When did you first find out you were living with hepatitis C? It was around 1997. At that time, there wasn’t really much information available about hepatitis C. I don’t really recall being told an awful lot about it. After the test, they informed my GP but there was never any follow up. I just sort of put it out of my mind because there were no symptoms at the time.
Did your diagnosis have an impact on your day to day life? Not really at first. I was getting on with my life, working away. Sometimes I was tired but you just put it down to being busy and getting older. It was only a couple of years ago that things began to impact on my health with quite severe consequences. I’d been taking a short break from working because I’d been feeling really tired. I was living on savings but as that was running out, I started looking for work. At one interview, I felt so ill I had to leave the room and find a quiet place to sit. I had really heavy bleeding which I put down to women’s troubles. I hate to say it. I should never have ignored it, but I did. I didn’t put it down to hepatitis C at all because no one had ever mentioned it to me. I got the job and was due to start in the August. The morning of my first day, I was rushed to hospital. I needed a blood transfusion and I was seriously ill. That’s when everything finally came to light. It turned out I had cirrhosis of the liver and that I was retaining a lot of water. Over a few days I lost about 3 stone in fluids. It was all a bit of a shock. After so many years of not thinking about hep C, it was suddenly having a massive impact on my body and my health.
When did you first come in to contact with Waverley Care? It was just after being in hospital. I’d never really heard of Waverley Care. If something doesn’t affect you, you often won’t know about it. I wasn’t well enough to go home and the hospital weren’t sure where to put me. Allison from Waverley Care came to see me and told me about Milestone. At the time I thought ‘no, I can’t do this’. I didn’t know the place, it was unknown and I just wanted to go home but it wasn’t possible. I ended up going, and I have to say the staff were amazing. Without Waverley Care, I don’t think I would ever have got through this on my own. I’ve got a lot to thank them for. The staff at Milestone were there for support at a time when I didn’t know what was happening and I was scared. They encouraged me, looked out for my health, made sure I built myself up again. There was always somebody there if you needed to speak to them. I can’t fault them in any way.
Can you tell us about the treatment and how it affected you? At first, my doctors and consultants weren’t keen to put me on the treatment, simply because they had to make sure I was ready in terms of things like cutting out alcohol. But, when someone tells you that you nearly died, to me it was easy to stop drinking immediately. They monitored me for a wee while and were satisfied I could go ahead with the treatment. I was taking two different drugs, Epclusa and Ribavirin. In total it was seven pills a day. I found the drugs very easy to take. I’d take my first dose at 10 in the morning and then another at 10 in the evening. I didn’t have any massive side-effects I have to say. I was very, very tired a lot of the time, sometimes I felt a bit nauseous, slight headaches but nothing major. In general, I could go about my daily life without it affecting me. I have heard stories from others who have struggled a bit more. Everyone has their own experience. I’ve been lucky.
Following on from the treatment, you got confirmation that you had cleared hepatitis C. Can you tell us how you felt when you found out? I can’t describe the feeling of elation I felt. I cried my heart out, but I can assure you it was tears of happiness. The first phone call I made when I received the news was to Milestone as I don’t think I could have done it without their support.
Do you take any positives away from your experience? To be honest, it has been a really stressful time. But I have been able to find positives. I had to find out a lot of information about hep C. I don’t think people are always informed enough, not so much about the treatment, but about the dos and don’ts of living with hep C. Waverley Care helped me to learn a lot, as did speaking to other people I’ve met living with the condition. The positive for me is that it has changed my outlook on life completely. Being in an unusual environment at Milestone opened my eyes and has made me a better person. There’s a lot of people out there that need help and people need to understand illnesses more. I’ve learned so much that I didn’t know before that I now want to change my career to do something to help people. That for me is a real positive because I’ve got a better understanding of people. At Milestone, a lot of people that are coming in have got hepatitis C and they’ve maybe just been newly diagnosed. I would hope, and I’ve been told, that I was a very positive person to have around. I would say to people if they had any questions to not hesitate to ask me, and if I could help them I would. I just tried to encourage people as much as possible. People always say I have a smile on my face and that’s what I want to come across. Sometimes I’d cry in my room at night but there was always a light at the end of the tunnel. I would love to do more to share my experiences with people who are going through the same kind of things.
Since coming in to contact with Waverley Care, you’ve become a volunteer and now a member of staff. Why did you want to get involved? Probably the main thing is that I would like to give something back. I’ve developed a genuine interest in hepatitis C and HIV and, because I’ve been on the other side of it, I can see where people maybe need a little more help and encouragement. If I can help one person, I’ll be delighted.
Do you have a favourite Waverley Care memory? A lot of my experiences relate to being at Milestone. I can’t single out one memory because there are so many. I could have written a book. I’ve met some wonderful people and I’ve had great laughs. I stayed there maybe longer than a lot of people but it wasn’t a bad thing. I loved it.
What would you say to someone who was thinking about supporting Waverley Care with their time or money? I would say definitely. I think HIV and hepatitis C are worthwhile causes that probably don’t get the attention they deserve. I think they are sometimes forgotten about. In terms of hep C, people maybe think that after the treatment, you’re fine, forgetting that people are still fragile. A lot of it is down to people not knowing, which is something that Waverley Care is trying to change.
Away from Waverley Care, what do you like to do with your time? My life has changed so much in recent times that my interests are changing too. I like to try things that keep me calm. I love the art therapy colouring books for adults, I’ve tried out a few relaxation classes and I’ve been lucky to get the chance to access massages and reiki from Waverley Care. I think things like that allow you to take your mind off other things that are going on, and you can switch off. It gives you time when you don’t need to think about the challenges. When you’re tired and not feeling 100%, it’s a lovely thing to find something that helps you relax, even for a short while.
What keeps you entertained? I’m not a big TV person, but I love a romcom. I’m also really into music and I’ve always got something on. I’ll listen to pretty much anything except for heavy metal! My favourites are reggae, soul and funk, and I love Bob Marley!
What’s your favourite meal? Without a doubt, it’s Indian food. I love a bit of spice and end up adding chilli flakes to just about anything! I enjoy cooking and I’d like to learn to make a really good curry!
Where’s your favourite place to go on holiday? I love Spain. If I had money I’d buy a wee holiday home. I’ve been to a place called Calella, just outside Barcelona and it’s beautiful. That said, if the weather’s nice, I’m quite happy staying in Scotland!
What are your hopes and plans for the future? After my experience with Hepatitis C, my mindset has been completely changed. I’d really like to get into work where I can help and support people. If people don’t know that support is there, they won’t ask for it, but everybody needs help at some point. I’d like to get that across to people.
Who inspires you? There’s no particular individual I would pick out. At the moment, I think I’m trying to inspire myself to be a better person, and someone that other people can look at and think she’s done well.