Livin' The Vida Lockdown: Day Sixteen - Life With A Chronic Illness Right Now

Livin’ The Vida Lockdown: Day Sixteen – Life With A Chronic Illness Right Now

I woke up this morning properly and about 90% of my body hurt. I knew what was happening before I even opened my eyes. I’d spent most of the night tossing and turning, fully aware of what a pain in the arse I was being but I couldn’t get comfortable. Fibro has been rumbling along during all of this but today, again, it decided to kick my arse.

I’ve been debating about whether to write about Chronic Illness right now when so much has been going on health wise. Does it matter? Fibro doesn’t put me at a higher risk (asthma is another story) but as with any illness, Fibro would put up a fight at the same time taking me longer to get better. So I’ve been relying on family, friends and food deliveries.

That said, pandemic or no pandemic I’m still living with it every day. I know things could be worse, but that doesn’t take the pain away. Right now I’m not taking my painkillers of preference as they are part of the ibuprofen group which people have been advised to avoid. So I’m plodding along with paracetamol – which doesn’t do much at all.

I’ve felt for a while I couldn’t talk about Fibro or how it is right now, despite the fact that stress is a huge trigger for a lot of people with the illness. I thought, well when people are dying I can’t seem like I’m complaining but that was incredibly isolating. Slowly, I’ve seen other spoonies say that they feel the same way.

So I guess I wanted to write for my fellow spoonies or anyone living with a long term illness to say that it’s ok to still feel frustrated, sad or fed up with your illness right now. It’s ok to struggle with your health in another way because our illnesses don’t care if there’s a worldwide crisis, our bodies are doing what they’re going to do.

Am I Disabled?

Am I Disabled?

Being able-bodied and minded is something I think most of us take for granted until it impacts us in some way. I’ll admit it wasn’t something I thought much about myself until my accident. There’s a grey area though when your life changes in a physical or mental way that – at what point are you disabled? Who decides?

I (wrongly) thought that you had to be recieving some kind of disability assistance to be classed as disabled, however Citizens Advice states that:

“The definition is set out in section 6 of the Equality Act 2010. It says you’re disabled if:

  • you have a physical or mental impairment
  • that impairment has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities

I have a long term condition that impacts most of my life. At my worst I struggle to move, to walk, have bad fatigue and am in so much pain I can’t concentrate on anything else. I’m not looking for sympathy that’s just the way it is sometimes. It meant I had to change a lot of things and reconsider how I was going to live the life I wanted to live with certain limitations.

Disabled is such a loaded word. We’ve been shown certain images of what disabled looks like – even if, slowly, we are becoming more educated about invisible illnesses but we’re not quite there yet. People still eye me when I sit in a seat for those who need it if I don’t have my walking stick. There have been times that I’ve taken my stick when I’m feeling ok just so I don’t get dirty look.

To me, I am disabled and I refuse to be ashamed of that. I still feel strange saying that out loud – I worry about not seeming ‘sick’ enough. I worry that I won’t be taken seriously but I’m working on it. Talking about invisible illness is a great start to making sure more people are heard and understood.

Changing the narrative is something we can all do together. Instead of seeing disabled people as those who are to be pitied or always seen as ‘brave’ for simply doing things anyone else would do. Does it often take more effort? Yes. Is it annoying? Definitely.

I’d love to hear your stories below!

10 Thoughts Spoonies Have Over The Holidays

Blogmas 2019: 10 Thoughts Spoonies Have Over The Holidays

Ah Spoonie life, aren’t you lovely? Christmas is one of my favourite times of the year buuuut my Fibro doesn’t always play nicely. If you’re a regular reader though you know I’ll poke fun at myself when I can because you have to laugh at the ridiculousness of it all.

So, I thought I’d have a little bit of fun with this one because I know a lot of my Spoonie friends are feeling the same

1. I’m going to pace myself this year

Personally, I alway start with the greatest of intentions, I’m going to chill out, have rest breaks etc. That said though, I’m not the best at pacing myself at a normal time of the year – let alone the time I’m allowed to be super extra.

2. If one more person asks me if I’m ‘better yet’ I may start throwing the Sprouts

WHAT PART OF CHRONIC ILLNESS DON’T YOU UNDERSTAND.

3. I wonder if I could make an advent calendar for my meds to make them more festive…

Always looking for ways to be more festive!

4. Can I put a new body on my Christmas list?

Don’t say you haven’t thought about it…I know I have. New central nervous system? Come to mumma!

5. How do I know/ am I related to so many people?

Seriously though, everyone wants to meet up at Christmas for a catch up or a coffee…because it’s Christmas/the holidays.

Of course you’re (mostly) grateful that there are people that love and care for you but trying to fit them all into the 24 days before Christmas on limited spoons is tough.

6. Yes I have a mobility aid. Yes I’m XX years old. Yes you are in my way.

I don’t know about you but when I’m out in the hustle and bustle of Christmas shopping and I take my walking stick it feels like everyone is either giving a quizzical glance or simply ignores it and me, particularly on the tube, where I need to sit down.

