Every time the Fibromyalgia Awareness month comes around, I tend to feel inadequate to explain my physical pain or inspire those whose journey is so very different from mine. It has been close to 7 years since I started living with Chronic pain and 5 years since I got the diagnosis of Fibromyalgia and Chronic Fatigue Syndrome. I have come to accept this monster, may be by about 80%. I feel like 2 people; one whose mind still works and beleives in impossibilities, the other limited by mobility, muscle, nerve and joint pain and brain fog.
The question arises then arises who are we, those living with Fibro or CFS? What we do is birthed from who we are e.g. kindness, forgiving, thoughtful, loyal, and our core values. I undertook an exercise eliminating negativity in my life e.g. relationships that were not adding value to me and disrespect. I had to stop taking the blame for people’s behaviour, I have continuous self-depreciating monologues where I could have gone wrong. If I genuinely was wrong, I apologised if not, I cried and moved on. Losing relationships is not easy. There was then the challenge to mirror the very values I extend to others to myself. I learnt to say “NO” and think of me first, not in a prideful way but consider myself first. I detest complaining, in fact it is so ridiculous that my whole nervous system kicks off when I complain or mutter. I think that is just about the few good things out of this disorder.
I led my treatment plan in therapy by dealing with the triggers. These were work stress, early menopause, infertility and depression. Emotional trauma can be draining and I decided to eliminate the achievable triggers and hopefully give room for my pain pathways to reset and my pain would decrease. I have dealt with some of my trauma though additional medical challenges have come up.
The neuro pathways seemingly take longer to reset if ever because I am physically in pain but still struggle with handling emotional distress. I still suffer from hypervigilance and it makes life difficult when you are aware of everything. I do appreciate the calmer me, it is not everything I respond to. My mobility is still bad, but I have learnt to rest one day and try and potter around the house the next day. Strangely satisfied with quietness I walk to stretch muscles and meet friends for coffee has alleviated the loneliness. The feelings of being caged are dealt with by taking walks in the early evening. It is very hard to try and explain to people that you are not avoiding them, you are simply practicing self-care.
We have experienced had major changes in our Body and our Minds. I say this is in line with the theme of the Mental Awareness week in May. Our bodies let us down with the pain, depression may set in and the negative effects of medication do not help. Weight gain, hypertension, skin sensitivities, eczema, psoriasis, swelling of joints and muscles the list goes on. Due to my swollen muscles and joints I can no longer wear short sleeves that broke me, hiding my turkey arms. Sadly I cannot show my “latte skin” in summer as I am now conscious. My hormonal imbalances have brought on other symptoms that are not even fibro related or maybe they are who knows.
This year, let us set ourselves a challenge that no matter what we will pace ourselves, put us first, do something different to rebuild our confidence and keep our bodies healthy as they slowly heal.
I extend a mini challenge do something different to help with your brain fog. I got an app and I am learning Italian and have a Rubik cube to help with my hand joints, though I keep dropping it.
Stay safe and remember Be You Do You. I did me, I wrote my book on fibro and emotional trauma and will publish it soon, I did not need anyone’s validation and neither do you.
Our bodies are broken temples, but we are still beautiful because it is only an outer shell. Stay safe