Raindrops of Sapphire
An interview with Lorna Burford, one of the leading fashion bloggers in the UK, about her life with Myalgic Encephalomyelitis. Lorna was interviewed by M.E. Support Founder and Webmaster, Louise Sargent, on 21 August 2015.
Please tell us about your life leading up to your ill health.
I used to be extremely active when I was younger; every day I was playing sports and outside with friends. Football, tennis and running were my favourites. All of my childhood I lived a very tomboy life and one that was full of energy. I started to notice symptoms of tiredness and sore throats when I was about 13 years old, but I didn't know what they were at the time. These got worse as weeks went by and my glands started to become sore and painful as well as getting frequent sickness and general illness. As I have always been so active, I might not have known how to rest as much as I should have back then as I was so young, but all of these symptoms (which I now know to be Glandular Fever) then led onto M.E. symptoms and it got worse and worse. At age 14 I ended up leaving school because I couldn't attend it properly any more; some days I couldn't even get out of bed through sheer exhaustion and muscle weakness. I was tired all the time, I felt ill and my brain definitely wasn't what it used to be. I had trouble finding the right words to speak, I couldn't understand what people were saying, I had very bad mental fog and this left me unable to really focus or do anything any more. I then started to get Raynaud’s, food intolerances, allergies and sensitivities to smells, temporary paralysis and so much more that was associated, all at the age of 14, so my life definitely changed.
When and how were you diagnosed with M.E.?
I had been going back and forth from the doctors almost monthly with my symptoms since I was 13, but none of them really knew what was wrong with me and that was very stressful. I don't think M.E. was known as well back then as it is today and it meant that I wasn't taken as seriously as I wanted to be or I was just pushed around from doctor to doctor. I eventually found a great doctor when I was about 14-and-a-half and she understood my symptoms; through process of elimination, I was diagnosed with M.E. after about a year of trying to figure out what was wrong with me. Shortly afterwards, I was sent to a child specialist in M.E. at the hospital and had numerous visits to him, learning how to pace myself and understand exactly what I was going through. I was also sent for therapy so I had someone to talk to who understood my situation. It definitely took a while to get the diagnosis and someone to really take me seriously, but I'm glad it eventually happened.
Can you tell us how you and your loved ones reacted to the diagnosis?
I can't remember a whole lot about their reaction as I was really young. When you're a child, I know your parents try to protect you as much as they can and not show any weakness around you, so actually my mum and dad were really supportive and understanding about everything. My mum took care of me every day when I was really ill and my dad would always be supportive when I went to his house. My grandparents had a harder time understanding it though, as it was not something that was known when they were younger, and I did actually lose most of my friends because I couldn't go out and socialise anymore. But the people who were important to me were definitely there for me.
It has been 13 years since you were diagnosed. How are you now?
It's definitely been a huge roller coaster for me. There have been points in my life where I have got a lot better, then had relapses, then got better, then relapsed again; my current state is 90% better, but a slight relapse has happened in the past couple of months. Life changed so much for me: I developed social anxiety, I never really left the house, I couldn't socialise with people because it was something I wasn't used to any more, and I lost all my confidence. I would have panic attacks in public if I went out and it was horrendous. I had the therapy until I was about 18 years old and, since the child services stop at that age, I was then left to my own devices. I found that hard because I had no support any more. They put me in group therapy, but I couldn't deal with that and ended up having a panic attack there too. I then had a relapse and started to get quite bad again in terms of health, but overall if I were to put it as a graph, it would be a wavy line but the general direction of that line is upwards, so I know I am improving a lot. I have got over most of my social anxiety now, I rarely have panic attacks, I can travel (accompanied) further and even go on short holidays without too much repercussion now.
How do you manage your symptoms?
I learned with the help of specialists when I was younger that I needed to pace myself, meaning that I needed to only do a certain amount each day and repeat it every day, then slowly learn to increase it. My body would tell me if I was pushing it too far and it was definitely a learning curve, one that I found extremely hard, being so young. The doctors wanted to put me on anti-depressants for my mood but I refused them politely as I don't generally like medications, I prefer to fix the root causes. I have truly found that a purely healthy diet and a positive mindset help me the most. I find when I start putting overly-processed foods into my body, I start to feel sick. When I eat a good amount of vegetables, fruits and healthy grains and proteins, I do feel a lot better as I've given my body the fuel it needs to function the best it can. I only drink water or fresh fruit juices now too, and I try to stick with a calm and quiet mentality. This has been so important and a life saver to me because I used to let the negativity overwhelm me, and that was even more draining as it would take up all my left over energy to feel that way. Vitamin C also helps me to not pick up too many germs and I make sure I always wash my hands whenever I'm in public because when an M.E. sufferer, I'm sure you know, gets a regular bug like a cold or flu, it knocks them back ten times worse than a regular person, so avoiding germs is a huge thing that I make sure I try to do. I also try to rest as much as I can, especially if I have been walking for a while, because I tend to get leg paralysis and I can't move them.
