Spotlight Story Program: Louise’s Story

Meet Louise Cooper

We’ve gotten to know Louise first as one of the cool British health and lifestyle bloggers that followed InvisiYouth, but we are getting to know her even better as a member of the InvisiYouth team for this winter’s Superhero Series Winter Games this December!  She’s an Ehlers Danlos Syndrome warrior that’s found ways to balance her love of sport and travel with her illnesses, and her open honestly makes her one to watch in our book.

My name is Louise, I’m originally from Essex, England. I was diagnosed with Ehlers Danlos Syndrome, PoTS, Chiari and a whole host of other conditions in 2015 and am still under investigation for a variety of things!

I have always been a “sporty” person, I didn’t find out about my EDS (a connective tissue disorder that can affect the skin, joints, muscles and vascular system with hyper-mobility and hyperelasticity) until three years ago when I was 25, but have been in and out of hospital my whole life and had a back brace for scoliosis at the age of 12 for a few years. The only time I didn’t have to wear my back brace was when I was exercising, so, if there was a sport – I did it! I was also a competitive swimmer throughout my teens, I even made it to nationals (albeit in a relay team by HEY, it still counts!). Unfortunately, after various immune issues and bouts of glandular fever and CMV my exercise started to tail off in my late teens and early 20s.

I held down a full-time job for 5 years, bought my own apartment and car, I had everything I needed! Things came to a head around 18 months ago and my body just said ENOUGH, I was working ridiculous hours at a job in London with the commute, and not looking after myself much. The average person would burn out, let alone someone with a chronic illness, but I guess that’s just the fight in me.

So I started back with physio, some days I’m fine, some days I’m not! I like someone who gives me physio exercises based around the gym – I just respond better that way, I like to be challenged and push myself further however it is SO important to do this correctly and under supervision. Physio will always be a part of my life as I will always have ups and downs in my health but I dont see this as a negative, I learn each time what I can do to strengthen or protect my body in order to prevent or minimize thedisruptionto my body for the next time.

I have found it’s important to use supports, straps and anything else for your physio exercises and gym routines. This will always give you the confidence to know you are safe while exercising! I currently wear, finger, x 2 wrist, knee and back supports when working out. While there’s not an awful lot I can do about my ligaments and tendons, I can strengthen and tone the muscles around my body to get them performing as best as possible! Being back in the gym the last two years hasn’t always been easy. I’ve a fair share of blips along the way with disc tears, bulges and tarlov cysts now appearing, but this has only made me more determined to keep going! Keeping mobile and active reduces my pain, but there is a very careful balance, I have to make sure I dont overdo it and listen to my body!

I also have to make sure that I listen to my health not just through exercise, but through my diet and medications as well.

By health, I mean nutrition, taking my tablets and everything in between. I’ve always had food intolerances, but recently these have become a lot worse. I don’t believe in cutting out EVERYTHING from your diet, it’s everything in moderation and finding out what works for you.

My motto is – listen to yourself. I find my body tells me what I need but generally, I’ll eat meat, fresh veg and a small portion of carbs. Its about trial and error and finding what works for you, and you really, really do have to persevere, it won’t change in a week, it has to be a lifestyle change in order for it to work.

Possibly most importantly – Take your medication!! They are prescribed for a reason – and I know this can be hard, I am forgetful, this is something I’ve really had to work on! It sounds SO easy and its not that I don’t want to take them it just becomes – I’ll do it in a minute! How do I manage it now? I leave my tablets in my room and kitchen, if there staring at me, I can’t avoid them!

When living with chronic illness, it not only can take a toll on your physical health but also your mental health. My mental health impacts on my ability to participate in my exercise plans and my dietary programs. If I am feeling pessimistic (which we are all entitled to at times) or having a bad day, I am less likely to want to go to the gym or look after myself as well or cook my dinner.

Now this isn’t necessarily a bad thing, nobody in the world is 100% positive all day everyday, but for the most part, I think it is important to have a Positive Mental Attitude (PMA). Even on my bad days, I always try and find a positive. For this reason, I usually have flowers around the house – if I can’t think of anything else nice about my day or if I’m feeling low, I can always look at flowers to give me a “pick me up.”  Negative thoughts cannot change what has happened or the current situation you may be in or what your future may hold. But, what can change it? Trying.

