This week I’m interviewing Fibro Warrior, Alisha Nurse of The Invisible F. She’s a journalism student and author, who just published her first fiction book. (Keeping reading for a chance to win a copy!) She also happens to have Fibromyalgia and depression.
Give me some basics…
I am very single! I studied journalism but for the moment I am doing a part time admin role. I love film, theatre, a nice spicy curry, cooking and meeting new people.
When were you diagnosed?
I was 25 when I was diagnosed. A couple years before that I had been misdiagnosed, then the year after that a doctor said it was “probably fibromyalgia, but be glad you’re not dying of cancer.”
What lead up to your diagnosis?
I had some symptoms since I was a child. Insomnia and extreme fatigue in particular were the hardest to deal with, but there was also depression, dizziness, severe acid reflux, IBS and fibro fog. I wasn’t allowed to play sports or run as a child because of how sickly I was all the time. My family always joked that I was like “an egg.” I was at the doctor all the time and as I got older my symptoms increased. I did lots of blood tests but they all came back clear, and doctors never knew what was wrong with me. It was quite perplexing, and as I got older and started working, it was hard to explain my absences from work as I couldn’t put a name to what I was suffering.
I was doing my Masters Degree at university when my pain levels became unbearable and I just couldn’t cope anymore.
What was your life like?
Since childhood doing anything at all just blew the wind out of me. I struggled to wake up in the morning after a long sleepless night so my grandmum woke ahead of me, made whatever breakfast I wanted and brought it to our bed. I spilled tea on her sheets so many times! Lol. It was so hard to concentrate or function. I’d fall asleep at the most inconvenient times and I couldn’t stop it. At classes in university I could hear my friends asking each other “Is Alisha alright” but I couldn’t wake myself up until my body decided it was time.
It was and still is hard to have a social life because I’d be too knackered to go out, even just for a walk so I didn’t spend as much time building friendships and relationships and seeing places. I felt guilty. Even on holidays I’d have no energy to do any site seeing. It felt like a waste. My life felt like a waste.
How did your family initially handle your illness?
My family was mostly supportive but I think it was hard not knowing what was wrong with me. I don’t think everyone understood why I always needed to lie in longer or complained of feeling knackered. When I was older a relative accused me of being lazy. And I got more chores, almost as a punishment. I literally felt like I would pass out during chores and right after.
What do you feel is the most challenging aspect of Fibro?
I think Fibromyalgia affects everyone differently. I have some friends who suffer more from pain. With me, it’s the exhaustion. But overall I think having a chronic condition that inflicts such a wide variety of symptoms is the most challenging. It’s not just the pain, but the exhaustion, fibro fog, migraines, ibs and the list goes on. The combination of symptoms makes it very hard to lead what anyone would consider a ‘normal’ life. That’s hard. The lack of understanding also means a lot of sufferers don’t get the kind of emotional and practical support they should from family, friends and co-workers. In a way, there’s a stigma attached to this invisible illness which doctors are still refuting and relatives are still disbelieving.
Do you have any other co-existing conditions?
Yes. I also live with gastritis, clinical depression, anxiety and borderline personality disorder. When my mood is really low and I’m stressed or anxious, it affects fibromyalgia and I tend to have a flare in symptoms. The opposite is also true and Fibromyalgia affects my depression and anxiety levels and so on.
What (if anything) have you found/ done that has improved your symptoms?
A number of things:
- Working (which forces me to get the only exercise I can manage, as well as gives me a chance to be around other people as I don’t go out much)
- A change in diet – eating healthy foods only – fresh fruit and vegetables, no junk, processed foods, proteins, oily fish, vitamins and supplements (including Omega 3 capsules), peppermint capsules (for my ibs)
- Soaking in my tub in warm water and epsom salts (for the pain)
- Reducing my stress levels
- Talk to and meeting other sufferers
How open are you with friends & family about your illness & symptoms?
In a lot of ways I am very open, more so with friends. I generally don’t talk much about it unless it is with someone who I think understands or at least isn’t judgmental.
What inspired you to blog about your illness?
I blog at theinvisiblef.com, I started blogging about living with fibromyalgia and depression because I wanted to do something meaningful with myself. I thought it might be beneficial to share my experiences on this hardly known condition.
What is the best advice you’ve received regarding Fibromyalgia?
Take it one day at a time.
What was the worst advice that you followed?
Some years ago someone in my life persuaded me that exercise would help me feel better. I was really pushed to go running/jogging but at the time I couldn’t do it because of the severe pains in my legs and feet when walking. I not only physically hurt myself, but I felt guilty when I couldn’t do it. I eventually came to my senses.
What is your favorite way to cope with your life as a spoonie?
I try to take things as they come and put less pressure on myself for the things I struggle to do.
What is it that inspires you to keep going, despite your illness?
Knowing that I only have one life, so I can’t let fibromyalgia or anything else rob me of it. I won’t be able to hit the replay button at the end so I absolutely need to give it my best shot even if I have limitations.
What is one thing you’ve learned about yourself since your diagnosis?
I manage better when I stay away from people who display a lack of understanding.
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 support group and stay where you feel supported. Avoid those who call you hypochondriac, lazy or tell you it’s all in your head.
What inspired you to write your first novel?
I had been in hospital when I was around 25. I had tried to end my life and I was desperately looking for something to keep me going. I wasn’t sure what that was. But I started thinking about what was important to me. All my life I had lived for my grandparents and I thought if I’d been successful, would they have known how much i loved them? I was such an unhappy child but I saw how much they loved me.I realized they probably didn’t understand how much. So I thought I could embark on some kind of project as a token of my love for them. I couldn’t think of what as I didn’t consider myself to be particularly skilled at anything except maybe journalism which I had studied. I reluctantly settled on writing a novel. Over the next three years I had had many obstacles in the way of that including two more serious, near fatal attempts on my life (both in one year) when I had hit rock bottom again. I didn’t think I would finish but somehow against the odds I did. I had also started telling my grandparents exactly how much I love them and it really gave me a kind of peace to share that.
What’s the book about?
In short, it’s a fantasy story about a young girl’s journey to self acceptance.
16 year old Eliza Aurelio grapples with her mixed race identity amid rising racial tensions on her little island. For their safety, Eliza’s grandfather sends her and her grandmother to a quiet town in Southwest England to stay with a relative. But this otherwise quiet town has been turned upside down by people mysteriously disappearing. Eliza eventually encounters a magical but dangerous realm accessible through a doorway in the town, and sees its connection to the abductions. She intends to put things right, only wanting to protect her family. To do this, she must return a stolen key to lock the open doorway. But Eliza has to overcome her own inner conflicts if she is to stand any chance of being successful and leaving the other realm alive.
If you’d like a chance to read this new book for free, then click below to tweet the message. We’ll select a random winner from those who send out the tweet on Sunday Feb. 8, 2014.
Is there anything else you’d like the readers to know?
Be encouraged and stay determined. Also, against all odds I just published my first novel The Return of the Key
Now that you’ve gotten to know Alisha, be sure to check out her blog, The Invisible F, and also her author website, where you can get details on her book. you can also like her Facebook page, and follow her on twitter @AliApow.