Living with Lyme: The Invisible Illness

L-R: Fiona Quilter, Miriam Morrison and Avril Winters who are all part of the North West Lyme Group and suffer from Lyme Disease. Pic: Sinéad Healy    

Lack of awareness of Lyme disease in Ireland means the illness is under reported and often goes un-treated. Lyme disease is an infectious disease caused by the Borelia bacteria and is transmitted by infected Ticks.The most common sign of infection is an expanding area of redness or what’s commonly known as a ‘bulls-eye rash’(pictured).   

(Bulls Eye Rash: Pic: Google Images)

The disease can lay dormant in your body and attacks when your immune system is weakened. Treatment is available in Ireland, but consists of a six week course of antibiotics, which may not always be enough.

Lyme disease causes flu-like symptoms such as fever, joint pain, headaches, heart-palpitations and if untreated with anti-biotics it can result in a range of symptoms similar to chronic fatigue, fibromyalgia, bells-palsy or multiple-sclerosis. 

However according to Dr John Lambert, a specialist in infectious diseases at the Mater Hospital in Dublin said it is ‘a poorly understood disease’ and the tests provided in Ireland for Lyme disease are often inadequate.

“The Lyme test is often negative, but patients can still have Lyme.  A positive test is helpful to say that the infection is there, but a negative test’s does not rule it out.  Doctors do not seem to understand this basic principle.  There are other infections similar to Lyme and other strains of the Lyme bacteria that are not picked up, so patients will get sick following a tick bite, the Lyme test is negative, and they are told ‘there is nothing wrong’ when indeed the wrong tests were done.

“Doctors debate whether Lyme can cause chronic infection, and argue over whether to treat with antibiotics for longer periods of time. Many are told just to treat for two to four weeks and no longer.  But there is good evidence that it requires longer courses of treatment if the infection has gone chronic, or has been in the system for a long period of time.

“There is a lack of awareness and a lack of studies to see how much Lyme we actually have in Ireland.  No one really knows. I think Lyme is on the increase, but also patients are more vocal now and raising the awareness and not settling for a ‘no’ answer. Patients are going out of the country to get ‘alternative’ Lyme tests done, which are more sensitive than the antibody tests done here.

“Irish patients travel all over the world so they may be picking up the infections from tick bites here (Donegal, Sligo, Galway, Kerry, Wicklow) or they may be bringing them back from the USA, Lanzarote and so forth.”

48-year old Fiona Quilter from Sligo contracted Lyme disease more than 8 years ago and is an advocate and member of the North-West Lyme Group. Fiona had her GP send blood tests to Germany where clinics specialise in treating patients with Lyme Disease. Within three days she was diagnosed with the bacterial disease.

Blood tests carried out in Ireland often do not test for Lyme, and therefore the treatment available across Europe is far more extensive. Doctors can treat it early once a rash appears after a bite, they can provide antibiotics that will stop it. 

However those suffering with the illness for years are not treated extensively in Ireland and are forced to travel to Germany and Czech Republic for intravenous antibiotics, vitamins, light therapy, oxygen therapy and many more treatments.    

“We want doctors in this country to recognise that this is an illness it is not all in our heads. We should be treated as citizens in this county and not have to go abroad for help.” said Fiona.

Miriam Morrison from Sligo received a tick bite in 2015 but it wasn’t until 2016 that she was diagnosed. She said the illness has affected every aspect of her life and was bed-bound due to pain and weakness in her legs.  

Avril Winters from Leitrim has been battling the illness for more than 10 years and believes the disease has changed her entire life for the worst. What began as an exciting holiday to Morocco in 2007 ended up changing her life after receiving a tick bite.

“I got the bull-rash on my leg where the bite was and I remember thinking, ‘I hope I don’t have this forever’

“Patients are learning to treat themselves in Ireland because doctors won’t listen. You get forgotten 

about if you don’t look sick. It can get depressing from not being heard and left to rot. I’ve had doctors treat me for depression when I knew it wasn’t mental, it was how I was physically feeling” said Avril.

In March 2014, Barry Cryan started feeling unwell and thought he was coming down with the common flu. His GP carried out routine tests, including one for Lyme Disease which all came back normal.  

Frustrated with the outcome and not feeling any better, Barry struggled with the disease for more than two years and found his memory was beginning to deteriorate. It wasn’t until he found Fiona’s story on Lyme disease in the local paper that he became aware of his options.  

“I had bloods sent to Germany and they showed that there was something badly wrong, in fact my immune system was compared with that which you would expect to see in a patient with HIV.” said Barry.

After an extensive few weeks of treatment in the Czech Republic more than 12 months ago, Barry is starting to feel ‘normal’ again. He believes that Lyme disease is rapidly increasing in Ireland – within a one mile radius of his home in Monasteraden County Sligo more than four people suffer from the disease.

