Today I’m interviewing Fibro Warrior Laura from North Lincolnshire, England, UK. She’s a newlywed who was only recently diagnosed with Fibromyalgia, in February of 2015, at the age of 27.
Give us some basics… Are you married? Kids? Pets? Work? What do you enjoy?
I got married last year to my partner of 5 years in a small ceremony in Sheffield. We live together, with our pet Japanese Shiba Inu, Hiro. I am on long-term sick leave, but work full-time in a college 30 miles away from my home. I love gardening and cannot wait for the springtime to come. I enjoy walking Hiro, swimming, yoga, reading, music and photography. I gained my Masters in Photography and Film in 2012. I teach photography part-time as well as working full-time.
What lead up to your diagnosis?
I had the symptoms on and off for many years but in the past two years the symptoms worsened due to 4 bouts of surgery on my pelvis in the space of 9 months. I had endless doctors trips, tests, and scans. It was an extremely tiring and stressful time for me. In February I was finally referred to see a Rheumatologist, who diagnosed me with Fibromyalgia. He said it was understandable that my symptoms had worsened due to surgery and the stress and worry from my other conditions. It has being an extremely tough three years for me but I’m glad I finally know what I have so I can take a hold of it.
What is your life like?
I just got married in July 2014, but my husband and I were already very familiar with hospitals and doctors! This was down to separate conditions but the Fibromyalgia was always sitting there in the background. My husband has being a massive support. I was working full-time and overtime, plus 1.5 hours a day traveling to and from work. This soon became too much for me and I would have bad flare-ups due to driving, pure exhaustion, and pain from my job. I don’t have any children and unfortunately was told last year I will not be able to have children naturally. It’s now an even more difficult choice to make with the Fibro.
How did your family initially handle your illness?
My family was very upset, my mum especially. They have being the best support I could ever have hoped for. My mum has researched the condition to no end and offers me lots of advice and help. She comes to see me everyday to help with housework, cooking, etc. on the days I am struggling. At first I wouldn’t ask for help because I was embarrassed and pride got in the way. I finally opened up to my mum and I’m glad I did as she’s being an absolute star and couldn’t manage without her.
What do you feel is the most challenging aspect of Fibro?
Just being able to try to do day-to-day tasks such as housework, shopping, driving, and some days even getting dressed. It’s very frustrating not being able to do the things you did day-to-day without even thinking about them. Now I feel daunted by doing cooking, cleaning etc.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have endometriosis, polycystic ovaries, and pelvic congestion syndrome. As a woman these conditions do not compliment my Fibro. When I am menstruating I am literally bed-ridden from the sheer pain and exhaustion. I also have to take medication for these conditions as well as medicine for my Fibro. I feel like I take too many meds and it can be difficult to remember the times I need to take them, dosage etc.
What (if anything) have you found/ done that has improved your symptoms?
My diagnosis is so recent, I am still finding what works for me. I have done yoga since I was 16 so I continue with that but still learning to understand what my body will allow me to do. I think for me relaxation is the most important factor to prevent any flare-ups. Stress and upset has a big impact on my pain and fatigue, so keeping this under control is most important to me. I think it’s important to continue hobbies and have something to look forwards to, so I continue with the things that I love like gardening and photography. I have also learnt to say no to people and not bow to pressure. I was a very social person before my endo I was always out with friends going to the cinema, and meals out among many other things, but now going out for a meal can be very difficult and I can find that the chairs are really uncomfortable and effect my back which in turn can cause my whole body to ache.
How open are you with friends & family about your illness & symptoms?
I have always been open with all my conditions. I think you have to be so that people can understand and help you better. Fibro is a very complex condition and I find it very difficult to explain what it is to people. I often describe it as having the flu permanently. My friends, family and Husband have all been really understanding. They now know that I can’t go out as often as I used to but they still stay in touch and ask me how I am.
Do you blog about your illness? If so, what inspired you to do so?
Currently no but this is something I am looking into starting. I use my photography as a way of helping with my illness and would like to create a blog that looks at how art can help with chronic illness.
What is the best advice you’ve received about Fibromyalgia?
Learn to listen to your body and do what it tells you. If it hurts or it’s telling you it’s tired, sleep and rest. Accept that Fibro is now a part of your life but don’t let it be the center of attention!
What was the worst advice that you followed?
Luckily I haven’t received any bad advice, yet! I guess there’s a still lot of time! 🙂
What is your favorite way to cope with your life as a spoonie?
Continue to enjoy life and do the things that you love. I love my photography not only does it keep me busy but I find it’s a very therapeutic way of controlling my Fibro, plus I find it helps me express my pain and emotions.
What is it that inspires you to keep going, despite your illness?
I am young, recently married and still have my whole life ahead of me. Nothing is going to get in the way of me enjoying it to the fullest!
What is one thing you’ve learned about yourself since your diagnosis?
That I really took my body and health for granted. The body is an incredible piece of kit it works so hard to keep you healthy, until a part of that is taken away you don’t truly realize how amazing it is. Treasure it, nourish it and look after it and it will never let you down. Be good to yourself, spoil yourself once in a while, and stay positive.
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Find a good and understanding doctor who will not only give you the correct diagnosis but also give you plenty of information and help. Good doctors can be difficult to come by and I’ve gone through 14 doctors in two years for all my conditions. If you feel you’re not being supported or offered help by your doctor then change, don’t feel bad it’s your health, your body and you’re entitled to the best help you can find.
Join a local support group, they can offer you lots of advice and tell you how they manage their symptoms plus lots of other helpful information. It’s always nice to talk to others with the same conditions as you. Always talk don’t keep it to yourself, you’ll be surprised how much help and support is available to you.
Most importantly stay positive and strong!If you feel you’re not being supported or offered help by your doctor then change doctors. #spoonie Click To Tweet
Thank you to Laura for sharing your story.