Mental Health

How does my disability affect health and wellbeing?

Mental wellbeing

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 6th time. My wellbeing has improved as I now have a solicitor to assist me in fighting for my rights.

Mental health therapy has been really hard to access for me. I don’t know if this is because of my disability, many private services I’ve asked about don’t have wheelchair access. Waiting times within the NHS are horribly long for anyone at the moment, even if there are no additional needs to worry about.

Needing someone to assist me with virtually every task negatively impacts my mental health but I’m hopeful that with the right support in place, my mental wellbeing will be boosted.

I started inclusivelivingconcepts to help me work through what is going on in my life. Thinking that writing about my experiences would not only help others but also improve my own mental health as well.

I also attend 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. Poor mental health can be triggered by both big and small situations.

Talk to someone if you are feeling low or struggling no matter what the reason. See the list of helplines below.

This picture shows a black telephone handset with a black circle around it. The background between the phone and circle is white

Helplines:

There are accessible options if you find using a phone inaccessible due to a disability. The info below was taken from the Mind website:

Samaritans

To talk about anything that is upsetting you, you can contact Samaritans 24 hours a day, 365 days a year. You can call 116 123 (free from any phone), email jo@samaritans.org or visit some branches in person. You can also call the Samaritans Welsh Language Line on 0808 164 0123 (7 pm–11 pm every day).

SANEline

If you’re experiencing a mental health problem or supporting someone else, you can call SANEline on 0300 304 7000 (4.30 pm–10.30 pm every day).

National Suicide Prevention Helpline UK

Offers a supportive listening service to anyone with thoughts of suicide. You can call the National Suicide Prevention Helpline UK on 0800 689 5652 (6 pm to midnight every day).

Campaign Against Living Miserably (CALM)

You can call the CALM on 0800 58 58 58 (5 pm–midnight every day) if you are struggling and need to talk. Or if you prefer not to speak on the phone, you could try the CALM webchat service.

Shout 

If you would prefer not to talk but want some mental health support, you could text SHOUT to 85258. Shout offers a confidential 24/7 text service providing support if you are in crisis and need immediate help.

The Mix

If you’re under 25, you can call The Mix on 0808 808 4994 (3 pm–midnight every day), request support by email using this form on The Mix website or use their crisis text messenger service.

Papyrus HOPELINEUK

If you’re under 35 and struggling with suicidal feelings, or concerned about a young person who might be struggling, you can call Papyrus HOPELINEUK on 0800 068 4141 (24 hours, 7 days a week), email pat@papyrus-uk.org or text 07786 209 697.

Nightline

If you’re a student, you can look on the Nightline website to see if your university or college offers a night-time listening service. Nightline phone operators are all students too.

Switchboard

If you identify as gay, lesbian, bisexual or transgender, you can call Switchboard on 0300 330 0630 (10 am–10 pm every day), email chris@switchboard.lgbt or use their webchat service. Phone operators all identify as LGBT+.

C.A.L.L.

If you live in Wales, you can call the Community Advice and Listening Line (C.A.L.L.) on 0800 132 737 (open 24/7) or you can text ‘help’ followed by a question to 81066.

Helplines Partnership

For more options, visit the Helplines Partnership website for a directory of UK helplines. Mind’s Infoline can also help you find services that can support you. If you’re outside the UK, the Befrienders Worldwide website has a tool to search by country for emotional support helplines around the world.

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. Not needing to access anywhere but my home was great at the time and a boost to my mental and physical health. 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. I still don’t use them regularly but that’s down to my willpower, I am using them more now.

Wellbeing resistance-bands

I’m now attending physio sessions so hopefully this will help me physically. Those of you who follow me will know I already have some fetching new boots and I’ve tried a very expensive wheelchair that holds me in a great position and eliminates my back pain.

Dancing with Motionhouse

Our first performance of Wondrous Stories was on Thursday 17th March, as part of the Birmingham 2022 Festival. Dance and more importantly my teammates in Freewheelin’ Dance have an enormous, positive impact on my wellbeing.

Watch the Wondrous Stories performance 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 second chair. The Q700UP I trialled at my physio session would be amazing but it is very expensive! More on this when I have more time, with pictures I promise.

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… 😂

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, including access and disability. A 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 there 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 people, both those with and without a disability provide feedback about products and services the more inclusive the world will be.

If you have any questions or comments about inclusivelivingconcepts please get in touch. I would love to hear from you.

Happy New Lockdown

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 visiting had the best Christmas possible and that New Year was a happy occasion for all my inclusivelivingconcepts readers.

New years eve Fireworks
New Year’s Eve Fireworks

Recruitment

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! The joys of living with a disability!

If I seem disillusioned and bitter about the process then, unfortunately, that’s an accurate picture. Getting access to the right support was horrid before, It is almost impossible at the moment! 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/PAs this year!

hands clasping
Hands clasping in support

My lockdown plan

On a more positive note, whilst I feel pretty pessimistic about the recruitment process and Social Care in general, I’m determined that this year is when 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 as 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 new 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 vaccines available?

