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!

Trying to make peace

I saw my myasthenia gravis (MG) neurologist today for a followup. I’ve been having a decent run with symptoms for a few months. I still have crazy, weak episodes but I’m recovering from them faster than I have in the past. I’m only on Imuran (aka, Azathioprine) to treat symptoms. I’ve run the gamut of Mestinon, prednisone, and IVIG. Imuran seems to be the path that’s working for me.

After completing my strength test today, the neuro sat back, looked at me, and had teary eyes and commented that I’ve come a long way since this time last year. Yes, it has been a crazy, long journey. I’m now able to do light exercise (cardio and hand weights along with some general resistance exercises). I’m happy about that. He also noticed I’ve lost a few more prednisone pounds since I last saw him. I’m VERY happy about that! I gained 65 pounds while on prednisone! I’m working my way to losing 45-50 more pounds to get back to my normal and comfortable weight. As long as I can still use my stationary bike and my weights, and stick to a decent diet, I should make it there. If I make it in a year, that would be wonderful.

On the flip side, I’ve been battling envy and jealousy lately over some people in my MG world who have the luxury of travel, vacation, and just generally doing cool things they enjoy with friends and family. Most of these people have a lot more in the way of financial resources to be able to do such things. Some on disability have spouses  who are the primary breadwinners. It’s challenging for me sometimes because it’s just me. I do ALL of my own chores, errands, cooking, cleaning, personal planning, self-care, oh yeah, and I still have to make a living. Dealing with all of it on top of chronic illness (MG isn’t the only chronic beast I battle) is very challenging. I can’t delegate to others because there’s no one to which to delegate. If it has to be accomplished, I’m it.

I try to keep my thoughts and feelings to myself around them—the lucky ones— but sometimes the evil green-eyed one comes out revealing my desire to have the help I really need at times and to be able to go out and truly enjoy the world the way I used to.

With today’s successful neurology followup, I’ll have to make peace and enjoy calmer MG days. Those days will have to serve as my “vacation,” my “exotic travels,” and my general “good times” until resources catch up.

Freedom from the cube

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The view from outside the cube.

It has been six months since being liberated from a cube in an office setting that I often found limiting and, at times, downright painful.

I left the comfort of a steady paycheck and 100% insurance coverage to save my life—literally. I knew if I tried to stay there I would not survive mentally or physically. Living with myasthenia gravis and a few other autoimmune issues has made me realize that I have to be my own caretaker, advocate, personal attendant, nap enforcer, chef, and employer.

Yes, it has been challenging financially and mentally, but the payoff has been a lot less stress of the office/bureaucratic kind and the freedom to work from my sofa, a café, a picnic table in the park, and wherever else my heart desires. I was determined to remain in the same line of work I’ve been in, but do it on my terms. It’s working! It’s been a slow start but a slow start is better than no start. Yes, I’m playing catchup with a few bills that fell behind during the income lapse, but I’ll eventually be back on schedule.

I have not experienced an ounce of guilt about having to lie down due to sudden weakness or fatigue while in the middle of a project. I don’t have to ask my supervisor if it’s okay for me to leave for the afternoon because I’m not feeling well. I now simply set my laptop aside, grab a pillow and lie on the couch  or walk to my bed and fall into a slumber for however long. As long as I meet a deadline for a project, it doesn’t matter if it’s done in one- or two-hour+ chunks. It will be completed.

I was sitting and working for a couple of hours in a café last week when an elderly man came in and ordered a mocha. He sat across from me. We ended up chatting. He told me that he thought it was really neat how so many people could work in different locations now. He said back in his day you were tied to your desk in an office. I commented that it’s nice actually being able to choose your “coworkers” with this type of setup. In an office, you’re stuck next to the annoying coworker who talks too loud or who interrupts you from a deep concentration for no real reason. In a café, you can plug in your headphones and ignore the people around you and not be concerned with being interrupted. At home, unless you have unruly family members or other housemates, it’s a pleasant environment free from distractions.

