Tag Archives: disorder

JUDGMENT TURNS SPIRITUALITY INTO RELIGION

When the urge to point out the errors in others, in diverse ways of thinking, and in ideas contrary to our own takes hold, we too easily fall into the trap of thinking we (and only we) know what is right.  I think it is called pride – when we are convinced that we know what is best for all (projection, too).  I believe this kind of judgment (along with other factors, like greed) is what has repeatedly turned simple spiritual principles of Life into the myriad of religious doctrines and dogmas we see throughout all human history.  Judgment has led to wars, abuses, and atrocities which any rational being can clearly see is not right – “they are wrong, they are in our way, so we need to rid the world of their blasphemy”.  Anything which hurts us, or others, is wrong – what helps and uplifts is right…simple, isn’t it.  The One law of Love, written on our hearts…

Don’t Speak……Don’t Tell Me ’cause It Hurts. What NOT To Say To Someone Chronically Ill. Part Two.

Here is the SECOND part of a series. Please read the first part directly below this one first, although it is not absolutely necessary. If this is the only one you have the interest or patience for, it will do the job.

effingfibro

8.   “You’ve brought this on yourself. You were so determined to be ill that you’ve talked yourself into it.” Yeah……cos I’ve got THAT much control over every one of my involuntary physiological processes…I must be some kind of Indian Guru or something. Where’s my medal? And if I’ve got such an awesome level of control over my health, how come I can’t make myself well again? I wasn’t “determined to be ill,” you moron; I just knew something wasn’t right a long time before any of you did because I live in this body. Do you seriously think I purposely, deliberately screwed up my happy, productive, independent, joyful life? The one I had Before All This? There is no upside to be crippled by some mysterious illness that no-one can find a cure for. Well, maybe one: it strips away shallow friendship, sorts out the real “friends” from the…

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Don’t Speak……Don’t Tell Me ’cause It Hurts. What NOT To Say To Chronically Ill People. Part One.

There are hundreds or thousands of people like us out there. I am “luckier” than most in that I have irrefutable medical proof that I have a rare chronic disorder. Many of us are not that lucky. Think before you judge and speak people! Otherwise, you richly deserve whatever diatribe you have triggered!  And I want to be there to watch you squirm, and if you are not squirming enough, I’ll see what I can do to remedy that!

effingfibro

Chronically fit and well people (and, I suspect, those with a degree of health issues that also have escaped formal dx for whatever reason) simply do NOT understand chronic illness. They just don’t.

This is evidenced by the ridiculous things they trundle out for our “benefit”, their pearls of wisdom that are supposed to either encourage us or belittle us into some sort of miraculous spontaneous recovery from whatever ails us, which is usually something really quite minor, in their opinion.

Here are just some of the things I am sick to death and back of hearing:

1.   “You sleep too much, that’s your problem!”  Absurd. Anyone with a working brain cell will tell you that (sleeping pills notwithstanding) it is literally impossible to MAKE yourself sleep. It can’t be done. If it could, insomnia wouldn’t exist. We sleep because our bodies are knackered, exhausted, wiped-out, fatigued, tired, whatever…

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My Dire-y Blog 05/17/2015, Oops, Fell Again

I had been doing pretty well. I had not fallen in a couple years, but my luck did not hold out. I sort of tripped on one leg of a camera tripod, stumbled a few steps towards my entertainment center, and boom! I landed sort of on my left side and knee with my right arm hitting the entertainment center. It hurt pretty bad for about 10 minutes while I just sat/lay there on the floor. When I felt up to trying to get up off of the floor, I used a Lazy-Boy recliner for leverage and slowly made it to my feet. I have some scrapes on my left elbow and right knee, and my right arm feels like I might have pulled a muscle, but I guess I will be OK. I expect I will hurt more than normal for a few days.

My rare neural disorder, Multifocal Motor Neuropathy (MMN) has killed off many of the nerves in my arms and legs, leaving them all weaker than they should be. My left arm/hand and right leg are especially weak. Without something to lean my arms against, I can no longer stand up from the floor without help. Also, for whatever reason, this disorder has played havoc with my sense of balance so that any slight bump or unexpected dip or rise in the yard, sidewalk, street, etc. is sometimes enough to knock me off my feet. I guess I have gotten used to being so careful walking that I have stayed on my feet for a couple of years. There was a time in the past where I was falling several times a year. Once I even fell down the stairs. Anyway, this is just another aspect of MMN I deal with on a daily basis.

One reason for writing this post is simply to document the occurrence for myself, because otherwise I would forget what happened when. I have started to be more careful about documenting because I know my mind is for sh*t these days. Probably goes along with the severe fatigue and other symptoms I have. Also, there are thousands, maybe millions, of people out there who deal with similar, and worse symptoms of diseases and disorders out there day after day. We never hear about them because they keep to themselves, for the most part, suffering in silence. Normal, healthy people have no clue how many of us have these challenges to cope with every day because they never hear about us. So, that is another reason for writing, so that others can become a little more aware of their fellow human beings on a little more personal level. I hope that greater awareness will lead to greater tolerance, understanding, and compassion. Remember, just because a person does not LOOK sick, does not mean they feel OK.  They could be hurting terribly without showing it, and maybe are not able to do everything a healthy person can.

Choose to be a caring, loving human being instead of yet another selfish asshole. There are way too many assholes, and not enough kind people in the world!

My Dire-y Blog, 05/06/2015 – How much sleep can one person take?-

Slept last night from about 11:30 pm till 6:30 am. Got up, took my meds, and went back to bed for another two hours. Finally got up, really still out of it, but went downstairs (to my man-cave). I tried to get into something since I am working on a review of IP camera apps, but it did not work. I went back to bed till 12 noon. Got up, took my meds, fed the cats, and went back to bed. Finally, I got up about 4:30 pm and stayed up this time. I don’t know what happened, but I felt a lot better, after all that sleep. This is the way it goes these days sometimes. I blame it on my MMN (Multifocal Motor Neuropathy), but who knows?

Like I mentioned, I have a review blog in the works. I purchased two IP surveillance cameras, and have been having a hard time finding an app that does what I want it to do. So, I will be posting the outcome of that search for others to benefit by the information.

My Dire-y Blog, 04/25/2015, Blah…

I have ideas to share, but this has been a bad week for energy and motivation. I just don’t seem to be able to get into it. I have a medical condition called Multifocal Motor Neuropathy (MMN) which has as one of its common symptoms, severe fatigue. I hate living like this where every “waking” second is a struggle to stay awake, and every physical action is a fight. If you care, or want to know, (if I were you, which I am not, in case you hadn’t figured that out, I would not give a sh*t, or want to know…TMI), the particular brand of MMN I have is Multifocal Aquired Motor Axonopathy (MAMA). He, he…MAMA got me! Just wish the medical “beast” (in other words, the medical community) had a fricken (fricken, freakin’ fracking…?) clue what it is. They have lots of words, and few answers. Maybe next week will be better. I cannot ever predict when my day is going to be bad, or not so bad. I even have things already written and ready to publish. Just don’t feel up to it yet. Maybe tommorrow…