoist can be slid under, e.g a bed. Hotel staff if asked will position the feet for you but the bed, chair, etc do have to have feet of their own that can be encompassed by the blocks. Again it is something simple that turns the inaccessible accessible. Many are also stackable for storage.

Portable Ramps

Depending on what steps and access is available a portable ramp may be a good investment. These can be expensive, but if you’re patient some good bargins can be found online. I brought a 3ft ramp off ebay last year for £15. It lives in my car boot so I have it with me should I need it.

Picture Of A Portable Ramp
Picture Of A Portable Ramp

Grab Bars

If grab bars are important to you but they have to be in a certain place suction grab bars can make the difference between not being able to stay somewhere and managing. They need to be fixed to the wall you choose by someone with a lot of strengh and having done so, weight should be put through the bar by someone who can cope if the bar falls off the wall. Only then should the person requiring the bar, start to use it. Prices start from under £10 to over £100. Some are better at sticking to walls than others. The ones I use are called Mobeli and I will post a review if people are interested.

Grab Bar
Grab Bar

Shower Seats

If you need something to sit on whilst in the shower there are plenty of portable options, like the one below. However you do need a degree of balance which I don’t possess. That’s why I always ask if a shower has a seat attached to the wall as then I can lean back on the wall for balance and affix a portable grab bar next to me for me to hold onto to. I use a wheeled shower chair at home but it’s definitely not portable. There are also stools foldable and not which take up less room in the car but have no back.

Portable shower seat
Portable Shower Seat

I hope you have enjoyed reading this post and are inspired to begin planning your trips away, ready for when this crisis is over. For now take care of yourselves, stay home and Stay safe.

Look out for my post: Things to keep you entertained while self isolating

error

Enjoy this blog? Please spread the word :)