Making Lemonade

Nobody can tell what the future holds.

That can be tragically problematic, especially when life's twists have been cruel and full of despair.

But, and I say this with total experience, just when you least expect it life changes. Nothing stays the same. Ever. 

What's that saying? Oh yes... 'when life gives you lemons, make lemonade'. 

Well let me just say that my many lemons are big, supremely sour and full of pith (that's right, lots and lots of pith, I tell you!). Therefore attempting to turn them into a tasty and refreshing beverage is a mammoth task.

Nearly impossible.

Nearly. 

Just when you think you are broken beyond repair, physically and mentally, it is possible to discover that you still have a lot more left to do than you thought.

I am proof. 

I mean physically I am still completely defined as attached to another object by an inclined plane wrapped helically around an axis (thanks to The Big Bang Theory for that definition. If you know, you know.), but mentally broken? Surprisingly not so much. Not as much as I thought anyway. I am a warrior. A quiet one, but a strong one nonetheless. 

It has been more than 570 days since my last blog post and a lot has happened, mostly horrible and out of my control which maybe I will write about in time. Time can be a luxury when you have a shorter than usual expiry date. It is really important to use your time wisely and not waste it. Make it worthwhile.

So what I have I been doing to ensure I do not waste my time? Perhaps what I do best, write. 

I have not changed. I am still me but I have allowed myself to become more myself than ever. My slight regret is that I didn't to allow this to happen sooner but that's okay. 

My care is still not perfect but it is livable, I still don't get to choose when I want to get up, go to bed, go to the toilet or have a shower and must stick to somebody else's schedule never my own which is not ideal but at least it is there.

The decline of my condition is still unstoppable which doesn't sound like a positive either but thankfully my life has not stopped and I am alive (no thank you to the people that exclaim to my face 'wow, you are still alive'! It does wonders for my confidence (sarcastic tone), you know who you are).

 

I have spent the last decade working with one of the most extraordinary ladies that I have ever met, somebody who accepted me for myself as soon as I met her. Dr Tuppy Owens.

Above: Dr Tuppy Owens and me.

London, 2019

I am privileged to call her my friend, colleague, confidante, advisor and biggest cheerleader.

When Tuppy asked me to help her complete and publish her autobiography, there was no other answer than 'yes'.

Tuppy has vascular dementia. Her autobiography was mostly written before this diagnosis but was left disorganised and lacking important details. It didn't have a chronological story and was difficult to read. However, the stories that she has noted are amazing and the life that she led has been nothing short of an extraordinary adventure.

Helping her achieve publication has been one of the most amazing experiences of my life. Even during the times when this has been most difficult such as the progression of her dementia, potential legal action from her ex partners and continuing to battle everything that comes with my own progressive severe disability.

Writing about her unique and fabulous experiences and speaking to the people who love her and hearing their stories has been the most humbling and joyous experience.

I am happy to say that on the 16th of September 2024, the autobiography of Dr Tuppy Owens was published.

On the 10th of November 2024, surrounded by friends, family and so much love, Tuppy had a party to celebrate this and her 80th birthday at the Heaven nightclub in London.

Dr Tuppy Owens, 2024

Image credit: Hugh Warwick

A true celebration of acceptance regardless of disability, sexuality or gender.

Tuppy's life is one that I am truly honoured to be part of. My healing and gorgeous, pink lemonade I managed to make because of her.

If you would like to read all about it (it also makes a lovely gift!), here is the link:

The Sex Lady on the Hill: The Extraordinary Legacy of Dr Tuppy Owens https://amzn.eu/d/hHzTcp8

It is available in hardback, paperback and kindle ebook.

Efforts have been made to ensure that this text is accessible as possible.

The kindle is screen reader enabled.

The printed versions use easy to read fonts with wide spacing.

Are you Coping?

No. I am struggling. 

My mental health is negative and I am not coping well. 

This is a difficult problem to confess because I have spent a lot of time trying to ensure that my blog puts a positive spin on living with a disability however the reality is that it is impossible to stay positive all the time. Reality can often make life difficult and present seemingly insurmountable objects directly in front of us. 

Case in point: an insurmountable object (sorry random guy), see below my photo from March 2023. My view of the stage from the wheelchair space at the New Theatre in Oxford, sometimes the objects in the way are literal not just figurative:

(After complaining, the New Theatre have refunded my tickets and have pledged to build spaces down the front of their auditorium. Let's just hope that their pledge is more reliable than one from Amber Heard..!)

My gradually degenerating physical condition is the biggest obstacle. It effects everything in my life and presents a constant battle for a meaningful and worthwhile life. 

