Sunday, October 17, 2010

Acronyms and Acrimony

Fair warning: complaining follows, some of which you may have heard before. Feel free to skip along until I come up with something more entertaining next time.

Those of you who have been reading my blog for a while know that I get "sick" fairly often and stay "sick" sometimes for weeks, yet no medical professional has ever figured out what's wrong with me. "Sick" in my case does not mean sneezing and coughing. It means aches, pains, significant fatigue, whacked out body temperature (sometimes too high, sometimes too low), and occasionally random outbreaks of hives.

No one ever catches these symptoms from me. Apparently I'm not contagious. And doctors have tested for every long-term trick in the book (Lupus, rheumatoid arthritis, Lyme disease, etc.) without getting a positive test results. The only measurable fact is that I have higher-than-normal levels of auto-immune disfunction markers (anti-nucleic antibodies). The only thing that truly helps is for me to limit my activity, get lots of sleep, take my vitamins every day, and don't take on extra stress if I can help it.

Of course I'm mentioning all this because it's back again. Every year, predictably, when the cold weather arrives, I am filled with aches and pains like an old lady. It's been around two weeks now since I've been nursing painful muscle spasms and stiffness in my joints. I have given up on going to the doctor. All he does is run useless tests on me that waste my time and energy when I'm already feeling low. The best thing I can do is to pace myself, and eventually it will ease off again, like it always does.

Having done some reading on Chronic Fatigue Syndrome and Fibromyalgia, I have decided to diagnose myself with mild versions of these related conditions. I certainly don't have the full-blown, completely disabling diseases that keep people in bed for months or years and prevent them from working. (OK, so I was off work with debilitating fatigue over the summer, but it only lasted for 2 weeks, which is not long relatively speaking.) But other than the severity, the general descriptions of these diseases match my experience.

One thing that stands out to me is that CFS and FM (which frequently manifest together as a lovely 2-for-1 symptom package) have both been shown to be related to Post Traumatic Stress Disorder, especially from chronic stress experienced in childhood. I guarantee you, I had a chronically stressful childhood. In brief: constant fighting in my house; being bullied and socially ostracized at school; and generally being painfully shy and agonizingly lonely and afraid 95% of the time. My doctor knows this, and although he hasn't diagnosed me with FM or CFS officially, he has definitely said many times that he feels I suffer from PTSD. Frankly, I'm grateful that my symptoms aren't bad or persistent enough to merit the official diagnoses.

Why am I bringing this up today? Well, besides having lived with almost constant shooting pains in my back for the past two weeks, and feeling so tired 6 hours into my 8 hour workday that I don't know how I can continue to think productively... (My eyes actually get so tired that I can barely read what's on my computer monitor. Blurry vision when tired is one common symptom of CFS.)... besides all that, I've just gotten to the point where I have changed how I think about my health.

I no longer feel that I'm a healthy person who occasionally gets sick and then gets well again. I feel that I'm a person with a chronic disease that's always hovering in the background ready to strike. It's such a frequent factor in my life that I'm starting to think of my good days as "being in remission". You may think that this is a negative state of mind, but to me it's just realistic. If I think of myself as in remission rather than as 100% well, I'm less likely to push myself past my limits and trigger a full-on relapse. The older I get, the more restricted those limits are.

Fortunately, I was never an outdoorsy type who will miss water-skiing or extreme camping. I have always been happy to settle down with a book or a good documentary. My favourite activities include hanging out with friends to talk and laugh; writing; listening to music; and taking reasonably-paced walks. All of these activities are well within my comfort zone, except when I'm in a really low spot and walking may become limited for a while.

Sometimes I miss being able to stay out late, because social activities after 10pm are the most adventurous, but I have to limit those nights or pay the price for at least a week afterwards. I definitely feel that I made the right decision in not becoming a parent, that's for sure. My life as it is is usually manageable. Any more stress than I currently have would probably tip the balance and I could become seriously disabled.

The truth is, I feel that I have an invisible disability. People can't tell from looking at me that there's anything wrong with me, unless I'm literally dragging my feet on the floor from fatigue. But it's something that limits my life, affects every choice I make with regards to how I spend my time, puts me through long stretches of pain and fatigue, and has shaped my identity permanently in many ways. My step-dad says "I've watched you struggle valiantly with it your whole life." Bless his heart, he listens when I need to vent.

So that's what's on my mind lately. I had to get it off my chest.


LL Cool Joe said...

That sounds depressing. I haven't been feeling great recently and it's been limiting the things I normally do. I beginning to have to look after myself and that's horrible.

I'm really sorry you are going through this, and hope that maybe you'll recover fully over a period of time.

Sparkling Red said...

Being limited is difficult to accept. I hope that your situation is temporary, and that it passes quickly.

For myself, I actually feel liberated by my change of perspective. When I was fluctuating between thinking of myself as sick vs. well I got upset and depressed every time I got sick again. Accepting it as a chronic condition allows me to relax and accept my situation without wasting energy on fighting what is. Sure, maybe in time I'll get past it, like how I had IBS for 20 years (since I was a little kid) and eventually it went away. But in the meantime I'm going to just go with the flow and take care of myself instead of fighting every relapse.

Jameil said...

I wish there was some way to find out what you really have so at the very least you can make it more manageable. I want you to get more enjoyment out of life. I know you're not exactly hating life, but it could certainly be more enjoyable. I don't think it sounds negative at all. The readjustment of your idea of yourself sounds freeing. Is there a way you can program your day to include breaks near your tiredness.

Sparkling Red said...