Working from home is not for everyone. Some people MUST have social interaction. I have plenty of interaction with the people for whom I’m contracting/consulting as well as my break periods when I text, email, and wander the hallways of social media. I’m not lonely nor bored. It’s PERFECT!

Here’s to freedom from a cube and continuing a forward march.

PS: MG seems to be liking this lifestyle. I haven’t had to punch it in the face lately. 🙂

For a fellow myasthenic in need

Since I’m not in a financial position to help, I thought I’d post a link to a fellow myasthenic’s page to extend the call out to others who might be in a better position. Autoimmune diseases really bite and when you have to battle more than one and have them treated by multiple doctors thanks to no one doctor being trained to treat them all, it becomes VERY EXPENSIVE!

Check it out and pass it on to others in your network.

http://www.gofundme.com/arwmvk

 

Redirecting the Ship

I’ve faced many challenges throughout my 40 years of life. Some of them have been self-imposed while most others have come from the great beyond. I like a good challenge, but I’ve been seriously questioning the ones I’ve been facing over the last few years. I mean, I’ve not had one single break. I can’t even say I’ve been able to actually stand up to most of the challenges.

There are people who say to me that they’re amazed at how I’ve dealt with things. I laugh because I think they’re joking. I sure as hell do not feel I’ve been dealing with things in the best way. In general, I’ve swayed back and forth between being optimistic and being the worst pessimist. I sometimes hide the pessimist from some of the people who see me every day just because I know that’s how they prefer things. They don’t want to hear the negative, pissy side of my thoughts. So, I smile and give off a things-are-kinda-ok-today vibe. Deep down I’m angry, upset, and keep questioning why I’m having to deal with what I consider an unfair amount of crap on my plate!

Sometimes I’m able to look at the world around me and see that there are people who are in worse shape than me. Other days, I don’t see them. I just see the chaotic world I’m living in.  Not all of this is based on myasthenia gravis (MG). I have other health issues I’ve been dealing with for many years, plus I’ve battled PTSD from various life incidents. I’ve been working my way through those things—thank God for therapists and EMDR (google EMDR if you don’t know what it is).

In general, I’ve always performed well at any and all jobs I’ve had. I pick things up quickly and charge forward. That hasn’t been the case with my current place of employment thanks to the health challenges and an environment of extreme favoritism, cliques, thin skins, and endless roadblocks.

Overcoming challenges, according to some, makes us stronger and well equipped to survive. I have another theory and that is when one challenge after another after another and another hit you, perhaps it’s the universe’s way of trying to get your attention and tell you that you need to steer your ship in a different direction…you’re on the wrong course. Hmmm…

I changed courses career-wise a few years ago when I decided to trade in my life of journalism/editing/proofreading to fully focus on the world of emergency management. I had been volunteering in that realm for a few years and thought I’d make it official and work on a Master’s degree in the field. What lead up to that sudden change in course was a series of roadblocks and challenges that were coming at me from many directions at the time. I had experienced my first and only layoff, I was being hit by major financial challenges, things were going south—again—with my health, etc. etc. There really wasn’t anything I could do to fix any of those things so I had to change course.

I’m now finding myself in that same position today. I love the field in which I work, but where I work isn’t working for me. I can’t change one single thing about the place or my position in it. My health is not cutting me any slack to even make more attempts to change things on the work front. I have zero desire to work for anyone else except for myself.

I’ve worked for myself before and enjoyed it. I was very young and had a lot more energy, but I did not have the discipline to pace myself so I started burning out and had to bow out and take orders from someone else. I can’t say I have that level of energy these days, but I do have the discipline to pace myself. With that said, I’m no longer looking for another employer. I’m looking at these “idea seeds” the universe has been planting in my head for a while now. If I nurture them and allow them to grow, I’ll be able to be my own boss again and be able to do the things I enjoy doing the most—helping others. I’ll also be helping myself for a change. I’m not going into detail on what these idea seeds are, but I’ll say one of them is related to my current career, the other is completely out in left field, while another one, which was planted a few days ago, ties together my past with my present.

Now, if I can stop getting in my own way, this looks to be a very interesting journey ahead. My life has never been boring and I’m not about to let it become boring now. Take that MG!