When my last blog was originally written, a little over a year ago, I felt like I was winning albeit by a fingernail. The past year has been hit after hit and I am ready now to admit defeat. 

I surrender, take my white flag. I give in. 

What broke me? 

Not my Ataxia.

Don't get me wrong, my disability and all the shades of bottom waste that comes with it is the single largest contributing factor to the reason why I am defeated but living with Ataxia is entirely possible if you have the correct support. 

My Mum is amazing. Without her I would not be here. 

What broke me is the lack of support from adult social care services, the lack of medical services and provisions and the attitude of disregard and disrespect adopted by carers, professionals and members of the general public. 

I don't usually write depressing, long entries. I don't think it's constructive but to be very honest there is not a lot in my life to be positive about right now.

I am struggling and I am completely failing to get help.

 I have been telling adult care services at my local government council for nearly five months that I am unhappy and I need help. When you need care and are given a care plan it is supposed to be reviewed every year to make sure it is still for fulfiling your needs. My last care review was 2019. So I have not had one since for four years.

Calling, emailing and following complaint procedures does not work at all.

With my inconsistent care agency last year I had to stop doing my volunteer work which is one of my main purposes. I have been unable to do it because the carers were untrained and unreliable, my life was miserable. 

When I was changed to another agency last month I hoped that this would improve and I could regain  my purpose. Whilst this agency is a definite improvement, I still have a long way to go before I am happy or feel safe.

I am absolutely tired of repeatedly justifying my medical needs:

'yes I need to order more urine bags, please, I know that I placed an order 2 months ago, but you only send 2 months supply so I have 1 week left'.

Tired of repeatedly justifying my difficulties:

'yes, I cannot stand so I use a hoist, to get out of bed we must hoist. No you can't drag me,

Tired of repeatedly justifying my preferences:

please may I have my socks on now to stop my feet getting cold'.

Absolutely exhausted with asking on a daily basis for carers to shut the door before I undress, give me a blanket, let me have some dignity and not push me naked through the house etc. etc. etc...

On an almost daily basis I am made to feel like I need to justify my very existence. 

Provide evidence that my life is worth it.

Prove that I am not just a burden.

Its exhausting. I'm tired and way past the point of caring what 'the professionals' think. What is the point of trying to communicate with people who aren't listening?

Within the last month I have been given a child's bedtime, had carers message me and tell me to put myself to bed that evening because they were not coming, been hit in the face with my hoist, been elbowed in the forehead and have had a male sent to do my female only, single carer call (the male thing might seem insignificant but trust me, having my intimate areas cleaned and getting my wobbly bits out in front of someone within five minutes of meeting them feels humiliating and undignified enough, even when your personal preferences are fulfilled!).

What life I do have I owe very largely to my Mum, without her I would have very little.

She picks up all of the slack left by carers and helps me try and cope.

If you have bothered to read my unfortunate story to this point and you can relate in any way, I am really sorry. This is one of the times when I hope that actually I am completely alone in my struggle because I do not want anyone else to feel this way.

You also do not need to worry, despite my increasing despair I have no plans to remove myself from this existence.

I thought I might end this blog by telling you the strategies I am using at the moment to cope with the negative situations. That way if somebody out there is unfortunate enough to be having any issues that are similar, perhaps it will help in some way:

Inconsistent care  - this is particularly difficult for me because I am a planner, I like to organize everything and this makes it so that I am unable to. I am learning to take things day by day and not stress out when things don't go according to plan, which is often. This is not easy sometimes because it feels a bit like trying to change who I am, this is still very much a work in progress!

Being given a childs bedtime when you are not a child - streaming television service. Being put to bed early means that I have recently finished binge watching a marathon of the entire Marvel Universe in chronological order.

Undignified situations - music. Playing the music that you like from your own playlist when you are doing the necessary things is a big help. 

You need to also remember that your consent counts. It does not matter what your disability is, how disabled you are or how good your communications skills; your consent to any situation is necessary. You are human and if you do not consent you do not have to justify yourself. Your reason is enough.

Lack of purpose - concentrate on the friends and family that are close to you, the tiny moments of happiness rather than a big ones. Take everything slowly. One tiny bit at a time.

Keep going.

Life At The Moment

I wrote this as a guest article for Ataxia UK volunteer magazine, however due to my own weird personal circumstances at the time, I requested that they did not use it and it has been sitting in my files ever since. Upon rereading it I actually quite like it and I have decided to publish it on my blog, I hope you like it too and perhaps it will raise a little bit of awareness.

