Covid,Chronic illness and disability

Covid has affected us all,I was curious to what the differences were within the chronic illness community. Many of whom were already isolated. 

Not being able to have my regular oxygen treatment means I have got worse. I  have  started the rehabilitation program again and am trying to exercise enough but over do it so my joints don't start to stiffen up. 

When lockdown started a lot of us thought people might start to understand, some did but for many it was the opposite.

 I saw many ableist posts from people claiming it's impossible to work from home. Thousands of us and our carers do everyday, we have no choice. 

Without a thought for how others cope when this situation is their lives. It amazes me people's lack of effort in trying to wrap their heads around  the lives of chronically Ill people. 

99% have lost friends,jobs,education or family through lack of understanding. I am used to the way I live,what plays on my mind is other people's perceptions. Many others who I spoke to said the same.

They feel left by society as everything begins to ease. confessing it seems unfair to them that pubs,restaurants,cinemas and theme parks can reopen whilst they can't get access to treatments. Being in a hospital is a whole different thing to being socially distanced somewhere,although I feel there must be a way to get them the treatments they need. Another one is careers, 

I read a thought provoking post from Jessica Taylor-Bearman on how her husband is her main career, he became ill leaving her juggling a baby,her husband and herself. A Lot of parents of disabled children have been hit hard. Struggling, balancing everything whilst looking after their child or multiple children. 

As a family we have been very lucky managing to get priority delivery slots, despite some coming at really awkward times,as well as this we have had government food parcels. 

I would feel so much better going out if I knew everyone was covered up, I know many others feel as I do. 

This blog was an interesting one for me because most of my blogs are full of facts, I suppose these are facts in a way. Part of me wanted to expand upon some of the points I made but I think they are pretty self explanatory. 

All about Access Glos

Inspired by his own personal experiences Christian Drewitt Founded Access Glos in April 2018. 

Christian believes that everyone should be able to have the same quality of life as others, access Glos has two aims: Its first being able to help Gloustershires's businesses understand the importance of accessibility. Through giving reports and advice on the matter and for business to see this is not always a costly task. 

They  hope that by doing this they  raise awareness of the challenges many disabled people face. 

 uploading reports online makes the disabled community less afraid to leave the house as they know of accessible venues. 

Accessibility isn't necessarily the obvious, for example: 

•Emergency cords in disabled toilets can be tied up or have pull rings making them unusable. With some toilets not having one all

. 2010’s equality act states the size limit for  toilets must be 1500mm by 2200mm or larger, many are smaller or without an accessible layout leaving people in an awkward position. 

.Doors are another huge,automatic doors would be best but could be costly. A cheaper option would be wide, lightweight doors would allow for easy access. 

• color schemes are super important as black,shiny or mirrored surfaces can be confusing for people with dementia or sensory issues. 

. Many individuals don’t know the reason for the  use of mirrors in lifts,mirrors enable wheelchair users to see what is behind them when they enter or leave a lift.

Christian hopes to improve the streets of Stroud Town and  has recently audited every street in Stroud's Town, noting areas that need improvement, this in depth survey included. Quality of paving, dropped kerbs and pedestrian crossings and much more, his report will be shown as evidence to enable funding, improving the quality of Stroud's town. 

Christian told me "This is hugely exciting and it is a great feeling to be doing work that is actually helping to make physical differences to areas in Gloucestershire."

The team have been working on improving Stroud's train station, as well as the much needed adjustments to disabled toilets. Discovering that few of Gloucestershire’s disabled toilets met the requirements. 

Christian’s advice for anyone wishing to make their event, venue or shop accessible is to research accessibility,  his team are always happy to speak to anyone regarding questions they may have. 

He would  advise people to tell others the changes made and the effort they make in order to become more inclusive. Access glos's  surveys include advising businesses on how to cater for disabled employees, including making sure their business is accessible and that they have had the correct training. 

