Illness on top of illness on top of feeling forgotten and frustrated

I was one of those lucky saps who managed to pick up the flu this season. I had my annual flu shot in October last year. This evil creature has managed to make my myasthenia gravis symptoms worse over the course of the last few days. The worst part of it has been the fever. I hate fever. I know it’s the body’s way of “burning up” the loveliness attacking the system, but I feel awful. Aches and pains and the occasional clothes-and-linen-drenching sweats are just icky! Today is the first day since Wednesday last week that my body temp has been in the more sane range of 98-99F. It hovered at 102 for a few days. My normal temp is 97.6F. I went through three large boxes of Kleenex (I’ve been sporting a nice Rudolph the Red-Nosed Reindeer nose) and I’ve practically worn out welcome with my bed and sofa. I swear I can hear a low groan from them when they see me dragging my limbs toward one or the other.

This kind of sickness is considerably easier to handle without the daily battle with a chronic illness that alone can make you feel like @$%#. I swear the MG demon has been 50x larger than normal this week. I’ve had the foot drag, the drooping mouth and eyes, the challenge of lifting a simple tea cup to my mouth, the having to hold on to something to be able to rise up from a chair, the effort of trying to brush my teeth and shower, and let’s not forget trying to cook something to eat.

On the topic of health, my so-called “affordable healthcare” is NOT affordable. I’m not a single mother of ten kids from as many different men so I’m not eligible for assistance. I’m simply an entrepreneur who has paid into the system for more than half of her life and has been dealt the challenge of health issues that have drained my savings, retirement, etc. I’m officially out of funds. Actual goose eggs in my accounts. I’m now facing having to find temp or part-time work outside of  home again to keep my very humble roof over my head. It scares me knowing that I’m going to have to dive—hopefully temporarily—back into the chaos of someone’s office to make money until I complete a key part of my business and I’m ready to roll it out to potential clients. Things could have been finished by now but as many with chronic illnesses know, it’s challenging to balance everything in a way that allows for the most productive management of time — time for working/creating and time for resting/recovering.

I know several people battling some of the same chronic health issues but they have the fortune of having someone to assist them, especially at home. I’m not in that category. I’ve let go of having a spotless space. I used to practically detail my car once a month and my apartment every Saturday. I’m lucky if my car gets washed every other month and my apartment gets a cleaning every three weeks. Since it’s just me, it doesn’t get too out of hand. Laundry might pile up for a couple of weeks and the shower gets cleaned once a week instead of after every shower. I have to turn a blind eye to the chaos that is on my living room table. People who know me well would really know I’m not well upon seeing how messy it is. No one has been over to my place since, oh, sometime last summer. One person was going to stop by for a visit, but didn’t. I even summoned some energy and strength to vacuum and tidy up a bit just from the sheer joy of a friend stopping by. I heard from them a couple of weeks later. Just a note saying hi. No explanation. I didn’t even bother to ask. I know I’m not on anyone’s priority list these days. I have to accept that and keep moving on.

I’ve taken periodic breaks from the social media realm, namely that place with the initials F and B. I find myself feeling envious of those with more stability in their lives and tons of people around who at least appear to care. That used to be me. I miss that part of my past. I’ll probably hide until after Valentine’s Day. I will not be tormented by all the beautiful bouquets and candies being gifted. Christmas was bad enough.

Now that all of that is off my chest, I’ll get back to trudging through business work, looking for temp work, and blowing my bloody nose.

I sorely want to punch the flu in the face right now but the bastard MG has my arms.

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It’s 4 A.M. and my body is trying to kill me

I went to bed last night feeling dead tired and was very much ready for sleep. I had been in pain all day thanks to weather changes waking up old back injuries.

Nestled in, three ibuprofen tablets in my system, perfect temperature in the room, gentle music playing to lull me to sleep. I fall asleep. Four hours later, I’m wide awake. My back is killing me again. I can barely turn over due to the pain. I’m still sleepy and tired. I need to sleep. I can’t get comfortable. I’m in the most comfortable bed I’ve ever owned (a tempurpedic) and it isn’t working for me. I’ve had pain meds, I’ve stretched my back muscles, I’ve used heat, I’ve used cold, I even let the shower water pulse on my back. No relief.

My poor body has been through way too much in this life. It needs a break. No more autoimmune crap, no more weird injuries, especially no more little old ladies running red lights slamming into me (I think of her fondly every time my back hurts; I just passed the 18th anniversary of that lovely day).

