Blue Sunday ~ A tea party for M.E

Anna's servere M.E struck hard and fast one week she was working the next she couldn't drive,walk and struggled to string a sentence together. 

When all other tests came back clear she was diagnosed with M.E as a last resort. 

Inspired by a virtual party , she decided to set up a tea party for M.E. Creating a platform to fundraise through as she was unable to attend events. 

Along with her family Anna held her first tea party, during M.E. awareness week in May 2013. inviting a handful of family and friends to join for tea and cake while donating the price they would pay in a cafe. 

The world's M.E. community uploaded photos on social media whilst donating. 

This is no easy task and starting months in advance gives Anna the energy to host her own event and the yearly virtual one. 

Since 2013 A tea party for M.E has raised a staggering £19,000 pounds for vital research. 

Medical professionals have had their thoughts on M.E changed after attending an event which gives much hope for the understanding of this dreadful condition. 

If you are interested in learning  more ,holding an event of your own or donating please get in touch with Anna via the links below 

https://instagram.com/tea_party_for_m.e?igshid=110w6swfbbd0j

https://linktr.ee/theslowlane_ME

https://www.justgiving.com/fundraising/AnnaRedshaw2020?utm_campaign=lc_frp_share_transaction_fundraiser_page_donation_received_-_nth_donation&utm_content=bb3996bb-babf-4d73-a3f6-8690f03adfc9&utm_medium=email&utm_source=postoffice&utm_term=1589457820546

Kara Jane~ the singer with a big ambition

Diagnosed with severe M.E at sixteen Kara Jane is a singer with a big ambition. Having lost the ability to walk she attended university in a wheelchair managing to complete a degree.

Symptoms took hold by 2013 she became bedridden. Now at twenty nine Kara relies on constant nursing care, oxygen and a urinary catheter.

Battling numerous infections has meant she has spent more time in hospital than in her own home. 

Despite this she has written many songs, the first titled "This is love" 

“Despite this she has written many songs, the first titled "This is love" released in April 2020. Following this, a BBC appeal was launched to help complete the album, from which she hopes to raise £100,000 for severe M.E research. "This is Love" proved that Kara is an incredible singer and songwriter, I for one can't wait to hear the rest of the album. 

Which is nearly complete and due to be released this August starting off with single ‘Baby Breathe’ being released on the first followed by the full album titled "It's still M.E" being released on the 8th. 

 If you can help with getting the word out about Kara's album please get in touch here: https://karajanesings.com/about/

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 ❤