Being born in the 80's meant that being misdiagnosed was common due to lack of genome testing and specialist knowledge. I went through several incorrect diagnosis' before I was given the correct one at age 7. Friedreich's Ataxia (FA).

Having FA means that every day is a constant battle between my brain and my physical body. 

My brain is a motivated, energetic geek who just wants a good life. 

My body is a tired, weak, depressed stoner with constant brain fog.

My personal war between brain and body has been waging for just over 42 years and I am pleased to say that despite it getting increasingly difficult, my brain is still winning, even if sometimes just by a small margin. Still winning...right?

Something I did not have while I was growing up is knowledge of the available support of the ataxia community. I knew that Ataxia UK existed but it was not in the way it does now. 

I was overjoyed to discover its support during lockdown in 2020, its weekly activities were a lifeline for me when I was scared and shielding.

I now volunteer as a befriender which is a rewarding experience.

Being able to support someone while they battle their own Ataxia is priceless. Not only could a bit of understanding and support make a huge positive difference in the life of the person you are befriending but it also gives me a sense of achievement and friendship.

Disability takes a lot of abilities away but if just showing up and being a listening ear enables someone to continue their fight, then it's time well spent. Bring it on! 

Since my retirement from paid employment about 12 years ago, due to my disability, I have volunteered for many things. At the moment I am very happy with my befriending and volunteering as a crisis mental health supporter for SHOUT.

Check out the website for Ataxia UK here at https://www.ataxia.org.uk/

Getting Some Klarity On My Situation

Since 2020 and the horrors of the Covid-19 lockdowns and shielding (when people were dying and terrified but no.10 was a party zone), there has been a rise in remote working.

This was initially an inconvenience but for some people who cannot leave the house or find it difficult for reasons such as transport or physical condition, the rise of remote working was ideal.

So, I thought, what if I could? What if I could, once again, be one of the working masses?

The short answer is unfortunately, no I cannot do it but I am, however, very proud of what I did achieve as a result.

For more detail, read on.

I finished paid employment 11 years ago and this was due to the negative advancement of my physical status. I could not no longer keep up with my responsibilities. Now I do voluntary work a few times a week and I began to wonder whether I would be able to take on paid employment remotely. I joined LinkedIn and had a look at some of the available positions.

There seemed to be plenty of remote jobs that I was qualified for but because I have not worked for 11 years and I did not know how my physical condition would be affected, I decided that it would be sensible to start with an unpaid internship. Unpaid to keep the pressure off while I figured out if I could cope and an internship to give me work experience and to get me used to working again.

I applied to Klarity.oi for a 6-week internship as a content writer for their new online medical library.

All the people that I met there were nice and supportive and I am proud of the articles that I produced. I know now that I could not hold down a job permanently, it was just too much for me. I found myself getting too tired and that it affected my disability negatively but I am pleased that I gave it a go and I am really happy with the articles. Below are links to the website via my articles. Please have a read and and check out the rest of the website:

What Happens When Your Heart Stops

Grey Skin Colour Heart Disease

How to Optimise Sleep for Health and Performance

As for me, I am going to stick with my volunteering with SHOUT as a Crisis Text Line Support Volunteer and a Befriender with Ataxia UK these are only for 5 hours per week and are extremely flexible which is much better for me to fit around my care routine, what I can manage and still have a life.

For me volunteering is very important, purposeful part of my life.

Building a Future

 I don't like being called an inspiration. 

I am not. 

I get called that for simply living my life with my disability.

I'm not doing anything special, I'm just kind of getting on with things, like most people. Just because some things are harder for me than they are for the average individual does not make me inspirational.  

Not one single person on the planet does not have some problem to deal with, emotional, mental or physical.

Going through life does not make you in anyway an inspiration. 

I have written a lot about the importance of having a goal, a dream. Something to aim for, aspire to.

Build your own future. 

My nephew, Angus, inspires me to do this.

He is not an inspiration just for living everyday with his disability, he is inspiring because he uses his situation to the absolute best of his ability. He aims to show everybody not to accept their own limitations without putting up a fight.

This is a valuable lesson that we can all learn from. Just because the odds are against you there is never a reason to give up.

Like many disabled people, quality of life depends on how good the equipment you have is. Decent equipment costs money. Lots of it. This is why we must fundraise for Angus to keep fighting.

WCMX involves taking your wheelchair onto the skate park and riding it like a BMX.

 In only a few months Angus had pushed himself from a child using a wheelchair who could not even remove the anti-tippers, to a child who is confident and determined to compete and succeed in a sport popping down kerbs and throwing himself down ramps.

