The World Outside My Head

It often looks like this:

Escher's "Relativity"

Escher’s “Relativity”

I’ve talked on and off about  my health here and there before but I don’t think I’ve ever gotten in depth and explained why I have such difficult with sitting down and concentrating on writing most days.  So here I am, baring myself to you in full.  The Full Monty. 😀

I am disabled.  That doesn’t mean I can’t do things.  I do do things.  Then I get in trouble for overdoing it.  I seem to have a “Supermom complex” – at least according to my doctor.  It means that things are more difficult for me.  

I have (in no particular order of diagnosis):

  • Fibromyalgia
  • Osteoarthritis (3 places in my spine)
  • Degenerating Sacroiliac Joint (it’s the hip joint that allows your leg to swing out, not just back and forth)
  • Multiple Chemical Sensitivities
  • Gluten intolerance
  • Corn intolerance
  • Soy intolerance
  • Migraines
  • Chronic Sinusitis
  • Irritable Bowel Syndrome
  • Interstitial Cystitis and
  • Asthma

There are a couple I’m forgetting; there have been so many diagnoses over the years it’s hard to keep track.  My biggest blocks come from the FMS, the SI joint and the MCS.  

The US National Library of Medicine defines FMS as 

Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues.

They don’t tell you it causes sleep issues, brain fog, short term memory loss, moodiness, inability to concentrate.

They define MCS as

Nothing.

And therein lies the rub.  MCS isn’t a widely recognized condition and most doctors fail to recognize it as a problem.  However, multiplechemicalsensitivity.org defines it as

Multiple Chemical Sensitivity; in broad terms it means an unusually severe sensitivity or allergy-like reaction to many different kinds of pollutants including solvents, VOC’s (Volatile Organic Compounds), perfumes, petrol, diesel, smoke, “chemicals” in general and often encompasses problems with regard to pollen, house dust mites, and pet fur & dander.

Multiple chemical sensitivity unlike true allergies – where the underlying mechanisms of the problem are relatively well understood widely accepted, is generally regarded as “idiopathic” – meaning that it has no known mechanism of causation & it’s processes are not fully understood.

It causes, in me, fatigue, a distinct loss of IQ, moodiness, headaches, asthma attacks, itchy burning skin, lethargy, an increas in my pain and a serious inability to focus.  Sometimes it leaves me feeling and acting stoned.  

The sacroiliac joint is this one: 

SI joint. Swing your leg in a circle, this is the joint that makes that happen

If I could I’d show you what nerves run through them and where the muscles are etc.  I can tell you that the sciatic nerve runs through it and that while the joint is still (barely) “within normal parameters” the nerve damage in my leg is getting worse.  It makes sitting, walking, stretching, etc. extremely uncomfortable on my worst days with pain down my leg and muscles seized up in my lower back.

All three of these things, plus the migraines and sinusitis, create a hostile environment in my head.  When I’ve been exposed to chemicals it triggers several reactions that flare  up other things.  When my FMS is in a flare I’m more sensitive to the chemicals.  Those two alone are a vicious cycle.  

So Escher’s Relativity is my outside world because of these things but what about the world inside my house?

"Beware", a fractal by my friend cate

“Beware”, a fractal by my friend cate

It’s beautiful, chaotic with a compelling kind of symmetry, peaceful and vaguely frightening at the same time.  

I live in an old apartment. It’s a 22-step walk up and there are three apartments here.  It’s part of a very old strip of buildings with stores with high ceilings on the ground floor (although there is a dance studio beneath me).  Butted up against me to the north is the first apartment in the next building.  To the east is the bathroom of the apartment on that side of the building.  Then a T-shaped hallway and the third apartment on the south side of that building.  Downstairs is a thrift store on the southeast side, a private laundromat on the southwest side (I think that’s where it is, I don’t use it) and the dance studio directly beneath me.

Lots of chances for chemical exposures.  

It was easier when the other two apartments were empty but this past month a mother, her daughter and grandson moved into those apartments.  And last night we found out one of them has a dryer.  The hall was filled with the scent of dryer sheets.  Which means they’re not venting properly (dangerous) and making it a chemical soup to get through my hallway whenever they use it.  Not to mention whatever is seeping around the door into my apartment.

I’m almost always in a fog.  I am trying to write every day but I have to admit there are some days when the file sits open, staring mockingly at me.  (Brings to mind Patrick Wharburton “You’rrre mocking me, aren’t you.”  I think it was The Emperor’s New Groove)   I have been trying to write Anna’s demon flight for days now.  Today I’m going to give it a try again.  I think that she will be telepathic, like she is in book 2 when she’s fighting that demon, Duemos.  

So I’m a writer with cognitive issues – easily distracted, poor short term memory, poor ability to concentrate.  On the plus side I’m really good at multi-tasking.  I can talk to my kids and type at the same time.  I can play two games at once AND watch TV.  If I can get focused on something I am zeroed right in.  So focused that I tune out everything.  Music can help with that but not always.  

This past month I’ve been working on getting a routine going for household and physical things.  Next week I start on my head and a shift of my meds schedule (I have 14 of them).  So we’ll see how it goes.  Hopefully more production!  So much I need to do and so much I want to do.  I have a great support system, I really do, but there is one thing that they can’t do for me:  Write my books.  

Have a great Friday and I’ll see you tomorrow!

Muah.

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9 thoughts on “The World Outside My Head

  1. Jenn is right about the doctors not full understanding Environmental Sensitivities. The average person sees nine doctors before they find one that is up to date and can do a proper diagnosis.

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  2. And that, ladies and gentlemen, is one of the reasons I love this Man. He is good at this stuff.

    However, my point about the doctors stands: Most physicians don’t recognize it as a reason for a person to be sick, let alone a disability. Peter is fortunate in that he found a doctor that did and was willing to try to find ways to make him less sick. I am working on that.

    There are so many symptoms related to it it’s almost uncountable. I am fortunate to have Peter in my life.

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  3. MCS is recognized by The Canadian Human Rights Commission. It has many names, Environmental Sensitivities, Gulf War Syndrome, to mention a few.

    From the CHRC Report, “Approximately 3% of Canadians have been diagnosed with environmental sensitivities. They usually experience neurological impairments, and often experience other symptoms including runny eyes and nose, headaches, fatigue, pain and breathing and digestive problems. Environmental sensitivities may develop gradually after chronic exposure to relatively low levels of chemicals as seen in “sick buildings,” or suddenly after a major exposure to an environmental disaster or a chemical spill. This condition may be initiated by one or a combination of environmental factors such as mould, pesticides, solvents, chemicals off-gassing from carpets or furnishings, or electromagnetic phenomena.”

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