Post from Uninvisible Podcast

Artist Rana Awadallah grew up surrounded by poverty, abuse, and trauma. Diagnosed with major depression and extreme anxiety at the age of 18, she always felt there was something “wrong” with her body. Then, at the age of 24 — after having dealt with chronic pain for a decade — she was diagnosed with osteoarthritis in both of her knees. Shortly after, she was diagnosed with fibromyalgia, PCOS, and possible endometriosis. Having not been taken seriously by loved ones or doctors for years, these diagnoses came as a validation. But they also signaled aggressive change. Because her pain prevented her from continuing work in her dream job (as a chef), these disabilities also created the opportunity to pursue art from home — something she’d had a passion and talent for her entire life. Within a year, she has created a thriving community of fellow Spoonies, inspiring them through her work. She’s taken on brand ambassadors, connected with leading lights in the patient advocacy community, and now…she’s ready to share her story. We are thrilled to welcome the lovely and kind Rana2.0 to Uninvisible Pod!

Rana Awadallah

https://www.ranaawadallah.com

Rana2.0 — Instagram

https://www.instagram.com/rana2.0/

Rana2.0_Shop — Instagram

https://www.instagram.com/rana2.0_shop/

RanasThoughts — Twitter

Original video is on Rennie’s YouTube

This is a Hatha chair yoga class with a dharma talk  and savasana talking about “hard days”.

Original content can be found on The MS Guide’s YouTube

Trishna Bharadia is a very well-known MS patient advocate who has a unique insight into the different issues and challenges the Asian MS community faces. Trishna is also extremely busy and was very kind in sharing her time and expertise to talk about some of the issues faced by the Asian MS community.

Asian MS Website: https://www.mssociety.org.uk/care-and…

Women of colour with multiple sclerosis: https://www.facebook.com/groups/42670…

Chronically Brown: https://www.facebook.com/Chronicallyb…

Our cancer ambassador, Jen tells her side to “balance”, check it out on CancerLyfe.

The content is produced by CCYAN and their fellow Nathalie Garcia.

“ You don’t look disabled. 

“You don’t look disabled” but some days I couldn’t go to school because I couldn’t leave my bathroom.

“You don’t look disabled” but I have to go to the hospital every two months for the rest of my life. 

“You don’t look disabled” but I have tried seven different medications for the same disability within three years. 

“You don’t look disabled” but some days my joint pain was so bad I couldn’t even pick up a pencil. 

“You don’t look disabled” but every time I walk into a hospital I am comforted and terrified at the same time.

“You don’t look disabled” but I used to sleep only three hours every single day for weeks because my steroids made it impossible to sleep.

“You don’t look disabled” but some days I can feel my throat close up from suppressing my anxiety.

“You don’t look disabled” but I have sat on my bathroom floor feeling like I couldn’t breathe because the nausea from my medications was so overwhelming.

“You don’t look disabled” but I am. ”

I have never understood why people tell me I don’t look disabled or that I don’t look sick. What is disability supposed to look like? Disability is not singular. Disability does not look one way. Disability is diverse. 

I do not want to prove I am disabled to strangers or people I know.

Though the intention behind this phrase may be to compliment me, I never feel complimented. I feel small. I feel like a fraud. I feel like I am faking my disability in some way. I feel like I do not know my identity. 

It is time for people with invisible disabilities to stop being doubted for being disabled. It is time for everyone to change their perspective of what disability looks like. We must listen to others’ stories. We must stop being bystanders when people with disabilities are doubted. 

Disability is not a bad word. It is not offensive. We should not be afraid of it. 

I am disabled and I am proud. 

Originally posted on New Beginnings

sunset
Hold on to love, not loss

It’s been an emotional time in my life. A lot of things going on, some good and others less enjoyable to say the least. In the midst of this, my first born is turning 16 years old soon. As her Sweet 16 approaches, she’s also been asked to baptize a baby girl who happens to be my niece from my mother’s side of the family. In the Greek Orthodox religion this is a huge holy event and a huge honor to be a part of.  I’m incredibly proud of the young woman my daughter has become and these back-to-back events are very profound to me.

These milestones and joyous occasions bring up a lot of emotion and for anyone who’s lost a loved one you understand what I mean when I say the moments are bittersweet because you wish the person that you lost could witness and share these experiences with you. Sometimes no inspiring philosophy can make you feel that better.

I’ve lost pivotal people in my life;  my mother, my grandmother, my uncle.  Each one took a piece of my heart that I won’t get back.  Each loss has left me a changed person from that other person I was before. My mother’s loss is especially difficult because I wish she had an easier life to begin with but more than that, I wish she could have lived to see the fruits of all her sacrifices in raising her two daughters. Sometimes bad things happen to good people and it’s really not fair and difficult to make sense of.

When you’re missing or longing for a person the reality of is is that it feels awful. The person you love is gone and it hurts. Time doesn’t make it better, it just makes it different, and in some ways, worse. The loss will always be there and it creeps it’s head often.  During regular moments like when you’re loading the dishwasher after supper. During trying times and struggles, where the loss and longing is an addition to whatever you’re already facing and you miss that person being there for you. And, during meaningful experiences, like for example, me, preparing for my daughter’s events.

