This week’s Fibro Warrior is Elizabeth Turp of Liverpool, Merseyside, UK. She lives with her partner and loves the outdoors, music, Liverpool, food, and friends. She works as a writer, counselor, and group facilitator. After living with chronic illness for more than ten years she was recently diagnosed with Fibromyalgia.
When were you diagnosed? How old were you at the time?
I didn’t know I was a Fibro Warrior; I’ve only recently been diagnosed at the age of 41. This might sound odd, but I’ve been living with chronic illness for 10 years. My GP thinks I’ve probably had Fibro for a long time and it’s been masked by other conditions and all the things I do to cope with them.
What lead up to your diagnosis ?
Continued fatigue despite high levels of fitness, brain fog after long periods of concentration, and new pain in my back. After Vitamin D deficiency was corrected (this can cause similar pain & fatigue) there was no improvement and GP diagnosed Fibro.
What was your life like?
My life had already been adapted to chronic health problems: slow-paced, part-time work, prioritized well-being/exercise etc. I was already self-employed which brings good flexibility.
How did your family initially handle your illness?
Because I have lived with chronic illness for years it wasn’t a shock to them, but it caused further worry. It was also a relief to know why I was struggling. I think it is hard for people to understand that I am ill at all because I am fit and I work, as my friend said recently ‘people see me at my best.’ I love life and am sociable so when I’m around people I usually feel upbeat.
What do you feel is the most challenging aspect of Fibro?
For me the fatigue is the hardest part, it stops me from doing a lot of things I would like to: writing and spending as much time as I would like with family. It’s also hard for someone who has never experienced it to understand how debilitating it can be, a good analogy is with Fibro you only wake up with a fraction of the energy of a well person and you have to learn to spend it wisely.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
ME/CFS: I was diagnosed ten years ago. It was pretty bad early on (unable to work for several months) but symptoms gradually improved with complete change of life pace, graded exercise, and multiple self-care strategies including nutrition, mindfulness, and sleep hygiene. I no longer have the PEM (post-exertional malaise) that characterizes ME/CFS.
Endometriosis: I’ve had this since I was eleven but was only diagnosed seven years ago when cysts required operations. Has caused pain, fatigue, and generally feeling very unwell at times, but now it is mostly under control.
Chronic Pain: Following operation when scarring created tightness that was debilitating until I went to pain management course (see below). Pain is in some of the same areas as Fibro.
Hard to know how much of current problems belong to which illness, but some doctors believe these are related conditions anyway, and they certainly have overlapping symptoms.
What (if anything) have you found/ done that has improved your symptoms?
Keeping moving – daily exercise keeps me feeling strong, helps manage pain and fatigue, helps with sleep, reduces stress, and centers and relaxes me. I swim, walk and row. Daily stretches and movement exercises that work all muscle groups taught at Pain Management clinic have saved me in two ways, they have reduced the pain from endo adhesions, and they have also (unknown to me at the start) been exactly the same movements that can benefit Fibro.
How open are you with friends & family about your illness & symptoms?
Pretty honest, but not always because I don’t want to bring them down or worry them, then I get upset that they don’t understand!
Do you blog about your illness? If so, what inspired you to do so?
Not directly as my job prevents much personal sharing, but I write articles on living with chronic health problems and impact on mental health on my website: www.elizabethturp.co.uk and via Twitter @lizahpool
What is the best advice you’ve received about Fibromyalgia?
So far, bearing in mind I was accidentally doing most of what you are supposed to already, the new thing for me is Epsom Salt baths.
What is it that inspires you to keep going, despite your illness?
Giving up is not an option because of the mental health implications, I’ve found ways to adapt and appreciate the small pleasures of life. I’m proud of that because life with any one of these illnesses is challenging, and that keeps me going in a positive cycle. It isn’t always easy though.
What is one thing you’ve learned about yourself since your diagnosis?
I have learned to consider my own needs before I make commitments or agree to help someone else, and knowing when I need to rest.
I’ve learned that I’ve still got work to do on communicating about my health to other people. Because I ”don’t look ill” there are a lot of assumptions made.
I have learned to consider my own needs before I agree to help someone else. via @lizahpool Share on XWhat is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Learn that looking after yourself as a priority isn’t negative or selfish, it will help you cope and maintain your relationships, and if you don’t do it you may get a lot worse.
I wrote a book to help people understand ME/CFS (or CFIDS if you are in the USA) and how it affects all areas of life: Chronic Fatigue Syndrome/ME: Support for Family and Friends
Now that you’ve gotten to know Elizabeth, be sure to visit her website and follow her on Twitter @lizahpool
If you enjoy these weekly Fibro Warrior interviews, why not share your own story? If you’d like to share your own story via interview, please contact me.
#Spoonie Learn that looking after yourself as a priority isn’t negative or selfish, it's necessary. via @lizahpool Share on X
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