Regrouping

I have fibromyalgia. I know those from the old blog that followed me here will know that, but I will state it here again for the reference of others.

What is fibromyalgia? It is a debilitating chronic pain disease that affects the soft tissues of the body characteristic by widespread pain all over the body and a very heightened senses. Each person who has it manifests the long list of symptoms in different ways. Some hurt more, some hurt less, the sleep issue can be different, the triggers are different, the outcome is different. There is no one size fits all here, which makes it very difficult to diagnose and since they currently have no root cause, they can only treat the symptoms.

It won't kill me, but there is (currently) no cure. They are still trying to understand what actually causes it. A recent (about time) study did functional MRIs (fMRIs) on both people with fibro and a control group to try to better understand how the brain of a fibro patient works.

This is the study and the the summary of the study with a link to the full text journey article at the bottom: http://www.anapsid.org/cnd/diagnosis/brainpain.html.

I read this and want to yell 'Yes' and 'Duh' at the same time. Both for the revelation that it really isn't something we fibro patients make up, and also for the slight 'well I could have told you that we process everything more intensely'. The point is though that fibro acts upon my brain in a way that is different from those without this condition. And it has all sorts of strange affects on my life.

For example, it drives my husband nuts that a slight touch makes my skin itch and caressing gently my skin make me snap and brush his hand away. I can't handle the sensation. It makes me go crazy!

I am no longer a morning person. Okay, full confession, I never was. But for work I used to get up at 5:45 am and have a 30 minute workout, have a shower, get ready and go to work for 7:30-8:00 am.

Being at home with my daughter of course brings a different routine, but during the times when my husband is away and I am the one to get up with her, 7 am is painful. It takes me awhile to wake up, in part because I use a sleep mask to help me get a better sleep. It works wonderfully but it means that I haven't had that gradual increase of light that signals to the body it's time to get up and going for the day. I'm lethargic and it's best to leave me alone for the first 20 or 30 minutes after I get up. If I'm up around 8am feeling rested, it's a good start to the day.

I am extremely fortunate that am currently managing without medication. And while I could get my meds here for very little, I haven't reached that point that I need them. I think. It's a debate going on in my head actually and I'm not sure what will come if it. After all, I'm not opposed to medication, but it does limit me in some ways and I'm not sure I want to add that complication to my life right now.

I am in flare. Flare simply means a flare-up of (some) my symptoms. For perspective, at my worst pre-diagnoses back in 2006, walking 3 blocks left me utterly exhausted. I was diagnosed 1 month shy of my 23rd birthday. I slept whenever I could, even on bus rides to and from work and was always in pain.

Today the symptoms are much less severe, with aches and some acute pain in parts of my body I've overworked (most often my hands and wrists, and a general feeling of tiredness. Chronic pain breeds depression and I am always at risk for it. These days it is generally just a brief 'funk' I get where I am unmotivated and rather pessimistic. I can see it in the posts I write and also in the silence between them.

Hence why its been three weeks since my last post. I've had a lot of stress lately and my body has been saying 'hey! time to stop for a bit, to slow down'. I'm trying. But I am caring for a very opinionated toddler and frankly, it's wearing.

I don't have the reserves and resilience I used to, or that most people do. A cold can knock me on my butt for two weeks. Stress like we have right now (work visas and finances) has left me with spurts of motivation that I try to make the best of inevitably do too much and suffer afterwards.

Balance is tricky.

But I'm sorting it out. I know I can't stay in flare for too long or it really affects my family as well. I don't want that. One thing I've come to realize is that I might need to approach blogging in a different way. I only have so much time in a day and when I'm motivated to write, I could easily put up five ro six posts in a row and then nothing for 2 weeks. So I need to write them, and then schedule them to space them out. If I have stuff in between and feel motivated to write, I will.

So this is what I'm doing. I'm not sure how it'll go. It may not work, and if that's the case, I may have to accept that blogging may just not be for me anymore. There won't always be bad days, but the line between good ones and bad ones is so fine it's rather overwhelming. And scary.

I'm not as okay as I'd like to be. That's the truth. I could be doing better. Sometimes it's an awfully lonely feeling that is hard to articulate because you don't want to worry other people or endure lectures about being positive. I am an optimist, remember? I try. I'm not perfect. My brain also doesn't work the same way. Trying to convince me I should be more happy and carefree when I'm in flare is not only pointless, it's almost hurtful. Sometimes you just want someone to say, 'It's okay to be not be alright' and 'Everything will be okay.'

Though it's days like these that the old saying I used as a motto for awhile springs to mind: "Everything will be alright in the end; if it's not alright, it's not the end."

Duly noted...