Trying everything, and anything thrown your way.

I moved/travelled to New Zealand, started promotional modeling, made a great group of friends, went on adventures, hiked 4 hours in a bush, appeared on TV (albeit an extra!), my health was the best it had ever been! I’ve recently started a forum along with some Chronic Illness friends and we will be uploading beginners home workouts and basic physio (all are qualified, I will just be performing the routines).

But one day I woke up unable to move and spent the next 2-3 weeks in and out of hospital and have since, pack up my room and sold my furniture in New Zealand and returned to Essex to give my best chance of recover and further testing on what we believe may be neurological.

One thing that I’ve always found incredibly hard – and still do – is I look totally “normal”. I don’t have a cast on my leg or have visible scars so I often hear the phrase “but you don’t look sick”. I’m quite open about my health and try and raise as much awareness as possible, by posting “normal” pictures and trying to change the way illnesses are perceived – just because you can’t see it, doesn’t mean it’s not there!

Am I nervous, anxious and scared? Of course! But I’ll keep trying and determined to keep going, if I’ve learnt anything its that were a lot stronger than we realize and give ourselves credit for.

That is why I’m so appreciative of being asked by InvisiYouth to be a part of their Charity Team for this past Superhero Series Triathlon for disability adaptive sports.  And while I couldn’t compete that day, I am thrilled to be part of the new InvisiYouth Charity Team for the upcoming Superhero Series Event this December, Superhero Winter Games. The work they do is very close to my heart and something I’m so passionate about – I wish I would have had this connection to the community in my teens – before the days of social media!! I cannot wait to support InvisiYouth in the Superhero Winter Games run and hopefully raise a bit of awareness too!

Spotlight Story Program: Shira’s Story

Meet Shira Strongin

There is no joke around the statement that 18 year old Shira Strongin is an OG Sick Chick…in fact, she took her personal experiences growing up with chronic illnesses and built an entire international community surrounding the exact name, The Sick Chicks, all about empowering young women living with illness and disability.  When she’s not motivating others, Shira is motivating those law makers on Capital Hill in Washington DC, fighting hard to make changes that will positively impact the lives of so many youth with chronic illness in the USA.  And now she’ll be going to university in the country’s capital, so female illness empowerment is about to get a lot louder!  

“There’s no treatment. I’m sorry.”

Words no one wants to hear, but especially no child or teenager. But it’s the reality of living with many complex, life-threatening diseases. Growing up I knew I was sick, there was something off that doctors continued to miss, but it wasn’t until a spine injury that was a trigger event, that we realized how sick I was. It turns out I have a vascular subtype of Ehlers Danlos Syndrome and other rare comorbidities.

Instead of being in school or doing “typical teenage things” I’ve spent my adolescence in and out of the hospital fighting for my life. I soon realized how absolutely uncontrollable my health was, and decided to turn to advocacy as a way to take back control. I might not be able to change my immediate situation, but I sure as hell would make sure I impacted others’ situations and impacted future health care.

(*InvisiYouth Editing Note: This post was written in August while the fight for Cures Now was happening, a piece of legislation that has now been passed. And yet even currently so much is currently being discussed about healthcare in the United States, so keep on reading why Shira knows healthcare advocacy needs a youth voice!*)

Currently there is important legislation that is a revolution in healthcare that could completely change how complex, rare, and life threatening diseases are treated.

Instead of having to hear the phrase, “There’s no treatment. I’m sorry.” We could have access to previously off-label medication.

There will be research being done.

There is hope for us all, and because this is our future, we must take a stand.

“Congress is working together on a nonpartisan issue that will have a profound effect on the lives of all Americans. H.R. 6, the 21st Century Cures Act, will bring our health care innovation infrastructure into the 21st Century, delivering hope for patients and loved ones and providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments.” – Mission Statement, House Committee of Energy Commerce, 21st Century Cures

Is it just me or do you get chills reading that paragraph?

Finding advocacy allowed me take control of an uncontrollable situation (my health.) Now, one of the pieces of legislation I’m most passionate about and have fought the hardest for is facing it’s day in the Senate.

