M.E. life on the rocks.

The reality most people don't see, don't understand or believe. Another friend died this past week...M.E. is a killer but hey, we look well when you see us don't we!! Some days, weeks or years are better than others, the summer is better than winter for me but most of my time is spent in my pj's in bed or on the settee feeling wretched in pain with temperature fluctuations, sensory, digestive, neuro problems ranging from crushing head and body aches to tooth and joint sensitivity and toes that have a cramping mind of their own bending in directions I didn't think they could. I rarely talk about how I feel, preferring instead to make the most of what I have, what I can do and enjoying my time with family and friends when I'm with them. Also preferring not to be judged by what people (mistakenly) think M.E. is and is not. This particular journey began around 10 years ago for me. After 10 years (not including the trauma of childhood abuse but yet an extension of) of extreme, and I mean extreme stress and anxiety without reprieve due to domestic violence where the ante was upped considerably after I ended the relationship, I fell ill with glandular fever. During that time the stress continued, my health deteriorated slowly, exhausted all the time yet unable to sleep or relax, in a very hyper state as if my nervous system was working over time. Then came the car accident, a spectacular head-on collision where the other driver speedily careered around the corner on the right hand side of the road. My injuries eventually healed as best they could but I was left with all over pain, fatigue and weakness. I was diagnosed and thrown in the controversial CFS/ME bin when all blood, urine tests and scans showed little to identify as anything else. My iron level was topped up to be replaced with other deficiencies over time and yet despite much privately funded research (the government isn't particularly interested even though thousands of us have been diagnosed) providing physical evidence of body and tissue damage, abnormalities with cells, inflammation of the brain and central nervous system the only treatment we are offered is cognitive therapy and a graded exercise therapy that most people find counterproductive, deteriorated health shown in studies conducted to examine the impact. Other treatments include anti-depressants, painkillers and a varied mix of nutrients, sleep and digestive aids. Any new symptoms are often dismissed as part of the illness as our health declines over the years, 10 years fewer life expectancy can be looked forward to on average, less for some. We are not permitted to donate blood or organs yet we are thought of as having a mental illness. There is much co-morbidity, depression and anxiety are common as people are isolated and mistreated. Heart conditions and other organ failures amongst the more severely affected and lives taken due to too much life being stolen, sometimes from very young ages having had no life outside the home for decades. I am fortunate, if luck has anything to do with anything, that I am considered moderate. I have no idea what the future holds in terms of health which is why I focus on what I have and what I can do while I can. Living alone and as independent as I possibly can (a personal choice for various reasons I won't divulge here), pacing myself as I would if to maintain a physically healthier existence is impossible for my soul to survive. I'm whats coined in the M.E. world as a boom and bust MEep...I push to my limits then crash to the depths. You will only ever see me at my best where, if any of this is in the mind, I am pretending to be better than I feel, convincing you and me that I am well and living a 'normal' life just like you if only to feel part of that world you inhabit for a while. The next day or the day after, sometimes longer but less so as time passes by I am reminded that I can convince nobody least of all myself that my life is anything but cocooned in a body that doesn't play ball to my will. If I can not let my mind at least fly then I too would die.

Happy birthday, narcissistic misgivings.

On the surface, it appears lovely, a mother who loves and understands her daughter until knowing the reality of course. I used to get lots of love and kisses in my cards, now I'm not doing what she wants, now I'm not biting or rising to her demands and not seeing her I get this. I am grateful at least that she uses my given name, my favoured name at last. For once, I actually feel sorry for her..the second time in my life. I realized as I was skimming over the ungenuine sentiment of this card how I know she'd really rather not send one at all. I've witnessed this struggle in her with other relatives that she'd prefer not to send cards but does so because being thought of as uncaring or bad in some way is harder for her to deal with. I send her cards since deciding to have no physical contact because I want to, I can love her better from a distance without all the projections and button pushing, without feeling so angry with her as she constantly aggravates deliberately to feel superior or whatever nonsense she believes she's achieved. Putting myself in her shoes, I am glad to be in a position where I am free to make these decisions without any concern for what other people might think of me. She's trapped by her own insecurities and fear. That used to be me, the internal struggle she kindly passed on but this apple fell much further than her grasp. This apple has ripened and grown into a more compassionate and understanding tree. That must really piss her off, shine on her like a razor light cutting through to the core of her grief. That, I feel incredibly sad about.

The universe is listening.

I had one of those delicious serendipitous moments yesterday, sat alone pondering over a relationship that's not what I want, bringing me down by the other person's weight of judgement and fretting and that I'd rather have the brief but tasty affair from 5 years ago as it was so very much easier, lighter when someone with the very same name spoke and invited me to sit with him as he was hogging the outdoor heating. Our conversation was the smoothest I'd ever experienced, our mutual openness and honesty were very clear and refreshing. He reminded me of who I am, my value as an intelligent, vibrant, open-minded, authentic and curious person..a rarity rather than peculiarity, he assured. Time flew by as we just talked, laughed and learned so much about each other. Nothing romantic, just friends..he knows more about me in that short time than the person I'm not happy with who's 'known' me for 6 years. Sometimes we have to go the wrong way to find our way back.