Simone (aka Fibromodem) : Fibromyalgia Interview

Today’s interview is with Simone (aka FibroModem) from Melbourne, Australia. She was diagnosed with Fibromyalgia in 2010, at the age of 40.

What lead up to your diagnosis (symptoms, dr visits, etc)?

Approximately a year before being diagnosed, I suffered about 3 years of major depression. Prior to that, my thyroid was overactive and was treated with radio-active iodine.

Immediately before starting to visit doctors for my FM diagnosis, I was sweating profusely (despite it being the middle of Winter); my wrists and ankles were aching and throbbing (which had previously been a sign that my thyroid medication needed adjusting); and I was finding it impossible to handle any kind of fluorescent lighting.I returned to my GP first, then to my endocrinologist (but my thyroid was fine) so I googled my symptoms and returned to my GP…”I could have polymyalgia?” No, she said I was in the wrong age bracket but it could be fibromyalgia and referred me to a rheumatologist – so, in the world of FM diagnosis, I was lucky as it only took about one month to get a diagnosis.

Were you working at the time?
Yes, I had just been admitted to the Supreme Court of Victoria as an Australian Legal Practitioner (Lawyer) and I was only able to practice for one month after 6 years of study!

That had to be really difficult. How did you handle having to set aside your life plan?
My boss kept my job for 2 and a half years – I had always thought I would get better quickly; that this was only a minor setback.Now, I’m kinda scared about the possibility – I’ve been sick much longer than I was a lawyer – and I’ve probably forgotten much more than I remember.I’ve had my head in the sand, in relation to dealing with giving up most of my dreams, and a lot of the emotional ‘stuff’ is actually pouring out now. I am quite willing to admit that I am NOT enjoying it at all!
[Tweet “I always thought I would get better quickly; this was only a minor setback. @fibromodem”]

What was your family life like (married? kids? etc?)

I am single, no children; but I have a very close extended family.

How did your family initially handle your illness?

“YIPPEE!!! We have a diagnosis. We can fix her now and let her go back to the way she was!!!”

How has your family/work situation changed since Fibromyalgia entered your life?

My mother was, and remains, a constant source of support. She attends every single doctor’s appointment with me. Her partner has struggled to understand the condition but has seen me at my absolute worst so he just realizes that its effects are horrible.Most of the remainder of my family (brother, aunts, uncles, cousins, etc) have little understanding about how debilitating the condition can be – they tend to only see me when I have my happy face on. My father is the only one who has shown no compassion whatsoever and we no longer communicate.

I am no longer able to work as a lawyer – would you want a lawyer who can’t recall what she was saying just a moment ago? I am currently on a disability pension.

What do you feel is the most challenging aspect of Fibro?

The fatigue and fog, definitely!Most of the time, I have been able to manage the pain with medication (except last week!!!) but the drugs only seem to make the fatigue and fog worse. I think I find this so difficult because I had always been so very logical and clear-headed previously.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?

Hypothyroidism

Morbid Obesity

Depression

I don’t think these conditions impact my FM; however, I have to be very careful about medication interactions.

What (if anything) have you found/ done that has improved your symptoms?

I feel like I have only gone downhill since being diagnosed, despite doing everything I’ve been told to do by every single ‘specialist’ I have visited.

I love going to hydrotherapy. It makes me feel fabulous while I’m in the water and I look forward to my classes; but it doesn’t seem to have any long term benefits.

Can you tell us a little more about hydrotherapy?
I go to 2 one hour classes per week. One class is run by Arthritis Victoria, and the other class is a self-help group where I do the exercises from the first class.

We do a 10 minute warm-up; followed by 10 minutes of leg exercises (kicking, cycling, frog kicks, etc) then 10 minutes of arm and back strengthening exercises (with an empty soda bottle). We get 10 minutes to do our own exercise thing (I swim); on to exercises with a kick board and some neck stuff; then leg and hip stretching and thank you for coming!

How open are you with friends & family about your illness & symptoms?
Everybody I know knows about my condition and how to find out more, if they would like to know. Some of them probably know way too much about my body than they thought they ever would!

Do you blog about your illness? If so, what inspired you to do so?

I have a blog on my website at fibromodem.com . I started with a Facebook page (to fight boredom) and then, as I could not find any information about FM in Australia, I started my blog.

You also have started an e-zine about living with Fibromyalgia, tell us a bit about that.
The first issue of “Living WellWith Fibromyalgia” was in June 2012. I think I saw one of the other Fibromyalgia magazines (that you had to pay for) and thought ‘I can do that’ and we shouldn’t have to pay for it…

So here it is. It’s looks a lot different to how it began, and I’m very proud of how it turns out. But, just like everyone else, I’m not always up to fulfilling the goals I set myself.

What is the best advice you’ve received regarding Fibromyalgia?

The ‘correct’ answer is pacing, BUT…I tried the pacing thing. I tried to organize a revised (with less hours) work schedule: I would go to work Monday afternoon for 3 hours, then rest Tuesday. Go to work Wednesday afternoon, then rest Thursday. Go to work Friday afternoon, and then after my busy week, need to rest all weekend. I still had pains, headaches and fog. I was still unable to go to work if it was a bad day. This ‘pacing’ wasn’t making me feel much better (it wasn’t making me feel much worse, though, either).

BUT, this is not how I want to spend the rest of my life! This is an existence. This is mediocre! This is no fun (remember that word from your old lives?)! SO…I’ve decided upon a new way of life. I’ve decided that I’m taking advantage of my good moments. I am NOT pacing myself. If I feel good enough to do a particular activity, then I’m going to do it. Yes, I will probably feel like shit later, and have to lie in the dark loaded on painkillers – But I am REFUSING to miss out on life when I do feel ok.

I do not want to sit on my couch for the rest of my life – so yes! I’m going to walk too far on a gorgeous day, at the beach, with a friend and her puppy! I’m going for a walk with my beautiful nephew Z to the park, then we will draw pictures, we will play ball, he will suck all the energy out of me – BUT it will be worth every minute of it!

Grab the good moments with everything that you have!
[Tweet “#Spoonie Grab the good moments with everything that you have! via @Fibromodem”]

What is your favorite way to cope with your life as a spoonie?

Because I live alone, I’m lucky that I’m able to be selfish enough to make sure that I do at least one thing per day that I enjoy!

Like What?
Going for a massage (even though I may suffer the next day if we go too deep); shopping (not supermarket!); buying myself flowers; eating ice-cream.

What is one thing you’ve learned about yourself since your diagnosis?

I would rather be happy than skinny!

Now that you’ve gotten to know Simone better, be sure to check out her website, and don’t forget to follow her on Facebookand Twitter. She also has a Cafepress shop dedicated to Fibro Awareness.

Don’t forget to subscribe to to LIVING WELL with FIBROMYALGIA

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