This just re-affirms my feelings that the NHS seems about as helpful as the NIH (NOT!) with their ‘advice’. I find it morbidly amusing that they say restrictive diets are not good for ME/CFS…Gee, I wonder what they would suggest those of us with massive food issues should do? My stomach has been upset for over a month. No Birthday cake for me this year. Mom was going to make me gluten free chocolate cake. It is still on her kitchen table. I don’t dare eat it. Instead she made me bannana ice cream, which is good, but it is not cake. Sometimes I eat gluten free bread or a gf bagel and that is kind of a treat now. On the plus side, my stomach being at war with me is good for weight loss… I did need to lose weight and I am on an excellent protocol for that. I really never appreciated how much I liked the freedom of food choices. I guess its true what they say, ‘you don’t know what you’ve got until you lose it’.

| jess

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/

This is bullshit:

| jess

I cannot believe that the supreme court is voting to over-turn Roe vs. Wade. This is a very bleak day in womens history. I’m so angry. What is the worst thing about all of this is just knowing that there are women out there that have helped create this situation. When will women learn we need to stick together, protect our rights. I read in a post another womens comment and it is so true, “What’s next? womens right to vote?” I feel like we are going back in time. Our rights are being chipped away. What will women do if they need an aborion in a state like Alabama, Mississippi, Tennessee or Texas? …Just to name a few…and if you think it stops there, think again, this is only the beginning. Our rights as women are being stripped away. We need to do all we can to protest and prevent this from happening to future generations of girls. This is a despicable and deplorable situation and we as women (and men who care about women) need to take a stand. Lots of women will die. The ‘coat hanger solution’ will be back in vogue. (as it will be the only option for some). I wish my health allowed travel and long days out demonstrating in noisy crowds. I swear though I may end up renting a reclining wheelchair and doing the unthinkable travel (which will undoubtedly make my illness worse, probably permanently worse), but I feel THAT strongly about this. I have wanted to do demontrations for ME/CFS too, but the issue is always the cost of such actions to my physical health. I have never been able to attend any of the things moms want to attend for their children as my son lives in a different state and I knew I’d go into body shutdown mode and might well never recover to baseline illness. I’m so tired of having to consider everything little thing all the time regarding my stupid health and stupid illness. This is so important that I am willing to die fighting and protesting, if necessary. This is effects over half of the population. We owe young girls and women a brighter future going FORWARDS, not backwards. I want women to have ALL the choices (and MUCH MORE) than I have had. Someone else made the comment, “It’s official, women are now second class citizens”…Is this really the world we want for our mothers, grandmothers, sisters , and daughters. Do we wish to leave future generations of girls with this? Really???

https://www.politico.com/news/2022/05/02/supreme-court-abortion-draft-opinion-00029473

This was written by a young artist with M.E./CFS and Lyme, named Elyse Kiera Hasenberg. It’s beautiful in its poignant honesty. (She kindly gave me permission to share it here). This touched my heart. I feel so strongly especially for young brave people like Elyse who are stuck down with ME/CFS. She is also an artist. I have seen her photos and poems and she is very talented. She seems like a lovely young woman who never deserved to be faced with the struggles she is faced with every day…and yet you can tell she has the spirit of a warrior:

| jess

I remember when my hair was full of knots and my knees stained with dirt. And when I spoke, questions of wonder bubbled out from my rose colored lips. The heart I held within my chest was as trusting as a delicate porcelain teacup. I wandered through thickets of weeds and sang myself lullabies entangled with fairytales. My world was delectable like homemade lemonade on a warm summers day. How I loved when the wind rustled the leaves furiously while teasing my balance, as I would tightrope across papery plywood as high as the stars.Always was I ready for the unknown, charging with excitement into my next grand adventure. I never ran away when met with danger, for my curiosity led me over unsteady hills and through exposed construction zones. As a blooming adult I flew down side streets in my mustang, music blaring from the windows, moonlight dancing through my auburn hair. Boys and romance intensified my waking life, spilling over into my dreams. A fiery passion was blossoming in my vast and auspicious sky.I was only just discovering who I might become. Little did I know then, my world was about to stop. Fragments of my youth frozen in time.An existence so isolating and treacherous unfurled before me. Where health once existed, a life altering disease would take its place. The freedom I experienced as a child and adolescent were soon to become a distant memory as I was pushed headfirst into a harrowing nightmare.I deeply miss that carefree girl, who had once chased the world in dresses made of poppies. And ran barefoot through abandoned houses haunted with feathery ghosts. Who was out climbing mountains before the sun was at its peak and who slid down the banisters without holding on. However, she is still here with me, she is the strength and the fire that keeps relighting my waning flame. She is my reason for surviving what has felt unfathomable. She is the one who continues to whisper in my ear, “Our story isn’t over yet, this isn’t how it ends, there will be a brilliant light at the end of this long tunnel, we must keep trudging on.

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