We all go through these feelings of being saddened or depressed. They come in waves, sometimes when we don’t expect it, and they dampen our spirits. I think it’s important to accept them and experience them. They are valid emotions and warrant acknowledgment. I miss the support and love I received from these people who have left and I’m not happy with the way they went; I miss my grandmother; I wish my uncle had an easier death; I wish my mom didn’t die so early; I wish she could have seen me mature from that crazy hothead I was into the woman I am today; I wish she could have seen me graduate, get engaged and walk down the aisle, have a career and be a good contributor to society; I wish she could have met my three kids and be a part of their lives and all their life milestones; I wish she had an easier life and could have retired happy witnessing all that she made possible through her sacrifices; I wish she were here for me for advice and as I go through my own personal struggles.

As the waves come, I allow the tears to fall from my eyes.  Sometimes I even drown in them.  But after a while I ask myself, what would she want for me? How would she want me to be? What would my grandmother and uncle want for me and how would they want me to be? How would they be in this circumstance? In fact.. weren’t they all in similar circumstances during different times in their own lives? And these questions sober me and bring me back to the present. Because they would want me to be happy and they would want me to live and soar no matter what the circumstances were.

Some of our loved ones go earlier and others later. Some will suffer more or less than others. The loss part of it is different but the love part of it is the same and why focus on the loss and how things would have or could have been, it’s not serving any purpose other than to keep us sad.  We can’t control the circumstances of the loss but we can control how it changes us. We can leave it leave us bitter, or sad, depressed or disconnected. Or, we can use it to make us better, wiser, more understanding and more grateful people. We can choose to focus on the loss, on how it hurts or was unfair and how our beloved suffered terribly. Or, we can choose to focus on the love that person gave us, on the impact they had on our lives and feel fortunate that that gift was given to us for a precious amount of finite time. Then, we can strive to be that loving and positive person for others in our life and pass that gift of love forward.

So, the day of the baptism came around and we all gathered around in anticipation of the beautiful event.  I was nervous for my daughter hoping it would all go smoothly (Greek baptisms can be a little daunting but that’s another story). I was feeling very sentimental and emotional. As it began to take place I felt the salty tears well up in my eyes and as the waves came I let the emotions flow out.

I stood there as a proud mama. So happy to be a part of my cousin’s baby’s holy event. I stood there as a proud daughter representing my mom. The love that she gave me is embedded in who I am and I carry that with me everywhere I go without even realizing it. So a part of her is here, through me, always. I stood there as a proud granddaughter and a proud niece in memory of my beloved grandmother and uncle who were huge influences in all of our lives and who helped shape me into the person I am today. Me, and all of my family standing in that church. I chose to believe that all three of them were there that day, in spirit, and though all of us.

We have to remember and accept that nothing lasts forever in this life and one day we will have to say goodbye to everyone we know. You lose the person but once you truly and deeply love someone, you can’t lose the love. All we can do is live and carry it with us.  Hold on to the love, not the loss.

Heather has outlived her original prognosis and continues to raise awareness of this terrible disease, read her story on CancerLyfe.

Original post on Myelin & Melanin


Intimacy extends beyond romantic relationships. Today we’re joined by Dr. Aaron Boster, MD, and we chat about one of the most intimate relationships an MSer will ever have — with their MS specialist. 

Dr. Aaron Boster, MD is President of The Boster Center for Multiple Sclerosis (bosterms.com). He is a board-certified Neurologist specializing in Multiple Sclerosis and related CNS inflammatory disorders.

Click here to listen

Find Dr. Boster on Twitter @aaronbostermd and YouTube.

You can find us on the web at http://myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube.

Consider supporting us through our Patreon — http://patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more.

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As we do not get paid to produce the podcast, these are costs that come out of our pockets. This can often be a struggle.

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Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts.

Peace!

Original post on Anonymous Asthma

Most of this blog focuses on asthma, asthma awareness or research I am involved in but never really talks about who I am as a person.

So who is the person behind the asthma. I decided to do something different and posted to my social media questions that people want me to answer here but a brief overview.

I am 34 years old from Scotland (not Cornwall despite the odd accent). I come from a large convoluted family and have one sister and 4 brothers. I went to uni to study sports science and then on to study nursing. I had a career as a renal nurse until I had to give that up. I love sport and have played many sports over the years. Golf, lacrosse, football, rugby, hockey and used to run. I have played lacrosse for Scotland, been assistant manager for the Scotland Women’s Senior team, goalie coach for the U19 Scotland Women’s Team and coach at various schools and clubs. I played golf at county level at school and then just club level before a break 5 years ago where my club lay dormant. I also ran the Edinburgh half marathon in 2 hours back in 2012.

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Questions from social media!

What is your fave drink? (Alcoholic and non alcoholic)?

  • Vin Chaud (on the ski slopes)
  • Apple Juice

If you could have a dinner party with 3 people (alive or dead) who would it be and why?

  • Neil Armstrong- he has spoken some of the most famous words in history
  • Walt Disney- who doesn’t love a Disney movie!
  • Anja Parson- the ski racer I looked up to when I was racing

What is your favourite holiday?

