One Sick Mother

The Importance Of Television

...to me.

I am usually alone when I have a seizure.  There are several reasons for this: They usually happen during the day, when everyone else is at school/work, or late at night. Also, when I feel an impending seizure, I take myself away from people; -usually to my bedroom, where I can let the attack happen in peace without freaking anyone else out.

I know that other people feel very helpless and uncomfortable when I have a seizure. Most epileptics don't get to experience other people's reactions, but I am conscious and aware, which adds an extra layer of discomfort to me -and to everyone. So I prefer to be alone when I seize.

Except I don't really. 

The worst seizures I ever had were in the hospital and right after, when they tried me on a particular drug Lyrica) which made them vastly worse:  I had paralysis and all sorts of Bad Shit happen.  I have having these horrible attacks many times a day. I remember trying to reach out/ communicate to a nurse during an attack, when I could not move, and I could feel myself sinking deeper and deeper into the fit; away from the real world.  I desperately wanted her to hold my hand. I needed some contact with the world. I was afraid of losing it and falling completely into unconsciousness or the seizure or ...whatever. I was afraid of getting lost in some sort of netherworld.  I remember how torn she was. She knew I needed her, and yet she was terrified for me and wanted to get help. In the ends, she left and got help. I wasn't alone for very long but I remember feeling crushed and terrified when she left.

It still happens sometimes during a particularly bad seizure. I can feel like my consciousness is slipping away. That is when I really want someone to be there, to keep my bond with the real world.  I know that "losing my bond with the world" is an irrational fear; that even if I do pass out, I am in little danger and will recover. But irrational or no: it is a real fear nonetheless.

So when I am alone and feel a seizure coming on, I will go to my room and turn on the telly. The light often bothers me, but the background babble of inanity helps. It keeps an auditory channel to the world open for me, in case I feel like I am losing consciousness. It probably makes no difference neurologically speaking, what will happen will happen. But it helps me to feel a little more secure and that's what's important.

I don't really watch that much television (I have it on in the background a lot, but I don't sit and watch it), I could take or leave telly most of the time. But when a seizure encroaches, it is my lifeline to the world.

The Sickest Loser?

I happened to catch a re-run of "The Biggest Loser" today. You know,  the show where a bunch of obese people go to a ranch for a few months and once there; they sweat, shrink and plot before our eyes until only one skinny person is left?  Well, the disclaimer at the end said something like all contestants undertook this diet and exercise regimen under supervision and with their medical needs needs taken into account  I'm paraphrasing, but it was something along those lines.

And that got me thinking.

Wouldn't it be nice to have the same support for sick people who want to lose weight or get/stay in shape?  Wouldn't it be lovely to have a nutritionist on hand for those of us who have special nutritional needs; say like absorption issues, diabetes, celiac, chemical sensitivities or food allergies?  I don't just mean for a 30 minute visit where she pulls plastic portions samples out of a drawer and doesn't listen when you say you eat less than that, but someone who actually listens and sees to be on-hand several times a week.

This woudl be good for people who are newly diagnosed and starting treatment: People recovering from Cushings, Addison's, Diabetes, thyroid disease of all types and virtually any hormonal issue will need specialized nutrition and exercise support. This is something obvious and yet not covered by doctors or usually insurance. And yet, failure to address these needs can cause almost as much problems as the initial problem, so it would be in the best interest of th insurance companies to support this (but when did insurance companies ever listen to a sick mother?).

And in addition to the dietary stuff: Some (most) of us sick people need specialized help on the fitness/exercise front, too.  How about stability and strengthening for the EDS-ers, weight loss for people with mobility issues, resistance training for the wheelchair user and maybe some conditioning for the chronically ill?

Although I am not hugely overweight (I certainly wouldn't qualify for that show),  I would like to lose a few pounds. And I have tried.  Unfortunately for me -and although I think I am rather an extreme case, I am certainly not alone;  my most recent attempt at fitness training,  which was 10 minutes on the elliptical trainer almost killed me by depleting one of me electrolytes. I also have issues with nutrition (low C, B12, folic acid, D, calcium, carnatine), diet (hypoglycemia), and certain types of exercise will cause me to have a seizure.  Add to this that I have physical limitations with EDS and Syringomyelia and I could keep a whole team of nutritionists, doctors and therapists occupied for several weeks even trying to come up with a viable plan.

But that doesn't mean that I don't deserve one or couldn't use one. And thinking about it, probably the only way someone like me could get that kind of support would be to have the backing of an expensive TV production.