Thanks for your good wishes. The fact of it is that even if I were to get an official diagnosis on one or both of these conditions, there aren't many medications that can help much. And considering that I am Side Effects Girl, I probably wouldn't want to take medication even if it was offered to me. Usually the side effects are worse than the symptoms I had in the first place, for any type of pills. From what I understand, it has to do with the body overproducing cortisol for many years due to all the stress, and then you lose your ability to manufacture natural cortisol. Cortisol is an anti-inflammatory, so the symptoms manifest in various types of inflammation: hives, muscle and joint pain, and/or tummy pains, and/or a feeling of fullness in the lungs and/or palpitations. The symptoms have no rhyme or reason. They seem to occur almost randomly.

Er, what was my point? Yes, I will be monitoring my schedule, both daily and weekly, to make sure I give myself a chance to catch my breath between various challenges and excitements. I've been doing alright at that, and I can probably even do a little better.

DarcKnyt said...

I live with asthma, and now, lower back pain, and yes, they are both disabilities in some ways. Not like being wheelchair bound, but certainly limiting.

Therefore, I completely empathize with you on this.

Oh, btw -- your blog is a place for you to vent. So vent. No disclaimer necessary. It's YOUR blog. :)

I'll say a prayer or two for you sweetie.

G said...

I understand and sympathize what you're going through as of late. I have a neuro-muscular disease that decided to settle in my hands which makes doing my day-to-day activities a pain in the major butt.

Additionally, and this where it gets to be a pain, I also have muscle weakness and neuropathy inj legs, which usually makes me unable to sit longer than ten to fiteen minutes at a clip.

Having fibro can be extremely difficult because like you said, it's quite difficult for people to see what is really wrong because the symptoms don't manifest themselves visually.

When they hear someone say that they're in constant pain and yet they don't see any visual symptons, it does have a tendency to be dismissed as psychosomatic (I speak from experience with my disease, which is officially called Charcot-Marie-Tooth disease)

I'm sure that you'll be able to do the things that you enjoy doing, once you modify the way you do the things to begin with. For me it was teaching myself how to write again and how to grip things a certain way and even using something as simple as a rubber fingertip.

Juniper said...

Like what DarcKnyt said - what is your blog for if not to get things off your chest! Especially if it helps you.

Changing how you look at things can certainly help, getting a different perspective on it. As you say, you're being realistic not pessimistic.

I hope that you can get things more manageable... and vent anytime, your blogger friends are here to listen!


Warped Mind of Ron said...

I shall continue to hope that some brilliant doctor will find out what you have and it's easily fixed with a drug that has zero side effects and you react wonderfully to it!!!

If that doesn't happen well I hope you find a way to work through it all. After all a prescription of naps doesn't sound that bad to me :-)

Take care young lady

DarcsFalcon said...

I remember CFS. It was big in the news around the same time as the Epstein-Barr thing. I know that there were cases of EB that were incorrectly diagnosed as CFS, because the symptoms are similar.

And I know that EB can sometimes cause anemia.

Here's a link if you're interested.

In a way I don't blame you one little bit for not wanting to subject yourself to more inconclusive tests. No one wants to live their life as a guinea pig. I'll pray for good health for you hon. Living with chronic illness or pain is not what life should be about.

Just Plain Tired said...

You have my sympathy. I'm lucky to be healthy, despite my efforts and life style to the contrary. (I smoke, eat crap... well not literally, sleep too little, etc...) Hopefully you're feeling better as quickly as possible.

Jenski said...

Sounds like a good perspective to have so you can take care of yourself better. And what a wonderfully supportive thing for you step-dad to say! My mom has MS and that's another where you don't *look* sick, so it is good that people around you know what you are going through!

Sparkling Red said...

DarcKnyt: While I wish you didn't have to deal with those ailments, it's good to know that you can relate. Being under the weather can feel very lonely at times.

G: That must be very frustrating. At least my condition allows me good days when I can forget about identifying as an unwell person and just go about my business. Those are some serious obstacles that you face every day.

Juniper: Thanks! I usually cope by minimizing my feelings about the issue, but every once in a while it all adds up and I need a shoulder to cry on.

Ron: I do love my naps. :-)

DarcsFalcon: I can't remember if I've ever been tested for the EB virus. I don't recall ever having had mono, and the symptoms I've had have not included sore throat or swollen glands. But you never know. Viruses manifest different ways in different people.

JPT: Well, except for being tired, right? ;-)

Jenski: The irony is that he was a totally different person when he was younger, so he contributed lots to my chronic childhood stress... but that's life, isn't it? ;-) It comes full circle in funny ways.

Kate said...

I had chronic sinus infections for about two years after I got sober. Once I changed my thinking to one like yours, "I have an illness. If I act accordingly, I will go into remission." I got better not only faster, but there were longer spells inbetween times of sickness. I keep this attitude at the forefront of my mind most all of the time and knock on wood, have not been sick but once this past year. It feels like a miracle, but I know it's because I changed the way I thought about it.

I think you are onto something that will help you in the long run.

Karen said...

Feel better Mama! I know about feeling out of control of my health and it sucks.

Anonymous said...

You just need a good dose of some of Mary Brown's famous fried chicken and taters. That cures all ills.

Sparkling Red said...

Kate: Thanks! That is very comforting to hear.

Karen: It totally sucks. I just try to remember that it could be a lot worse.

wigsf: :-p One man's medicine is another woman's poison!

Lynn said...

Golly - that must be awful to go through! And I think your blog friends are good people to vent to.