  • Skiing in the French Alps

What do you personally do to keep well which may help others?

  • Listen to my body and try and adapt my day to fit my symptoms and not get disappointed when I have to rearrange things. Better to rearrange than push through and not enjoy it.

If you had to choose one sport what would it be?

  • Skiing- it is my life. If my asthma didn’t get in the way I would still be a ski instructor

Are you a morning person?

  • Always a morning person!!!!

If you could only wear one colour what would it be?

  • Blue (for Scotland)

Favourite type of book?

  • A good crime series

Favourite book?

  • To Kill a Mockingbird

Favourite music? A song you cant avoid singing when it comes on the radio

  • Pulse by Melissa Etheridge

Do you listen to any podcasts?

  • A Question of Sport and then some mindfulness ones

Explain your love of penguins!

  • Not sure. Always loved going to see them at the zoo when I was younger as they did the penguin parade. Laterally because my nickname stems from a penguin.

How do you fill those days when you physically cant do much?

  • I try to find things that I love and ways to be involved in what I love even though I cant do it. Also I am determined to use my experience of having awful asthma to help others deal with theirs or researchers and medics to understand it better.

Who has been your best caregiver, friend, person who is always there for you?

  • My Mum
  • My brother Nick
  • Best mate Jenni

Who inspires you?

  • My late Uncle who really lived his life to the full and showed that through hard work and determination you can achieve your dreams.

If you could have a theme song for your life what would it be?

  • I believe I can fly by R Kelly. The lyrics really resonate with me.

What brings you joy?

  • Being able to go to bed knowing I have accomplished something that day even if it is a little thing.

If you could interview one historical figure who would it be?

  • Nelson Mandela- to go through what he did in his life is awe inspiring.

With what you know now what would you tell your younger self?

  • You might not be able to do the things you want to in the manner you want but with determination you can still be involved, you just need to look at alternative ways.

Something about your involvement in sport?

  • I love sport and with my asthma I was not prepared for sport to walk out my life so I have found new ways to still be involved without actually playing sport. I am more involved in lacrosse now then I was or ever would be if I was still playing.

Originally on My Migraine Life

Migraine symptoms can be so tricky. I never know if I’m coming out of an attack or rolling into another. Understanding the timeline of a migraine attack is important although there are many overlapping symptoms before, during, and after a migraine attack. The migraine prodrome phase is where migraine symptoms begin. When thinking of the migraine attack timeline, I like the American Migraine Foundations graphic.

Timeline of a Migraine Attack

Migraine symptoms can occur anywhere from an hour to days before a migraine attack.  It can serve as a warning and can differ with each attack.  Some migraine symptoms may be but are not limited to the list below.  I have linked my experience(s) with each. Remember, I’m not a doctor. I’m sharing my experience with My Migraine Life and linking all my stories to how it makes me feel every day. Everyone’s experiences will vary.

Prodrome Migraine

  • Mood changes

This is because levels of neurotransmitters such as serotonin and norepinephrine are affected by the migrainous process in the brain. [1] In all of the migraine phases, mood changes are present.  The mental toll of living with migraine is a roller coaster and one that is often uncontrollable.

  • Depression
  • Irritability

Photophobia, increased sensitivity to light,  can begin during the migraine prodrome and continue throughout the migraine attack. I am always sensitive to light and it almost always increases the pain of a migraine despite what phase I’m in.

  • Sound sensitivity

Phonophobia, increased sensitivity to sound, can continue through the aura and headache phases. Once again, sound also can increase my pain.

Migraine Aura

Not everyone experiences every phase.

 Migraine Headache

  • Head Pain

Did you know you can have a migraine attack without head pain? I didn’t for a long time either. For me, head pain is the worst part of my attacks. Each migraine attack is different and describing the pain is difficult. I have had head pain on both sides, one side, and ranged from mild to extremely severe.  Along with Chronic Migraine, I also have daily persistent headaches so it’s an everyday thing for me.

  • Throbbing
  • Drilling
  • Icepick
  • Burning

Postdrome Migraine

Finally, I crawl out of my cold, dark room after an attack and I want to be free of migraine symptoms. But the reality is, there’s still another phase. It’s what I call the zombie phase or the migraine hangover. The postdrome phase is often overlooked even though 60-80 percent of people with migraine experience it.   Postdrome is actually part of the migraine attack itself. The profound changes in activity and blood flow that occur during the aura and head pain phase of the attack, persist even after the pain has ended.

  • Memory loss
  • Clumsiness
  • Euphoric Mood
  • Depressed Mood
  • Fatigue

Whether I’m in the prodrome migraine phase, aura, headache, or postdrome, I’m dealing with a variety of migraine symptoms. They all overlap and are different with each attack. The severity and frequency also vary.  Because of this, migraine treatments also vary.

[1] Roberts, Teri. 14 Migraine Prodrome Symptoms. July 15, 2020

Migraine Sugar Craving: Prodrome March 1, 2016In “Exercise and Nutrition”

Migraine Triggers February 12, 2019In “Migraine”

Avulux Migraine Glasses Review November 10, 2020In “Light Sensitivity”