Fundraising For Your Life

Ive always just wanted to be me, not me + a chronic illness. So I was always quiet about my illness and diagnoses. They really only started to hit me most when I was 17 and was hard to hide as much then.

At 19 I was diagnosed with a rare muscle disorder called Myasthenia Gravis. A name on what was wrong, medications to help and off I went.

But I didn’t tell the world, there was no big announcement I just got on with it. I hid it in work as my job as a beauty therapist as I never wanted my skills over looked. I hid it socially as I never wanted myself overlooked by an illness.

I pushed myself everyday all day and would cry at night with pain and weakness. Then start the rinse wash repeat cycle again the next day. This happened again when I was diagnosed with PoTS and again when the EDS diagnosis came. Just more labels hey?!

I just pushed on told a few friends and on the outside I was fine no one, knew what was going on. Because people do look at you differently and you can’t take it back. Some people play up to that role, I ran from it.

My symptoms started to progress and I started to spend more and more and time in hospital from 2013. Things started to get out of control. I wasn’t bouncing back after flares, I started to lose weight dramatically until I was 6 stone . My heart rate that was being controlled by medications started to have constant tachycardia. I started to experience my first ever cluster headaches and believe me they are called suicide headaches for a reason.

From my London Neurologists report. Why not add the most painful condition to mankind on to my other conditions 😐

I spent November – December and into new years of 2013-2014 in hospital extremely Ill. This just continued.

I spent month to month in hospitals with small breaks in between. It was no life. All i wanted was to be at home.

Things were grave and no one could help , they just said all we can do is manage your pain with morphine. But how when I was vomiting all day, unable to have food or fluids and no one knew how or why things had gotten so bad.
Everyone was searching for help , my parents, my friends and me and this is when the decision came that I’d no other choice but to go to London to see a specialist who deals with Ehlers Danlos Syndrome and try get some hope and help at least. 

Hospitals in London I am now a patient at.

I was in my 20s with a young son how could a doctor tell me there was nothing more they could do but manage my pain with morphine and watch me unable to eat and spend endless weeks in hospital.
They major problem with this, is these specialist work in private hospitals in London so its not covered by the Travel Abroad Scheme. Although treatment is not available in this country and the government look at each case individually they do not cover care in private hospitals abroad.

I could not stay living like this on 24 hour morphine pump

So from the hospital bed with help from my friends and their great ideas and initiatives we started Zondras Treatment Fund. A medical fund to help me get the specialist care I desperately needed from the doctors who knew how to treat me.

Ive had the best support with Zondras Treatment Fund

The only problem was they were in London, I was in a hospital bed in Limerick. It was all private hospitals so would cost thousands. It was daunting to say the least. But my friends pushed on and said we will get the money you will go. And they organized their first ever table quiz and done a fantastic job. My friends in college with the help of the Student Union organised a fundraiser in the SU on the same night.

It was amazing to see how supportive people were. Everyone who never knew about my illness , who I never told that I was suffering and what I was faced with all came out and helped me.

Some of the amazing fundraisers organised.

But I was faced with a bigger challenge than going from a hospital bed and traveling to London. The biggest personal challenge for me was coming out publically and telling everyone about what I was going through. What your illness is doing to you, what its taken away. How you’ve been left with nothing so you have to depend on the kindness of others to get you specialist care to at least give you hope at life.
That’s the hardest thing I’ve every had to do. I never ever wanted to be me with the illness. Me who was sick. And here I was everyone knowing, asking wondering how I got this way.

I done lots of interviews raising awareness and i was supported all the time.

I was so Ill on my first trip to London in January 2014. I was frail and weak. When the specialist saw me he said I was just a bag of bones with nothing holding me together. Well that was a nice way of putting it.
He said my situation was critical and wanted me straight back to see a team of specialists. Which would have been ideal but it was going to costs thousands more and we would have to raise it first.

So returning back to Ireland in the exact same critical state to fundraise more money to get back as soon as possible to see these specialists. Its not like I had time on my side.

They organized everything for me over there and I went back in April and saw Neurovascular consultants , Neurogastroentrologists where they assessed my condition they went through all the tests I had done in Ireland already. I spend one consultation throwing up the whole time in the room , I was so Ill. I got sent straight to urgent care as I was so sick the doctor could not even speak to me.

On that trip my state kept worsening and in the night my mother wheeled me down to St Marys a&e. I ended up collapsing and being admitted. Flights had to be changed. It was a disaster.

Getting admitted and stuck in hospital in London was not ideal. It was interesting to see a nhs hospital compared to ours.

But this is the reality of traveling abroad for care when you are severely Ill its a massive risk and these are the risks you take to hopefully get help.

Traveling when ill really took its toll on me. And these were better days. There’s no pictures of the worst days.

