Skip to main content

Lets talk Fibro & CFS

Happy Mother's Day to those who celebrate it!

In keeping with the theme this month, it is time to talk about (big word warning) Chronic Immunological & Neurological Diseases in particular two that most of us are aware of and possibly live with: Fibromyalgia & Chronic Fatigue Syndrome. I gathered these bits from various sources mainly because it was easier to let them speak to the issues we face every day then try and do it justice myself.



https://www.verywellhealth.com/understanding-fibromyalgia-4014067

As good a description as I've ever heard. Fits my life pretty close too.


Kris Oulton
so periodically over the years, (as in, frequently but not every day thank god,) I wake up, go to dress myself; and all i want to do is scream from the pain of putting cloths on.
Now, some of you know my 'conditions' in this regard, but I'd like to point out something that is not always remembered by parents, guardians, teachers, doctors, fashion designers, etc...
Its not pain from body motion, its pain from when the fabric touches my flesh. Sometimes its too cold, or too hot, too wet. Sometimes its because its too heavy, or too lightweight. Today it was the fact that it was touching my skin, period. All those fine little hairs people have on their body to help them guage the sense of touch/proximity... yah, those tiny little things.... EVERY SINGLE ONE OF THEM is hyper sensitive today. It took what little energy i still had today, to just put my cloths on without screaming like i'm being fucking murdered.
Doesn't help that after sleeping for 10 hrs, i still don't feel refreshed because my body never did that thing its supposed to do when you go to sleep. So, i'm faced with two options today: Option1) Stay up be basically be a zombie, with tiny spurts of infrequent energy, unable to focus on anything, difficult to be engagingly social, and completely unable to make decision except "does it hurt? does it require energy/me to move?" or Option 2) go back to bed, forget about trying to accomplish anything today. including laying in bed mulling over floor plans and room layouts, or whatever feat of engineering peeks my interest today. Basically write off the entire day, again. ((and then be silently judged for living in a 'hoarders apartment' because i obviously don't want to tidy/orgainize or clean/thin out etc, and so i'm a dissapointment because i'm not like everyone else who lives according to the economic structure of capitalism and the disregard for materialism (which is as bad as being so cuaght up in materialism that you neglect everything else as well.) ))
So, I stay up and satisfy the requirements of soceity, even though NO ONE IS IN MY APARTMENT to witness, but it feeds the programming placed in my brain from having to go to school in this state for 12 years of life; or I stay in bed, hopefully resting, but accomplishing nothing and being the greatest dissapointment to family and society as there ever could be.
maybe i am narcissistic, psychotic, sociopathic; but i argue perhaps i am, simply because i was forced by society to engage in behaviours that did little except torment and torture me every day. and i mean every fucking day. Sunday? had to sit still in pews or chairs that were NOT comfortable at all and left me ouchie when trying to stand up, and unable to focus on what was being taught when sitting. Saturdays, often was "get out and help me with this project" (rare was the luck i had the day to myself, and usually only half the day) weekdays... at school... yah, well, we all know that story... up before i was awake, often groggy and dizzy but had to maintain a sense of normalcy or else get sent to the nurses office only to be written up as "just tried to avoid classes" and young primary classes were boredom as well as sitting discomforts, oh and a diet filled with every known possible "new" time saving chemical allowed into food stuffs. The things i wanted to do, got the greatest pleasure and least pain from, i was not allowed to enjoy. I had to figure out how to hook up the arial antennas, or a set of rabbit ears and then keeep the volume real low, and pray the signals were strong enough to pickup and watch. TV was 100% evil, except when viewed 'as a family' and then it was only highly controlled content. Sunday evening broadcasts included Muppets, Disney and evening news. I could have done without the news. but anyways... moving oonward....
So now i'm 46, unable to escape the mental judgements of a society that held no compassion or understanding of me; in a time when I should be able to be happy and proud to standup and say Yes, I'm Gay, A Furry, a Geek, A Nerd, and different. Instead, the invisible voices in my head keep the guilt on long enough each day, i feel defeated before i even wake up most days. and the required adaptions to be able to do travel, amusement parks, or things that *used to at least, uncertain now, make me happy, are cost prohibitive for my budget if i want to survive, let alone live.
Sensory tolerances are weakening, so even a night at the movies is fast becoming intolerable to me. that was one of my last few vestigages of feeling 'normal' .
to bed i think, else i'm going to start crying again this time from frustration, not just pain.

Comments

Popular posts from this blog

National Make a Friend Day

I am not very good at making friends or keeping them it seems. I do not go outside much, in fact I hardly leave my home unless it is family related. That makes it hard especially since friends expect you to come to them at least once in a while and I find I can't.

If it were simply a matter of laziness it would be understandable but it isn't. Some days I can't even open the door to let in some fresh air. I do not know where the fear comes from I just know that that is what I feel when I think about going outside most of the time.

Agoraphobia: Triggers for this anxiety may include wide-open spaces, crowds (social anxiety), or traveling (even short distances). Agoraphobia is often, but not always, compounded by a fear of social embarrassment, as the agoraphobic fears the onset of a panic attack and appearing distraught in public.
Causes: Genetic and environmental factors Symptoms: Anxiety in situations perceived to be unsafe, panic attacks Treatment: Cognitive behavioral ther…

My Fair Lady

Eliza Doolittle Day is celebrated by fans of the musical My Fair Lady, a musical based off of George Bernard Shaw's 1912 play Pygmalion. In the musical, Eliza Doolittle is a Cockney flower girl who wants to learn to speak properly. At the time the story takes place, proper speech was a symbol of upward mobility and education. Eliza meets Professor Henry Higgins in Covent Garden and he agrees to give her elocution lessons. Higgins believes he can transform her from someone who uses words like "ain't" to someone who can fit in with London's elite.In the musical, Eliza dreams of meeting the king. She sings a song, "Just You Wait," to share her thoughts. It is in the song that the date for Eliza Doolittle Day comes from:One day I’ll be famous! I’ll be proper and prim; Go to St. James so often I will call it St. Jim! One evening the king will say: 'Oh, Liza, old thing, I want all of England your praises to sing. Next week on the twentieth of May I procla…

Women's Heart Health

February 1st - 7th is Women's Heart Health Awareness Week and I felt it would be remiss of me not to include some conversation about it here given that the professor suffered a heart attack a bit over two years ago and that I am a prime candidate.

Let us start with why I am a prime candidate - Obviously being 100 pounds overweight puts me in the high-risk area immediately. Add in High Chloresterol, physical inactivity, diabetes, post-menopausal and over 55. Since only two of those are needed to put me in the at-risk category that I have six means that I am very high risk. The only way it could be worse is if I still smoked or drank and still lived a high-stress life. Thank goodness for small miracles.

Not sure where you stand? check out this checklist. This checklist and the other pdf's linked here are from the Women's Heart Foundation

Do you know what the prescription is to lower the risk factors? It's simple join the 10,000 steps a day club. That's it! walk 10 th…