In answer to Ian’s first question… all the time with EVERYTHING!

Ianbev72's Blog

Do you ever feel as if you have to justify yourself to people who have little or no knowledge of what you do or how you run your life? Ah ha, another loaded question you think, but I can assure you, it’s not asked with a loaded agenda.

As I’ve just started my new job, I’m going through the access to work process again. Dealing with the DWP (department for works and pensions) element of this can be an experience to say the least and often demands a huge amount of patience, humour and an ability to swear a lot under your breath.

Admittedly, they do have to look after a budget which needs to go around a bit, but in my mind it should also necessitate an understanding of the challenges that we face on a day to day basis. One example of this is the need to have…

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How the next Government can make Everyday equality a reality

This is so important disabled people make up more than 20% of the electorate so it’s going to be interesting to see how each political party sells there policies.

Saying this there are huge problems nation wide with the accessibility of polling stations AND postal voting – during every election there are people denied a vote. Amongst the community with learning disabilities many are denied there right to vote – Mencap did some great work on this particular topic.

Finally the things SCOPE point out here really shouldn’t be that hard to achieve and it’s sad to think that in 2017 we are still asking for the same basic things.

Scope's Blog

In just six weeks’ time voters will go to the polls to have their say in the General Election. 

Today we are setting out our calls for the next government – commitments and changes we are asking for so that by 2022 disabled people have the same opportunities as everyone else: Everyday equality.

We know that in 2017, life is still much harder for many disabled people than it needs to be. Too often disabled people can’t access the support they need to at home, in education or work and face negative attitudes, extra costs and pressures on family life.

Action is needed in a range of areas which is why we would like the next government to take a cross-government approach to disability which tackles the barriers that prevent disabled people from participating fully in society.

Today we are calling for action in three main areas:

Improving disabled people’s…

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Let’s talk showers….

This is pretty similar to my shower experience only I have an adapted shower compleate with shower chair but I know if I’m not feeling 100% having a shower will make it worse!

I didn’t have a shower today even though I needed one.

So next time you think I look a bit rough don’t judge I’m not a skank I just can’t shower.

This little life of mine.

“Wow! I feel so refreshed after that shower!” said no person with POTS, ever. Showering is not a relaxing pastime. Nor is it ever possible to have a ‘quick shower’ with POTS, so let’s forget that idea right off the bat. Showers take time, preparation and energy. Lots and lots of energy.

First things first. You have to ask yourself, do I REALLY need this shower? Am I going to be in close proximity to other human beings? Will a GP or member of the opposite sex be poking around anywhere? Am I 100% sure I can no longer get away with wet wipes and dry shampoo? If the answer to any of those is NO, hold off on the shower.

Next ask yourself, do I have the energy? Do I have the time? Am I well enough? Again, if the answer to any of these is NO then leave…

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Hear A New Song…

So First things first merry Christmas and a happy new year To all!

It got to that magical time when your phone contract comes to an end and I spent a lot of time researching which phone to get and the costs not only upfront but over the length of the contract – there was much pondering!

One of my main problems with my old phone was storage it had a software glitch that meant when it got nearly full things would stop working. I was constantly deleting content (which often did not free storage… it was a big glitch) and was very limited when it came to applications it was getting very frustrating!

Next thing to consider was the camera – that may sound strange for a blind person but I take photos all the time and I love taking pictures of nature… And I don’t have a camera so I want the camera on my phone to be my camera. Aside from the regular uses as a visually impaired person I also take pictures of stuff I can’t read then zoom in to the photo I snapped to read the information. This works great and I use it every day on everything from the cooking instructions on my dinner to reading a sign. 

I love music – pretty much all music! On my old phone I could store no music I could only stream. 

So I got a new phone better camera and vitally more storage I set it all up and immediately set it up to play music at the very best quality and save it in that format great! 

I listened through the phones speakers and I was impressed by the new quality and volume.  

Then I hit the sales and for complicated reasons I won’t go into brought some new Bluetooth headphones of reasonable quality. 

I set them up and started listening and I was blown away! 

Songs I’ve listened to probably hundreads of times had a brand new clarity, deeper base notes and genuinely sounded absolutely amazing even at relatively low volume. 

It was like I was hearing my music for the first time I kept switching genres I was eager to hear everything a fresh. 

I was hearing a new song… but it wasn’t a new song!

And it’s got me thinking this can be a bit like our relationship with God. 

We can get to a place of comfort, of status quo we have been plodding along with God and everything seems a bit bland and we don’t even realise we are approaching our relationship with God in a lack lustre way. 

I am not one for New Years resolutions – in fact for me personally I really dislike them but given a new year is about to start and it’s all about new beginnings here’s some thoughts. 

I want to tell you now to pick up some new headphones and hear a new song!

(Of course it’s not a new song, God is steadfast)

The way to do this is simple first you need to recognise that the song your listening to is starting to feel a bit tired. It’s all about how you think if you reconsider a pattern of behaviour in your mind it’s the first step to changing it – my apologies for sounding like a psychotherapist but take it from one that knows just changing the way you think is a big start and can have huge impacts on your daily life. 

Dig into your bible – simple! Don’t do this in a legalistic way out of duty do it because you want to know more of God and his word. I really recommend the YouVersion Bible app because you can switch between loads of different translations (which I think can often add even more to get stuck into) and there are reading plans on different topics. One of the things I love most about the reading plans is that if you miss a day (or 12) you click a button and it catches the plan up to the Callander. 

Seek out encouragement and fellowship these two can be separate but are often linked. Ask a friend to share there testimony over a coffee or ask someone about a time God has done a miracle in there life. You can also look for encouragement on Christian news websites and social media BE EXCITED AND EXPECTANT!


And on that note…

Lord God I pray you will ready our hearts and minds for the new songs you have for us to hear in 2017 and the old ones that we hear a new. Help us to live in a relationship with you that does not grow worn or tarnished over time help us to be alive in you and to live for you. 

Your Voice Matters – Make Chronic Pain Visible

EDS and Chronic Pain News & Info

Your Voice Matters – Make Chronic Pain Visible


The National Fibromyalgia & Chronic Pain Association and pain patient organizations were recently asked to reach out to people with pain and their families directly to ask about their experiences.

People making decisions that significantly affect your quality of life (federal officials, legislators and policy makers) need to know if you are receiving adequate pain management and relief.

Telling your story can affect their policy decisions and new areas of research.  

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UK Disability History Month 2016: Disability And Language

Same Difference

I was offline for most of yesterday, attending the launch of UK Disability History Month. Now in its 7th year, the Month runs from 22nd November to 22nd December. It continues to grow and continues to cover important disability issues through interesting events and useful resources, around themes decided each year by its founder and coordinator, disability rights campaigner Richard Rieser.

This year, as has become usual, disability activists, disabled people and our allies gathered in central London to launch the Month with an evening of interesting speeches and enjoyable entertainment based around this year’s theme, Disability and Language.

The evening started with writer and activist Maresa Mackeith reading out some of her original poetry. Maresa uses a method of communication which requires assistance from another person. This is usually known as Facilitated Communication.  She is a founding member of Quiet Riot, a group of people without speech who all…

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