Chest, heart and stroke health conditions are often linked, which is why NICHS works with all three. This story is about a lady who has had all three, plus other long term health conditions. It’s also a story about someone who is amazing and whose positive attitude despite all she’s been through is an inspiration. Meet Eileen…
“1994 was a memorable year for me. It’s the year I met my husband, Gary. When I say “met” actually we’d known each other for years as we lived near each other but 1994 was the year we started going out together. Gary’s brilliant. My absolute rock. I’m a very strong, positive person but having Gary there beside me has made things that bit easier. Because 1994 was also the year I was diagnosed with Lupus.
Not many people know what Lupus is, so without getting too medical, I’ll tell you. The type I have is Systemic Lupus Erythematosus. It’s an incurable condition that affects the immune system making it become hyperactive and attack normal healthy tissue. It can damage the joints and many systems of the body especially the kidneys, skin, heart, lungs and brain. Everything I’m about to tell you, all the health problems I have had, all stem from Lupus.
So back in 1994, I was 22 years old and working long hours as a retail manager. I remember one day bending down at the safe at work and not being able to get back up again. This happened a few times and I had to ask for help to get up. Eventually the pain in my joints was so bad that I went to the doctor, a newly qualified doctor who is still my GP and has given me incredible support over the years. He took one look at me, with the signature butterfly shaped rash on my face, and said to himself, “Lupus”. Blood tests confirmed it but his initial gut feeling was correct.
I was in terrible pain. I could barely walk and my joints were badly affected. I was admitted to Musgrave Hospital and given steroids. It was really bad at the start but eventually the doctors were able to get the symptoms under control and I was able to return home. My Dad had passed away of a heart attack when I was 16 and I lived with my Mum. It was lovely to return home.
So life went on. I was never well enough to return to work as the Lupus makes you very tired as well as causing pain. But other than that, and the medication, I mostly had my life back.
Then in February 2003, my kidneys failed. The kidneys are one of organs that Lupus can badly affect. I started having peritoneal dialysis during the night. I literally attached myself to my dialysis machine every night and the dialysis took place while I slept. When I read back on what I am writing, I can see how out of the ordinary it is, but really, it became part of life for me. I even took the machine on holiday! But I had to follow a strict diet, eliminating anything that would be difficult for my kidneys, and I couldn’t have any alcohol.
The Lupus was taking its toll on my lungs too and I developed bronchiectasis, which is inflammation of the tubes in the lungs. I started to use inhalers and was hospitalised twice. But again, the inhalers like the dialysis became part of everyday life.
However in 2005, I was rushed to hospital with Viral Meningitis. My immune system just wasn’t up to fighting the virus and I was in intensive care for a week, fighting for my life. I don’t remember anything about it but Gary and my Mum were warned I was very poorly and may not pull through. But I’m a fighter. I regained consciousness and after a further two weeks I was able to go home…to the new love of my life, a beautiful Poodle–Chihuahua cross called Toby. This was the first time, however, that I experienced aphasia, which means I found it difficult to speak and communicate. Friends would call me talkative, though I don’t think I am, so they found it funny that I couldn’t say everything I wanted to. I found it frustrating, but once the brain inflammation had calmed down, the aphasia went away and my speech came back.
But Lupus affects so much of the body and 2 years later, in January 2007, I had a heart attack. I had a pain in my chest and so asked Gary to get me some painkillers but they didn’t make it any easier. We went to the doctor, the same wonderful doctor who originally diagnosed me, and again, he knew immediately what the matter was and sent me to hospital. At that point, I hadn’t actually had a heart attack, but it was coming. The doctors and nurses kept an eye on me but it was Gary who realised when the heart attack came. The colour drained from my face and he had to call out for the doctors to come quickly. It was a bad one and I needed to have a stent fitted. But, I’ve had no problems at all with the stent and, this probably won’t surprise you, again life returned to normal.
Or as normal as a life can be when you are planning a wedding with Lupus, kidney failure, nightly dialysis, bronchiectasis, steroids, inhalers and a stent! Gary and I became husband and wife in May 2007, after being engaged for over 10 years. I can’t pay enough tribute to the wonderful man who has been by my side through all of this. I know that I have been not been at all lucky with my health, but I have been lucky in love and for that I am very grateful. And while I am telling you how lucky I am, I want to mention my Mum too whose love and care have made such a difference. Gary and I had a lovely honeymoon in Spain and life continued on….until December.
In December 2007, I had a stroke. Given all that I’ve already told you, you’ll know that when I say it was bad, it was bad. It was very scary. One morning, I woke up and couldn’t move. I was paralysed down my right hand side. I knew immediately that it was a stroke. Gary had already left for work but there was a phone by the bed and I phoned my Mum. I tried to speak but the words would hardly come out. I managed “Mummy” and “stroke, stroke”. She got the message and swung into action, calling an ambulance immediately.
