EDS & Zebras?

So, EDS and Zebras, whats that about?

Well there is an analogy, when studying to become a doctor that, all ‘hoofbeats’ you hear are from horses (as in, occams razor: the simplest explanation is usually the correct one) For EDS, it’s the: ‘think different’ idea, not all hoofbeats are from horses, they could be zebras, so think outside the box in medical terms  – personally I am not a fan of it, I think there should/could be a better mascot for EDS (zebras really have nothing to do with EDS other than the idea above!) But it seems to have been adopted by the community as a whole, I would love to know what do you think of it?? 

Here is how my Husband put it and I completely agree:

I tend to agree, it’s a poor choice of mascot, considering the ambiguity, and the negativity of concept behind it. Ambiguity in a mascot for raising awareness is a good thing, but only when it prompts a question that segues into a description of the disease itself. I know it’s truly the case that most people who get diagnosed with EDS get there by fighting their way there, but the mascot would be better focused on awareness of EDS as a condition in itself, and not in the difficulties of getting a diagnosis. ie. Making a statement of empowerment, rather than victimhood. – Keith

I think a lovely example is the EDS Awareness Irelands logo, it has far more thought gone into it, it is a willow tree and from their own Facebook page here is the logo explained (be sure to check that page out it is a fab source of support and information)

This is our new logo designed and donated by Eoin Myers from Cork!
Our logo has a great deal of symbolism behind it and is a great interpretation of our members. The design is dominated by a Willow tree which is very symbolic. The willow tree is flexible and can bend, unlike other trees, without breaking. Metaphorically, this means it has the ability to adjust and adapt to life rather than fight it. The willow grows very large and can grow from a solitary branch that has fallen into a watery area. This tree not only lives in less than optimal conditions but thrives. In relating this growing ability and flexibility to mankind, the willow symbolises that we all need to keep growing and reaching regardless of where we are planted. This is very true of E.D.Sers, both mentally and physically due to hypermobility. The trunk of the tree design is based around the human bodies vascular and muscle system. All these threads also interweave which shows just how tightly knitted our community in Ireland is.

As for a mascot for Dysautonomia, I dont know if there is one, I know there can be blue ribbons and the ‘Hope‘ rare disease logo but I think our Fainting Goat may be one of the first, if I am wrong please correct me, but if not, HOW COOL IS THAT?? again thanks to my hubby Keith for the design 🙂 It’s fun and quirky and so many people in the dysautonomia community have positively commented on its humorous aspect, and laughing at anything is the best part 🙂 🙂 🙂

Irish Blog Awards 2013

Hi all,

The Irish Blog Award nominations are now open, the awards will be held in October and all information may be found HERE.

I have put this little blog forward to be nominated towards ‘Best Health and Wellness Blog’! I really doubt it will get anywhere, at all, as there are some amazing health blogs out there to compete with but I thought it would be one amazing way of raising some awareness!

The Irish Blog Awards have a huge following each year and as such, nominating this blog in the awards, even if it doesn’t get anywhere, will spread the word a little and as Tesco say: ‘Every lil helps!’

If you would like to help please just CLICK HERE and nominate irishdysautonomia.wordpress.com/ (or copy the URL up in the address bar!) in the Best Health and Wellbeing category They will also ask for the email of this blog which is: irishpotsies@gmail.com. Our Rare  little community would greatly appreciate the help in spreading the awareness 🙂 🙂

From The Irish Blog Awards Themselves:

Blog Awards Ireland 2013 celebrates the best in Irish blogging with 31 winners being announced at the blog awards event on 12th October 2013 in the Osprey Hotel in Naas. More and more people are reading and writing blogs, more buying decisions are being influenced by bloggers and more businesses are using blogs to engage with their customers. Blogging is a tool that is available to everyone – for them to further their businesses, to write about their passions and to video their successes. Blog Awards Ireland works to celebrate the very best in Irish blogging.

Back To work with Dysautonomia!

So yeah, Here is the blog post ye have been waiting for! 🙂

I had said it to you over on the Facebook page that I wanted to take a different direction for this little blog. I still want to raise awareness as much as I can, share my experiences and things that help, but now I have something new to share with all of you.

I am back to work with this illness, and so far, so awesome! 🙂

So I thought, hey, wouldn’t it be cool to share that experience, Irish fainting goat girl with Dysautonomia returns to work for the man in the real world, how does she get on?

Well lets find out shall we? I want to share my working experience with you while I have this condition, the positive aspects mainly and any difficulties or surprises that I encounter along the way.

For obvious reasons I am not going to say for whom I work, people close to me or know me through other social networking sites may know but I will keep that off the cards. However I can say, that I have a lovely cushty number working from home, full time for a well known company where I provide technical support via Computer and phone.

I was first diagnosed with Postural Orthostatic Tachycardia Syndrome when I was 28 back in April 2011. It came out of the blue and as I wasn’t prepared for something that debilitated and disabled me so severely at the start, I quickly found myself in a steep wallowing rut where I lacked all motivation to do anything, much less think about work.

In the summer previous to this, 2010, I had just completed a Masters of Science, of which I was very proud and worked very hard for and once finished, I wanted to pursue starting my own business in Media (Photography and Video). Then this happened and I was devastated, to say the least.

I was always someone who kept busy to some degree, I have worked since I was 16 and I knew once the Masters was finished that I had a plan.

That plan shattered around me when I got my diagnosis. Not initially mind you, I have a very positive outlook and I tried to fight the reality for as long as I could but constant relapses, catching bugs, fainting and reoccurring hospital visits soon also shattered my motivation to get anything done.