~ What do we want? Cures! When do we want them? Right. Freaking. Now. ~

We are in crunch time. 21st Century Cures has passed the House, and is now finally going to the Senate after being delayed quite a few times. August is our final time to push for this important piece of legislation. You might be asking things like, “Well, I’m not sick, so why does this affect me?” or, “I don’t have a rare disease, so why do I care?” I’m here to answer those questions.

Health legislation affects everyone. Yes, you might not be sick. Today. But health can change in the matter of seconds, and (God forbid) it ever happens to you, you’ll be hoping that 21st Century Cures in action to produce treatments and cures. Cures are for everyone NOT just rare disease patients. This affects cancer patients, this even affects the hot topic zika virus. But, OPEN Act (something I’m incredibly passionate about that gives bio pharmaceutical companies incentive to make off label medication on label for rare diseases that otherwise wouldn’t have treatments) is only for rare disease patients.

So then comes the question again, “Why should I care?” Because, 1 in 10 people have a rare disease. By that statistic everyone knows someone with a rare disease. So, get involved and care for your bother, your mom, your niece – whoever it may be because without these vital pieces of legislation they might me in the same situation as me…stuck living on borrowed time and who knows how long that lasts for?

For more information about Sick Chicks, the international community all about empowering young women with all types of chronic illnesses, visit their website, or go to their social media pages on Facebook, Twitter and Instagram

 

What’s In My Bag: The “Boss Lady” Spoonie Edition

March 31, 2017

It’s often so hard to travel on a daily basis as a spoonie, let alone make sure that you have everything you need in order to adapt and function to your health struggles each and every day…Even harder, not to feel the need to carry a massive duffle bag everywhere you go!

For a long time, I’m always asked what are my essentials, my go-to tools and gadgets that I always carry with me, the “spoonie boss lady necessities” as one of our InvisiYouth supporters wrote to me.

So, it seemed about time that I finally reveal what I carry in my bag me, my own personal “What’s in my Bag” segment of this founder’s blog, but it’ll be the boss lady edition with a RSD-inflicted flare.

 

What’s typically in my bag is a range of products:

  1. Precut KT Tape
  2. Hand warmers
  3. Mini Tylenol bottle
  4. Bandage dispenser
  5. Notepad
  6. Pens with multiple sizes
  7. Calendar with to-do list
  8. Portable charger
  9. Business cards
  10. Tea
  11. Sunglasses
  12. Mini lavender lotion
  13. Phone
  14. Motivational quote

Besides the typical license and money additions that are always in any bag I take, I can break down the items I carry with me into three categories: my mini-medical toolkit, my boss girl life and my random necessities.

When it comes to my mini-medical toolkit, I bring the most compact versions of everything that I need with me. Since I have residual RSD, my needs are more for pain management and reduction of muscular swelling and spasms. I have to sort of premeditate what are the possible injuries and flare-ups that can happen during and typically for me, these are the main helpers to get me through the day to keep pushing forward.

I ALWAYS carry hand warmers on me!  They are a literal piece of heaven that can lower my pain super quickly. When it is cold out, or my limbs are freezing up, or my muscles lock up and I cannot move my hand or foot, I rip open the bag and let the warmth take over.  It has always given me a bit of solace to have the warmth.  Next, I bring precut strips of KT Tape.  This is amazing for the swelling and nerve pain that I have on a constant basis, especially when it spikes from overuse or injury.  I wear different patterns to reduce swelling and allow me to move my hand or foot more easily.  With it being precut, all I have to do is stick and apply!

The natural medical necessity is to make sure to carry a pain reliever like a mini Tylenol bottle, and while RSD nerve pain doesn’t improve with any ibuprofen, it helps with the natural side effects that come along with RSD for the rest of my body.  Muscle stiffness, soreness from overusing my right side to compensate, migraines that only affect my left side of my head…this mini Tylenol bottle is a must-have to get through the day.  Last, but definitely not least is the bandage dispenser (which is InvisiYouth merchandise with our logo!!).  While odd for RSD spoonies, you have to look at the side effects that happen with nerve damage.  When my hand spasms and I drop things, or my foot goes numb temporarily and I trip, minor injuries can happen and a Band-Aid is a definite necessity.