It was a bumpy road to get there. Mountainous in fact. Angus was born with Spina Bifida Myelomeningocele. This is the most severe type of spina bifida and basically means that he was born with a hole in his back exposing the spinal cord.
This affects many parts of the body from walking to balance, from speech to continence and even vision.

Everyone with Spina Bifida is different.

It all began in June 2018, aged just 7, Angus, inspired by watching Youtube clips of Aaron Fotheringham and Lily Rice doing WCMX, decided he was fed up of not joining his brothers in the skate park.

No more sitting on the sidelines.

Angus decided to fundraise for a lightweight chair to help him reach his dreams...and keep up with his friends!!

T-Shirts were donated by Oliver signs and embroidery for his 8 mile roll down the Thames and a greeting arranged by the Lions club (links below).

Angus manages to wheel over three miles independently and makes several local newspapers, he is also nominated for two Pride of Reading awards.

Determined schoolboy hopes to become wheelchair moto cross star.

Angus’ videos on social media and resulting media coverage became widely seen and he had the opportunity to meet his heroe's, Aaron Fotheringham and Lily Rice. Photos below:

In October 2018 Angus received life changing funding from Princes Gate Trust for a bespoke WCMX chair from Roma.

In August 2019 Angus competed in division 5 of the WCMX World Championships in Cologne. He worked hard and gained 5th place!! Not bad for a boy who only started riding 11 months before! It has been a life changing experience for him. Angus is not only growing in spirit but physically too and needs a chair to continue.

Pictured below is Angus competing in the WCMX World Championships in Germany in 2019, aged just 9.

Featured in SHINE magazine, the publication for people living with Spina Bifida:

Angus has grown and now needs £7000 to continue and fund a new WCMX chair. Any support is appreciated.

A Facebook Fundraiser can be found using this link.  Even a tiny donation adds up and anything you can give will be gratefully received. Even just sharing the links helps reach more people.

If you would like to donate via PayPal or bank transfer or wish to offer support in another way, you can email me at: emmabuckett@gmail.com

A raffle is being held on the 20th of November to help this cause and some of the kind prize contributors are:

Experience Days

Caversham Lakes

Java Whiskers Cat Cafe

Sincere thank you's for all support.

Be the Flame

 It is difficult to not just withdraw from life. 

A pandemic still ravishes the Earth and I am still just going day to day! 

I am certainly no expert on how to cope post lockdown, my mental health can be dire at best, but here are my 5 suggestions how to move forward with:

    Socialise.

Unfortunately fairy tales do not always happen. Neither a relationship, nor your true love, is just going to appear on your sofa whilst you binge watch Netflix. You are going to actually have to get your hands dirty and interact with people. I know that the idea of this sounds horrific to the people with social anxiety and the first step will always be down to you. Even this may sound scary believe me the benefits will be major. Not only will socialising raise your confidence, you will also be able to make new friends and meet people you would never usually have met. 

Although there is no substitute for real face-to-face contact, social media and video chat allows people at home to be able to have contact with others without even leaving the house.

   Remember, you are human.

You have faults and this is a human condition. You might have more than others to deal with because of your disability but don't forget that everybody has these faults and it is not just you.

   Remember, the others are human.

It is easy to get lost in your own head but remember to peek out at others, be understanding and patient. Remember that just because you cannot see somebody's disability does not mean that they are not struggling.

    Smile.    

A smile can go a long way A smile might be the only interaction that an individual needs that day to make them feel better. A smile costs nothing to give and not only makes you more attractive but makes those around you feel happier.

    Be the Flame.

This simply means that when you are feeling as good as you are able to, then you come across to others in the best possible light. The simplest way to do this is to do the little things that make you feel good, don't be afraid to wear the dress/shirt that you have been saving for a special occasion or to put on the aftershave/perfume that you like to wear when going out. Put on that special piece of jewellery that you don't usually show off. The idea being that if you do the things that make you feel special, the good feeling will spread and this will attract others to you like moths to a flame.

Be the flame.

Unexpected Side Effects and Gratitude

 Last year I spent some time making a video for Ataxia UK detailing most of the manky things I have to do everyday and how I cope with my disability. 

Watch it here: It Works For Me

I have no intention of becoming a vlogger (I am certainly no where near as good as Joe Tracini!), the effort was a lot even though I did enjoy it.

Through the praise and thank yous' I received through honestly portraying my daily life I learnt that your own actions, however small, can have unexpected side effects. Good ones. Always be kind. Pass on the positive.

A mention in a blog by one of the strongest men I have met:

Not Ashamed Anymore by Richard C Brown MBE