I’d be interested to hear from people who have had the COVID-19 vaccine already. My disability, whilst sometimes frustrating, thankfully does not affect my health so I’m pretty far down on the list. A fact that I’m 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!?

Self-Isolation Activities

My inclusivelivingconcepts self-isolation activities post. I’ve seen a few of these self-isolation posts pop up since I said I was going to write one. While I’m not surprised by this, COVID-19 is, after all, the only topic of conversation at the moment. During my COVID-19 illness, audiobooks kept me sane as I didn’t have to focus on anything. I sincerely hope that none 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, and even before we officially isolated, I used it as a way of gaining some me time. 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.

Pigment app

I’ve recently discovered an app called Pigment, which I now use on my iPad. It’s available for IOS and Android. You can finger tap, 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 due to disability. I find as much as I like pencils and paper, after 20 minutes, my hands are really sore.

The app is free with in-app purchases, which I recommend you leave alone. The app gives extra brushes or colours but 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.

If you are looking for a way to be productive whilst in self-isolation, then this is a good place to start. Having completed this task, I can tell you it’s very satisfying.

Top tip:

It feels even less like work if you have music, the radio or your favourite audiobook on in the background.

The organisation process

My process for organising my account followed this pattern:

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. 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. 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. Press the delete key! It can feel like a big accomplishment. If you’re 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. Your inbox will now contain 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.

Creating Folders

5) If you use an email client, I use Mail on a Mac, 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. To create a new folder, you need to click on an email, find the label icon and type in a new label/folder name. After that, 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. This time, you move each email into one of the categories you created. I had emails going back as far as 2016. It took me about two hours to do all of that. It did get boring, but made life so much easier.

Organising my photos into folders in a similar way. I put all the photos from all my devices and memory cards onto my computer hard drive. I put my favourite music on in the background and went through them one by one.

Video Calling.

Video calls are a great way to stay in touch and can help keep feelings of isolation at bay. I haven’t done a lot of video calls as I find them exhausting at the moment. 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 via Zoom, which is entertaining. Fingers crossed, I’ll feel well enough this Friday to take part in my Freewheelin’ dance class again. After over a month’s absence, I’m missing it.

Screenshot zoom Dance

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, and accessibility of 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 and 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 by paying by credit card. Within twelve months, you can exchange a book for another if you don’t like your choice.

When you first join, you have access to a month’s trial, which means you get your first book free. At the moment, I’m listening to Wicked by Gregory Maguire. The book is very different from the theatre production. 😉

Screenshot Of The Audible App On My Phone

Top Tip

When signing up for the free trial, choose the two book a month option. You will get two free books. 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 restart after three months but for the paused period you are not charged and no more credits are added to your account. This is Great for when you have too many books to listen to.

RBDigital is the service Birmingham Libraries uses for its 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 the Birmingham Libraries page explaining the setup and the RBDigital app on my phone.

Screenshot of RBDigital app, displaying A Harry Potter Book

Ebooks

Reading is a solitary activity that takes me to different places and is the only way we can travel at the moment. Ever since I’ve owned E-Readers, I’ve loved ebooks. They are so much easier to access as an E-Reader is lighter to hold than a book. I can read whilst I sit outside, which is great when the weather is nice and sunny.

Libby App

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 e-reader. The only drawback to my Kindle is library books can’t be added to it.

I use Amazon to get most of my books, which is why I prefer the Kindle above other e-readers. Kindle Unlimited is currently offering a free trial to new customers. 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.

Kindle

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! I’m pleased to be getting back to some semblance of normality in these strange times.

Top tips for coping with isolation

Not being able to see friends and family is hard, and it is very easy to let the situation affect your mental health. Many disabled people already know what isolation feels like, as illness or circumstances have meant that they can’t go out.

Whether you are isolating because you are ill, shielding or just following lockdown rules, here are my top tips for staying sane.

Pick activities that isolation rules don’t change

With the exception of reading, all of the activities I have listed are activities that are done by me when I’m alone. Ok, if I wasn’t isolating, I may colour in the same room as others or listen to music and books with headphones on, but I don’t actually need and wouldn’t normally have anyone else engaging with me. This reduces the sense of weirdness that self-isolation can bring. I’m doing something by myself, and I’m enjoying it. Focusing on this instead of the fact that I can’t visit friends is a positive frame of mind that will assist your mental well-being.

Reading can take you from isolation to anywhere in the world

Whatever form it takes for you, ebooks, physical books, or audiobooks, can transport your mind away from your isolation to different countries’ fantasy lands or just make you think of something else. Using your imagination in this way is one of the best ways I have found to combat loneliness.

Keep in touch with friends and family

It doesn’t matter how you do it, keep in touch. Phone calls, video calls, emails, letters, postcards. Have contact with people. If you’re looking to meet people, various groups are now online to suit all sorts of interests. Dance, writing, knitting, crafting, and photography are just a few ideas.

I hope you’ve enjoyed reading about how I’m spending my isolation. 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. 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.

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