First Diary Entry

Sunday, August 03, 2014

I am writing this diary at the suggestion of a CFS patient who said that doing so helped her obtain SSDI, not that I have the slightest confidence that it will do any good.  The SSDI criteria are very clear and specifically state that symptoms as described by the patient are irrelevant.  In other words, it doesn’t matter how shitty you feel, or how much pain you are in, or how exhausted.  They want “medical proof” in the form of lab tests, which of course there are none conclusively proving CFIDS.  When my claim was turned down in 1995 I was told, “CFIDS is not a recognized disability in the state of Florida because you could still work at home as a telemarketer.”  Well no, I really could not, only because I totally suck at sales, but that is a story for another time.  CFIDS was “recognized” in California, where I was in the preliminary stages of being approved when I moved here.  I knew I didn’t have a chance when a claim right before mine was denied:  An 18-year-old boy, quadriplegic, who had figured out a way to type by pressing the keys with a pencil held in his mouth; Florida declared him not to be disabled because he could type.  Clearly I can type, as I am writing this diary.  Nevertheless, FWIW –

I was going to start this diary last week but was too tired.  I am drinking a cup of coffee.  Really shouldn’t, as it will certainly make the muscle spasms and pain worse and interfere with my sleep, but I was too exhausted.  Today began as a typical day living with CFIDS:  I awoke in the early a.m. after just about 4 hours of sleep, felt like shit, started to panic until I realized I didn’t have to get up until much later.  Managed to go back to sleep.  Awoke again around noon, still feeling like shit physically.  I overdid it yesterday on the landscaping although I got very little done.  That happened last weekend too, when I did renovations on Saturday and had to spend Sunday and Monday in bed, and began to feel halfway normal by Wednesday.  As I thought about all the things that need to get done around here, which I don’t have the energy to do, the familiar panic ensued, an overwhelming sense of impending doom, like a heavy weight on my chest that almost prevents me from breathing.  I say a prayer, “God, I can’t handle my life, please help me.”  Deep breath.  I tell myself I don’t have to accomplish that much today; I can clean tomorrow, the yoga student won’t be here until Tuesday.  I make myself do some yoga stretches and breathing in bed.  I don’t have the energy but I know it will make me feel better.

Interestingly, it seems easier to be determined “Disabled” in Florida for mental issues rather than physical ailments.  I have heard of people getting on SSDI for having panic attacks.  I am tempted to pursue that angle instead, but quite frankly I would be embarrassed to receive Disability for something that silly, especially after being seriously ill for so many years.  And my panic is, of course, secondary to the physical condition which makes it very difficult to do things such as making a living, and is therefore kind of an appropriate response.  Likewise, depression.  Until fairly recently some doctors believed that CFIDS was caused by depression.  Now the general consensus is that the disease has a viral etiology.  When I was first diagnosed, the doctor asked me, “Do you think you are depressed?”  “Yes!” I replied.  “I’ve always been a very positive person, but now I’m sick, I’ve lost my job and my beautiful home on the mountainside overlooking the ocean, and I have no idea how I am going to survive.  So, I think my depression is quite appropriate to the situation.”  The doctor agreed.  Am I depressed now?  Yes.  But even if I were willing to take toxic drugs to improve my mood, obviously it would not do a damn thing to change the circumstances.  I would still be physically sick, drowning in debt, essentially jobless, and forced to sell my home.  Actually it would make the situation worse, since I don’t have insurance and the doctor visits and drugs would only increase my debt.

Well, I have finished the small cup of coffee and feeling slightly more alert, although the pain in my shoulders has worsened and I catch myself wanting to grind my teeth.  I really can’t handle coffee.  At least not drinking it.  My immune system has been poor lately, as evidenced by skin lesions, breakouts and yeast.  I think I will do a coffee enema (per Dr. Gerson protocol).  I heard on Dr. Oz the other night that coffee enemas can actually cause a severe electrolyte imbalance resulting in arrhythmia and death!  I was surprised to hear it, and have had no such luck in the several years that I have been occasionally doing the procedure.  Of course, if I really wanted to commit suicide, all I would have to do is get a job as a receptionist in a doctor’s office.  Not an orthopedist or plastic surgeon, but rather, a general medical or infectious disease specialist, where lots of contagious patients go.  That would probably kill me within a couple of months.

Meanwhile, here I am.  Still living, still breathing.  The animals are not going to feed themselves and the house is not going to clean itself.