I was back again in June for one of the hardest weeks of testing. Full autonomic testing which is not available in Ireland and an upright MRI again not available in Ireland. But still had to be self funded.
I was diagnosed with a complication called Chiari and Atlantoaxial Instability. That’s were things got complicated. My scans were sent to one of the only surgeons that operated on this. But wait for it… hes only in America. Yup America. Like traveling to London wasn’t hard enough to fund and do.

One of the hardest diagnoses yet. Hugs with my son while having fun straight after the results. Being fitted with collar for aai instability

The autonomic tests revealed more issues with my autonomic system than originally thought and more meds had to be started. I was also diagnosed with gastropaerisis , paralysis of my stomach which explained why I couldn’t hold down food.

I have Postural Tachycardia and a life threatening Ventricular Tachychardia. I have full autonomic dysfunction and I need iv fluids as I lose blood volume. Oxygen helps when I am symptomatic.

Again I had to go on a plane home, have more fundraisers to get back again for more help.
With getting news like Chiari and instability its extremely hard to digest it and come to terms with what you will do how you will deal with it in your own mind and for your family too.

When you are fundraising for your medical care and other people are donating and helping you, you have to fill them in on the details of your trip

 You have to be very transparent on what doctors you saw, what tests you had , what they led to and what’s the next step.

Its like having an investor and you have to tell these investors where their money is going and that is it well spent. I have a responsibility to others.

But it is very hard when you get bad news and you’ve to share it on a public platform like Facebook , you have to put up personal details about your medical care for everyone including some people who don’t even support you to read. That’s very hard for someone like me who never shared their illness. And has to get their hard around even more serious diagnoses.

Its been 2 years and 9 months of traveling over and back to London for treatment and care now.

I’m on my twelfth trip, my consultants here liase with my consultants in London now and I’ve a great care plan in place. Each trip is still not any easier.

 I’d to get to my lowest before it happened that I got a very good care plan here. My lowest being in February 2015 having a cardiac crisis being taken by the cardiac response unit into resus and resuscitated for 2 hours.
That’s how low I was allowed go before help was given to me here. It should never have been that way.

I haven’t had surgery for my instability and chiari even though I suffer miserably with it and am left with no quality of life. I watch others trying to fundraise unthinkable amounts of money to take on that journey to have that surgery. 

When they are extremely unwell raising hundreds of thousands and having to travel to America for life changing surgery.Its just not right. No one should be put through that.  

When do the Government step in and take over. My last trip to London was in August. When looking at my scans my Neurovascular Consultant said my heart rate would never be ok once I had a kink in my brain stem. That cannot be fixed without surgery. A surgery that costs close to €100,000 excluding American hospital costs, travel and accommodation for the few months you are there.

There are young people in Ireland right now fundraising these huge costs to have this surgery.

The other option is to suffer unbelievably and ignore the fact that this can cause a stroke or parlyisis or any other neurological attack at any time.

So right now I travel to London every 12 weeks for injections in queens square neurology to help manage the pain.

Some of the MCN Blocks and Botox I have at Queens Sq Neurology Hospital in London. The HSE uses a generic form of botox that wasnt used in the trials that I need it for so it is not as effective as what I have done in London.

The Neurovascular Consultant there helps with meds to control my heart and the problems with my autonomic nervous system, vascular system and blood vessels. He is just fantastic.

I have to have another upright MRI again next month. Again not available in Ireland. I need it for my full spine costing £2,700 😣 again self funding.

I have Skype consults arranged with the neurosurgeon in America which you still pay for but saves a trip just for a consult.

I am also having genetic testing for all ctd disorders at a cost of £2,500 , my Neurovascular Consultant said this is important now especially with the kink in brain stem.

So that’s just my next trip with only 1/3 of figures shown. That’s what me and many other patients including young children are forced into when you have this condition in our country.when youre so ill you are forced to pay so much to get help as there are no expertise in this country.

The people who continue to help and support me can never be thanked enough. You’ve given me my freedom to be at home everyday instead of hospital like I was. You gave me hope when I was given none, and you continue to give me the hope every three months when I go back to London and I’m not faced with doctors who won’t try and won’t give up on me.

My consultants in London liasing with my doctors here has put a good care plan in place and allows me to have ‘hospital at home’. I do not spend weeks on end in hospital any more as i have an urgent care policy. This has made a huge difference to my life.

It truly is a gift and thank you all so much.
To everyone else in my position who travel over and back to London for help .I know its very draining and it feels like such a slow process . But after nearly 3 Years of traveling to London there is hope.

If you get as ill as I did, dont give up there is some across the water.

Your community , family and friends can be more amazing than you ever know.
And to the the Government you need to stand up and recognize the needs of patients like us with rare diseases and stop making us fundraise for our lives.

 If you are still with me Im sorry this was such a long post. Its taken me well over a week to write bit by bit 😴

Thank you for reading as always ,

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