Running access glos has put Christian and his team in touch with many incredible people, 

One example being the owners of ADI Access, the producers of roommate, a small box that goes inside a diasabled toilet to aid the visually impaired. Roommate describes the surroundings meaning no assistance is required for them to use the loo. This is an amazing idea and would be a brilliant addition to any disabled toilet  

Over the next few years, glos wishes to work with more of Gloustershire's repeating similar projects to Stroud's. 

I for one found this blog  helpful and informative. I have come against my own issues, my power chair is brilliant but being stuck in a disabled toilet is not. venturing to Stroud’s  feels too dangerous. If I managed to get there many of its shops are very small or have steps 

It’s going to be such a long time until I'm  allowed shopping, but I hope when I can things will start to change. 

If you want to get in touch click the

link below:

http://www.accessglos.co.uk/

All about CISFAUK

1 in 10 families will at some point be affected by Chronic Illness. Joanne Kelly saw a huge gap in support for those in need. Deciding to do something she set up Cisfa January 2017, becoming a registered charity August 23rd of that year. 

U.K based charity Cisfa’s (chronic illness support for all) aim is give a voice to the voiceless as well as allowing them access to much-needed support groups, where they can share worries, concerns, troubles and just generally vent their frustrations to fellow chronic illness warriors. 

Cisfa offers a hospital chaperone service, community groups and coffee mornings, a care package scheme, allowing for nominated individuals to receive a box full of surprises. 

Along with this Cisfa also have on offer a buddy scheme giving someone in need access to a buddy who can attend hospital appointments or lens a listening ear. 

Their wish is to give the chronically ill emotional support online and are currently in the planning process of creating their own centres. where people will be able to meet in person whilst being accessing support for their physical and mental health. They plan for volunteers to give students talks on the emotional impact of chronic illness. 

Combating Chronic Illness is a daunting task, especially for those who have to endure it. What makes Cisfas even more incredible is that their volunteers all live with chronic illness. Giving them an advantage as they have experience enabling them to offer magnificent support to those in need. 

I came across this amazing charity from Miranda Hart who is donating her half of the profits from her online shop to CISFA and ASTRID who help get the chronically ill into employment. interested in volunteering? please get in touch with the CISFA team.

Instagram: https://instagram.com/cisfa_uk?igshid=1p6tf2o1w6ocv 

Facebook: 

https://m.facebook.com/cisfauk1/ 

Twitter: https://twitter.com/CISFAUK?s=20 

Email:

Cisfauk@gmail.com 

Or fill out the form on the website 

https://www.cisfauk.com/ 

ME awareness

My name is Molly, I am 21, living without a correct diagnosis and medication fourteen years I progressively began to get worse until I became severely unwell. Having now suffered from Chronic illness and disability for the past 7 years. After a long battle I have finally managed to re teach myself many of the things I lost.

Not long ago I began my own disability blog, raising awareness on disability inclusion and how hard it is to feel included within society. 

 As it is Chronic fatigue syndrome awareness month I thought that would be a good place to start as my first post here.

Myalgic encephalomyelitis (M.E) or chronic fatigue syndrome (CFS) affects around 17 million people worldwide. Most of those being women between their 20 - mid-40s, but can occur in children or teenagers. Altering one's life forever, creating debilitating symptoms many of which have drastic consequences. 

Ailments include: 

Joint Pain

 Brain fog 

Extreme fatigue 

Migraines 

Sore glands (with no sign of inflammation) Dizziness 

Feeling nauseous

Flu-like symptoms 

Heart palpitations

 Low or fast heart rate 

Sensitivity to light or sound

 Treatment for M.E rarely works leaving people to find their own answers and cures. In my case when having my last appointment with my pediatric M.E consultant she told me that adult care would be pointless, as I would "know more than them" bearing in mind this is after 6 years of failed treatments, my only treatment being access to Graded exercise therapy (GET). This requires sticking to a daily routine. An extremely hard task to accomplish as symptoms constantly go up and down. Personally, I find routine impossible as is the case for most people with this condition. A multitude of sufferers is disclosed as attention seekers, (even by doctors) accused of fakery recorded depressed or anxious.