At first I couldn’t move my legs, which really scared me. But at least my speech returned quickly enough. Lying in my hospital bed, I tried desperately to move them. Then on the 3rd day, I managed to wiggle my little toe. At least I thought I had. I waited until Gary came to visit and then wiggled my toe for him. I asked “Did you see it?” and when he answered “Yes!” that was all the sign I need to start my recovery. From there I worked hard with the physiotherapists and occupational therapists. Eventually I was able to be moved in a hoist, but rather than being a great step forward, that was very hard emotionally. In a hoist, you feel very vulnerable, you feel like a burden being moved from one place to the next, you feel like you’ve lost your dignity – it is really, really difficult. I didn’t like it at all.
But I didn’t sit and cry. There are so many people in this world who are worse off than me. You can’t let it get you down. But to be honest, 2007 was difficult. It was our first Christmas as a married couple and I spent it in hospital with my husband sneaking my dog in to see me inside his coat! But as I say, you can’t let it get you down. I spent 3 months in hospital and eventually was able to go home. I had a wheelchair, but rarely used it. Mostly I managed with a walking stick.
Apart from my mobility, the other big impact of the stroke was that I could no longer do my own dialysis at home as, basically, I needed two hands to be able to connect everything up and my right hand was too weak. So instead I spent three evenings a week in hospital from 7–11pm having dialysis. Actually it was brilliant craic – another silver lining!
Then one evening in 2009, I was having my dialysis when my phone rang. A suitable kidney had become available and all of a sudden, after 6½ years, a transplant was being discussed! There were hours and hours of tests and checks and then I was given the all clear to receive the kidney and was taken to the theatre.
The new kidney has been amazing. I’ve had no problems with it at all, and there have been some surprising side effects. Before the transplant I had used hearing aids but afterwards I no longer needed them. I also don’t have to stick to such a strict diet any more.
But there was a downside. Three days after the transplant, my blood pressure rose too high and I suffered a second stroke. It was Gary that spotted it. My blood pressure was being monitored but it was when I started to speak gobbledy gook and he saw the look of alarm in my eyes that he realised what was happening and called the doctors to my bed.
This time the stroke had a major affect on my speech. I could hardly talk. Often I know what I want to say but can’t make my mouth do it. I can’t always remember names or faces. Over time, I have found ways and means to lessen the mental block. I carry a notebook around to act as my memory when my actual memory lets me down. If I write words in the air with my finger, or tap out the number of syllables, I find it easier to say the word. But my speech does seem to get worse when I get tired. It’s almost like I only have so many words in me a day. I know my limits though and Gary is also very good at filling in the words and finishing my sentences – the opposite to most husbands and wives!
The stroke also affected my eyesight and I lost the peripheral vision on my right hand side, which means I can no longer drive. That’s been difficult and has really taken away my independence. There is good public transport where I live, but getting around isn’t easy for someone with limited vision who can be unsteady on her feet. I tend to ask the bus driver not to drive off until I am seated and they tend to be very good about it. But I have lost my confidence when it comes to going into the City Centre because if someone accidentally bumps into me on the right hand side where I can’t see them, then it is easy for me to just fall on the ground.
After my first stroke, I didn’t join any support groups. I didn’t know about any. But after my second stroke I found support groups very helpful. I go to a Young Stroke Group run by Northern Ireland Chest Heart & Stroke. With aphasia you have to push yourself. I’m good at that, but not everyone is. Being part of a group can help with that. If you shut yourself off from the world, you’ll only feel isolated and have no one to talk to, and, on a practical note, after a stroke you often need to practise talking. It’s done me a lot of good meeting people who have similar problems. Wonderful as Gary and my Mum are, it helps to speak to people in my group who have been through similar things, and share tips of how to overcome difficulties. Hopefully I’ve been able to help other people.
My life since my stroke in 2009 has been relatively normal. I had to learn to write with my left hand as my right hand remains affected by the stroke. I’ve started baking again. I can’t grip with my right hand but Gary has found lots of special equipment to make it easy for me to cook and bake despite this. It was difficult at first to remember the recipes for things I used to cook, but now I’m back to normal. I have lots of nephews and nieces who I love, and who love to eat my cakes. My dog Toby is now 9 years old and has a heart murmur, poor wee man. He’s actually on the same tablets as I’ve been on. But I didn’t fight so much about taking them!
And that’s me up to date. What message would I like to leave you with? I think it is that you have one life. You have no idea what is round the corner so you should live each day as if it were your last…as some day you’ll be right! Take care.
Eileen x “
Find out more about the stroke support that Northern Ireland Chest Heart and Stroke offers.