So what about it, NBC? I am not volunteering for "The Sickest Loser" but I would certainly watch and try and pick up some pointers.

What Constitutes A Disease?

I have a confession to make.

I am not proud of this, but I have vowed to be as honest and representative of myself as possible on this blog and I owe you guys the truth:

I watch Celebrity Rehab with Dr Drew.

There. I said it. In fact I more than watch it. I am quite addicted to it. Yes, I am addicted to a show about addiction. There is some kind of pathetic irony there. But I’m not going to explore the pathetic irony. Not today, at least, but I do admit that it is a terrible thing to be addicted...  To anything!

Now, for another admission: I have to admit that my addiction to Celebrity Rehab is not quite as harmful to me as my fascination with the show Intervention. I used to love to enjoy a glass or wine or cognac while watching Intervention, which even I admit is kind of weird.  Celebrity Rehab does not inspire the same alcoholic cravings for some reason. Maybe just for some spicy food, which is not yet known to be bad for someone with my conditions (give it time. Eventually everything I love will be Verboten).

But one thing that puzzles me in the show is the constant references to addiction as a “disease”.  "It’s this disease, man! It’s the Dizeeeze”

Hmmmm.I have to admit that while I know –only too well- that alcoholism and other addictions can be really bad; life threatening, life altering and life ruining -I don’t want to take anything away from that. However, I have trouble getting my head around the concept of alcoholism or similar as a disease. I always thought of a disease as something that invaded the body. Or caused the body to attack itself. In other words I always thought of disease as being completely involuntary.

Let's face it: Alcoholism is not completely involuntary. There is a voluntary element. An element of choice. I am not saying it is an *easy* choice, but choice is there;- as opposed to something like cancer or Lupus, which is just going to come and get ya without a bye or leave.

I looked up the word “disease” in Webster: This is a partial excerpt:

dis·ease

 2: a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms : sickness , malady

OK no mention of voluntary or otherwise. Just a condition of the living body that impairs normal function. I suppose alcoholism fits that definition. Certainly the drunk alcoholic fits it.

But what about the sober alcoholic? Is normal function impaired then? If a person has a physical dependence; then yes. A physical dependence probably indicates progression to the point of disease.

But what about the person who only has a mental or emotional dependence? Or who binge drinks and can go for weeks or months sober?Is it still a disease then? This is what confuses me. And probably many other people with medical issues. And maybe even some people with alcoholism.

And I wonder about the whole concept of “disease”?  Because to me, the word suggests a lot more that the Webster definition: To me, there are implications of happenstance, as opposed to choice; of  treatability (check), and of …invasion.  I always see “disease” as the body being under attack; either by infection, cancer, autoimmune or a deficiency of some kind (beri-beri, scurvy, Fabry's). And often progressive.  However I see most disease as having a cure or a treatment. Disease is –or can be- transient.

I don’t consider that I have a disease. Correction: I don’t think of any of my known diagnoses as “diseases”. Ehlers-Danlos Syndrome is a genetic condition with no cure.

And if I am not diseased, what am I? And what is an alcoholic if not diseased?

I looked up a few other words, to see what Webster’s had to say about them. All are nouns, except interestingly; “Disorder”, which is a transitive verb

 

sick·ness

1 a: ill health : illness b: a disordered, weakened, or unsound condition

2: a specific disease

3: nausea , queasiness

 

con·di·tion 

4 a: a state of being <the human condition> b: social status : rank c: a usually defective state of health <a serious heart condition> d: a state of physical fitness or readiness for use <the car was in good condition> <exercising to get into condition> eplural : attendant circumstances <poor living conditions>

dis·or·der

to disturb the order of

2: to disturb the regular or normal functions of

3: a disease or disorder of the animal body

4: an unwholesome or disordered condition

mal·a·dy 

1 : a disease or disorder of the animal body

2 : an unwholesome or disordered condition

ill·ness

wickedness unpleasantness

an unhealthy condition of body or mind. "sickness"

I think if I wasa going to choose any of these for alcoholisam, it would be "malady". Because alccholism is certainly unwholesome and disordered.

But I still haven't really found any words that I think really apply to me. And I have been sitrting on this post for days, trying to work out why. I tihnk I have finally figured it out:

There is ony one word I want to use in application to my health, and I am going to keep fighting until I can apply it:

That word is "Well".

Yes, I know you guys are going to say I am in denial, but I have to believe that I can be -if not well then ...well, ...weller.