Fibro Warrior of the Week (#36)
FWOTW: Jayne Burgess
Location: Northamptonshire, UK
Mantra: It’s a bad day not a bad life.
Fibro Warrior of the Week #36 is Jayne Burgess, a young woman who loves working with children and maintains a positive outlook about being chronically ill. She also loves dogs (when she remembers her family has them…)
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Jayne: I was born in a small town pretty much smack bang in the center of the UK. I have lived here all my life. I live with my mum (Lyn), dad (Arthur), my older brother (Matthew) who has recently moved out and my two Jack Russells. I also have an amazing supportive boyfriend (Ben) of three years. I walk with a walking stick; I relied on it this time last year, but I am starting to use it less, like only on days where there is a lot of standing/walking. People always give me weird looks because I am so young with a stick, but it has helped me get my life back and allows me to do more.
I recently have started a part time job working lunch times in a local nursery. I love being with and working around young children. In my mind, it is the most rewarding job and they always manage to brighten my day. I also love my music— I believe that music is the best therapy for any mood and there is nothing better than being at a live gig. I also love walking and I try to keep as active as I can.
FD: When did you first suspect that something wasn’t right? What happened?
Jayne: Looking back now I can see early signs and symptoms of my Fibromyalgia from the age of about twelve to thirteen, if not earlier. As a child, I was always extremely fatigued, struggled with migraines and mysterious aches/pains. I got really ill in September, 2011, with a throat virus that then led on to my health deteriorating quickly which then led onto my Fibromyalgia appearing/coming to the surface.
FD: When were you diagnosed with Fibromyalgia?
Jayne: I was diagnosed with Fibromyalgia in February, 2012, when I was just nineteen, after about five months of being treated and tested for what doctors thought were other conditions such as Vitamin D deficiency (which I also have), thyroid problems, glandular fever and diabetes.
FD: When you received your diagnosis, how did it affect you?
Jayne: I had seen a doctor prior to being officially diagnosed and had a friend from America who both suspected that it was Fibromyalgia. So I had done a little research on what it actually was so in a way, I guess I was prepared for it. But that does not mean in anyway that it was easy to accept although there was the HUGE relief of having some kind of answer to what was going on with my body.
FD: Since then, how has your outlook on life changed?
Jayne: I still think nearly two years on, I struggle from time to time to fully process that I am diagnosed with this condition… it is just such a shock to the system to have it all happen so suddenly. Though in a way I wouldn’t change it all because it has made me develop into the person I am, it has changed my outlook on life so much. I am so appreciative and thankful for the little things in life. I have made so many friends online who suffer from chronic pain/illness. My outlook is more positive than it was when I was first diagnosed, but it still can be tough; we all have our bad days.
FD: How does Fibro affect your day-to-day life?
Jayne Fibro has changed how I go about my day in every way. I go to sleep and wake up in pain, with aches and weird sensations throughout my body. I now take a handful of medication to help me function. I have to plan every aspect of my day from going out to coffee to make sure I have the energy to simply make myself a snack. Every day with Fibro is unpredictable and no matter how much you plan things you never know if when you wake up if you’ll even be able to get out of bed. I rely on people a lot more daily for even the smallest tasks. I have had to learn to be a lot more understanding and listen to my own body because I can be stubborn which can result in more harm than it’s worth.
FD: What can’t you do anymore because of Fibro?
Jayne: There is a lot I can’t do anymore: I can’t work full time in a job I adored, I can’t lead a very active social life, I can’t just do spontaneous trips out, etc. However, I tend to try not to look back now at the things I can’t do because I find it upsets me and it takes my focus off the things I can do now, despite having Fibro.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Jayne: It has surprised me a lot because there is so much I can do even with Fibro. I thought when I was diagnosed that was it: I’d be stuck in bed all the time feeling sorry for myself and being depressed for the rest of my life. But I have actively got myself to do things I never thought I would. Getting back into work is a huge one because I was convinced that I would never work again (especially in a nursery environment.) I have had weekends away, days out, and the main one for me is that I completed a 5km Race for life charity walk (which I used to do when I was healthy.) Just because I have a chronic illness does not mean I will not succeed in life and achieve lots.
FD: : What has been your experience with seeking medical treatment for Fibro?