 This isn't the case, crippling pain along with can cause depression or anxiety, but this is not its starting point. People's perceptions play a massive part in this. I feel my school could have done more to help me, instead, they failed to inform themselves. A failing body meant I couldn't manage a whole day. Leaving me to feel extremely judged by the teachers, most of whom failed to adapt for me. At a time I felt most vulnerable. 

Looking back I have wondered why no one other than my parents put up a fight for my basic human rights. Or why no one seemed to educate their children so they could. Without necessary adaptations accessing vital services can be unnecessary stress. People shouldn't feel disincluded because needs that could be met simply aren't. You don't ever imagine that you will lose the ability for accomplishing tiny tasks. 

Or that you could have your whole world is torn away within a matter of years, months or even days. Compassion is the key to being there for people, the way to be better is to learn. I try hard to educate myself on other people's ways of life, knowing from experience the feeling of judgment or having myself looked down upon. I've been called lazy, whilst one doctor told me to "get out of the car" after a good few minutes of explanation as to why I couldn't complete a supermarket shop. 

It made me feel dizzy and faint. Being inclusive isn't that hard. Read biographies, watch documentaries, join support groups, find social media accounts raising awareness alternatively ask questions. In a world where doctors can't get it right, you do begin to feel remarkably let down by society. Everyone can do their bit to help even if it's the smallest amount. 

M.E is not laziness, it's not fakery or attention-seeking. It's life demolishing fatigue, pain, missing events, partially missing out on life. It's the fear of being thrown to one side, whilst everyone lives their lives throughout the time they forget you exist. Your lockdown is a couple of months my lockdown will most likely last a lifetime.

Interview with Ade Adepitan

Born in Lagos Nigeria Adedoyin (Ade) Adepitan. Contracted Poliomyelitis (polio) at the age of just fifteen months. As a result of this Ade was left with only partial use of his right leg and none at all within his left. His parents decided to move the family to Plaistow in east London, allowing for access to better medical treatment and the chance for Ade to be taught how to walk using iron callipers. (an Iron walking frame) 

which he then continued to wear up until the age of 17.  

Ade had a real passion for football, spending many of his young years dreaming of playing football for England.

As Ade grew up he gained many friends many of whom helped him get around by pushing him in a supermarket shopping trolley. It was on one of these many outings that he was spotted by two local Physiotherapists, Wen McGhee and Kay  Owen. Who both worked teaching young disabled children in the east London catchment area how to use sport as a way to become more independent despite their challenges. 

Becoming intrigued Ade then travelled to Stoke Mandeville in Buckinghamshire, where he was introduced to wheelchair basketball. This was the day Ade's life was changed forever as from that moment, his biggest ambition was to train so hard he gained a spot on the Great British Paralympic wheelchair basketball team. Then to go on to win a medal in the Paralympics for Great Britain. 

Being selected to represent Great Britain in the Paralympics of 2000 held in Sydney. His teenage dream began to come true. 

These games were very significant for all those involved as the brilliant media coverage enabled them to gain public support. 

opening up new television opportunities.  Shortly after the games he was featured in Playstations double life advert, starred in a documentary titled "Hoop dreams" for cable channel and also presented a national T.V wildlife show. 

This gave Ade even more perseverance enabling him to go on to win a medal in 2002 whilst competing in both the Paralympics and  European championships .

 picking up both a Bronze and Silver medal. 

His career went from strength to strength as he then in 2004 where he also won a medal. 

In 2005 where he again picked up both a Bronze and silver whilst again competing in the 2005 Paralympics and European championships. 

Nowadays most of Ade's time is taken up by television work, mainly presenting wildlife documentaries where his determination is really on show, no matter how tricky the terrain he will try to cross it. 

It was one of these shows,  I was introduced to Ade and his work. I have no idea why but this was a time I really needed some motivation, something or someone to actually prove to me that even with my struggles I could still achieve all I wanted to. 

