Weary! You may have noticed I used that word a lot. For those who don’t know, I live with chronic debilitating fatigue. I have Narcolepsy with Cataplexy, Fibromyalgia and a handful of other diagnoses which cross over each other and who knows which ones are just a feature of the others, or a separate condition in and of themselves. I don’t put too much stock in the labels anymore, I just know that after living this way for twenty years, I probably mean something a little different than most folks when I say that I am tired. I am not just tired, but weary. And I am weary of being weary.

Things like fatigue and pain are “subjective” in that no one who is not me, and not living in my body, can really “rate” or quantify my pain or my fatigue, nor can my fatigue be compared with someone else’s fatigue. Same with pain. Some people would suggest my problem is a “low threshold of pain” as opposed to the pain itself being excessive. I would have to say I disagree with anyone who says that and that they possibly have never experienced extreme pain.  I can’t judge their fatigue or pain, either, but what I can judge and see, is whether their pain or fatigue is as life-interrupting for them, as mine are for me.

I know that there are people for instance, who have forms of cancer that require ongoing chemotherapy, and both the chemotherapy and the cancer itself contribute to fatigue, and yet some of those folks are able to continue their normal activities without a great deal of disruption to their life.  Is that because their pain and fatigue are less, or is it because they simply have greater “willpower” and determination?  They might credit themselves with the determination, but I can tell you (and so can others who have known me before the pain and fatigue plagued me, as well as after) that I am one extremely determined lady.  Stubborn as the day is long, I’ve been known to keep going long after everyone else quits.  So, yeah, people who haven’t known me for my whole life, might jump to an inaccurate conclusion and judge me as lacking in drive, or just plain lazy, or even might think I’m easily discouraged or easily offended.

That used to bother me a lot.  But I learned that it is a waste of my precious little energy to either fret, or even make an effort to correct the misconceptions of others.  Let the chips fall, baby.  I can’t afford to let it get to me.

Before these medical issues developed, I walked, jogged, worked out with weights, worked full time, etc. Mind you, missed sleep always seemed to effect me more harshly than other folks, even as a kid, but I was capable of functioning to do a double shift such as 7am to 11 pm on occasion back through my 20’s, and nearing 30..

It was during my first pregnancy (age 31) that things started going absolutely haywire in my body and it got worse from there.

As I age, the decline is compounded to such a degree that I have felt much older than folks in my own age bracket for quite a while now. Relative to how bad it was when I was in my thirties, I feel slightly less “more aged” than my peers at almost-fifty, than I did in my thirties. In my thirties I functioned less well than many sixty-something’s if they were the kind who have stayed just moderately active. My memory was worse than some of the nursing home patients I had cared for!  And I knew some eighty-year-olds who put me to shame.  Those fortunate with good genes, plus a healthy lifestyle.

The first diagnosis of Bipolar, and subsequent treatment for that, helped a little, but it took a very long time before treatment by medications made any significant difference. About a year and a half. I had already had surgery for sleep apnea, which actually did not help curb the apnea at night, it just made it less likely that I would snore.  (Die quietly, will ya?).  Which was nice, but considering I still had to use the c-pap, I could have avoided the surgery and gone straight to that. The medical “establishment” has since learned that the type of surgery I had does very little if anything to alleviate the problem of apnea, and I don’t think many doctors are doing it now. I was finally diagnosed with the narcolepsy a few years ago, and once I was being treated for that, I no longer have needed to be on bipolar type meds, though I still have apnea and sleep with a C-pap machine even for naps. Now, should my C-pap supplies and my medications become inaccessible for any reason (such as many people are experiencing now under Obama-care), the likelihood of a return to the previous level of impairment is pretty high, and is in fact, increased, since I’m quite a bit older now.  That is not something I spend time dwelling on, though.  As my regular readers know, I know that Jesus is coming soon, and whether it is a few years or tonight, well, I trust Him.

