AAA for FM(S)

Nah, i am not talking about the FM stations or the Auto club 🙂 I am talking about LaNi’s approach towards tackling this invisible pain-in-everywhere Fibromyalgia – Acceptance, Awareness and finally Adaptiveness – AAA.

From: http://shadowsoffibromyalgia.wordpress.com/category/funny-pages/

LaNi was diagnosed with Fibromyalgia (FMS/FM) in 2008 after her doctor was unable to find out why she was feeling exhausted, giddy and in pain all the time and when all her medical test reports came out normal. Of course in 2008, Fibromyalgia was also called as the “garbage can” disease, mostly cos doctor’s couldn’t make sense of a plethora of symptoms and all the indicators/reports coming out normal. Eventually, she was told that it was “all in her head,” “she does not look sick so how can she be sick” and that sheshould focus on something else so that she doesn’t imagine that she is in pain or feel symptoms that she is possibly not feeling. So her Qs ranged from ‘why me’ to ‘is this a cry for attention’ or was she simply imagining these things or were these symptoms “real?”

Of course these symptoms were real but how could she deal with an invisible illness in such circumstances where she is not only going through pain but  she also has to make people around her understand that THIS IS VERY REAL. This is where the AAA approach helped and is still helping her.

Acceptance – LaNi (Laks-miNi) hates feeling sick/weak/down for even a couple of hours. Now imagine feeling like this ALL the time – that’s it – LaNi’s mood is in a downward spiral all the time, she constantly forgot things, she pushed herself more than ever ‘cos she felt like she had to make up for all the lost time and did not like working within limits. Of course she felt like a quack when the doc announced that “it was all in your head.” And the end-result  – Laks-mi was in more pain than ever and needed to just curl up into a ball. But one fine day, LaNi decided to stop and take a deeper look and VOILA, she found that she was in denial about FMS and she really was unwell.

She understood that her so-called limits were actually boundaries, and well, it is good to have them. Like kids, adults also need boundaries and it works for the most part. As long as she did not push herself to work outside those boundaries, she went for some time w/o a relapse or a Flare-Up.

When someone said that her fatigue is due to lack of exercise or that she is not FIT enough, she just smiled (and sometimes did not) and told them that just ‘cos they do not understand doesn’t mean she is not sick. She also stopped beating herself up (figuratively) for feeling like this all the time, instead she learnt to be thankful for the small wonders and miracles of life.

Awareness – One of the key factors in dealing with a condition, anything is to Be Aware. No, I am not talking about the awareness that one creates in others towards understanding a particular condition. Yes, that helps and goes a long way cos people become aware and can relate to it or try to understand your situation even if they are not going through it. The awareness that I am talking about is Self-Awareness.

LaNi more aware of the causes that might induce a flare-up. It can be a stressful day @ home or work, maybe a fight or the weather or troubled/ disturbed sleep. Even coffee or a cold or something as mundane as staying up late to watch movies can trigger this. Sometimes none of these can also trigger a flare-up 😦

But All work and no play makes anyone, including LaNi a pretty dull person. Instead of avoiding this altogether, LaNi worked out ways to have fun but within her boundaries. Be it cooking, playing with the kids,meeting friends, going out for a movie,having a night out with G or eating chocolate (YUMMMM) or curling up and sleeping 🙂 LaNi also had gr8 parents, an understanding hubby, kids and good friends who knew about her pain and condition and did not push her or dare her to push herself more.

As far as general awareness goes, LaNi was elated (Go Figure!) to find out, after 5 years of being in pain, silently that FMS is really an auto-immune condition and it really was not in her head.

Adaptiveness –  LaNi knows that she will probably live with FMS for as long as she is alive. But she knows that while FMS is now a part of her life, it does not define HER or Who she is. So she is taking steps, small baby steps to find new(er) ways to take care of LaNi’s needs and most importantly her family’s and adapt to living with FM. Its no longer about physical strength but about mental strength. YEAH BRING IT ON (but hopefully in smaller doses 🙂

Decisions, Decisions……. LaNi also realized that stress was the major trigger for her multiple relapses in the last couple of months  and decided to cut the strings that she knew were pulling her in different directions. She surrendered her status as a US Permanent Resident and she is also going to take a break from her career. She also has a couple of other things to decide but right now she is a சுழ்நிலை கைதி (a prisoner of sorts due to present circumstances). So she has resolved to not obsess and stress over what is not working but rather to focus inwards on improving her health, which she hopes, will, in turn restore her inner peace and calm.

May 12 is Fibromyalgia Awareness Day. Do your bit in raising awareness of this invisible illness and make it visible. Just ‘cos someone does not look sick, does not mean they are not.

Want to know more on FM: FM Brochure

Hey FM, this is for you

Days like this, I want to drive away
Pack my bags and watch my FM fade
‘Cause you chewed me up and spit me out
Like I was poison in your mouth
You took my light, you drained me down
That was then and this is now
Now look at me

This is the part of me that you’re never gonna ever take away from me, no
Throw your sticks and stones
Throw your bombs and your blows
But you’re not gonna break my soul
This is the part of me that you’re never gonna ever take away from me, no

Soon I will be sparkling – A firework, a dancing flame. You won’t ever put me out again – I will be glowing!

~ Lyrics adapted to Katy Perry’s Part of Me

Ending the post with something funny 🙂

10 best things about Fibromyalgia
(from Zazzle.com amazing website of super cool products)

1. I save money on magazines. With brain fog, I can’t remember what I just read!
2. I am a cheap date. No alcohol, no dessert and I still feel drunk or hungover.
3. On ‘good day’s I feel wonderful. Other people need a much better day to feel that way.
4. I am easy to find…I’m either at the Dr’s office or at home.
5. I never have to make my bed because I’ll probably be right back in it.
6. I have acquired a great lounging/sleeping wardbrobe. I rarely get dressed as nobody ever sees me.
7. Disequilibrium saves money on amusement parks. I get the same sensations every time I stand up!
8. I feel smarter than my Doctors…all they say is ‘I don’t know’
9. With short-term memory impairment I can hide my own Easter eggs and Christmas presents.

Did I say 10….nah I meant 9 🙂