“The test for Lyme Disease in Ireland is not accurate outside of a very small window when you get a tick bite, most doctors don’t recognise that. Just because you can’t find anything wrong it doesn’t mean there’s nothing wrong, it just means you’re probably looking in the wrong place.”

38 year-old Shirley Breslin from Athlone was bitten by a mosquito in 2010 resulting in a large bulls-eye rash. She wants people to be aware that while ticks are common with Lyme disease, any blood sucking insect can carry the bacteria and ultimately affect its host.

After presenting her rash to a doctor they told her it was a ‘normal skin reaction to a bite’.

“This normal reaction was a text book bulls-eye rash which is associated with Lyme Disease. Chances are if I received even one month of antibiotics then, I would not have the problems I have today. That can be hard to take at times as my world has been turned upside down.” 

Shirley has spent years suffering with insomnia, chronic fatigue, pain in muscles and joints, loss of power, spasms, twitches and various other side-effects of the disease. 

After losing the power of her legs she felt enough was enough and went in search of an answer.

Shirley eventually went on to receive treatment in the Czech Republic, she takes various medication, painkillers, and antibiotics but unfortunately still needs a lot more treatment due not only to Lyme but the co-infections that accompany it and the damage it's caused to her body and immune system. 

“All patients have asked for is accurate testing with adequate treatment for an adequate and appropriate amount of time – It is not a big ask.

“I'm one of the many who are now Chronic Lyme Disease Patients/Sufferers due to the failure of not providing a simple service, a basic right that any individual should receive.” said Shirley

To find out more and for support group see: Tick Talk Ireland

(This article first appeared in the Sligo Champion on May 2nd Edition)

My Granny

Some people are lucky enough to have both set of grandparents. 

I have only ever had my Granny Elizabeth - with my other grandparents passing away before I was born. 

I had the pleasure and absolute honor to interview not only my Grandmother for the Sligo Champion Down Memory Lane supplement but also I got to interview my best friends Teresa's Grandfather. 

First featured in the Sligo Champion Pictures: Sinéad Healy 

Making Poitín and the Big Snow of ‘47 recalled by Elizabeth

89-year old Elizabeth Haran was born in Flowerhill, Bunninadden in 1928 along with her three sisters and one brother. Going to Carrowreagh national school was her earliest childhood memories and she recalls fondly the memories of playing with her sister Christina as they made the 5 mile walk home.

“We would be all evening coming home; there was no hurry on us. We would sit down on the tar road, playing with marbles and spend the whole evening outside. But we would be killed when we got home.

“Then it would be books for the evening, our neighbour Pete would come in and the pencils would be missing - there would be none to do the sums.  He would put a rod or a stick in the fire, blacken it and that’s what we used to write with.” she says laughing.

“We eventually got bicycles to go to school, buying the tires was hard as they were scarce but we had a great time.”

Her mother stayed at home with the children, while her father worked in a pub in Bunninadden, moving barrels of whiskey and stout from Ballymote on a horse and trap while also working as a post-man for some time.

“There was no such thing as cars back then” explains Elizabeth.

World War Two made life difficult for many living in Ireland as Elizabeth recalls. “Tea was scarce as there was a ration alert and you only got so much and you had to make do with it. Everything was cut back then. It was scary you wouldn’t get everything, you just had to mind what you got and spare it.”

After her time in school she got a job in Gurteen minding children.

“I was there a good while with the Tansey’s. I liked doing it I had a great time, we used to go to dances and have boyfriends – oh ya I had a few of them!”

1947 was the year of the ‘Big Snow’, the coldest and harshest winter in living memory and while it was 70 years ago it is something Elizabeth will never forget.

“I was 19 at the time and everyone had to cut their way through the snow. People were walking on ditches and they didn’t know, the snow was as high as the house. No tractors could go, you couldn’t see outside.”

It was at this time she came to Coolaney and worked with a family housekeeping. This is where she met her late husband, John Haran. She got married at the age of 21 and began living in Carrownaboney, Coolaney with John and his mother Mary-Kate.

“There was no such thing as a wedding or any of that back then, we just came down from the chapel and drank tea in the house and got on with it. We had a great time when we were younger: we were in the dances in Coolaney, sometimes I would sit on the bar of the bike. We would go card playing in houses full of people.”

From there life become very busy for Elizabeth, she went on to have 11 children – four boys and seven girls, while also being a busy working wife of a farmer and helping to care for her mother-in-law.  

Every morning she was up at the crack of dawning, milking the cows and cutting silage to feed the cows.  

“The rest of the milk went into a creamery can: a 15 gallon can. I used to put it on the peddle of the bicycle and wheel it out the road to meet P Mc Hugh and he brought it to the creamery.

“That’s where we got our flour, butter and milk. You paid in milk if you wanted the groceries. At dinner time I would draw water from the spring well and bring it back to the house. I turned the garden into ridges planting potatoes, carrots, parsnips, onions, every type of veg and I baked all my life.”