Do you think it is difficult for people to understand M.E. and how debilitating it can be?
I do, very much so. I don't think anyone who hasn't had a certain illness or issue can fully understand anything that someone who has is going through in general. I often had people say to me, “Oh yeah, I get really tired sometimes too," and "just go out for a run and build up your stamina, that's what you need to do”. It was very frustrating that they couldn't actually understand that it's not anything like what they think. I remember being really hurt once when a friend of a friend was extremely rude to me and told me that M.E. is just all about me, me, me. They thought that people with M.E. were just plain lazy because there's nothing physically wrong with them. That was one of the worst cases I've come across, but otherwise a lot of people can empathise and ask you questions about what it's like; surprisingly, since I went public with it on my blog after five years, the readers have been extremely supportive and understanding, which is amazing.
What advice would you give to other people living with M.E.?
Definitely make sure you don't feel alone, so join a community or find other people online that have the illness too so you can chat to someone who fully understands and knows your symptoms are the same as others’. It's extremely important to share and know that you have someone there for you. Surrounding yourself with loving friends and family who understand is also important, but one thing I have understood as I've got older is the importance of enlightenment, if I were to call it that. Books like The Power of Now by Eckhart Tolle and Siddhartha by Herman Hesse have helped me hugely in understanding how to keep control of your brain and not let it spiral out of your control into depression and self-worthlessness. It's taught me a lot on how to keep a positive attitude and to just accept what I have and find ways to work around it, rather than not do anything and complain because I can't. I think M.E. or any similar illness truly teaches us how to be mentally aware, strong and able to fight.
When and why did you start fashion blogging?
I had been blogging online in general for about eight years as I kind of made a life for myself online on forums, otherwise I would have felt extremely alone. But in 2010, I decided to open my personal blog Raindrops of Sapphire as I wanted a place of my own to be able to share my likes, loves and outfits with other similar minded people. It was definitely something I loved doing and, coming from a creative background, it fed that need that I had to be creative and express myself as I was struggling to do by just sitting at home. It's truly become a part of me now and I can't be without it; my blog has opened so many doors for me (like going on photoshoots, travelling to Italy, designing my own jeans and more) and for someone who wasn't able to really go outside much and socialise, it made me feel normal and it let things come to me rather than me having to go out and get them when I couldn't. I'm able to share my weekly outfits that I wear, with my boyfriend shooting the photos (he's really talented!), and I'm also able to have turned it into a job, so I'm a self-employed blogger now and I honestly wouldn't have expected this at all!
I then started a general fashion magazine online in 2012 called The Fashion Supernova so I could write about fashion in general and beauty, in a non-personal way. I keep my Raindrops blog personal to me, showcasing what I'm up to and what I'm wearing, but on The Fashion Supernova, I have a few writers on board who create great content with me and cover non-personal topics including look books, campaigns, new products, how to wear certain trends etc., and it works out really well. I'm still able to keep my love for fashion alive then!
In 2014, I started up The Jeans Blog. This is a site dedicated purely to denim and, as I have an expertise in the fabric, it's become one of my favourite sites to work on and I love it. I've been online and working with the denim community and industry for over eight years now, so I've really developed a vast knowledge and expertise on it, which was why having my own site dedicated to denim felt natural to me. I cover both men’s and women's denim on there, the latest trends, look books, how to wear certain jeans and everything you can think of related to jeans. So many people love and wear them on a daily basis, it's amazing to see how much it grows each month! This site is now my main business actually, so I'm truly hoping it can grow more and more and I can add more denim experts to my small team!
Recently though, about a couple of months ago, I decided that I wanted to open up about having M.E. and share my story with my readers. I'd kept having M.E. a secret since I started blogging all those years ago, purely because I didn't want people to treat me differently or to just associate me with the girl who has M.E. I wanted to make sure that I could succeed in what I was doing on my own, and now that I felt like I had and I have developed a really lovely community on my blog with their support all the time, I decided it was time to share my truth with everyone. The reason that I did this was because I wanted other people who are going through M.E. to know that they are not alone and that dreams can definitely be achieved even when you have health setbacks. The point was, if I can do it, then really anyone can, and I wanted to inspire others to know that they don't have to sit back and be unhappy with a fight on their hands every day. It's worked out really well actually, as I've had so much support from everyone and so many people going through M.E. currently have opened up to me and I've been able to help them a little bit with advice on what worked for me and to be able to let them know that they aren't alone and can discuss their symptoms with me. It's actually been really rewarding to have so much good come from the bad and I'm really happy that I did it.
Is there anything else you would like to share?
I just want people out there to know that it does get better. It may not feel like it now, but it will, and after 13 years of having M.E., I am a lot, lot better than I was. There will be ups and downs, but please stay focused and positive, learn to accept and go around the obstacles and keep calm. Having a positive, strong mentality will help you immensely, as will fuelling your body with the right foods it needs to work at its best. There's always someone else out there going through what you are, so don't feel alone.