Thursday, October 22, 2009

The Reason Why . . .

As you've all probably been well aware, my posts have become VERY infrequent. I know that it is probably not on the top of questions that must be answered list as to why, for all my bloggy friends out there, but still, I feel the need to at least "briefly" explain.

A few years ago, I was diagnosed with Narcolepsy. You know, the sleeping disorder that is stigmatized with people who drop to the floor and sleep in the middle of every day activities. . . I do not have that kind of narcolepsy. Apparently, the kind I do have is the more common type in people diagnosed with this "disorder?".

I am VERY tired. ALL. OF. THE. TIME. There are days when I have to leave work or wherever I might be and get home as quickly as possible, for I know that soon I will need to sleep. It is not a sudden onset of falling asleep, just a slow impending feeling of all types of functioning trickling away, until I just can't go on for another second. I. MUST. SLEEP.

I'm sure that many of you have, at one point or another, felt that tiredness and sluggishness in which you just hit a wall and can not continue with anything. No cleaning or cooking. No speaking or thinking. Nothing . . . You simply need to be prone and do nothing but exist, which in and of itself is also no small feat. That is how I feel frequently. Almost every, single day.

The most ironic part of all this is that not commonly known, a lot of times with Narcolepsy - nights are riddled with Insomnia. Sheer exhaustion, but no sleep. And if sleep does prevail for some small portion of the night. It is a REM riddled sleep and the restorative phase of the sleep cycle never happens. This, in turn, makes you wake in the morning feeling less rested than when you went to bed. It's horrible and truly exhausting.

Over the last few years, I have been through trial and error with multitudes of different stimulants, sleep aids, anti-depressants and who knows what else. I was told that there is no cure, but only this type of treatment for Narcolepsy. After many "this isn't working" conversations with my "team" of specialists, I came to rest upon taking Adderall XR every day. I have now been on it for almost 3 years. I have increased the dose a few times and honestly, I think I may have developed an addiction. On the days I don't take it, the tenseness and irritability are unexplainable, and even on the days I do take it, many times, I still need to nap. I don't want to be on this for the rest of my life. I hate it.

So anyway, a while back, I started seeing an acupuncturist, herbalist, holistic practitioner/life coach - whatever you would like to call him. I went for my consultation with a two page laundry list of things I wanted to fix . . . after confirming the true loon that I am, we set to work with a plan. I started acupuncture twice weekly and have since weaned my way to only once weekly and it has definitely helped in many facets of my life - although I am disheartened to say that it has not helped with the sleep disorder.

I have dramatically changed my diet and eating habits. Although I am still a junk food junkie, which is (Thank The Dear Lord) OK, I have added certain warming/cooling foods, etc. into my diet at particular times during the day. I can not even begin to express the wonders it has done for my digestive tract :) A few months ago, I weaned myself off of the Adderall in hopes that I could start an herbal/mineral based regimen that would "naturally" help with the Narcolepsy and lethargy of my life. I have had to go back and forth between the two regimens a few times, in order to make it through certain days and times in our busy life, but for the most part, I have faithfully stuck to my natural plan. It is not working.

In frustration and desperation, I went back to my "team" of specialists and discussed my new regimen with my life coach. Unfortunately, I was not met with unanimous approval of going the holistic route. I could honestly say that I was even met with a little disdain and scourn. After a lot of discussion and argument, everyone decided that it was time to regroup, but, of course, on their terms.

So, as I still continue trying to battle this naturally and in my own way, my "team" has done extensive research and I guess have had quite a few intriguing discussions regarding my case. Recently, I was greeted with the good and not so good news of their findings. The not so good news is that they are 95% sure (whatever that means) that the problem lies within my Hypothalamus. They believe that at some point it suffered some sort of trauma and is now damaged. Unfortunately, once damaged, the Hypothalamus will not recover or heal. Basically, I was left with "It is what it is, get used to it". Nice. If it is not that, it might possibly be a small benign tumor sitting and putting pressure on the Hypothalamus, but they don't really think this is the case. Then why tell me, I ask?

The good news is that it is nothing fatal or life threatening or that cannot be controlled with the right medication, modifications, etc. etc. etc. blah, blah, blah. And as I said before, I DO NOT WANT TO BE ON MEDICATION FOR THE REST OF MY LIFE! I just want to feel "normal". But, alas, this does not seem to be in the cards for me, at least not right now. I think I have a lot of regrouping to do myself. But until then, I will continue to plug along and try to nourish my body and brain (including my lovely little Hypothalamus) naturally and herbally and holistically. And when I can't, I can't . . . I will just sleep.

So there you have it my friends. My "brief" (haha) explanation of why I am so scattered with my posting. I just don't seem to have it in me most of the time lately. So if you don't hear from me, I haven't disappeared from the face of the earth. I'm still here and OK. I'm just napping.

Until next time . . .


Anonymous said...

WOW! I'm sorry to hear that. Dealing with ones health can be so frustrating at times. I have the same feelings about being on a medication forever due to my panic disorder,It's like you're damned if you do or damned if you don't. I sure hope one day medical science comes up with better solutions to these benign but lifesucking problems.
I wish ya luck and tons of restful sleep! said...

Completely intriguing!! I MUST nap every day too - but I don't think I am NEARLY as severe as you! I hope that your "team" is able to make you comfortable with whatever it is that you decide - My feeling is, happiness and normalcy through medication is not a bad thing!

I do have Panic Disorder and you have inspired me to do a post on it someday soon.

Thanks for sharing!!

Beth Dunn said...

Gosh that is a lot going on. I hope you can get to "normal" without meds too. Best of luck. oxox


Leeuna said...

Gee, this sounds horrible. I hope you can find the right balance to be able to function normally. There are so many different aliments that plague so many of us. I think two thirds of the population these days are on some kind of medication. I wish you all the best. said...

Wondering how you are doing?!?!?!

Margaret said...

Just wondering how you are doing? I hope you are happy and healthy! Let your blogger friends know if you need anything!


Chris said...

Miss you. I hope things are looking better for you.