Tuesday, July 28, 2009

A Good Point About My Symptoms

A new person visited my blog the other day and posted the following comment which made a good point:

Hi! I've been reading random blogs lately and I had a question about your symptoms that you list at the end of entries. This one, for example: Exhaustion, mild headache, profuse sweating, eczema. NOT to imply that those aren't hard to deal with, but do you have other symptoms that you do not list because it would be too many? Or is "that all"? I put quotations because online that could really come across the wrong way and that's not what I mean. Thank you. =) ~fellow chronic illness sufferer

Here is the response I gave:

Thanks for the comment. You bring up a good point. You're right. Those aren't ALL my symptoms; they're just the ones that are annoying me the most at the time of my post.

In addition to the ones that I've listed, I also constantly deal with all the symptoms related to all my other conditions like asthma, severe allergies, insomnia, irritable bowel syndrome, sores in my mouth, fungal infections, and of course all the other symptoms that are more directly associated with CFS (like mental fog, impaired memory, tinnitus, sensitivity to temperature, sensitivity to light and sound, dizziness, nausea, muscle twitching, and unrelenting fatigue).

I suppose I've just gotten used to being sick all the time, that I sometimes "forget" all the symptoms that I am actually dealing with on a daily basis. You can learn much more about all my health issues by reading my May 2009 entries.

Thank you for helping me realize that some people who don't understand what it's like to live with chronic illness might see my daily listed symptoms and think they're "no big deal." I will try to be clearer from now on.

Another blogger with CFS responded with:

It's amazing how many symptoms we have that we don't even think about anymore because they are like the soundtrack to our lives...

It makes me so sad to think of the things we've lost...but on the other hand I think life doesn't turn out as planned for a lot of people.

However, when I contrast my obstacles/challenges with chronic illness to the challenges of most my peers, I would trade the chronic illness in any day!

I concur. It is amazing how many symptoms I don't even think about anymore. They are indeed "the soundtrack" to my life. Today I was hyperaware of my "soundtrack" symptoms and noticed a few more that I take for granted, so to speak.

I experience severe muscle fatigue every time I go up or down a set of stairs. My heart will be pounding by the time I make it to the top (or bottom), and I am always out of breath after a climb. Skin from all over my body constantly flakes off my arms, legs, and head in a light, but noticeable dandruff. This is especially noticeable when I wear black clothes. It can be embarrassing.

My hands show visible signs of eczema, with pitting covering my right thumb nail. I have additional eczema spots on other parts of my body (especially my legs), but none are as annoying as the one on my right ankle. If you've never had eczema, just imagine intense itching that is always present. Medications can treat acute flare ups, but they almost always come back and there are always new flare ups in new places. Because my skin often does not heal well, I have scars all over my legs from eczema flare ups that I scratched (and made bleed) one too many times.

Though I am on a moderately high dose of daily asthma medication (Advair 250/50), I still have regular asthma attacks. They are quite exhausting.

I usually have some sort of pain somewhere in my body at any given time. For me the most annoying pain is a headache, but I also get traveling pain through my arms and legs. As a result of IBS, intestinal pain is a common companion. I also regularly run low-grade fevers.

The symptoms that have robbed me of my 20's and starting to steal my 30's is the post exertional malaise and unrelenting fatigue. These two seemingly innocuous symptoms are what keep me from having much of a life. They are the symptoms that challenge and frustrate me the most.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, mild headache, active eczema on right ankle.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 3

3 comments:

Jessica said...

Hey Alyson! It seems like with every post I'm nodding my head in agreement. If I were to post all my symptoms, it would take up a page. The worst are the headaches and horrible pains in my face and behind my ear. They are truly disabling because the only way to get them to go away is to lie down in a dark, quiet room.

Your kitty is adorable! I have three and can have that many only because my mother takes care of the litter boxes and vet trips (which lately have been many.) I would be much more depressed if I didn't have a pet. I'm jealous that your cat plays fetch! Mine are too old to be interested in toys anymore. But they are great cuddlers.

Jo said...

I'm sorry to hear how much you deal with on a daily basis.

I'm revisiting my own symptoms diary to see if it is a true reflection. Thanks for the post.

alyson said...

Thanks for the comments, Jessica and Jo! For some reason, I find comments invigorating.

Sadly, Callie has recently not been interested in playing fetch... Ah, well, at least she's still cute.

Jo, did you find that your actual symptoms and symptom diary match up?