The reality of fibromyalgia and other chronic pain conditions

Sometimes my body tells me not to do something, so I listen. But sometimes this is difficult... like when I am at the beach, with my grandsons, and the pain just hits me and I know I will be overdoing it just to drive home.

So what happens then?

My whole body, which only had minor aches and pains, goes into a three day flare. Most people do not understand this.

People with fibromyalgia understand that to just cope if we do one thing today we need to rest tomorrow. We are not lazy... we are living with an ongoing condition.

What comes to mind is a sick animal, licking it's wounds. In nature this is an accepted thing. We humans need to understand this too. We live, day in and day out with chronic illness. Fibromyalgia is enough but many of us also have other chronic pain conditions.

We need to look after ourselves and understand that many people, even the ones we live with, will just not ever understand. After all they cannot see the everything we feel on a daily basis. Fibromyalgia is after all a mostly invisible illness. Many illnesses are.

So what can we do?

Practice compassion for ourselves, look after ourselves, set boundaries and don't feel guilty on the days we need to recover to our normal. Also realise that our normal is us working hard... our bodies and brains are getting a constant workout. No wonder we are beyond tired!

So what can you do when you have to keep going in this world of people expecting us to be normal?

• Schedule rest days or if this is not possible rest hours.

• Stock the pantry and freezer with foods that everyone in your house can easily prepare.

• Turn off your phone.

• Put a do not disturb sign on the room of your door.

• If you have children create a backpack or box that only comes out on these special rest times, stocked with activities that your child can do on their own such as an age appropriate puzzle, art equipment, game, treat food and book. Tell the children that it is rest time and they can either have a nap or play quietly with these activities.

Create your own rest day kit: mine includes:

• a quiet clean room
• a good book
• a silk eye mask
• a note pad and pen
• a suduko book
• my favourite drinks
• tissues
• a comfy pillow
• soft pj's and an even softer blanket.

Create your own first aid kit: mine includes:

• a person I can ring or hug,
• some strong pain killers,
• a heat pack,
• a cold pack,
• some Rescue Remedy,
• Arnica cream for bumps and bruises
• a darkened room.

I would love to know what else you would put in your rest day or first aid kit? Please let me know in the comments.

Since writing this post I have created a toolkit of sorts inside an amazon store where I have listed many of the things that help me cope with fibromyalgia. Please visit my store here.