7. How many times can I say no to invitation before I seem like a Grinch?

This happens a lot when your non-spoonie friends want to hang out/ go drinking/ go for dinner etc. I’m usually weighing up my energy levels so I can work, socialise, clean my flat etc. I end up feeling like a TOTAL Grinch minus the cool outfit…

8. Naps, all of the naps, PLEASE

Need I say more?

9. My New Years Eve includes pjs, blankets and falling asleep way before midnight

I haven’t been ‘out out’ on New Years…ever. At most I’ve gone to a house party where there’s no pressure, no queueing for drinks and you can move around. That said, my perfect New Years is definitely on my sofa in cosy PJs with a pile of chocolate and my laptop.

10. It’ll be more relaxing next year…maybe

But I’m yet to have a relaxing next year!

Are there any other things my fellow Spoonies would add? Let me know below.

Book Review: Unbroken – Martine Wright

Unbroken - Martin Wright

One moment can change your life

On the morning of the 7th July 2005 Martine Wright decided to let herself sleep a little later and slightly changed her route to work after celebrating London securing the 2012 Olympics. By making these changes she found herself on a tube with a suicide bomber. After he detonated his device, Martine’s life changed forever.

In the UK the 7/7 bombings went down in history. I remember being 11 years old and hearing it over the radio while in the car with my Mum, while my Dad tried to get hold of his best friend. It was so surreal that this had happened in London and the first time I realised these things could happen to anyone.

The book starts with varying perspectives of those closest to Martine as well as herself as they all heard about the 7/7 attacks. We hear from her now-husband, her parents, siblings, friend, surgeon and herself. Her story is one that not only inspired but was also difficult to believe.

After being found horrifically injured a courageous and kind policewoman and fellow passenger stayed with Martine. Both of her legs had been blown off and she was fading fast. So much so that when she arrived at the hospital she was referred to as Hotel Unknown until her family found her.

We follow Martine from the moment she was clinging to life, throughout her recovery. She doesn’t make light of the situation she talks about the dismissal that she wouldn’t walk again, the tears she cried and times she wanted to give up. Despite everything, the months she spent in the hospital she continued to fight for the rights of those injured and the families of those killed in the struggle for financial justice.

I spent the whole book cheering Martine on, wanting her to live her life as best she could after the bombing. So, did she go back to her day job and settle down? Not quite. Martine went on to become a Paralympic hero in Volleyball, she represented her country in the city she loved with all her heart.

This is a story of survival, spirit and determination but also being human. Martine doesn’t claim she’s perfect. She shares her doubts, her struggle to carry on at times and more. However, this made me laugh so much. She’s genuinely funny and learns to live and laugh at herself.

Martine is a hero and this was an incredible read. Was it tough at times, yes but I came out with a sense of determination because if Martine can get through that, I can get through my struggles. Of course, I gave this 5 stars. A truly brilliant story and one you should pick up.

Sunday Seven: Seven TED Talks you need to watch

I have spent a lot of time in the past few years watching various TED Talks, it’s one of my favourite things to do when I need some motivation. I thought I’d share with you some of my favourite TED Talks, these are just 7 of many but I think they’re important because of the messages they give.

 

How do you define yourself? – Lizzie Velasquez 

Lizzie was deemed the ‘World’s Ugliest Woman’, she’s honest in the fact that of course she cried but what she did next was incredible. Lizzie came back fighting, not only does she educate people on her illness but she also knows when to joke and make light of the situation. Lizzie wanted to be a motivational speaker and after a google search and a few more steps Lizzie did what she set out to do and is one of the most inspiring people and even has her own documentary.

We gotta get outta this place – Piper Kerman

With all of the hype surrounding Orange is the New Black, a lot of people forget that it is somewhat inspired by a true story. For me the book and this Ted Talk are preferable and talk about the real issues and day to day life of prison. Piper’s talk was eye opening and a rally cry for change. I’ve also reviewed her book here.

A broken body isn’t a broken person – Janine Shepherd

I only came across this talk today and it was emotional to watch. Janine was in a horrific accident meaning which broke her neck and back and left her hospitalised for months. I love this talk because I understood a lot of what she was saying about your body breaking and letting you down, in fact it was very emotional to watch, because I’ve learnt similar lessons.

Everyday Sexism – Laura Bates

I watched Laura’s talk before buying her two books. I’ll be honest I wasn’t sure before I watched it but after I realised that there is so much that we are told to ‘just deal with’ when we shouldn’t have to. Laura took a stand and I’m so glad she did, we need more women like her.  

Confessions of a Bad Feminist – Roxanne Gay

This was so important to me when I was trying to embrace feminism because she said what I felt like. Roxanne understands that sometimes you like things that ‘aren’t feminist’ and makes fun out of it as well as reminding us that feminism is so huge that it means so many different things to different people.

