Tag Archives: paraesthesia

A Summary Of How Hard It Is, For Me To Appear Normal – a short bio

How Hard It Is, For Me To Appear Normal

At one time, I was just as I appeared to be, normal. But that was quite a while ago. Now it’s a whole different story. Now, appearing normal is my biggest disability because nothing on the inside of me is as it appears on the outside. It takes more effort and energy than I can ever explain in one document just to appear normal. This statement, for example, I started it 30 minutes ago. I do the best I can and I don’t hunt and peck type.

I took typing in the summer of my ninth grade and even though I never had the opportunity to use it, it stuck with me and came back a soon as I started typing again ten years ago. Even though I can type approximately 35 words a minute, I can’t do it without errors. But those aren’t the only errors that I encounter when I type out a document of this nature. In order for the document to portray an accurate account of my experiences, feelings, both physical and emotional, and actions, both wanted and unwanted, I constantly need to re-read it as I type it.

Even though my fingers are the most guilty parties, because of the multitude of times I fat-finger what I’m trying to type, they’re not the main factor in my inability to finish this document in a timely manner. The main factor is my inability to concentrate on what I’m writing about.

For that reason, I’ll make a list of the problems that I get to deal with every day and how they impact every aspect of my life that I can think of while I write this, knowing that there will be things that I will miss and need to update at a later time when I remember them;

  • Weakness on right side, all the time
  • Slowness on right side, all the time
  • Paraesthesia all the time on my all parts of the right side of my body all the time
  • Difficulty with balance, bowel control, vision in right eye, all of the time
  • Trouble swallowing, hearing, holding on to things, most of the time
  • Difficulty with memory, (mostly forgetfulness & short term memory) creating problems with understanding, reasoning, judgment, analyzing, deciding…etc, this happens every time I need to use these skills.
  • Difficulty maintaining attention, maintaining focus and intent to finish projects, and tasks. this happens whenever I need to concentrate on a task or project or focus on getting a job done. I call it neurological ADD. It’ directly due to the massive injury in my brain.
  • Think, speak, hear and read dyslexic, and I do it quite often
  • Easily frustrated because of my inabilities often vocalizing my frustration at the top of my voice without control, hesitation or contemplation, too often
  • PBA more often, as my diet changes

All of these manifestations evolved after the severe closed head injury I sustained on December 24, 1984 as the result of a drunk driver running a red light and t-boning the car I was riding in. All of these problems are a direct result of the two bruises on my brain and strokes I sustained while comatose for 4 weeks due to that head injury.

For clarification purposes, I’ve now been working on this document for a little over 3 hours, to get this far and modified it again 5 hrs, later.

I will now try to explain how each of these manifestations affects the different parts of my life;

  • Weakness and slowness on right side

I suffer from multiple problems all on the right side of my body. These problems include but are definitely not limited to: all the troubles and difficulties listed above, such as swallowing, hearing, vision, coordination, speed of movement, difficulty holding on to things – I’m always dropping things because I can’t always feel my grip on them. I live with constant numbness (pins and needles) throughout my whole right side. My wrist always feels like it has a bunch of rubber bands around it that are always pulling and resisting every time I move a muscle. I never feel this on my left side. Every muscle on my right side has this elastic feeling.

My hip replacement is on the right hip probably because of my weakness on that side as well as my hernia, and chronic back ache in my lower back on right side. My right hand flops around every step I take, making it impossible to appear completely normal. Evidence of this can only be seen to an astute observer watching me walk. Whenever I take a step, my right hand flops around because of the lack of control I have over it. It’s like my hand is held on my wrist by a bunch of rubber bands.

Because my right side is slower than my left, my right foot gets caught dragging behind, causing me to stumble. While just casually walking, it takes constant effort to walk without limping, due to the weakness on my right side. This is something that can be easily seen by everybody every time I run. I cannot run without a very noticeable limp. Even walking fast can’t be done without a noticeable limp. I don’t like walking fast or running because of the problems I’ve had in the past with balance, slow and weak right leg that won’t work properly causing me to stumble or fall. I seldom walk anywhere without stumbling at least once because my right leg gets lazy and won’t lift enough to clear the ground.

To avoid any of these problems, it takes an enormous amount of effort and energy. To appear normal, it takes even more effort and energy.

  • Trouble swallowing, hearing, holding on to things

I often get food caught in my throat when several attempts to swallow it fail. I attribute that to the weakness on my right side not allowing my throat muscles to work as efficiently as the muscles on my left side where I didn’t suffer any paralyses. I have the same problem holding on to things. Because I can’t always feel what I’m holding in my right hand, I often drop what I’m holding on to. Things seem to slip through my fingers more than they do with anybody else. Of the hearing problems I have, only hearing dyslexic is probably a result of the head injury. The tinnitus I have is probably due to the direct impact of the cars involved in the accidents that caused my groin injury and neck injury I received in another car accident in March of 1993. I say that the dyslexic hearing is a result of my head injury because of the trouble I have with my short term memory and not being able to recall the meaning of a particular word immediately. I often hear words spoken in reverse order because of this. I often speak my words in reverse order because of the same reason.

