All of Those Exhilarating Peaks and Mega Excitements of My England Travels for InvisiYouth Charity

August 31st 2017

I recently took a trip to England all in the name of expanding InvisiYouth’s new programs and meeting with some of the amazing InvisiYouth supporters we’ve come to love and support over the years and charities we’ve admired for a while.  We have heard from some many of you that you wanted to hear all about my trip, and how I was able to handle all of that travel.  Now…I cannot give too many specifics about our new programs because we’re in development (and really, what would the surprise be if we told you everything before our prelaunch)!  But I can certainly share all the behind the scenes of my England trip and travel.

There are two big reasons why I wanted to make sure InvisiYouth made its way across the pond to England as our first major international InvisiYouth trip. One was the fact that England has been the first and most overwhelmingly supportive community since the day we launched.  The first teens and older youth with chronic illness and disability to follow InvisiYouth were all British.  And the first charities to reach across and want to lend support to InvisiYouth’s mission were from the United Kingdom.

That support network has continued to grow during our two years. We’ve even had an InvisiEvent in London last autumn, proving that InvisiYouth reaching beyond geographic, we are designed for older youth and can reach them anywhere!

The second reason to go to England was due to our Charity Friend role in the first Superhero Series Triathlon.  This was England’s very first adaptive disability triathlon, where people of all ages, disabilities and illnesses could compete in swimming, running and cycling with as much support and adaptive equipment as needed.

With the backdrop of the 2012 Olympics venue of Dorney Lake, the event was going to be unlike anything experienced before.  And with InvisiYouth having a group of teams all competing on behalf of InvisiYouth to fundraise for us, we had to make sure that we were there supporting them on their amazing job well done.

I have to say, what made the experience of bringing InvisiYouth even further into the UK even more special was that I was able to bring my entire family over with me, and getting some awesome memories of family time included in the work trip.  When life gets so chaotic and crazy, which can easily happen owning a charity and almost 25 years old, it is special to make memories with your family.

These are the people that have been my support system throughout my entire life, and even more than most families because they have become my rock throughout my health struggles.  Going through a chronic illness, growing up and finding myself as an adult with health struggles, is more complicated and challenging than any amount of words can describe.  But it has been my family that has help pull me through all the complexly stressful hardships that having RSD and EDS can really bring into your life.  I am thankful for them beyond belief, for their love and devotion, and their support of InvisiYouth Charity and our mission!

The England experience was an amazing opportunity to meet with individuals and charities who are going to be part of this new, evolving chapter of InvisiYouth Charity as it expands its advocacy education with our new tools and programs.  These illness lifestyle management tools are going to be the backbone of InvisiYouth where our events and speaking engagements will feed off as we continue to grow in the years to come.

I have always said that InvisiYouth’s focus is the age demographic in the illness/disability community, not the specific illness or disability, and we focus on the nonmedical side of the medical experience.  There are so many facets of life outside of illness when you live with one, so InvisiYouth cannot be more excited to provide support to help these young people live life and navigate life with illness so it can be fun, empowered and fulfilled in all its unique, adapted ways.

It is important for InvisiYouth to have more than just supporters in the UK, we need to have partners and lead volunteers in these other regions in order to engrain and expand the InvisiYouth tools and mission.  So it is completely obvious that these British older youth and charities will become part of our expansion and part of the InvisiYouth family. I am literally ripping at the seams wanting to share with you how fantastic each of these meetings were, how amazing these people are, and how completely overwhelmed with joy the InvisiYouth team is to know these organizations are going to be part of something we’re creating.

It is a massive THANK YOU to the always dedicated nonprofits like Once Upon a Smile, English Federation of Disability Sports, The Mix UK and CP Teens UK.

It is a gigantic THANK YOU to the empowering and fearless leaders like Sarah Alexander, Chloe Tears, Catrin Pugh and Emma Franklin.

There were even so many other British older youth and charities that we didn’t get to meet in person but we are going to be connecting with through the powers of technology and Skype now that we are back in the states.

Now, coming off such a successful meaningful and fun trip, we gotta break down the peaks and pitfalls of travel with a chronic illness like RSD.  I always joke that the pain and symptom peaks feel worth it when the experience is so worthwhile, and going over to England and creating these connections to expand InvisiYouth’s work even deeper into this nation was worthwhile.

Sitting on planes for almost nine hours straight doesn’t work well with RSD, so you must accommodate to your medical needs.  Getting medical documentation from doctors about being about to move around plane, to have people required to sit near you to help if side effects arise, all important to have.  And if you’re like me, and you are partially bionic like I am with rods and screws in my spine, then it’s always a good idea to have a medical letter notifying your metal (titanium or not) because it’s best to be safe when you’re going through airport security.

Make sure you have your own checklist for your medical needs (like medications, adaptive equipment, and what I call ‘checkup tools’).  I always like to make sure that my staple backups of support like Tylenol, KT Tape, bandage wraps, mini heat packs, resistance bands, and much more.  And you gotta make sure your wardrobe can match too.  Bringing additional layers when I deal with my limbs going too cold, shoes that can adapt to swelling easily, and dresses with slits so I could easily bring respite to my knee.  All these fashion tips made my travel easier.

But a major savior for me was timing.  I had to make sure my schedule was planned with work, with touristy stuff, as well as my medical rest time.  I had to make sure that when I was travelling, whether on a train, a cab, an Uber ride, or even a plane, that I was using my off-time wisely to recuperate from my symptoms to make it through each day.  And when I had resting time at the end of the day, it was all about heating, massages and elevation.  When you put time into your travels to focus on your health, it actually becomes a true travelling vacation and fun experience.

Yeah, when I got back to the states I had to put in some additional PT sessions, resting time and acupuncture, but with some focus on how to combat travel with a chronic illness, you can get through anything and ease what can be a setback on the return home.

Truth be told, I think England is now going to be a staple trip for Team InvisiYouth each and every year!  And while we’ll be having a team of supporters in the country year-round hosting and supporting all things InvisiYouth, I’ll be making sure that the UK is a top priority visit for us as we grow.  Not only did I love the people, culture, architecture, and cities, but I loved how warmly InvisiYouth’s mission and belief system was received and that deserves lots and lots of more England trips to come!

So…where will I be heading next for some InvisiYouth fun and work?  You’ll have to check out the InvisiYouth website for next month because we’re crossing country borders yet again!

~Dominique

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!