Fibro Warrior – Claire Madden

This week I’m interviewing Fibro Warrior Claire Madden of Ocean Grove Australia. She has Chronic Fatigue Syndrome with a side of Fibromyalgia. She was diagnosed with CFS in 2003, at the age of 18.

Give me some basics… Are you married? Kids? Pets? Work? What do you enjoy?
I have a loving boyfriend who is pretty wonderful and a dog that I absolutely adore. At the moment I am on the disability pension but I teach piano/guitar/voice to a few students. I am slowly getting better and I am at the point where I am able to do a few things that I enjoy – baking, playing the piano and guitar, and gardening. My mum spoiled me at Christmas and bought me an industrial standard ice-cream maker – I am absolutely loving making dairy and preservative-free ice-creams!

What is your diagnosis, and how does Fibromyalgia play into your condition?
I have Chronic Fatigue Syndrome, which means that in addition to debilitating fatigue I have heaps of other symptoms. Brain fog and Fibromyalgia are probably the worst of these secondary symptoms. I am pretty lucky in that I don’t get Fibromyalgia very badly – I have days where I feel like I’ve been hit by a truck, but if I manage myself well then I can be pain-free most of the time.

What lead up to your diagnosis (symptoms, dr visits, etc)?
Right after I finished high school I got glandular fever – I didn’t have it very bad so I didn’t take much notice and kept on keeping on for months. I just kept getting more and more tired and had no idea why. I started getting social phobias and skipping out on parties and classes at uni. I was trying so hard and keeping up with most things but I was just a mess. It took about four trips to the doctors over maybe six months for them to start taking me seriously.

How did you handle your diagnosis?
I fought my diagnosis for a long time. My doctors were quite skeptical about Chronic Fatigue Syndrome as a condition but couldn’t see what else it could be. I was sent to a specialist but the only help he could offer me was management which I was not interested in – I was still functioning well enough that I could convince myself that the bad days were somehow disconnected to my ‘normal’ days, and besides which, everybody was saying that Chronic Fatigue was a mental condition, so couldn’t I just will myself out of this? I had a lot of false beliefs about my condition and about myself for a very long time which led to a deep depression for quite a few years. I couldn’t accept that my condition was physical – after all, there was ‘nothing’ wrong with me – so I just struggled on with my life, blaming myself for feeling tired all the time and being unable to do what everyone else did.

I finally got to a really good place in around 2010 where I was working within my limitations and balancing work, friends, and taking care of myself. I was working as a Primary School teacher three days a week and teaching piano two evenings a week. I felt like a normal person – I didn’t feel limited in any way (apart from my ability to earn a ‘full’ income).

Then in November 2012 I met Guy – the most lovely and amazing and supportive boyfriend I could possibly imagine. Unfortunately he had an apartment in Melbourne’s CBD right above a very busy and congested intersection. And as it turns out I am allergic to car pollution (among other things). As we spent more and more time together I was feeling worse and worse. In March, I moved in with Guy, and went rapidly downhill. I lost my job in June and by August I was just a drooling mess – the brain fog was so severe that I had difficulty speaking and listening. I was literally unable to walk more than 100 meters and driving was sometimes just too dangerous, so I was effectively housebound.

In late 2013 I was diagnosed with Multiple Chemical Sensitivity and moved in with my parents in the eastern suburbs, starting my extremely slow recovery. I saw a jump in my improvement after moving to Ocean Grove in Jan 2014 and installing an air filter in my bedroom.

What was your life like when you were diagnosed?
When I was first diagnosed in 2013 it was like I was bi-polar. When I was having a good day (the push) I was my gregarious, outgoing, active self. I was in control and loved life. All I could remember and connect with about my life were the good things. I would do well at uni and go to parties and stay out late drinking and dancing. Then I would invariably crash, and I would just descend into this really dark place. I couldn’t see past the fatigue, anxiety and physical pain. My brain was all foggy and I didn’t understand that this was just part of the physical symptoms and not that I was naturally dumb and lazy.

How did your family initially handle your illness?
As little as I understood what was happening, my family understood even less. My Mum is so compassionate and loving, but she just didn’t know what was wrong with me and was encouraging me to do things that were really counter-productive. I think my siblings just assumed that I was lazy and moody.

These days my parents are really well-informed and are my greatest allies. They love me so completely and support me absolutely in every way they can, I am very lucky to have them.

What do you feel is the most challenging aspect of your condition?
Apart from the lack of a cure? The lack of knowledge that is out there.

I can’t help dreaming of this alternate reality where CFS is really well understood, where I received a diagnosis early and my primary GP was understanding and supportive. I was given the latest research to read to make sure I fully understood what CFS was and how it affects the body, and I was referred to several specialists to help me manage my condition. All my family and friends understood and were there with ongoing sympathy and support. There was no stigma or scorn from family, friends or work colleagues. I have the best ongoing care that ranges from specialists such as immunologists to graded exercise programs to counseling. All my medical expenses are covered by Medicare.

Do you have any other co-existing conditions?
I have Multiple Chemical Sensitivity and Neurally Mediated Hypotension. For about 5 years I also had Graves disease. My immunologist thinks that all of these conditions can be related back to my Chronic Fatigue Syndrome; that CFS is the primary culprit that is messing up all of my body systems.