  • Difficulty with balance, bowel control, vision in right eye

My balance is always questionable. Although I don’t often lose my balance while on both feet, I can definitely balance on my left leg better than on my right leg. My right leg doesn’t have the same amount of strength, endurance or ability to make the slight muscle changes necessary for balance, as my left leg has. That last reason alone is the major reason my balance problems persist.

The most embarrassing problem that I have to deal with, because it can sometimes be messy, is my ability to withhold a bowel movement. I attribute this to two factors; 1. That I’m not taking opioid medication anymore and enjoying a diet more rich in fruits and vegetables and 2. Weakness of my sphincter muscles to retain the fecal matter in my colon. Knowing that I always have at least two bowels movements each day, usually in the morning, I often have to stay close to a bathroom in the often case that I’ll have to go a third or fourth time during the morning hours. I’m constantly making adjustments for this problem alone for there are times when I’ve had accidents while away from home.

Concerning the vision in my right eye, the clarity of the vision in my right eye grows weaker on its own, sometimes while I’m typing and can visually witness it and sometimes while I’m sleeping and wake up with diminished focus. Sometimes while I’m typing on my computer, I can remember when I realized a diminished focus in my right eye just recently. This wasn’t the first time this has happened either. It’s happened at least 3 times in the past 15 years. But it’s only happened in my right eye.

  • Difficulty with memory, (mostly forgetfulness & short term memory) creating problems with understanding, reasoning, judgment, analyzing, deciding…etc, this happens every time I need to use these skills.

This is quite often the most difficult disability to hide as it’s always mistaken for stupidity or ignorance, when it’s almost always a case or either poor judgment and poor decision making due to the inability of my brain to remember and think rationally and in a timely manner. When given time to organize my thoughts, I can prove to be very intelligent. Living without the ability to use this gift has proven to be a downfall for me. This is where my lack of short term memory has had the most effect on my life. Frustration hits me hard when I try to accomplish something I should be able to do in a specific amount of time, and can’t. I either mess up the whole project, right at the finish of the project or can’t even come close to finishing it in the time I should be able to. This often manifests itself in a very loud and very vulgar output that I have absolutely no control over. Anger issues are a common problem with head injuries of the nature I sustained and I think they’re due exactly to this reason.

  • Difficulty maintaining attention, keeping focused and intent to finish projects, and tasks. this happens whenever I need to concentrate on a task or project or focus on getting a job done. I call it neurological ADD.

This is caused by the same problems as my above problem with judgment and reasoning. When you can’t remember what to focus on, how can you focus on anything? Lack of short term memory impacts a life more than almost anything else. You can never begin to understand what it does to interrupt a life until it happens to you and you have to live with it. These are “shoes that not everybody gets to walk in”, meaning only a few can fully understand the impact that no short term memory has on a life, and half of those that can, are are complete invalids. The other half are like me but you can usually see their disabilities. With me, you can’t because of the trouble, effort and energy I put out to look like I’m not disabled. I’m not a complete invalid, just an unseen invalid.

  • Think, speak, hear and read dyslexic often

I can’t remember living with this problem before the head injury so I attribute this disability as well to my neurological damage. Quite often I’ll say something dyslexic, or hear something dyslexic. Since my thinking is often dyslexic, I often type out my thoughts dyslexic as well. And this doesn’t even come close to the number of times I read dyslexic. I see a lot of words and numbers backwards or letters within the word out of order. This always causes me to go back and re-read what I just read. I also have to re-read what I just read because I can’t remember specific titles or names that I just read. You can only begin to fathom the problems that his can cause while I get to realize the full gamut of problems it actually does cause.

  • Easily frustrated because of my inabilities often vocalizing my frustration at the top of my voice without hesitation or contemplation

This is the most damaging behavior caused directly by the neurological damage I sustained.  Because of my recurring inabilities to complete projects and tasks, and verbalizing my frustrations in a vulgar manner, I’m always left feeling completely shamed from the action that I just presented, completely out of my control. I have no control over this behavior because all of my actions are actually reactions to my inability to complete or complete accurately, any project or task that I work on. It doesn’t seem to matter how many times I say the serenity prayer, when frustration of my own inabilities decides to rear its ugly head, I have absolutely no control over how my brain is going to direct me to act. Again, you can only imagine the problems this kind of behavior can cause while I have to realize the full gamut of those problems.