For me, these days, a typical day is to wake up about six-thirty, and with the other three members of my family getting up at different times, rather than fix breakfast, each one sees to their own. I have my quiet time in the morning and my two cups of coffee. After everyone leaves is when I usually get online to scan the headlines and blog a bit. Then I get to the laundry or dishes or what have you. Depending on what kind of weather it is, I may try to get outside a little, but mostly this winter I’ve been cooped up. I make jewelry, and sitting up at a table is hard for me to sustain for long periods, but also my vision has gotten so bad, and the issues I have with numbness, results in my spending a lot of time crawling around on the floor with a flashlight trying to find little beads and things that I drop so easily. The longer I do something, the worse my fatigue, mind-fog, numbness, trigger point pain, and tension in my body get. By 2 or3 if I have been doing house work or sitting at the table working, I have to lay down and sleep with my c-pap machine on for about forty-five minutes in order to be able to fix supper and get through the remainder of the day, but regardless of a nap or not, but six-thirty every night, I am absolutely wiped out.  Everything I do, takes much longer for me to do than a “normal” person my age, and I lost the ability to multi-task about thirteen years ago.  It makes me absolutely nuts when I look up and it’s time to do supper, when I have only just started making progress on something.

As you can imagine, there are a lot of internal issues a person has to deal with when conditions like these so drastically alter their life. The last time I was able to work was three and a half years ago. That was a part time job, but between the drive, and even just a four-hour shift, it took a big toll and I had to stop after three months. Everything costs more, energy-wise for me than the average person. I am a deeply sensitive person to begin with, and so emotional things can set me back just as quickly as the physical demands.

Every day I get up and I start out with a positive or at least neutral sort of outlook. Even if I wake up feeling like it is time to go to bed. But throughout the day, as I do what I need to do, as I attempt various projects or have to do the inevitable errands or visits or appointments, it is not long before I am just longing to get home, to lie down, or sit down, with my pillows around me (to help me maintain decent posture when my muscles are so fatigued that I couldn’t do so otherwise, and also, I have to elevate my arms slightly so as not to have numb fingers.

I can’t sit and read, holding a book, I have to have a pillow on my lap, to prop the book up on. I can’t drive for long periods (usually I don’t drive more than thirty minutes at a time), and as you can imagine, as the years have passed, my life has narrowed quite much. Keeping up with busy friends is almost impossible. I liken it to standing beside a merry-go-round on the playground that is spinning really fast, and trying to jump on, but there is just no way I can run fast enough to do that. Or trying to jump onto a moving train.

I have tried informing folks in a new situation, and I have tried not talking about it at all, and I have tried various approaches in between, as far as letting others know what it is I deal with and how all of it truly effects me on a daily basis, in my “quality of life” so to speak. It is safe to say that my husband, my Mom, and one friend truly are the only ones who really know just what has been stripped away in my life by my particular “cocktail” of conditions. When I talk about it, that is tiring in and of itself, but sometimes I need for someone to know. If I am going to attempt to participate in something, it is only fair for me to let the person know that there are times that I cannot follow through on what I want to do. Talking about it, without getting too detailed, often leads people to offer well-meaning opinions and advice, which usually reflects the degree to which the don’t understand, lol.

I end up being very selective about whom I share anything with, and I am not naturally a “guarded” person in the least! I also rarely if ever venture into new social situations at all anymore.

I spend a huge amount of time alone. I have never minded solitude, but the degree of it sometimes is so much that it is not healthy. When all you have are your own thoughts to keep your mind occupied, you tend to get into ruts. My hearing is so poor and like everything else about me, I couldn’t just have “normal hearing loss, no!!!” I have a special kind which audiologists call the “cookie bite” pattern (named after the shape it takes when you graph it out on the audiograph). It is not a matter simply of losing volume. I hear some sounds normally, while some speech sounds disappear on me. Making all speech garbled. The more “background noise” the worse it is, and the more different sounds are reaching my ears at one time, makes it not only difficult to decipher speech but down right disorienting, not to mention disconcerting. I strain to make out conversation, another “tension” for my body to deal with. And forget turning on the radio. I do okay with talk radio turned up fairly loud or with headphones, but I have never been one of those people who learns the lyrics of any song because there are just too many of the sounds that my ears do not detect. Not only that, but even the key is distorted. I guess that is why I prefer more pure sounds like a single dulcimer, or piano concerto, etc. A soloist as opposed to choir, and forget anything with a beat. I mean, I can enjoy the beat, but there is no way I am going to decipher the words with all those different sounds going on.

