The Long Winded Ugly Truth

It’s not that I forgot about my beloved blog, but I took a tiny hiatus to consolidate, arrange, and manage the numerous events I had going on.  Eat, Pray, Love would have us think that the best place to balance yourself is in Bali.  For the other 90% of us that can’t afford a trip and stay to the other side of the world, we can definitely meditate and reinvent ourselves at home. Being unemployed gave me plenty of room to relearn and prepare for this lifestyle shift that I had no say in executing before the next working phase started.

For all those out there with autoimmune and chronic fatigue, I’m beginning to feel you a bit more.  Trying to enjoy all my free time with so many limitations has become a real challenge.  My body is still always tired, even though unstressed from the duress of a full time job.  So without a structured day, I was able to veg out for hours with the excuse that I didn’t feel well.  Well, that doesn’t lead to anything productive, or fun.  Sedentary reading and  Supernintendo Zelda never led to recuperation.  As a matter of fact, I learnt that my fingers stiffen up even faster, up to my forearms, and down to my toes, if I played for too long.  Reading in the same position too long made my back swell.

With more time and less bosses around, I was able to clean and organize my house to completion.  But the hurdles were the same.  The floor is still cleaned a portion at a time.  A bathroom scrub here, a vacuuming there.  Sitting sessions in between everything.  At the end of the day, it felt I had cleaned all day and barely rested.  Muscles still get sore swiftly and blood literally feels intoxicated.  However, I didn’t have severe exhaustion as when I had the 9-5.  After about 3 weeks of being a full time housewife, I was able to think straight and started coming to terms with my limitations and new ways to handle things and healthy perspectives.

Some symptoms have worsened.  During this time I didn’t write.  I wasn’t avoiding the things I enjoy, but I was being forced to drastically give up a few more gifts we naturally have, into a Nazi type regimen. Rest and medicine, rinse, repeat.  That’s what it felt like anyway.  I had heard that people with Lupus should not receive sunlight. As usual, I thought I was the exception.  Although the heat had already started giving me hives, the sunlight didn’t seem to be the culprit.  However, the past few months had been spent indoors at work.  Now I was noticing that a short trip to the grocery store was inducing palpitations, a weird head stretchy feeling, mental fogginess, shallow breath, weakened and tingling muscles, and sobbing spells.  Basically, extreme fatigue.  So yes, I now cannot healthily tolerate the sun’s rays, which instigate my immune system to attack itself.  Instead of getting sad about it, I resisted at first, as I do with anything you tell me I cannot do.  I told myself it’s all in my head, I’m being dramatic, I’m being a wimp.  Then I found myself a blessing of a Colombian neighbor who also has Lupus and validated my new symptoms for me.  But all this free time, and I cannot sit at the pool, go to the beach, take a walk, or drive to the library in the day.  I’m still molding to this particular restriction but have worked out a more nocturnal lifestyle.  I still do plenty of these things and pay for them later, much like it happened with my diet.

On top of being laid off, I was so stressed about the toil and trouble of preparing gluten-free, vegan meals w/o nightshade vegetables, preservatives, additives, etc., that I would still “cheat” (what is otherwise healthy eating to others: a tomato, a lean steak, a whole wheat slice, oatmeal) about once a week.  I was hungry and too sore to make my scratch meals.  My habits didn’t change much at first either because I was in a celebratory mood and didn’t want to spend all my day cooking.  But after enough bladder spells from pizza sauce, inflamed colons from one cookie, and hair on the floor, I couldn’t take it anymore.  I’m avoiding all detrimental foods like no tomorrow.  I spend all day now cooking, sitting, cleaning, sitting, folding clothes, stretching.  By sitting, I don’t mean I sit and stare at the wall.  I pay bills, have friends visit, write letters, or just lightly walk around.  I actively rest, like hardcore strength trainers do.  I may not be able to work out, but I push myself like one would.

With a very unhealthy momma-in-law in the way, we both came to the epiphany that sometimes to be healthy, we need to focus on ourselves, and almost, but  selfishly tend to our needs.  Therein lies the reason I usually resist my next incremental phase in this disease, because I don’t want to focus on just health all day (says the girl who was previous a health nut anyway).  But the truth is, just like I would rather my ma-in-law to be selfish than sick, I surrender in saying the same goes for me.  I know that it’s better to fight for my health than try to keep living a life that wears down my body.  My husband would rather watching me suffer turning down stuffed waffles, than suffer washing my hair.  (Yes, it’s starting to get difficult to even include showers.)

To me, and all who have been through a similar path, it’s a victory.  I take pride it keeping my health and home.  I have not let my limited energies keep me from living a satisfactory lives, limit my amount to love others and do what I can for them.  I still continue on a path to health and in search of ways to halt this progression, because it can be controlled and maintained.  The proof is my neighbor who once tinted all her home windows, crawled to bathrooms, and her joints deformed.  Now she goes to the gym on a sunny day consecutively after cooking a meal from scratch.  I have high hopes, if not very ambitious goals.

In a few days, I begin bare minimum diet that helps heal the stomach through vegetables, grains, and juicing.  I added more natural things to control my pain and inflammation: Collagen, alpha lipoic acid, noni juice, aloe vera juice, liquid multivitamin, colon cleanse, chlorophyll…every day. Three times a day.  I will be adding flax oil as well.  These keep my body maintained and my skin almost looking like it did before I was ill.  I just received a juicer as a gift so that I’ll be able to add more nutrients into my bloodstream without slowing down my digestion which doesn’t work very well these days.  Oh yes, big plans in the works and I’ll be sharing some of the things I’ve learned or will learn along the way.

And lastly, I got a job.  Unfortunately, full time, but it will not be exhaustive.  If for any reason it does, I will selfishly start looking elsewhere again.  I’m on a mission to take care of myself (and be humble enough to ask help when I can’t do it myself); it might be expensive, tiring, frustrating, and outright stupid at times, but it ain’t nothing I can’t handle.

Anyway, that is the update.  The future still looks ultravioletly bright and I have a few things I can add to this here blog.  Thanks for reading!

1 Comment

Filed under Loopy Lupus

One response to “The Long Winded Ugly Truth

  1. Naner

    Little icon man with arms coming out for a hug from me to you!

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