  • PBA more often, as my diet changes has become one my most recent concerns, I don’t know if this has anything to do with my acute diet change, but if it does, it’s a side effect that’s not nearly as hard to live with, as any of the side effects that I get from eating carbs.

 

I realize that the problems I experience are problems that a lot of other people experience, but how many people experience all of these problems on a daily basis, on an hourly basis or with the frequency that I do?

These are disabilities connected simply with the neurologic damage I live with, not the other disabilities I live with, in the form disabling pain in my back and groin and sometimes my hip. My back is sore when I get out of bed in the morning until I get back into bed at night, due to the degenerative disc disease and scoliosis I live with. The groin/testicular pain that I live with, comes on every afternoon, as I sit working at my desk. That pain has gotten severe enough to make me nauseous, at times. For twenty years, I’ve tried every known type of pain relief known to man, including opioid medication, nerve blocks, TENS, SCENAR, acupuncture, massage, topical balms, all without permanent success. Other than the nerve blocks, which are super painful to get, the longest relief I’ve ever gotten, was from acupuncture. Most treatments lasted for a couple days, yet sometimes I had limited relief on the third day. This pain is the result of a hernia procedure that left what I was told is my genitofemoral nerve but I’d rather think it’s my Ilioinguinal nerve because that’s the nerve that branches out to the anterior scrotal nerve, trapped in scar tissue, which is where my pain emanates from.

The hip pain I experience is due to the hip replacement I had two years ago. I experience a stabbing pain, when I need to pivot on that hip, that almost takes my leg out from under me. I can walk up to ¼ mile painlessly. Thereafter the pain just keeps getting worse until I can sit or lay down.

My daily pain levels are as follows;

  • Back pain – 2 when I wake up, 7 when I get out of bed with jabs to 8 or 9 following certain movements, 4 as I sit at my desk and work, 7 when I get up from my chair, 4-6 as I walk with right leg steps being very painful in the 8-9 range. When I go to bed at night the pain level as around the 4-6 range.
  • Testicular/groin pain doesn’t present itself until afternoon, depending on how long I need to sit at my desk. When it does it starts out in the 3-5 range increasing steadily in intensity for the rest of the day sometimes to the 8-10 range. (This is the pain that has made me suicidal.)
  • Hip pain ranges from 0 when I wake up and get out of bed to 4-6 depending on how much I’m on my feet and walking. Twisting on that leg often provokes a stabbing pain jumping to 8 and often causes me to stumble.

I’ve now spent 4 hours on day 2 for this document to this point. I’ve updated it twice today after 3 times yesterday. I ended up spending about 8 hours on it yesterday.

I’ve had to live with this condition for the last 30 years, some of the pain for 40 years and some for only  20 years. I’ve searched for cures for my pain to no avail. I’ve even requested that my right testicle be removed, thinking that if there was nothing there to create the pain, the pain wouldn’t exist, but was told time after time that I would have to live with phantom pain. So, I live with pain, sometimes massive pain, the kind that doubles you over.

This last edit took another 3 hours and includes 6-7 updates within the whole document. Even though I’ve updated this document 5 or 6 times, I’m still not sure I’ve listed everything necessary. Something keeps nagging at me that I just can’t remember. All I can say is that when something affects every aspect of your life, as my neurological problems do mine, it’s hard to cover everything in one document.

That was my last edit until I thought of some other things, while at church this morning that I should put in here. Now I just have to remember what they were…oh yes, the testicular pain that usually doesn’t start until afternoon; that happens every day except Sundays when it hits me every Sunday in the morning while at church, from having to sit in a pew for an hours. Something else came to mind while in church this Morning, sure wish I could remember what it was…Oh yes, OCD, Obsessive Compulsive Disorder. Even though it hasn’t been diagnosed, I think I do have a problem with it due to my ADD. Because I have to keep my mind occupied, I have this obsession with the game FreeCell. But then I had my obsessions before the head injury as well. They were just a little more difficult pursuits than what I’m capable of now, like bowling and golf and any other sport I was invited to play. Now, my obsessions are playing card games on the computer when I’m waiting on hold or any other time when I have nothing else to do. Thank God I do that when I’m alone. (FYI- last edit started over 6 hours ago, but I only spent about 5 hours typing and editing it. That’s 6 days so far to complete this.)

Addendum:  While not being able to understand any part of a paragraph I read, I re-read it two hours later with complete understanding. Every word that I didn’t know before, my mind was able to recall when I read it the second time. My mind had 2 hours to work on the meaning of those words that I couldn’t recall earlier without me even thinking about it. Not being able to recall the definitions as I was reading the paragraph, wouldn’t allow me to understand it. But, I never would have understood it if I didn’t re-read it, because I couldn’t remember it. I also left in the errors from prior edits, to give you an idea of the problems I was experiencing at the time.