Poitín making was generally produced in remote rural areas, away from the interference of the law. 

“We were never caught, thank god” she says laughing as she explains the cooking process in detail. “You had to make it on a foggy night so the Guards wouldn’t see the smoke. We would then hide the bottles in the ditches, the older people before us taught us how to do it.”

Tragedy struck in June 1974 when her husband John (48) was killed after the Honda 50 motorbike he was travelling on was struck with another vehicle and Elizabeth was left to rare the children.

“I have no regrets in life, I wouldn’t change a thing. Although I never learned to drive, I didn’t try - I hadn’t the time to do it. I was never sick in my life; I didn’t have time when the creamery can had to be over the road at 9!” she said laughing.

She credits hard work as her secret to her long life: “Work, Work, Work, plenty of work. I never looked back, thanks bit to god and I worked very hard all my life. Never marry a famer if you don’t want lots of work.” she smiled.

Apart from a short spell of illness in the last two years, Elizabeth is in great health: she does her own shopping every Friday in Ballymote, cooks the dinner, gets her done in the hairdresser and goes to Mass every Saturday evening and still has plenty of time to entertain the great-grandchildren.  

Elizabeth still lives in the house where she reared all 11 children along with her son Noel who still keeps the farm. She has 30 grandchildren and 15 great-grandchildren. 

Mental Health Ireland

As part of my Masters in Journalism I did a 5 minute video package for my Broadcasting module on the recent cuts to the Mental Health Budget in Ireland. I conducted this video on the 28th and 29th of April 2016, some information has changed since such as who the Health Minister is etc etc. 

It may not be as clean cut as you would like, and I am not an expert in final cut pro or have unreal camera skills, but nonetheless, the message is quiet clear. 

#IamAReason

Click here to watch on Youtube in HD. 

Sinéad

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Putting yourself out there...

The hours go by too fast, days off seem to be over in the blink of an eye but the days working seem to go on forever. Wishing our lives away instead of turning those dreams into a reality. I am constantly looking around at people my age who seem to have everything figured out and here I am making sandwiches in a 'glorified' coffee shop. Working long hours to only scrap by each week. What am I missing out on? Did I miss that day where they handed out the

 'grown up guide'.

I am 22 (the WRONG side of 22 I should add) and if I keep it up one day I will wake up and be 40 single, no career, still driving a shit car, going out three times a week only to scrap by until the next week. This post was not initially meant to be a depression session. I realize that I don't have it bad, but I can't but help compare myself to other people i.e my friends and fell like I have failed. There I gave said it. Failure. After three years in college and a lot of money I have a degree that doesn't get me very far. Now like I said this post was not intended to make me sound like a moaning myrtle. And as the quote above would suggest I am making my way to were I want to be.

So on a more POSITIVE note. I have decided to put myself out there realizing that if I want to be a writer I need to get more experience in writing (duh.....). So last month thanks to a friend I got to write a piece for the Galway Independent on my Interrailing experience.

You can read the full piece here.

As well as that I decided to get in contact with a local magazine in my area Sligo Now.  

I thought to hell with it I might as well put myself out there and the worst thing that can happen is that they can say is no? And the best? I can see my name in print. 

After a few weeks of no word I had given up hope but I got an email back from the editor himself who arranged a meeting and low and behold I have an interview piece written for Decembers issue.

Here's to putting yourself out there.

To not being afraid. 

You can fall on your face....

 but then again

you could get exactly what you've always wanted. 

Sinead

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Look its my face on a website......

HOW DID I NOT MENTION THIS?

Well better late then never.

But never under estimate the power of social media and a #hashtag . 

I may have only a mere 190 followers ( it tends to fluctuate quite regularly). 

But when I do use social media outlets to promote my posts of my blogs or photo's the hashtags 

#fblogger #bblogger #lblogger #irishblogger 

tend to be splattered all over the place I am sure to the annoyance of anyone having to read it. 

BUT nonetheless that is how you spread the word and last month I was posting more pictures and links and I got contacted by a woman on twitter saying that she was working for Irish website shemazing!

Now I was a little bit sketchy as her twitter account did not seem affiliated with the website but I tweeted her back and said it straight out and she kindly replied through the shemazing! twitter account.

Long story short they do a segment called Beauty Blogger of the Month and every two weeks they feature a beauty blogger. Now I am by now means claiming to be a beauty blogger but I do have an interest in beauty and I wasn't going to pass on an opportunity to showcase off my little blog.  

You can check out the piece here. 

Hashtags may seem like something small but without using them I would not have been able to be featured in the segment. I know this piece is something small and it may not seem like a big deal to a lot of people but it gave me another boost to keep on writing and doing what I love. 

Don't forget the power of a #hashtag

Sinead

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