My next group of items that are always in my purse will help out my daily life as a boss…that is a charity founder boss. The most obvious thing I carry with me is my cell phone.  Whether it’s checking in on our social media accounts, responding to emails, or marking out reminders through our calendar…my phone has become more of an electronic personal assistant instead of the device I use to call or text.  But I cannot always rely on my phone to remember everything, and that is why I carry a mini calendar with a to-do list in my bag.  It is so important for me as a charity owner to remember all of my appointments, conference calls, Skype meetings and project deadlines so a calendar is vital to InvisiYouth consistent momentum forward.  And for each week, I keep a to-do list so I can cross off the different tasks at hand for the week; it keeps me on task, while also helping me remember what I need to do!

Next up is a notepad that is small and compact, with lots of blank pages. With the natural brain fog that unfortunately plagues my day as an RSD side-effect, I have a hard time remembering all the different ideas and moments of inspiration that come my way throughout the day.  Want to remember a new charity or company to contact for collaboration or fiscal sponsorship? Hear a teen that wants to work with us on advocacy?  Think of a new founder’s blog topic?  I keep a notepad to help me remember all the ideas that pop into my brain and prevent them from being forgotten.  But to write down in my calendar or notepad means I need to carry pens (hope you like our InvisiYouth merchandise specialized, and recycled material, pens!!) in my bag.  To help with my nerve damage, I always carry pens and pencils that are different sizes, some super thin, other jumbo-kindergartener sized.  This helps because oftentimes my grip changes each day with swelling and muscular pain/stiffness so it helps to always walk into meetings with multiple pens so no matter how I’m feeling, I can find one that will fit my grip in that moment.  And last, but definitely not least…you CANNOT be a boss lady without carrying a bunch of your own business cards!  It’s required, and needed, and honestly, there is a silent power that comes along with handing over that card for work!

The last bunch of items I keep in my purse all seem super random to most people, but somehow no matter how many times I clean out my bad, they end up in every bag. First off…obviously since I mentioned my overuse of my cell phone, it is only obvious that I would bring a portable charger with me as well.  I have to make sure that this phone is constantly charged and ready to use, and this portable charger is small and sleek to fit with in a clutch or massive duffle bag. Next, I always bring a mini lotion with me in my bag, but not just any lotion.  I always bring either a lavender lotion (my favorite is L’occitane Lavender hand cream) or I bring a eucalyptus-blended lotion (something like aromatherapy eucalyptus spearmint from Bath and Body Works). For me, the scent of lavender is a quick stress relief so if I’m every feeling stressed or anxious, I rub on some lavender lotion and the aromatic scent brings a quick level of ease.

Along that line of helping with stress, I usually carry a tea bag with me in all my bag.  In a lot of meetings that I go to, they usually ask if I want some coffee, tea or water to drink, and while I ADORE coffee, you want to stay nice and calm, not shaking from too much caffeine, especially if you have meetings all day long. There are dozens of flavors you can have (just like my chamomile flavor from Stash) and you can typically get hot water in most delicatessens or coffee houses so it’s a go-to in any scenario. Next, I will almost always carry a pair of sunglasses with me because with having residual RSD in the left side of my next and head, I can get spontaneous migraines that afflict only the left side of my head, and that can make me sensitive to the light. To prevent me having any problems going to work, or hanging out with friends, I have sunglasses to dim the brightness.  And if that means I need to be ‘that girl’ who wears her shades indoors…well I will be that person on occasion for the sake of my health.  Last, but certainly not least, I like to carry a motivational quote with me wherever I go.  Usually I have an inspiring quote engraved on a rock, like my favorite quote “This Too Shall Pass” that slips into any purse pocket.  It’s small, but just this little thing can give me that mental push to keep going when the work load piles up or my health starts to stumble.

What I carry is not just assisting me or improving my quality of life, but it’s simply empowering. By having all of this in my bag, I empower my life and the woman, the charity owner, the spoonie that I am because I take control of each choice in this very small part of my life.

It is my actions and my decisions on what to bring that motivate me because I hold all the power in what I bring which will help me during the day to make sure I can strong and achieve my daily goals.

 

~Dominique