I knew it would happen. The human body can only take so much before it takes things into it's own...hands. After four months without proper nighttime meds, my body is starting to shut down. For those of you that have not experienced chronic sleep deprivation, think of the effects of this ailment like a laptop running low on battery power. The screens dims, then vanishes, to conserve the battery. Today the screen is vanishing quickly. It's been dim for quite awhile. Go ahead, laugh. I did. Until today. Today my ability to walk straight is compromised. I am dizzy. I have blurred vision, shaking, confusion, itching, inability to concentrate, nystagmus (?), and of course the obsessive thoughts of when I get to sleep. Consider this. I was behind the wheel of a car. Life doesn't stop because you can't afford to get your sleep meds.
As I was driving the twenty minutes to pick up my meds, so many things were coursing through my mind. I was hoping I could keep my focus on the road. I was grateful that I would finally be able to get the meds necessary to ensure more than a few hours of broken sleep. I was grateful that my boy was returning home from his nature camp. I was thankful to be alive. Even as awful as I felt/feel...the alternative is unthinkable. I was also angry. Angry that in a country so wealthy it "can" help other nations overcome their trials, average people have to chose between food, mortgages, utilities and medical care. I am so angry! This month I chose to fill my prescription for sleep. Chose? That should not be a choice that anyone has to make! It should be a certainty. As John Q. Archibald shouted to police, "Sick. Help. Sick. Help." They should go together. Simple. It shouldn't be a partisan issue. It should be a human issue.
Once upon a time, getting a job at even a moderately sized company ensured not only a steady income, but reasonably priced Group Insurance. Today, neither is guaranteed. In the case of health care, some employers have had to raise the cost of the employee share of insurance to the point that employees have had to drop their insurance. A friend of mine had to do this, and he feels as though he has gotten a sizable raise. Being a reasonably healthy man, he was able to do this with only the nagging fear, that at age 51, his body warranty will run out. This is inexcusable. We have decades of greed to thank for it. Greed by lawyers, pharmaceutical companies, advertisers, insurance companies and a generation or so of "the world owes me". What is a person to do, after all, if Neosporin doesn't heal that hangnail instantly? Sue, of course! And up go the medical costs.
I hate acting girly. Forget that I am a girl. Feeling like this, so broken down, uncovers my tears. You name it, it makes me cry. On a normal daily basis, I am able to talk myself strong. I am proud of that. I can read, recite and recall positive thoughts and I can move forward. No matter how bad the pain is on that day. Chronic sleep deprivation threatens to toss it all out the window. Tears come too easily. On this day I pick Nick up from Loredo Taft, a nature camp. After spending nearly eight hours a day outside, he will be exhausted and cranky. I need to counter that. And I will. I will. I will collapse tonight and sleep, but during the rest of the day I will be comforting and understanding for Nick. Why did today have to be the day my screen started going blank?
Okay. Half hour to pick-up. Deep breaths. Focus. Only eight hours until bedtime......
Wednesday, January 26, 2011
Tuesday, January 18, 2011
What I Have and Why I Write
I have had many ailments throughout my life. Everything from the common childhood diseases of my day--Red Measles and Mumps--to Hepatitis (not C). It never occurred to me until I began working my first job that other people did not get ill frequently. It's always just been a part of my life.
I currently entertain a myriad of illnesses. Nearly all are "invisible". Nearly all have a stigma attached to them. Chronic Depression has lived with me for as long as I can remember. My first memory of not wanting to walk among the living is from around age 10 or 11. Of course, in 1971, depression was not openly recognized, and certainly not something children suffered from! Thankfully, through intensive therapy, and the introduction of medication, I was able to grab a hold of my life. It was a weak hold at first, but with practice has gotten much stronger.
I am also Bi-Polar. This disease exists on a sliding scale, having varied degrees of severity, or variants. I am fortunate to be on the lower end of the scale. The governing symptom, for me, is depression, but racing thoughts invade my head--particularly at night--keeping me awake all night. Yes, all night, without medication.
My depression runs in the family. My father, mother, and sister have all suffered, as have scores of cousins. The home environment suffered, as a result, lending spark to the illnesses. The biggest law in a dysfunctional home is the look of normalcy. Therefore, no one ever knew. No one could help. I am so proud that I took the steps and did the very hard work of therapy, and have been willing to be a bit of a guinea pig with regard to my medications. But, the stigma remains.
My biggest battles theses days are with Fibromyalgia and Chronic Fatigue Syndrome. It was theorized by a prominent Infectious Diseases doctor that my Chronic Fatigue was launched as a result of the Hepatitis I contracted (as a result of Mono gone wild). The theory was that as a result of such a serious (life-threatening) disease, my immune system went into overdrive to kick it. However, the signals got mixed somewhere in the fight and it forgot to stop fighting. So, everyday, needed or not, my immune system fights. Eventually, they fight my own...system! This is an exhausting process for the body. Think about how worn out you feel after you've just beaten a nasty flu. You are glad to not be at the mercy of your bathroom, but, at the same time you are just whipped. That is CFIDS everyday. Fibromyalgia is like mutant CFIDS. All the fatigue, and compromised memory, IBS, dizziness, blood sugar drops, sore throat, swollen lymph nodes, numbness and tingling, headaches, sleeplessness...an endless list of symptoms...and pain. So much pain. We have a general list of things that could help, but what works for one, does not necessarily work for the next in line. And the line is long.