So, just think of the implications of what I have shared. I can’t enjoy television (although my family got me the “t.v. ears” for Christmas, and having the sound piped directly into my ears helps me discern the softer speech sounds without having the volume so high that it literally hurts my eardrums on the parts I can hear at average volume. I asked for the T.V. ears because the volume I require is painful for others. But when I do wear the t.v. ears amplifier, I am cut off from conversation in the room around me, so isolated once again!’

Church is a challenge, can’t hear much of what is said, must sit at the end of the pew where there is a part of the pew on the end for me to lean against to help me stay upright. I have a pillow I leave there that I can’t sit without. I used to do choir, but several factors make that more strain than it is worth, even though I love to sing. One is the weakness, makes it hard to breathe properly for good singing, another is the hearing issues, and also vision issues, since I am in between the magnifiers and the bifocals stage, it means taking them on and off, on and off, and my coordination is not the best as it is. Between the challenge of holding a book, standing and sitting when called for, trying to follow what is being said, and the risk of losing my balance due to vision as well as poor balance and having to navigate a ramp coming down from choir, as well as practice being at that “bewitching hour” of six thirty when my fatigue crushes me on a nightly basis, well, I just gave up.

Anything that I aspire to take on, be it giving my house a good cleaning, keeping on top of the laundry, actually having someone over for supper, working on a craft project, there is always a chance that I will lose my stamina before I get through with what I am trying to do. As anyone knows who has ever cleaned a house, there is a lot of pulling things out, moving things around, a lot of stuff to do before you can do the stuff you aim to do, and then stuff to do to put away and clean up from the thing you intended to do. I don’t have a room in the house that can be a designated project space. So whatever I start, if it gets interrupted, that means putting it away, or tolerating the mess until I can get back to it. If I put it all away, there is the extra expenditure of energy that gets spent on setting it all up again.

It is a frustrating way to exist, and I work hardest at just keeping the right perspective than anything else I do, because most of the time that is the only aspect of anything that I do have any control over. I guess somewhere in my past I prayed for God to give me patience. It has never been a strong suit for me.

But I don’t have any trouble coming up with blessings to count. I nap when I have to, give myself a lot of talks, and count blessings a lot. That is how I keep going. One of my blessings is that despite the fact my life has gotten narrower and narrower, I don’t suffer from depression. At one time I did. It was extremely severe and lasted many years. I have learned to be content most of the time, and that is really an answer to a specific prayer. I finally just said, “Lord, I am not going to ask you for circumstances, outcomes, or even “things” just that you would teach me how to be content regardless of what is happening around me. I do avoid stress as much as possible. But I don’t worry much anymore, and I don’t spend any time fretting or wondering about how others perceive me, my life, or my non-participation in lots of things. The one thing most capable of getting me flustered these days is having my husband get flustered, frustrated, or worried about anything. For the most part, my boys have grown to be pretty responsible, dependable, and see to themselves. I keep in touch with only one or two people on a regular basis, and the rest, well, I think of them, pray for them, might run into them on occasion, or they might take the initiative to bet in touch, but if they don’t then I just let it be.

I spent my life “going the extra mile” in all my relationships, and though it was grievous for me when I realized I no longer had the inner resources to live that way, I can rest knowing I did it when I was able. Though I cringe when asked “so, what do you do” by a new acquaintance, again, I know I gave my all and my best when I was a nurse, and I am very thankful for the years I was able to do it. When I sometimes feel lonely or like I’ve been forgotten, I remind myself I can still reach out from time to time, and when I feel like people might be judging me for not having a job, or not being at this or that function, or not volunteering, etc, I just am very thankful my husband understands, and that I do have a couple of folks in my life that I can speak very honestly about, to unburden my load. I keep a strict time limit on my occasional “pity party”, and for the most part, I don’t get stuck in that mode anyway. When I do, I usually figure out it’s one of a handful of things. I need a nap, that time of the month is approaching, I’ve let myself get dehydrated, or haven’t eaten, and sometimes I just need to get in the car and go for a drive or get out in the sunshine.