I gave up on trying to sleep. I slowly crawled out of bed at 4:45 and wandered into the living room. I opened up the curtain to look out over the dark night. I can’t sit, stand, or lie down long. What to do? What to do? I just kept pleading with the universe to ease the discomfort enough for me to take a nap. It didn’t happen. I decided to ease down onto the dark floor of the still dark living room to stretch. Tears and more tears flowed. I just want relief. I can’t take a lot of the strong prescription meds–they either do not work or they bring on other problems. If I take three ibuprofen tablets the pain eases a little, not enough for me to sleep, but at least I’m no longer homicidal.

Just like so many other things, I have to just bloody grin and bear it and wait for another horrible flare of whatever my body throws at me to pass.

After a while, the morning sky brightens, my mood is still quite dark. I try to focus on finishing up another project. I sit with my laptop, I lie on the couch with my laptop, I stand briefly with it. My myasthenic muscles are not very happy this morning because I haven’t rested enough so I can’t stand long. Something has to give. Soon!

Finally, the sun decides to peer in on me in my sad state. Another beautiful morning and day, but I’ll be stuck inside all … day … long fighting with my body.

I hope you have a better day, Sun.

Simply put … depression

The blanket of depression is just getting heavier and heavier. @$$#^!&

I dream of a day of having the luxury of being able to travel whenever and wherever I want again.

I dream of having reliable help/assistance when I need it.

I dream of someone willing to occasionally cook, clean, and pick up things at the store.

I dream of not having people around who promise to help and then disappear.

I dream of people saying what they really mean and not what they think I want to hear.

I dream of being around people who truly accept me for who I am.

I dream of having friends who don’t call me only when they need a favor or want to be nosy.

I dream of having people around who truly appreciate the help I provide them when they ask for it.

I’ve heard countless times from people who say I’m one of the strongest people they know. Inside I laugh. They don’t witness the meltdowns. They don’t feel the heartache and frustration. They don’t experience the inner struggles with worthiness. The don’t hear the daily dialogue between my mind and body of chronic ailments.

I look fine so I must be so?

If I had the energy, I’d just punch the next annoying, nosy, fair-weather friend in the face.

Out of Darkness, Into Light

Happy Diwali

Today is Diwali, the Hindu celebration with many stories behind it. In short, it celebrates moving out of darkness into light. I created a very simple rangoli for it this year.

Odd thing though, I woke up this morning not feeling so light, bright, and cheery. I’ve been fighting all sorts of emotions this week. I’m happy to be doing what I enjoy doing, but at the same time I’m still struggling with having to do so much just to make my humble ends meet. I’m really hoping for that big break one day before I collapse from sheer exhaustion.

Regardless how cruddy I feel, I must keep making forward progress … somehow … some way.

My 42nd birthday is next week. I’m excited at the prospect of having survived another year of good and bad chaos without having been locked away in a cell, mental ward, or urn/casket. A lot has been accomplished since this time last year. I am grateful for it all, but man, I just need some real, high-quality rest without a care in the world and the chance to wake up full of life and light!

One-year Anniversary with Imuran

July 19 marked the one-year anniversary of my relationship with Imuran (aka, azathioprine). It’s been one hell of a time. The first two days were fab. The next several weeks were pure hell as Imuran was not going to allow me to keep anything down. MG was being its typical asshole self the whole time. Hair started coming out in a major way after four months or so on it. It was around that time that I started noticing that I was better able to make it through a few extra hours each day, but when I crashed, I crashed hard. Today, thanks to letting go of a major stressor (my former employer), and having a little more time to rest when I need to, things have become a bit more stable. I still crash, but it isn’t as difficult to recover. My hair no longer comes out in clumps, just cycles of major shedding then new growth (all gray ). I still occasionally experience bouts of nausea but all in all, Imuran and I are getting along to fight the MG demon. Perhaps this time next year I’ll be able to walk one or two miles of my former four-mile route around the lake.

Happy Anniversary, Imuran!

Autoimmune diseases: A conversation between my brain and body

The following conversation occurs frequently in this autoimmune-disease-riddled body.


Brain: We should work on these two little projects right now.
Body: No. Let’s go back to sleep.
Brain: We slept for 10 hours last night! You’re just being lazy. Come on. It’s just two things that will take no more than a couple of hours.
Body: No. We’re here on the couch. Let’s sleep.
Brain: I’m not liking you right now.
Body: You’ll get over it after a nap.
Brain: You tend to take epic naps. A nap is only an hour. Next thing you know, it’ll be 6 p.m. and we’ve accomplished nothing.
Body: Yes, we would’ve accomplished resting some more.
Brain: Grrrr!
Body: (Stoic silence)

I’m really tired of these two fighting so much.