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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Transitions Part I

So I think I'm off the roller coaster, still have speed bumps to contend with daily, weekly. BUT it isn't hourly, or every ten or fifteen minutes these days, trying to figure out what is needed, or just crashing or zoning for hours on end. I will never miss those years.

Every piece takes work. Sleeping takes work and planning, odd as that sounds. Eating right takes work and planning. Keeping on top of the needed supplements gets wearing. As effective as my regimen has proven itself, swallowing anywhere from 20 to 60 capsules every day gets really old. Small price to pay for the level of function I now enjoy, but it still has to be done.

Keeping my stress level low is a major undertaking, creating its own stresses. Catch-22 at times, but slowly learning to just LET GO on many previously "normal" activities. I bought paper plates and plastic cups, and foods that don't need much cooking. Healthier for me anyway, right? So no dishes, or at least minimal. And so what if the dishwasher only has ten items in it at the end of a week. I’m running it anyway. (I usually do them by hand daily with just me.)

Housework with just one person living as neatly and tidily as possible isn't such a big deal, but I've decided that I will not do it. I am going to find someone to help me out once a month with vacuuming and basic clean-up. My patio plants are pretty much dead, and you know... that's okay. Not sure I will even resume "wintering" the geraniums that are still alive.

The biggest issue I battle with right now is multiple chemical sensitivities. I am not where I can go live in a place where I choose the paint, or install hardwood floors. Instead, I am pricing filtration systems and considering filtration masks to wear inside my own home. (A studio apartment at present.)

Daily, I am exposed to cigarette smoke and perfume as I am on public transit... have gotten very adept at staying upwind of people, which is a little lonely. The nail salon next door to where I work is a little harder to deal with. The only solution is to leave and go work elsewhere, but as this is a low-stress work environment, that will not happen. So I am often found with a tissue over my face in the break room, breathing in a nice combination of essential oils. Thank goodness the acetone smell is undetectable in the treatment rooms, where I spend most of my time.

The biggest breakthrough for me right now is that as I come into new situations and meet new people, I simply am not saying a word about being sick, but I am not acting “normal” either. They can think what I do is weird, or think I am a little cold and distant, or whatever. Too bad. Co-workers are constantly asking me why I do not date, and why I am not married. I turn it into a joke every time and let them think what they will. The thought of going out to dinner or to a movie with someone after a day of work just about makes me cry... no energy left at that point. I just go home and sleep after work. (And when I wake up... I am on Phoenix Rising decompressing!)

There is some grieving in this, of course. It is a good, healthy grief, though, readjusting to life again. We go through it coming to terms with ME/CFS, now I am going through it again coming to terms with life re-defined.


My first thougth on the MCS is whether there's any possibility of convincing the place hta tyou work to get a filtration system for their building, or maybe even jsut some air purifiers. Even those without MCS don't appreciate smelling a nail salon.

A chemical cartridge mask, provided you don't react to teh mask materials themselves, will filter out all the reactive stuff you're inhaling. Problem is, they're quite conspicious. ;) But for wearing around the house I can guarantee it would be effective, if not entirely comfortable (though I have slept in them before).
Planning takes work. The unrelenting tyranny of meals is what I get most tired of. I have hypoglycemia, so I cannot let that slide. I do let the housekeeping slide, despite the fact that I have no one to help with it. I manage to keep most of the plants alive, although some are in bad shape. I grew up on a farm and could not stand to be the only living thing in my apartment.

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