Fibro Warrior – Fibro Geek Donna

This week I am interviewing Fibro Warrior and FibroGeek, Donna, who lives in Scotland. She lives with her husband, Ross, and their pet dog, Oscar. They’ve been together for almost 10 years, and got married in August of 2012. She was diagnosed with Fibromyalgia in August of 2013, at the age of 26.

Tell us a little about yourself:
At the moment I am off work sick due to my Fibromyalgia. I have unfortunately had to make the decision that I am unable to continue working full time just now and when I do get back to work I’ll be working part-time hours.

I love writing, which was the main reason behind setting up my blog, Fibro Geek. I also really enjoy photography and, when I can, I like to go out and explore different places and document what I find with my camera.

What lead up to your diagnosis ?
I had been back and forward to the doctors for a number of years. I remember that I had problems with bad nausea and sore stomachs to begin with. This was investigated over the course of a few months with various blood tests and ultimately an endoscopy, which all came back as normal. Within this time, I noticed that I was beginning to feel really tired and also started to ache all over. When I first brought this up to the doctor I was seeing, I was told that fatigue was a common complaint and that there was nothing that could be done about it.

What followed was a gradual increase in symptoms, in addition to the pain and fatigue, including headaches, dizziness, cognitive problems, difficulty sleeping, and heart palpitations. I was initially dismissed by doctors and then was given a prescription from one doctor who told me it would solve my problems. On searching google, I realized I had been prescribed anti-depressants without being told that was what they were. I was annoyed at this (as I wasn’t depressed) but took them anyway; by that point I was desperate for something to help me. They didn’t.

I eventually made an appointment with a new doctor. He was great and took me seriously. He sent me off for all the tests under the sun, including blood tests, x-rays and an ECG. When they all came back as normal, he referred me to a rheumatologist as a last ditch attempt to get the bottom of what was going on. Within 10 minutes of seeing me, she had diagnosed Fibromyalgia.

What was your life like?
I was married at the time I was diagnosed and I was working full-time at that point. I was managing my symptoms relatively okay. It’s really been over the last few months that I have noticed a challenging deterioration in my symptoms.

How did your family initially handle your illness?
My husband has been amazing throughout and so supportive. I’m very close to my family and they were mostly worried about me initially. They were also determined to help me in any way they could. I am very lucky. I have to say, it’s only really been recently that my family has appreciated that Fibromyalgia is something I will be dealing with for the rest of my life. That was because I was determined that I was going to ‘beat this’ and return to normal. When I was diagnosed, my rheumatologist told me that some people can live with minimal symptoms and function relatively normally once they have improved their sleep. I was determined that this would be me but it hasn’t been the case, even though I now sleep well. I also have to admit to not being completely honest with everyone about my condition and how it affects me (because I didn’t want to worry them) but now my symptoms have been so bad it’s pretty obvious.

What do you feel is the most challenging aspect of Fibro?
The most challenging aspect of Fibromyalgia is that it forces you to slow down and make changes in your life that you wouldn’t necessarily have chosen to do if you were healthy. It has taken me a long, long time to realize that nothing is more important than my own health and that I need to put myself first. I have had to make difficult choices but I can now appreciate that this is for the best. Not only that, but it has offered new opportunities to me. I have found lots of new things that I might have not considered doing before. For example, my illness is the reason I took up Taking time out to relax and de-stress and I am incredibly passionate about it. I have also met some amazing people online due to being ill.

What (if anything) have you found/ done that has improved your symptoms?
I think the important thing with Fibromyalgia is that you take a multi-faceted approach to living with the illness. I see a complementary and alternative medicine practitioner on a monthly basis for either reiki or reflexology (I have also previously had Bowen).

This has helped me to greatly improve my sleep, it has really boosted my immune system and also helps to keep me feeling upbeat. Taking time out to relax and de-stress is so important, even just 10 minutes a day to close my eyes and focus on my breathing (this really helps reduce my pain too). Heat therapy is very helpful to me and I have a warm bath every day and also use a heat pad. I take gabapentin for pain relief, which has also helped to reduce pins and needles sensations I was having. Exercise definitely helps, and from my own experience recently, I learned the less you do the less you are able to do. It’s really hard to build up from being bed bound, but the key is to start small. For me it started with just walking down the stairs to the living room and then back up to bed after a rest on the sofa. Then, gradually doing more walking around the house before heading out for a short walk in a local park and building up from there.