I'm feeling much like that at the moment, something I spoke about in my last blog but seems to still be trying to come back from.

Ade has also written and released a series of children's books titled "The Cyborg cat" , based in part on his life growing up with a disability. 

Upon asking  him what he hopes to achieve with this series he told me he would "like all kids to see that it’s ok to be different to realise the importance of a good, genuine friendship but to realise that all of us can be superheroes if we believe in ourselves." He also believes that the younger generation of around  30 and below have a much more positive perception of disability than when he was growing up. However, he accepts older generations can still sometimes struggle with prejudices they grew up around. 

And says "we need to be more empathetic as a nation." Being in the act of  "Looking outwards as well as inwards" whilst we "care for ourselves and be proud as a nation." Ade considers this to be very important and expresses the obligation to "try to understand and help people who are less fortunate" 

Connecting on from this Ade disclosed his feelings on the Corona Virus pandemic talking of the desperate need of cooperation in these challenging times he told me "The Coronavirus pandemic has shown that whether we like it or not our world is interconnected and we are interdependent on each other. 

"When China has cold the whole world sneezes!! If Africa nations keep struggling economically then at some point we will all pay the price. That could be through the spread of viruses like polio or Corona." And that "poverty in African nations leaves their younger generations vulnerable to being indoctrinated into negative philosophies. Or when " you feel like the world has left you behind and nobody cares then you become easy pickings for recruitment into terrorist organisations." Ade confesses that "If we are to survive as a race we cannot afford to leave anyone behind." 

One of my ten questions to Ade was advice about getting into sports or entertainment. Like a lot of celebrities have said in the past he agreed you have to make sure it’s for the right reasons and "because you have a passion for your sport or whatever area of entertainment you’re trying to get into." Suggesting that " If you’re in it just for the fame and money then you’ll struggle to find true happiness" 

I'm sure the majority of you will be aware of the "We are Undefeatable" campaign that did the internet and social media circles last August. 

I myself feel there's a lot more that could be done to make sport more accessible, especially for children. 

Disability sport is rarely shown on television so it was nice to see Ade's views on this, he also feels that "the only way to make disability sport more accessible is by increasing visibility. " as well as allowing it to be shown on "mainstream media all the time just like mainstream sports." 

Having been impacted by sport himself he knows what a powerful tool it can be and saying it is " a very powerful tool for life if it’s taught in the right way." Ade also states that he wouldn’t be where he is today or have achieved many of the things he has achieved if it wasn’t for the lessons he learnt from playing sport.

As I'm coming to the end of my blog I feel it is time to talk about achievements,

Ade was part of the bid team that went to Singapore in 2005, helping London win the rights to hold the Paralympic and Olympic Games. Which he described it as a "historic and game-changing moment that I will never forget." 

Ade's advice to anyone struggling with a disability is to "Never give up"

I hope you enjoyed reading this weeks blog. This is the most excited I have been about a blog and I'm so  happy with the way it has turned out. I also wanted more of a challenge so I decided to put the questions at the end but included them within the text. Something in which I never do. So I really hope it has worked and makes sense. 

Thank you so much for reading ❤

Disability awareness

This is something I've been wanting to write for about a week. But I've been so upset and had no idea where to start. 

I said on Instagram a few days ago that it is really important for me to document these things meaning everything that happens to me as a result of a disability. Especially the ones people don't see or value as being important. 

Since the start of corona I've seen so many ableist posts for so many people from different walks of life, I spend 90% of my time at home most of which is spent asleep or resting. People have been saying that you have no purpose at home or that you can't achieve anything from the comfort of your own home. 

As a person with disabilities and one who can't get out hardly at all it has really got to me. I work so hard at many things including staying happy and as well as possible.

 Something that probably seems obvious but the more I think about it maybe it's not. I have to put so much more effort into doing anything than an average person does. 

I always tell myself that at the end of the day, I've put more effort in so it means more than what others do. I pride myself on that mindset a lot when I get down in the dumps. 

