Living with Fibromyalgia.. my reality

Do you know someone with Fibromyalgia?  Or perhaps you are living with it yourself.  Read Larene’s personal insight into this terrible and chronic disease. 

What is Fibromyalgia?

Fibromyalgia is an incurable chronic pain disease. It is a neurobiological condition that produces physiological pain and cognitive impairments, as well as many other disabling symptoms.

To live with Fibromyalgia means we need for our family and friends to be our rock, and often our maids, cleaners and cooks too. To live with Fibromyalgia means our world is imploding. The less we are capable of doing the more we love our family and friends for being part of our world, being there when we need them.

Every day we wake with difficulty, exhausted from painful and often broken sleep or insomnia, with flu-like symptoms, excruciating muscle pain, loss of feeling, clumsiness, stabbing pain, dizziness that sets in the minute we sit up, and the fibro fog that kicks in, leading to forgetfulness and migraines.

As the day progresses we have numerous nanny naps to relieve the headaches, pain in our neck, shoulders, back, stomach, hips and legs. Each day is an ongoing exhaustion, fatigue, fire burning sensation. Socially, we are no longer able to commit to anything. We feel a very real disappointment of not knowing if we can depend on ourselves, let alone be dependable to others. Grace and dignity deteriorate with the pain and emotional stress of the condition.

Who does Fibromyalgia impact?

It seems that women are more likely to be the lucky ones to feel the impact of Fibromyalgia, although some men do too. History leans towards Fibromyalgia entering our lives generally around the middle years, but more frequently for those entering their 60’s. Few discover they have this chronic disease much younger, and may have had it from childhood.

How does Fibromyalgia make us feel?

The level of pain from Fibromyalgia affects us in a way that some have described as: a searing pain, 100 times worse than giving birth, being hit by a ‘Mack Truck’ (any make or model), or having our limbs and trunks of our bodies constantly on fire. The pain massively restricts our movements during the day and continually wakes us from sleep. Continual pain is exhausting. Medications designed to seduce and sedate the pain day and night have side effects and fight both among themselves and with our bodies.

Where do we feel this invisible disease?

The pain impacts us all over our bodies. We walk bent over and crooked. We tire easily. We cry and silently scream for relief. We sit, we sleep, we pain, never wanting to get up off our chair or beds. The daily pain that we endure is often beyond our capacity to tolerate, yet we do and tomorrow is always another day.

When is a good day?

We do have good days where the pain is not quite as intense, although it is never completely gone. It is on these good days that we either push ourselves or those around us also push us to do just a little bit more or go just a little bit faster, all of which increases the pain levels and extends the number of days or weeks of suffering afterwards.

We have our bad days too and they generally outweigh the good days 7:1. On a bad day, we can’t lift our heads from the pillow or get up out of a chair. We can’t go shopping, prepare a meal, lift a bottle of milk, or pick up a grocery item.

Why do we challenge our invisible illness each day?

The greatest challenge with Fibromyalgia is finding people who understand what we feel. We often ask family, partners and friends to understand this invisible chronic pain disease and how we feel. Empathy and support is our need.

Employment shrinks from full time to part-time until eventually you are told ‘no more work’. Fibromyalgia removes our ability to stand in the kitchen long enough to cook cakes, play ball with the grand-kids, hike bush trails, cope with general housework or even go shopping at the local shopping centre.

Some say family have forgotten them and that contact has been lost or they have lost their partners once Fibromyalgia kicks in. Some say their friends have all disappeared because they can’t keep pace with their friends anymore.

To live with Fibromyalgia, life revolves around your health and some feel as though they lose themselves, their mind and their life. An understanding companion or carer is high on the list of priorities, but above that is an even higher and more desperate need. This is a need for relief from the chronic pain and wishful thinking that we might get back to living as close as possible, to a normal life again.

Tomorrow is another day.

Image: axiomphotog