The key is to not over-do it and listen to your body. If it’s painful, stop. My main exercise is walking but I have also recently been trying to do pilates (it’s really hard so I wouldn’t recommend it to begin with but it certainly helps me feel supple).

Diet is also essential for feeling well. I went for an intolerance test and reacted to dairy, so I immediately cut that out of my diet. I think a lot of people with fibro have food sensitivity issues so it is worth checking out. Eating lots of fresh vegetables and fruit is important for me, as is cutting out sugar and alcohol. I was also limiting the amount of wheat I ate and used a lot of gluten-free products. I have always taken vitamin and mineral supplements, which included iron, b vitamins, magnesium, co-enzyme q10, vitamin d etc. as I do think my body needs extra support. Diet is something I’ve recently returned to after reading a booked called “Suffered Long Enough” by Dr William Rawls and I have taken on his advice. I am also introducing some herbs to see if they help me, based on advice from Dr Rawls.

One of the most significant things that has helped me live better with this illness has been working on my mindset. I try as hard as I can not to think about or focus on my symptoms and to look for the positives.

Fibromyalgia certainly isn’t all in your head but the more attention I give to my pain, the worse I feel. There’s no getting away from the fact that this is a horrible condition but I can either choose to have Fibromyalgia and be miserable, or to have Fibromyalgia and be as upbeat as possible. We don’t get control over a lot of the things that happen to us in life but we have a choice about how we deal with them. We only have one chance at life and we can either choose to see it as one big painful journey or we can make the most of it and enjoy the ride.

How open are you with friends & family about your illness & symptoms?
It has taken me a long time to accept that this will be something I have to consider for the rest of my life. In the beginning, I was very dismissive of it because I didn’t want to upset or worry anyone. I told my family and close friends I had Fibromyalgia but never really went into any details about it and would always say I was fine. Now, my symptoms have progressed to a point where I can’t hide it! I still haven’t told everyone I know that I have Fibromyalgia, simply because not everyone needs to know; however, I am more open and honest with close family and friends. Now I have opened up about it, I have an incredible support network.

What inspired you to blog about your illness?
My blog is called February Stars. It started as a private diary for me to vent and get out all my problems. As I wasn’t very open with people about my illness, I was bottling things up and this just wasn’t healthy. I found blogging to be cathartic but I never told anyone about it other than my husband. It’s bizarre but I was fine about strangers reading my blog, but until really recently I told no one close to me about it. I remember I noticed one of my friends had followed my twitter account and felt complete dread at the thought of him reading my blog! Totally crazy. I’m over that now and don’t mind who reads it. My blog has pushed me to connect with so many amazing people. I realized that sharing my own experiences may help others. That’s what keeps me blogging now. If my blog even helps one person, I’m happy.

What is the best advice you’ve received regarding Fibromyalgia?
Slow down and make lifestyle changes. It’s probably been the hardest advice and if I am brutally honest I am only following it because my body is giving me no choice. But I can see now that it’s been the missing piece in the puzzle and it will help me greatly.

What was the worst advice that you followed?
Taking amitriptyline was the worst advice I followed. It turned me into a complete zombie and it was a horrible experience taking it. Having said that, I know it helps a lot of people so don’t necessarily dismiss it if you are reading this. After almost a year’s break of not taking anything, I recently began taking gabapentin and it has helped dull my pain. It’s a case of finding what medication works for you if that’s a route you decide to go down.

What is your favorite way to cope with your life as a spoonie?
By giving myself a focus. So long as I give myself something to do I am okay, it’s when I allow myself to become bored that I begin to struggle mentally, which impacts on how I feel physically. Even if I am not capable of doing much at all, I’ll try to do something. Be that reading, watching a movie, blogging, crafting or photography.

What is it that inspires you to keep going, despite your illness?
I think having a great support network around me, an amazing family and brilliant friends keeps me going.

What is one thing you’ve learned about yourself since your diagnosis?
I am a lot more resilient and determined than I ever thought I was.

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
The most important piece of advice (which was what I was told and struggled with) is to not push yourself and to slow down. Unfortunately, battling on through just causes you more pain and distress in the long-run. You have to learn to take it easy and listen to your body. Also, focus on the present. Forget about the past as you can’t change it and try not to worry about the future as what you are worrying about might never happen. Just do what makes you feel well and happy today.

Now that you’ve gotten to know Donna, please be sure to visit her blog – February Stars and follow it via bloglovin. You can also catch up with her on Twitter @FibroGeek .