During this time especially, I have my husband to endlessly thank for the immeasurable help and encouragement that he provided. He has been my rock and my savior (no I am not religious in the least, but you know what I mean)  😉

Through one event and another, in August 2011, I decided to go ahead and start my own business anyway, with the help of my husbands amazing support I said I would at least give it a shot. I was still very ill but really didn’t want to give into the illness and anyway, who would hire me knowing I have this condition? I could barely stand up for 15 mins without passing out and falling over and breaking a bone or something (Later in 2012 I was also diagnosed with Ehlers Danlos Syndrome (EDS), so that explained all the broken bones and stuff!)

So I gave it a go and even got busy. I started getting calls from colleges to document events and Artists work, Weddings became a frequent work day and shortly afterwards even the videography started getting interest from people.

I tried and I worked and with endless help from my better half I somehow managed, but I found that I was unreliable, to just myself. I never left a client down, but in doing so, I suffered greatly. One day of photography, especially the weddings which required travel all over the country, up to and sometimes exceeding 12 hours, usually left me bed bound for up to 3 days afterwards in dire straights with severe Pots and Dysautonomia symptoms which eventually ended up being swiftly followed by being admitted to hospital and then the left overs of the job were left to my husband to clean up and get finished, and that was just unfair and happening all too often.

It was tough, it broke down my motivation for wanting to succeed and I was physically, health wise, incapable of keeping up to the work when I started out.

However as time went on, I started to do a little better.

In 2012, even though I had 8 hospital admissions, my specialists finally had me on a concoction of medication that seemed to have somewhat stabilized me. Towards the end of the summer that year, I stopped eating Wheat and Gluten to see if that would help my terrible digestion and tummy issues caused by a combination of the Dysautonomia and the medication I was on to treat it!! Going gluten free was just the start of the improvements I was about to see in my health.

In October 2012 I was also diagnosed with EDS type3, which accounted for all the musculoskeletal and digestive issues I was having. Having this diagnosis helped in my understanding Dysautonomia better and allowed for a better understanding for my specialists of how my health was affected.

Armed with new medical knowledge, eating healthier and a generally more active lifestyle the end of 2012 marked a vast improvement in my health but a major drought in the Media business.

Irelands economics and Media work in general had slowed right down, making income unreliable, infrequent and financially things started to get very shaky.

Throughout christmas and the new year there was no luck in finding work and my motivation was lacking again. We also had a pretty crap christmas, but you would get over that!

Long story short, I kept trying. Handing out cv’s, sending my information to companies and hearing nothing back.

I quickly lost heart.

One morning I woke up to a mail in my inbox from the better half. He  had been up late in the office and noticed a job, working from home for a very legitimate, big name international company doing technical support within the qualification that I had.

I decided to apply in the vague hope something may come of it.

A month goes by and I hear nothing…

Suddenly I get a mail saying that I had been selected for an initial interview. Did that and successfully made it to a second interview and lastly a third. Over the course of about a month, I completed 3 interviews and was told that I would be told shortly afterwards if I had gotten the job or not.

I was so hopeful and a little scared, I wondered if I did the interviews ok as it had been so long since I had done a formal one. I thought would I be able to work a routine job at all?? I found it difficult to work for myself although in this job I wouldn’t have to be running around after bridezillas for over 12 hours!! A month went by and I heard nothing. I thought, yet another opportunity failed and passed me by.

Out of the blue I get a phone call early one morning. I was half asleep and not prepared for it.

“…I am delighted to say congratulations, you have the position. We would like you to be available to start on…”

the rest is a blur! I was both excited and a little terrified at the concept of working for someone else, the ever dreaded question in the back of my mind: Will I be able for this?

One month of fully paid training, fulltime, Monday to Friday 9 – 5:30pm started in June where we had to be trained in on every aspect of the job. There was a class of about 15 of us where we had to complete an exam at the end of each weeks training session. if we did not pass and failed an exam twice, thats it, you do not secure your contract. Some people didn’t do well and couldn’t secure their contract.

It was difficult, interesting and I actually had fun. I am delighted to say I passed all the exams, secured my contract and I am nearly at the end of my 2nd month on the job!

It has been amazing. All my work equipment was provided to my home by the company. I have a set routine to follow and I have found it amazing.

I am motivated, eating well and healthy as I have regularly assigned breaks, before I would go from one end of the day to the other and not eat properly due to a lack of routine.

I keep well hydrated as always and now my days are occupied with doing something other than staring through the screen wasting my life on Facebook if I didn’t have proper work to do!!

The only difficulty I have found so far on the job is how exhausted tired I am when I finish work every day. I know I am just sitting at the computer taking calls and giving tech support but it requires a lot of concentration and interaction on a computer platform, while I am on the phone speaking with people, trying to troubleshoot and resolve an issue and I do find it really wipes me out by the end of shift, especially if someone is being testy at the other end of the phone!

Thankfully though I am working on it. I find it is getting easier, the job, the routine, understanding different accents on the phone!! I am loving it. I have made new friends, and starting a new daily routine really seems to have helped me as a whole. 

Regularity suits me, it suits keeping this illness under control. Routine keeps meds, food, liquid intake and even toilet breaks under control. Keeping up regular exercise however has dropped since I started. Not only have I been really tired after work, but the uncharacteristic heat we have been experiencing over the last few weeks has shut my body down! I have no energy in this heat other than that, getting a new job has been amazing and helps to take my mind off the fact that there may be anything ‘wrong’ in my body or otherwise. I enjoy it, my sleeping pattern has stabilized and loooong may it last! 🙂

So this is my first ‘work’ related post, I have been living it which has been great but reading it may be boring to you, if it is, please let me know what would help. Is there anything specific you would like me to talk about in relation to working with this illness?? if so please let me know 🙂

Thank you for your time in reading this humble bloggy! 🙂