What (if anything) have you found/ done that has improved your symptoms?
All of my conditions are so intertwined that helping any part of me helps the whole.

I take heaps of salt and water for the Neutrally Mediated Hypotension – this prevents most of the collapsing which means that my body isn’t thrown the extra hurdle of recovering from these episodes.

I stretch for the Fibromyalgia – this helps heaps! Hot baths and massages also help keep it at bay. Recently I have had a few bad bouts of this where the pain just grinds me down to the point where I can’t cope and I am slightly ashamed to say that I have self-medicated with alcohol – just a few glasses of wine. It isn’t ideal, but it is the only thing that brings relief. I am extremely fortunate that my Fibro is mild and it rarely gets to the level where I just can’t handle it so I don’t foresee this bad habit getting out of control.

I pace myself for the Chronic Fatigue – management is really the only thing that helps me. Always limiting yourself is really hard though, so I often overdo things and then I have to spend days in bed recovering.

I have a heap of gut problems that seem to come with the territory of having CFS, so I eat a restricted diet to try and reduce the discomfort and bloating, but this is only possible when I eat at home as my list of foods to avoid is enormous.

Getting the diagnosis of Multiple Chemical Sensitivity really helped, as most of the reactions to my triggers are fatigue and brain fog. Avoiding the triggers really makes a difference, but it takes weeks and months for the improvement to show after I’ve eliminated a trigger so progress is difficult to gauge, and it’s hard to say how much improvement is due to eliminating the trigger, and how much is due to good pacing and CFS management.

I’m also seeing a holistic doctor who is tweaking my nutrition and supplements. I take heaps of Magnesium, CoQ10, Fish Oil, liver cleanse, Vitamin D, probiotics, and Iron. It all helps.

How open are you with friends & family about your illness & symptoms?
I’ve had Chronic Fatigue Syndrome for over ten years now, and most of my friends are aware of my circumstances. I tend to not broadcast my bad days but occasionally I will have a bit of a rant on Facebook.

Do you blog about your illness? If so, what inspired you to do so?
I have a blog called Living, Being, Doing with Chronic Fatigue. I just really wanted other people to understand what was going on. Most people with invisible illnesses go through feelings of isolation because they are physically cut off from the world, but also because there is a lack of social recognition of the difficulties they are facing. There is still this misconception out there that people with CFS are just enjoying a great holiday, sitting on their butts and relaxing. That is so far from the truth, I want to share my reality with the world.

I also wanted to reach out to others with chronic illnesses to share my journey with them and to see how they were coping. Reading other people’s stories and knowing that it wasn’t just me who was going through all this really helped.

What is the best advice you’ve received about chronic illness?
That I need to start accepting where I am. It was the hardest thing, because no sane person wants to accept having Chronic Fatigue and all the crap that goes with it – at any stage of the illness it just sucks. But before you can look around for something to help you, you have to be able to deal with what is going on.

What was the worst advice that you followed?
That I shouldn’t look for a support group. The doctor felt that support groups for CFS just reinforced the delusion that we were actually sick and prevented a recovery from this mental illness.

What is your favorite way to cope with your life as a spoonie?
Inevitably I hate each and every way of coping after I’ve done it for a while, it just gets so boring and I get increasingly resentful that I am forced to do these restful activities. I hate naps. I hate watching movies and TV shows. I hate resting in the hammock. I hate staying in bed. I hate writing on the laptop with my feet elevated.

Cuddles are always good though 🙂

What is it that inspires you to keep going, despite your illness?
Life motivates me. I am curious and creative and I just like doing things. Working within my energy envelope is difficult and sometimes heart-breaking, but I enjoy the little things that I can do.

What is one thing you’ve learned about yourself since your diagnosis?
The biggest lesson is about who I am and what defines me. I have had almost everything that shaped and displayed my identity stripped from me. Everything that I used to do as part of who I was I either can’t do any more or have had to compromise in some way; things like baking cakes, going for coffee with friends, going out for dinner and a movie, going out for drinks in the city, walking around St. Kilda, keeping the house clean and tidy – all of the choices and activities that made me who I was have been taken away and all I have in their place is a shell of the basics of life.

It’s physical things as well – little things like the body products I used and the chemicals I had for cleaning the house. I had to give away half of my wardrobe due to a polyester allergy. I can’t use any of my perfumes that I loved and that expressed my personality and my mood so perfectly.

Losing my job was the final straw – I hadn’t realized how much I thought my work defined who I was. Once all these things were torn away I was very lost for a very long time.

And yet I remain. It is still me, just with less external ways of expressing myself. I am strong, and silly, and flawed, and kind. I have likes and dislikes and passions and causes. I have opinions, I care about politics, I love my dog, and I have great relationships with my parents and my boyfriend.

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Seek therapy. Coping with a chronic illness is so difficult that a professional is needed to tease out all the issues. It’s normal to experience things like grief, resentment, anger, and loss of identity. Your therapist can help you establish healthy boundaries and can walk you through practical scenarios such as how to leave a party early, or how to organize your cooking so that there are freezer meals most nights. They can give you a hand in learning to say no or how to ask for help. Your therapist can provide couples counseling as your personal relationships change and can help you both communicate frustrations and resentments before they build up.

Now that you’ve gotten to know Claire, be sure to check out her blog – Living, Being, Doing with Chronic Fatigue.