The media has much to play in people's perceptions of the disabled community (some of my best friends) many people think we are worth less than others. Simply because our reality is, without stopping to think about what lifeit is like for us. 

I've spent the past 7 or 8 years trying to survive in my reality of self-isolation. I've spent about 4 or 5 of those years rebuilding my life. Teaching myself how to read and write again. Something you never expect to have to do. I succeeded but as a result became more aware of what it is like to live with severe disabilities where that is your whole life, forever and always. If at all ever possible I would love for the opportunity to give that back to others who need it. To re-teach them or at least allow them access to literature in one way or another. 

These comments made me question if everything I'm proud of is just completely pointless because it's not what others are achieving. I'm not even on the scale of small accomplishments if you put it that way.

 I don't know who will read this but whoever you are I bet you know me well enough to know my lack of education is my biggest insecurity. It sounds bizarre yet it's something that always gets me down. Especially on exam results day or anything of the sort. I'm extremely sensitive about it. 

I also massively struggle with self-confidence, another thing I'm pretty sure is partly related to schools and also in part how again no one seems to see how hard I work at everything I try to do. 

Thinking about all the stuff I failed or haven't achieved and all the stuff I want to do but can't. 

I've told a handful of disabled friends about this who have told me I have every right to be upset and that this is extremely ableist. One disabled activist even replied to my comment on her post (the post was about similar things) saying that it was ableism at its highest. 

I have massive respect for these people, as it is something I'm trying to do myself, considering what I have seen lately it makes me think in failing in this. My main reason for writing this blog about my own experiences as well as others is to include other disabilities that I have no or little knowledge of. That way I learn as well as whoever reads it. 

What she said gave me so much reassurance that I wasn't being overdramatic. 

Whenever I see people who I went to school with posting about achievements online I always think to myself things like I knew you were going to be successful because everyone liked you ect… but I wasn't purely for the fact I was a sick child. That's not exactly true, well it is partly these people have mostly had a better chance than me to be able to achieve things. 

I've slept instead. 

I've been trying to work out what I have done that has really been able to make a difference. I've done a lot of charity work for disabled young people which is what I feel my life is all about. I feel my purpose is to somehow help sick people. I've done all my Swan Princess edits, blogs and lyric videos which despite what anyone else thinks means so much to them. 

As well as me because It's given something to do and lifelong friends who are some the nicest people I have ever known. I've also done various edits for other film companies and things. Something that of able to at some point would love to take further. 

I'm so proud that I can now both read and write again, also blog even if I am just venting and no one is listening. 

I know I shouldn't care what other people think of me or their perceptions of my life or the way I live it. But the thing is I'd say at least 95% of my friends have some form of disability, so I feel hurt for them as well as me. 

Things like this are seen so much in the media, who play so much with people's perceptions of disability and chronic conditions. For some reason, people believe them. There are so many disability activists who do incredible things, I've spoken to so many young disabled actors who have so much to say on the matter. It's truly inspiring. 

Ones who are already doing incredible things for the likes of us and ones who I know will continue to do so. 

No one should have the right to say me and my friends are worth less than anyone else. 

Education is seriously needed on the matter, language education. I know CBBC does an incredible job at showcasing disabled talent, but education needs to be spread across the board. Ask questions, ask how things should be worded and please please think before using ableist language. I'm absolutely exhausted. But I wanted to try and promote disability education. For me and everyone who right now is feeling the same for similar reasons. To all my disabled friends I'm so sorry but just know that I'm here for you and I love you. Also, I think you're brilliant 🌟 

Update from today: I did a mass tweet along with a few Instagram DMS of people of whom to write blogs about last night. An M.E charity has already responded so I'm in the middle of figuring out questions to send them Anne Haggerty also replied to my tweet with a yes so I've contacted her agent to make sure I've got the right address and to check the questions will go to the right place. 

My main especially now is to keep spreading disability awareness, inclusion and hope. I just really hope at least one person is listening ❤