Friday, September 14, 2007

So you know what I should do more of?

Tell people to come back for exciting posts and then never post anything at all.

Doesn't that sound like a fabulous idea?

(This would be a good place for some smilies, but I have no idea how to incorporate those into my site, so you're just going to have to picture me giving myself a big dope slap.)

However, if you wanted to know a little bit about having a chronic illness, it is worthwhile to note that they are totally un-fricken-predictable. But, in lieu of excuses, which just generally suck anyways, I'm going to get right to the point:

Hi, my name (here) is NTE: I have chronic illnesses: They suck.

Because it seems like only half of you can even see my task bar (I don't know why... any ideas on that would be most welcome), and that means you can't click on the nice little health round-up I've got there for you, I'm just going to fill in the basics.

Again. (So all of you regular readers might want to zoom right past this - I won't be offended: I'd rather skip over it myself.)

Here is my current list of diagnoses:

Postural Orthostatic Tachycardia Syndrome POTS - Which is basically a failure in the regulation of my blood pressure, heart rate and blood flow when in an upright position. Currently semi-under control - which means that I no longer pass out any time I dare to go from a flat position to an inclined position, but I still can't stand unassisted (unless I'd like to add to the collection of bumps & bruises I've currently got) or sit for longer periods of time without feeling quite ill.

Fibromyalgia or FM/FMS - This is where the pain comes in people. And holy lord does it bring the pain. Fibromyalgia is either - depending upon who you ask - a completely useless, catch-all term for pain that doctors don't understand the nature or progression of OR a medically recognized rheumatic disorder of indiscriminate origin with very few treatment options and no known cure. Either way, you're pretty much screwed.
There's much discussion over whether or not the diagnosis of FM for chronic, unexplained pain has - like the over diagnosis of ADD & ADHD in children in the past 15 years - just become a way to group people whose pain doctors just don't understand yet, and what that's doing for those of us who are suffering, but I'm not going to get into that right now.
For right now, let me just say that FM is about pain - in specific & laughingly labelled 'tender' points on your body, as well as a general, all over 'achiness' - This is often described in terms of the feeling you get when you have the flu, but I think it would be more accurately described as the feeling you get when you have the flu, but have also just run a marathon, during which you gave birth and were hit by a bus. That's the gist of the everyday, all over 'achiness' I feel. It's a constant weight & heaviness, like a coat made of pain, that you wear all the time, everyday. As you can imagine, wearing this coat also wears you out. There are a ton of other symptoms related to FM (and CFIDS), but for me, it's all about the pain.
My FM is, right now, the thing that I am most concerned about - often I feel like if I could just slip out of this coat, just for a little while, then a lot of my other issues would be much more manageable.

CFIDS/CFS, Chronic Fatigue Immune Deficiency Syndrome and/or (- although I know that there is now a big discrepancy between what I have been told and what the medical & patient communities now believe to be true, I'm going to go with the labels I have been given over the past 13 years and try to steer clear (for now) of the Name Controversy) - Myalgic Encephalomyelitis, ME - This was my first diagnosis, and, like FM, it is both controversial and a sort of catch all, only this time for unexplainable fatigue. The major symptom I've experienced with my ME/CFIDS is overwhelming, unwavering fatigue _ which, at some point, I've just gotten used to. It hasn't gone away, I've just become accustomed to it as my partner in life. We make allowances for each other. Say I want to go to my grandmother's birthday party; the fatigue says, "Ok, rest up for two weeks. And then for three weeks afterwards, we'll stay in bed. ALL THE TIME." It's not quite as accomodating as I might like, but what are you gonna do?
I've also suffered from stomach issues that are most likely related to the ME/CFIDS, as well as cognitive difficulties, sensitivities to smells, noises, tastes, and sounds, and the severe sleep cycle disturbances that are so commonly associated with this disease: Example - when I first got sick I slept for 18-20 hours a day. For months at a time. And now? I'm lucky to get 18- 20 minutes in a row. Ah, the joys of cyclic illnesses.

Hypogammaglobulinemia - an immune disorder that basically means my immune system is unable to ferret out and attack invader cells. It's an antibody deficiency, and it makes itself known with recurrent and serious infections. A mostly healthy person who is 28 will, generally, not have had pneumonia more than once. Will, most likely not get 12 sinus infections in one year. Will be able to fight off colds and not develop odd rashes from random bacteria. That is not me. I am the one who, when you sneeze three aisles down in the store, thinks "Damn... I better not catch that." This is a treatable condition, thankfully, but the treatments only semi-work for me, so far. My body doesn't feel like producing the antibodies, and so chooses not to. I'm stubborn, even on a cellular level, I guess.

And the interrelatedness of all of my illnesses cannot be overlooked - CFIDS/ME is often connected to orthostatic intolerance issues, like POTS. FM and CFIDS/ME are rarely spoken of without each other, their symptoms overlap and twist and tangle into unbreakable knots. Hypogammaglobunemia and ME/CFIDS share many characteristics. The fact that the doctors often don't know what is making one symptom occur - and that I can't just say, "oh, well, that's definitely the CFIDS/ME that's causing that" - makes treatment options much more difficult.

And, most importantly of all, to me - none of them have a known cause or cure.

I also have two more 'normal' - and definitely more common - invisible illnesses - Asthma and Migraines. Neither of those is visible, and yet they're much more accepted (both in the public and within the medical community), and much better understood than the other diseases I have. Having these illnesses makes it all the more difficult for me to understand the whole "but you don't look sick" mentality.

A person who has asthma doesn't look sick, generally: but they are. Migraines aren't visible to anyone else, but I haven't run into any doctors who doubt that they're a very real and debilitating disease. Pain, because it's so personal, because it's so subjective and hard to describe, seems less valid a symptom to many medical professionals and people I meet in the course of my everyday life. The same with fatigue. And with both of these issues, people's own experiences color their impressions of these diseases. Everyone in the world has felt pain before, everybody thinks "Oh, my back has been killing me for weeks," or "I've been that exhausted before, you just have to sleep it off." But that's not the way CFIDS/ME works, and FM isn't a pulled muscle.

There's a handy-dandy round-up of my major illnesses and diagnoses. (We'll leave the minor ones for now, thank you very much.) Hopefully this will help as I talk a little bit more about what it means to have an invisible chronic illness (even when it's not so invisible anymore).

Thanks, if you managed to wade your way through all of that! Happy Friday everybody!

1 comment:

Anonymous said...

Here's helpful information for all fibromyalgia sufferers.

Fibromyalgia is a condition where you feel chronic pain in certain parts of your body; it is a muscular pain especially around the joints. There can also be centralized pain felt in the spinal chord, brain, neck shoulders etc. People with fibromyalgia generally complain of pain in the joints, but it actually is the muscles and the tendons around it that cause the pain, it can be excruciating sometimes and can be a continuous throbbing pain. People suffering from Fibromyalgia also show symptoms of depression, sleeplessness, irritable bowel syndrome, stress and many others, which are caused due to the pain.

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We must know the symptoms of this illness. For us to know what would be the approach we will going to apply. Here's Signs and Symptoms of Fibromyalgia and steps to treat it naturally.

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If we say Fibromyalgia Diet, there is no specific recommended diet for fibromyalgia. But a healthy diet rich in vitamins and minerals can certainly help in coping with the illness. Magnesium rich vegetables are recommended for patient's suffering from fibromyalgia. Here's some information for you to help in Fibromyalgia Diet.

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Here's Rid Fibromyalgia, For free info and helpful articles on fighting fibromyalgia.