Rosevibe

A while back Sean Fisher asked to interview me as part of his journalism coursework, he wanted to ask me things about ME/CFS and how it affected my life.
Sean was actually living with me when I first came down with the illness so he knew me before, during and after and has seen first hand how debilitating it is and just what a change it makes to a persons life – which is why I agreed, I hate to talk about those things normally because I cry, just thinking about it makes me cry – I hate crying, especially in front of other people so normally I’ll either avoid the topic or make some throwaway statement before hastily changing the subject.

I’m getting better at mentioning it without outright blubbing, but the second I feel the emotion welling up I change the subject – it’s embarrassing! Still, not as embarrassing as this interview lol he makes me out to be some kind of hero! I did say I’d put it up when he sent it to me though so here ya go..

Vicky Stringer is thirty years old and lived an incredibly active life until three years ago when she became ill and was diagnosed with Chronic Fatigue Syndrome, or CFS. Since then, she has seen her life change dramatically from holding down multiple jobs to being physically unable to get out of bed. Sean Fisher sat down to talk with her about her condition.

“My approach to this illness ninety percent of the time is just not to think about it.”, she says. “It’s really the only way you can live with it because if you sit there and delve into it, you’ll just be depressed. You won’t get out of bed because what’s the point? What is there to get out of bed for?”. Her voice wavers and she pauses for a long time, rolling the thought around in her head. She begins to cry and says that this is why she never talks about it when she’s in public. “No one ever wants to admit just how bad things are.”

Before Vicky became ill, she worked two jobs, one at a call centre and one as a bouncer at a club in the city centre. When she talks about that time in her life she speaks with exasperation in her voice. “I hardly got any sleep, didn’t eat right – I was basically living on those nourishment drinks because I literally didn’t have any time to cook. I’d get home from working at the club, go on-line to chill out or talk to people, get a couple of hours sleep and then head straight out to work in the morning. I was doing a lot… When I started getting more and more tired I just thought it was that”.

Around August of 2004, Vicky was diagnosed with CFS. It’s a term often used synonymously with ME (Myalgic Encephalomyelitus) and PVFS (Post-Viral Fatigue Syndrome). Although these are different conditions, the terminology is so muddled by the media, the symptoms so strikingly similar and the methods of diagnosis so generic that one term might as well be substituted for another. Even doctors have trouble correctly diagnosing the condition. Because its symptoms are so different and wide-ranging, the only way it can be properly diagnosed is by process of elimination and even that is problematic. The symptoms range from problems with the immune system to digestive problems, from depression to respiratory problems. The most common overlapping symptom of these conditions is extreme mental and physical exhaustion. A milder case might involve a person suddenly feeling exhausted for no reason during the course of their day and needing to sleep. In severe cases, people are confined to their beds unable to move even to reach for a glass of water. Vicky lies in the middle of this spectrum. She has good days and bad days. The bad days see her having innumerable sudden onsets of total exhaustion. She’ll be fine for an hour, then suddenly lie down and be unable to move or communicate in anything but simple grunting. In total, it took around six months after getting ill for her to be correctly diagnosed.

During those six months, Vicky searched the internet for any answers she could about the symptoms she was suffering. “I don’t know how people dealt with this before the internet”, she says. “It’s invaluable when you’re more or less trapped in your house. It’s a life-line. I think it is the biggest necessity for anyone with a disabling illness of any kind”. She has even gone so far as to create websites collecting all the information and advice she can give others about what she has learned about the illness. Vicky goes on to tell me about the support groups she visits, which are mostly held on-line through internet chat-rooms and message-boards. “I’ve actually made a lot of really good friends through there, and it’s helped me learn so much about the condition. If I hadn’t been on-line, I wouldn’t have met Stef’.

Stefanio is Vicky’s boyfriend of nearly two years. “I’d be buggered without him”, she grins. “Stef takes a lot of the strain off. When I’m having a really bad day and I can’t make it to the toilet, he picks me up and carries me there. I mean, he has to but you get the idea”. When Vicky talks about Stef, a lot of the weight falls from her. She brightens up and talks about him lovingly. “I think about it and I still can’t believe it. I met him on-line and he didn’t know me from Adam. When he found out about the illness he didn’t just stick around, he basically became my carer. He’s the person that I’ll probably spend the rest of my life with”.

Vicky explains that even if Stef wasn’t there, she would probably get by somehow. “It wouldn’t be easy, but it’s possible. There are people who have it much worse than me out there”. Financially, though the strain would probably be too much. Vicky hasn’t been able to work ever since she first became ill. She took an extended leave from her job at the call centre and they were good enough to keep her on sick pay for as long as possible. However, that couldn’t last forever. Currently Vicky receives incapacity benefit, but she isn’t happy about it. “If any of the people with this condition could work, they would. People with conditions like this seem to be assessed on the same basis as people who’ve been on Jobseekers allowance for the last three years and it’s just not the same situation. The only time people like me are in a fit state to be assessed for benefits is when we’re having a good day. Of course, this means they never see us on the bad days and don’t tend to believe us when we tell them”. Vicky’s understandably frustrated. She’s trying desperately to find a way to work from home. She’s currently learning web design and practices making her own jewellery at home. “I just have to keep active”, she tells me.

Despite all the trials Vicky’s been through over the past three years, she has an overwhelmingly positive attitude towards her condition and her future.. “I can look back at the life I had before and while it seemed absolutely brilliant at the time, I wasn’t actually doing anything. I was spending my spare time going out and drinking. I was talking to people who, on reflection, weren’t friends. Having this makes you really know who your friends are. It focuses you in a lot of ways. Because I have so little time when I can actually be active, I feel like I have to force myself to do something constructive with my time. I couldn’t have done that before. This forces you to spend so much time looking at yourself, and I think I’ve learned a lot about myself because of it. I know who I am now, and I wouldn’t have that without this illness”.

Edited to include a link to Sean Fisher on twitter – feel free to follow his occasional vitriolic forays into the microblogging stream, i just wish he wrote more – the guy is an undiscovered genius..