What does chronic illness look like?

Since being diagnosed with fibromyalgia, I've had to make some adjustments in my life. Some of these adjustments have been good, like getting medication so I'm not in pain all the time. Other adjustments have been more of a challenge.

The biggest challenge I've faced so far is adjusting how I see myself now that I'm labelled as someone with a chronic illness.

Fibromyalgia is a lifelong diagnosis. I will always have it, I will always combat pain and its other symptoms. And it may get worse as I get older.

Because of this illness, there are things I have to do differently in my life. For now (maybe not forever), I'm giving up the idea of being able to run a marathon. Or run at all, for that matter. My exercise has to be more gentle to my body.

I'm also adjusting my daily schedule to accommodate my fatigue. I'm becoming a polyphasic sleeper (not to take advantage of the benefits, but simply because that seems to be what's easiest for my body and work/family schedule).

Right now, I'm trying to find a balance between the diagnosis and the identity. Yes, I have fibromyalgia, but I am not fibromyalgia.

One of the ways I'm doing this is by reading Toni Bernhard's How to Be Sick. So far I like her approach to chronic illness.

There is illness here, but I am not ill.

This approach is allowing me to make accommodations for the illness without letting myself get pulled into a black hole of "I can't because fibromyalgia."

I am tired and I hurt. But I still work and I still care for my family and I still do the things I need to do in order to be the woman I want to be.

It's still a process. There are days I let the fibromyalgia keep me from doing what I need to do.

There are days it has to.

When those days happen, I do what I can and try again tomorrow.

I have fibromyalgia, but I am not fibromyalgia.

Coffee-stained health

Some of you may already know that I've been having some health problems lately.

In addition to the diagnosis of rosacea, I've been dealing with a great deal of pain and fatigue that has been increasing for the last couple of years. So I got a referral from my primary care physician to go to a rheumatologist.

I saw the rheumatologist a couple of weeks ago, and he diagnosed me with fibromyalgia. His exact words were, "Well, you definitely have fibromyalgia."

Okay, then.

In addition, he thinks I also have some kind of autoimmune condition "in the lupus family." So he ordered a lot of blood work to try and determine what else, if anything, I have. Once we know what's going on, we can develop a treatment plan that helps deal with all of my symptoms. The blood work is done and I'll get the results at my follow up appointment in a couple of weeks.

If I warn you that my veins roll, it's for a reason.
This is that reason.

The experience was not exactly pleasant. I don't like getting blood drawn. I always warn whoever is drawing my blood that my veins roll and they have to be anchored. I always bruise. Sometimes (like this last time) very badly. But if it helps get answers, it's worth it in the end.

It was abrupt, this change from "something's wrong" to "chronic illness."

In the progression of what I've been experiencing, along with comments from my primary care doctor, I had a pretty good idea of what's been going on. But hearing the words made it real. I know that I'm going to have to deal with this for the rest of my life.

There is a mental and emotional shift. There are things I just can't do anymore, and things I won't be able to do when I'm in a flare (like right now). The past few week it has been hard to accept that the reason I can't do these things is because of my body, not because of my personality. There are things that I can't change, and instead of beating myself up and getting angry because I can't do certain things, I am having to create and adapt to my new normal.

It's going to be a process. And in the meantime, I'm doing what I can.