Jayne: To start off with, it was frustrating seeing doctor after doctor with no answers being found. I was lucky though that it only took me five months to find a doctor who believed me and knew what was wrong with me. When it came to being treated at the hospital, I had the worst experience. I knew more about Fibro than my rheumatologist and he had no way of treating me. Told me to come off all my pain prescribed medication and to take over the counter ibroprofen and to do daily exercise. Luckily I was only under his care for a year and now I am back to seeing the doctor who diagnosed me. He has been so helpful and has made my experience positive and gives me hope for other doctors out there.
FD: How has Fibro affected your relationships, friends, family, partners?
Jayne: I feel that I am a lot closer to my family since becoming ill. I rely on them a lot and they have to help me out with daily tasks. They sometimes have to change plans, rearrange things to make it possible for me to attend or join in. I am so well looked after by them and I am so thankful for them every day.
My boyfriend is so truly amazing. We have been together since before I got ill and he has been by my side the whole time. Ben has been there for the days I can’t get out of bed. He looks after me so well (better than I look after myself); cooks for me when he knows I need a nap. He treats me so well and knows how to cheer me up when I am having a bad day and in a lot of pain.
I cannot even begin to understand how hard it has been for my family and Ben to watch me go from an active eighteen year old to then watch my health deteriorate and seeing me change so much over time.
As for friends, I lost a lot of them when I got ill. I guess it was a way of finding out who my true friends were. I still have one or two who are amazing and still include me in their plans. They don’t mind that I walk with a stick or that I need to take my time and they understand if I have to cancel last minute due to a flare up. But mainly I rely and connect with the amazing people I have found online— the chronic illness community online is the best thing they are always there and I cannot believe how many people I have befriended from around the world who are in the same situation as me.
FD: What is the biggest challenge you face living with Fibro?
Jayne: There are so many things that have challenged me now I’m living with Fibro. Keeping active is a huge one. I liked my exercise, going for walks, etc., before I got ill and now as much as I enjoy it still, I worry a lot that I’m going to overdo it or injure myself. Saying that, I guess I could say that pacing myself so I don’t overdo it is a huge challenge. I don’t think you ever really learn to pace yourself because let’s be honest life doesn’t stop for you because you’re struggling; you have to keep going which has lead into burning yourself out
FD: What inspires you to keep on fighting?
Jayne: There are two main things: the good days and the online chronic illness community.
Compared to last year, this year I think I have had more good days than bad (I still definitely have a fare few bad days.) But on the days where I can’t get out of bed or my mood is really low, I like to spend the time looking at memories from the good days; reminding myself that not every day will be bad. I have a fantastic family and boyfriend and despite it all I am still pretty lucky for the life I have.
Also, the community that I have connected with online through Twitter/Facebook/Tumblr/Instagram inspires me so much. I know I can turn to them when I’m struggling for advice, tips or even just a chat, who can understand what I am going through. The online community have kept me going so much, honestly don’t know where I’d be without them all.
FD: What advice do you have for other people who are living with Fibro?
Jayne It’s okay to be scared, angry and sad. There are going to be a lot of emotions when you are first diagnosed and you need to realize it’s okay to feel the way you do. Use the people around you to support you, don’t beat yourself up or bottle up emotions. Remember they are struggling right now, too, with all this so they will want to talk to you, too… let them know that it’s okay to talk.
Do research, use online forums/websites and blogs to your advantage. There are so many people out there in very similar if not the same position as you and there are going to be more than welcome to help you and support you. You are not alone in this. Find support where you can online or even look for support groups in your community.
There will most likely be changes in your life that you’re going to have to face. There are ways around the things that you need to change and over time you will see how you can still have a good time and a good life.
Your life isn’t over just because you’re ill. Just over a year ago when I was diagnosed, I was devastated and I thought, “That’s it, my life is over.” I lost things I had, but I have gained so much I never thought I would. You can get a lot out of your chronic illness and pain, and your life can still be amazing and you can still be happy and proud of things you achieve.
FD: Do you have a funny Fibro story you can share?
Jayne: Laughter and making jokes about my Fibro has always been a way for me to cope. Fibro/Brain Fog is the worst. I find myself doing stupid things like putting things in the wrong cupboards, walking into rooms with no idea what I was doing. The weirdest one I had was forgetting that dogs exist. We have always had at least one dog in our house since I was born; one day last year, I jumped a mile and couldn’t work out why an animal had ran past me in our house. I could not process that dogs existed and that we had two living in ou house! Fibro Fog makes me doing the weirdest things. I find you have to laugh at these things, it’s just a better outlook to have.
Follow Jayne on Twitter: @chroniccraftyjb
Follow Jayne on Facebook: Chronically Crafty
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