I got 99 problems…and Palsey is just one – Maysoon Zayid 

I love Maysoon, she’s absolutely hilarious. One of the things that can make people more comfortable around disability is injecting humor into the situation, which Maysoon does perfectly. It’s also a great speech about determination.

We Should All Be Feminists – Chimamanda Ngozi Adichie 

Like Beyoncé’s track Flawless? You partially have Chimamanda to thank for that. This is another great talk about feminism and how we teach kids about what’s expected of them. This isn’t her only great Ted Talk, she also spoke on The Dangers of the Single Story in literature (another talk I referenced in my essays for university).

Let me know your favourite TED Talks! I’m always looking for new and exciting ones to watch!

Why Professor Stephen Hawking has become one of my heroes

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I’ll start this by saying that I’m absolutely hopeless at science, the only part of it I was good at was Biology, not Physics. With the release of The Theory of Everything, I took to the cinema with my friend Amy, intrigued by the story of Stephen and his Wife. I left with more than just a love for a film, but a new person to admire grately. I’d known that Stephen Hawking was one of the greatest minds on the planet for a long time, who didn’t? That said, as someone who was absolutely terrible at physics at school I never took a deep interest, until the film came out.

I watched this film and fell in love with Stephen’s determination and intelligence. I also marvelled at his then wife, Jane, who in her own right is incredibly intelligent. I watched the two of them and something awoke within me. Although not on the same level, I’ve battled with my own medical issues which time and time again have made people tell me that things I wanted weren’t possible. I read as much as I could about Stephen’s life and ambitions and used it as fuel to add to my own academic ambitions.

I’ve found myself getting angry at my body for not doing what it should and stressing out about the wheelchair, tonight I had a change of heart. I’ve spent all day either asleep or in bed with an hour here or there to eat. I ended up watching the BBC’s Dara ÓBirain meets Stephen Hawking and it made me think again, not just in terms of academics. Stephen’s had a whole life in a wheelchair, his movement and speech taken away from him and he still cracks jokes, smiles and it’s never taken away from his intelligence. I look at this as inspiration and it keeps me going while I have to use my own wheelchair.

Professor Stephen Hawking is perhaps one of the most intelligent men in the world, but there is more than that he also possibly the most persistent. He didn’t simply take his diagnoses and accept it and because of that he’s still here today. So as the above quote says, I’ll adapt to the changes my back brace/ wheelchair bring and I won’t give up.

Image from Pinterest 

Book Review: Breaking The Silence by Jo Milne

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For most of us, listening to the kettle boil, the voices of our families or the sound of a bird is something that we take for granted. These are just sounds of everyday life, right? Not for Jo Milne and thousands of others like her who are registered deaf. Jo was born deaf and after it being picked up in her early childhood in the 1970s, Jo was simply known as ‘the deaf girl to those around her who knew and loved her. With the support of a loving family Jo managed to live a relatively normal life and was happy.

All goes well for Jo who doesn’t let her disability stop her, instead spending her life to help others with disabilities. That is, until she is diagnosed with Usher Syndrome, meaning that as well as being deaf, she is also going blind. Her fear of being plunged into darkness and silence is always present (as it would be for any of us!). After battling for years with these feelings a lifeline was offered to her, the ability to hear via a cochlear implant to the brain. A video that went viral on Youtube, prompting interest around the world.

This is a story of determination, courage and love. I read this within 24 hours and was glued to it the whole time. I loved Jo’s spirit and that of her family who merely adapted their lives so that she was always a part of their life. Although it is clear Jo struggles, and some of the tales from school will make your heart fill with anger and sadness, she keeps bouncing back, never letting life drag her down.

I’ve always been fascinated by the deaf community, sign language and lip reading are both beautiful forms of communication. Jo has handled all of this and then has to learn again, this time to cope without her sight, which understandably she struggles with but she is so honest. I think the reason I loved Jo’s memoir so much is that she’s honest, nothing is sugar coated but she’s not bitter either. She constantly fights through and believes in herself with the wisdom her late grandfather gave to her. I think that struck a chord personally too, the connection she has with her grandfather reminded me very much of the connection with mine.

While you would expect this story to make you a little low, I can tell you with certainty it doesn’t. What Jo does is make you realise that each day is different, that even in truly dark times where you feel like your body is betraying you there is a way around it. She has a kind heart and the steely determination of the Geordie roots she is so proud of (and so she should be!).

I’m giving this book 5 stars *****, because if anything it’s one of the most inspirational memoirs I’ve ever read. I remember watching Joanne on TV when the video first came out and I could have listened to her all day, reading her book has made it possible to understand her world. I feel like EVERYONE should read this, if anything just to understand what life is like for someone with disabilities. This is a truly amazing book and I hope you all have the pleasure to read it.

Also, here is the viral video of Jo being able to hear for the first time, prepare to have tears in your eyes! 🙂

 

Review by Chloe Metzger