A Brief Note on Fighting Flare Ups

It can be handy to have an unreliable memory. I forget just how bad it can get when I have a flare up.

This morning, I woke up after a night of extremely restless sleep (after a string of similar nights) with very tight muscles in my neck and upper back, the pressure wrenching my trigger points tighter. I felt on the verge of vomiting all morning.

But instead of getting lost in the pain, today I was able to put small coping mechanisms into place.

I thought I would share them just in case others fall into a quiet panic when they flare up too.

The first thing I did was take appropriate medicine. Unfortunately I did force myself to go to work because I had an important workshop. When I found that it had been cancelled I took the opportunity to go home. It was a good call.

The second thing I did was lie down with my heat pack with my legs up on the couch in half legs on the chair pose.

After that I went to bed and did a 20 minute Yoga Nidra meditation sequence. Then I felt ready to quietly continue my day, still in a lot of pain but able to cope.

I’m so grateful that I have these mechanisms in place, so that I know what to do when I get so sore that I could fall down and not get up.

Opportunities to give up when you have Fibromyalgia come often, but with them opportunities to fight arise also.

Tensions, Accepting Life as it is

The tension of chronic illness, aside from any symptoms, is the desire to fight it and the need to accept it.

I’ve been reading Simply Tuesday: Small-Moment Living in a Fast-Moving World by Emily P. Freeman.

It has been a breath of fresh air.

Freeman speaks of fighting the city builder within and nurturing the bench sitter instead. The bench sitter is the one who sits in the moment. Who sits with others in their moments, a witness, not a fixer. Who allows themselves to process their own moments.

Frequently I’ve had to combat my runaway desire for achievement, to reorient myself to what success means for me.

More recently my challenge is to accept things as they are. Accept my body as and where it is. Accept the day as it is. Not to stress over it.

The yoga instructor who helped me to create a sequence reminded me of it, accept your body where it is. (Not where it used to be).

I’ve been trying to take stock of my actions and reactions. Just notice.

And to increase my time to relax and release.

No Tiny Mission here, just an attitude adjustment and a commitment to take all practicable steps to reduce stress in my life. And to try to be more accepting.

Serenity, Or We’ll Be OK

One of the hardest things about living with fibro and chronic fatigue syndrome is the unpredictability.

You can have a day where you slept nine hours the night before (with only one interruption by the baby), did the right exercise the day before, take your supplements (D-Ribose and magnesium), do a 40 minute meditation – in other words do everything right – and still end up with a sudden increase in fatigue. The afternoon drags on. The shower is tiring.

When your energy is used up, think zero spoons, and the baby still needs feeding and cuddling and putting to bed you still, somehow, have brain power to worry about what tomorrow will be like.

You have to surrender.

You have to go with the flow.

That’s hard for someone who feels more comfortable in control. It’s hard to accept that you can’t plan your way out of it.

All there is to do is get on with it the best you can and HOPE tomorrow will be better. Be secure in the knowledge that you have made your life better on the whole, you can handle one or two bad days. And those one or two bad days don’t mean anything other than a slight wobble.

The Serenity Prayer has been helping me:

“God grant me the serenity to accept the things I cannot change; courage to change the things I can; and the wisdom to know the difference.

Living one day at a time; enjoying one moment at a time; accepting hardships as the pathway to peace; taking, as He did, this sinful world as it is, not as I would have it; trusting that He will make all things right if I surrender to His will; so that I may be reasonably happy in this life and supremely happy with Him forever and ever in the next. Amen”

This brings me some comfort. I haven’t yet reconciled myself to my beliefs and the fact that I have prayed so desperately for healing, and not yet received it. But then I haven’t figured out many things.

So for today, I hope this brings someone comfort. That they may remember these words when they are gripped by a flare up. Or even just in daily life.

Acceptance, Kinda?

When you have fibromyalgia or any ongoing illness, the grieving process doesn’t really end.

I came to a sense of acceptance years ago and have simultaneously mustered a sense of reality with a huge sense of hope. 

I believe that how I live can help me significantly. But I know that even having eight hours in bed, I will not feel rested. That even when only working five hours, my neck will still hurt so much that I wake frequently, changing pillows in an effort to be comfortable.

In the beginning I soldiered through because no one had any sense of what may be wrong with me, other than the physical practitioners I tried who saw my regularly tightly coiled muscles. That either didn’t respond to treatment or only had a brief, slight window of relief.

By the time I moved to Auckland with my family for a new beginning four years ago, I was at the end of my tether. Every day was a battle. I was hanging on by a thread. I coped til 8am waiting for the painkiller, I then til 10 waiting for coffee, then til 12 for lunch break. After that it was 3pm for an energy drink, to try to combat my heavy eyelids, and 5 for home time. It was nasty. I wasn’t alive. I was coping.

Since then I’ve come leaps and bounds. But that black cloud hovers.

It swooped upon me this week.

I wish I did have the energy to work and really help with our mortgage, and still have the energy for baby and then more still for exercise and other parts of life.

Three hours of work last week has stirred up my neck. And it’s hit me again what I must cope with in order to live.

I’ll need to continually walk the tightrope in order to balance work with my baby with everything else. I’ll have to find the new level of pain I can cope with, the trade off for financial stability.

It makes me sad. As I sit here with a sore neck and a gorgeous baby whose energy levels already outweigh mine.

It would help if my family got it. But people without these issues can’t “get” it. And there are those that want to understand and those that don’t.

I am fighting for myself. I will try hard to find my balance. It’s just hard to fight the people around me in addition to the fibromyalgia and myself, because there is no one more disappointed than me.