You probably know someone or of someone that has Fibromyalgia. You've probably looked at them and wondered, "How bad could it be? They look great!". I hope you've never said it out loud. One of the battles we fight--aside from the above listed--is others' disbelief that our disease is real. We've been called lazy, liars, fakers and wimps, to name a few terms. Fibromyalgia has one of the highest suicide rates. And this is as much for lack of compassion as it is for physical pain.When your family talks about you negatively behind your back because they don't believe you, why go on? Shouldn't the people that are supposed to love you unconditionally be the ones that stand tallest behind you? Somewhere along the line we've been programmed to not believe what we can not see. I hope this frame of mind is discarded soon.
And, that is Why I Write. I post how I feel on particularly bad days. I don't do it to gain pity or whine. I do it to make these diseases real. Someone you know may be suffering from something you can't see. The "invisible" diseases include more than just Mental Illness, CFIDS and Fibromyalgia. Included are Myalgic Encephalomyelitis (ME), Epstein Barr Syndrome, and Lupus. The are many others...many.
It occurs to me, as I write the final paragraph, that perhaps these diseases should not be invisible to those who live with the sufferer. Look more closely. There will be a wince as we get up, or a foot shuffling as we walk because we are too tired to lift them. There will be rubbing of shoulders and irritability from fatigue. See it. Do not deny it because "we all get tired", or you think we should "buck up". These diseases are as real as a broken arm, heart disease, and cancer. Recognize the reality of the diseases and support the ones you love. We will love you for it, and it may even help the pain!
I currently entertain a myriad of illnesses. Nearly all are "invisible". Nearly all have a stigma attached to them. Chronic Depression has lived with me for as long as I can remember. My first memory of not wanting to walk among the living is from around age 10 or 11. Of course, in 1971, depression was not openly recognized, and certainly not something children suffered from! Thankfully, through intensive therapy, and the introduction of medication, I was able to grab a hold of my life. It was a weak hold at first, but with practice has gotten much stronger.
I am also Bi-Polar. This disease exists on a sliding scale, having varied degrees of severity, or variants. I am fortunate to be on the lower end of the scale. The governing symptom, for me, is depression, but racing thoughts invade my head--particularly at night--keeping me awake all night. Yes, all night, without medication.
My depression runs in the family. My father, mother, and sister have all suffered, as have scores of cousins. The home environment suffered, as a result, lending spark to the illnesses. The biggest law in a dysfunctional home is the look of normalcy. Therefore, no one ever knew. No one could help. I am so proud that I took the steps and did the very hard work of therapy, and have been willing to be a bit of a guinea pig with regard to my medications. But, the stigma remains.
My biggest battles theses days are with Fibromyalgia and Chronic Fatigue Syndrome. It was theorized by a prominent Infectious Diseases doctor that my Chronic Fatigue was launched as a result of the Hepatitis I contracted (as a result of Mono gone wild). The theory was that as a result of such a serious (life-threatening) disease, my immune system went into overdrive to kick it. However, the signals got mixed somewhere in the fight and it forgot to stop fighting. So, everyday, needed or not, my immune system fights. Eventually, they fight my own...system! This is an exhausting process for the body. Think about how worn out you feel after you've just beaten a nasty flu. You are glad to not be at the mercy of your bathroom, but, at the same time you are just whipped. That is CFIDS everyday. Fibromyalgia is like mutant CFIDS. All the fatigue, and compromised memory, IBS, dizziness, blood sugar drops, sore throat, swollen lymph nodes, numbness and tingling, headaches, sleeplessness...an endless list of symptoms...and pain. So much pain. We have a general list of things that could help, but what works for one, does not necessarily work for the next in line. And the line is long.
You probably know someone or of someone that has Fibromyalgia. You've probably looked at them and wondered, "How bad could it be? They look great!". I hope you've never said it out loud. One of the battles we fight--aside from the above listed--is others' disbelief that our disease is real. We've been called lazy, liars, fakers and wimps, to name a few terms. Fibromyalgia has one of the highest suicide rates. And this is as much for lack of compassion as it is for physical pain.When your family talks about you negatively behind your back because they don't believe you, why go on? Shouldn't the people that are supposed to love you unconditionally be the ones that stand tallest behind you? Somewhere along the line we've been programmed to not believe what we can not see. I hope this frame of mind is discarded soon.
And, that is Why I Write. I post how I feel on particularly bad days. I don't do it to gain pity or whine. I do it to make these diseases real. Someone you know may be suffering from something you can't see. The "invisible" diseases include more than just Mental Illness, CFIDS and Fibromyalgia. Included are Myalgic Encephalomyelitis (ME), Epstein Barr Syndrome, and Lupus. The are many others...many.
It occurs to me, as I write the final paragraph, that perhaps these diseases should not be invisible to those who live with the sufferer. Look more closely. There will be a wince as we get up, or a foot shuffling as we walk because we are too tired to lift them. There will be rubbing of shoulders and irritability from fatigue. See it. Do not deny it because "we all get tired", or you think we should "buck up". These diseases are as real as a broken arm, heart disease, and cancer. Recognize the reality of the diseases and support the ones you love. We will love you for it, and it may even help the pain!
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