Tag: chronic fatigue syndrome

FMS | PainMaps.com: A New Nerve Pain Resource Site

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Image from PainMaps: http://www.painmaps.com/

If you are like me, then living in a world of pain is just part of the package of your existence.  Pain is pain, no matter how it manifests or what it is labeled: Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFIDS), Multiple Sclerosis (MS), Rheumatoid Arthritis (RA), Irritable Bowel Syndrome (IBS), Osteoarthritis, Neuropathic Pain, and Complex Regional Pain Syndrome (CRPS) as well as many others on the ever-growing list of syndromes and disorders.

I know first-hand that living with an invisible illness, which chronic pain of is, can mean being disregarded, misunderstood, or even blatantly being called a liar or crazy or whatever else makes someone else feel better for not being able or knowing how to help. This is one of the reasons why I shifted my blog’s focus to discussing living with FMS, because I understood that there were others going through similar experiences.

We, who are living with pain, need more community as well as resource outlets. This is why I was so glad when I received a message from Jessica Mendes, the founder of PainMaps.com, a resource site dedicated to providing resources for those who experience and those who want to understand chronic pain.

Mendes, who is a ghostwriter and intuitive translator, has been living with CRPS for many years, and began PainMaps as a way of providing outreach with an alternative touch; it’s about allowing ourselves to rethink how see, understand, approach, and care for pain, particularly (but not exclusively) in regards to CRPS, which is also known as Reflex Sympathetic Dystrophy (RSD).  It is a collaborative site that invites contributions for all those who would care to share their experiences and knowledge.

Harkening back to my Boston days, I’d have to say that I am wicked excited about this site, and hope you will be as well.

 Let’s build more community by venturing new paths! Visit PainMaps.com!

Until Next Time,

D.

[Reblog] WebMD Fibromyalgia Community: Short-Term Memory Problems

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WebMD Fibromyalgia Community: Short-Term Memory Problems

“One of the biggest challenges facing many people with fibromyalgia is — wait — what was I going to say?

Short-term memory problems can be embarrassing, frightening, and even dangerous for people with fibromyalgia. One community member asks for help as she’s noticed her memory deteriorating. “I have had two experiences in the last week where I couldn’t remember what the inside of my house looks like!” she laments.

A chorus of replies quickly tells her that she’s not alone…”

Expanding My Envelope: How I Balanced Work and CFIDS

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Expanding My Envelope: How I Balanced Work and CFIDS

Article on chronic fatigue syndrome and being an occupational therapist by  Kristin Scherger

‘I have faced many challenges in my seven years with CFS, but few have been as significant as the fight for my career. When I first became ill, I had just begun working as an occupational therapist, a field I had dreamed of entering since I was a girl. Fresh out of school, I had all the energy and motivation in the world. But a year later I came down with a late winter flu-like illness that I could not shake. Although I didn’t have a name for it at the time, I had begun my adventure with CFS.

My life with CFS was like riding on a roller coaster. When my symptoms were strong, I would lie at home in bed for days. When I felt better, I would drag myself to work for several weeks before collapsing again and returning to bed. I had always been able to push through other illness, but this time “pushing” only made things worse. The unimaginable had indeed occurred, and I was forced into facing the possibility of losing my career.’

What is left…

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Fibromyalgia Awareness

Fibromyalgia Awareness (Photo credit: Kindreds Page)

…after all has been stripped away?

More than two years ago, I began this blog at the urging of friends and former clients.  It has been a forum in which I have been able to explore both my personal and professional views on self-development.  More importantly, it has been a self-therapeutic process of addressing the significance of what it means to live with a chronic illness, especially as a counselor.

As indicated in my last posting, I have been dealing with an increase in my FMS symptoms, which has made my life more challenging than it has ever been.  Challenges, however, offer opportunities for self-growth, right?  Right.

If I were asked to write a list of all the “things” that fibromyalgia has taken away from me, it would be quite a long list. 😉  Having an “invisible” chronic illness, such as fibromyalgia or chronic fatigue, can mean the loss of sustainable livelihood, friendships, self-esteem, etc.  That is, it can mean the devastation of how one perceives of one’s self, i.e. self-concept.

English: Common signs and symptoms of fibromya...

English: Common signs and symptoms of fibromyalgia. (See Wikipedia:Fibromyalgia#Signs and symptoms). To discuss image, please see Template talk:Adult female diagrams References fibromyalgia-symptoms.org Retrieved on April 19, 2009 (Photo credit: Wikipedia)

Writing such a list, however, provides little benefit in learning how to take steps forward in the new life  that must be created as well as embraced.

Rather I would choose, and have chosen, to write a list of all the things that fibromyalgia has given to me, such as becoming more empathetic, more patient, more self-caring, more creative, more easy-going, simpler.

And ultimately, fibromyalgia has taught me how to ask for and receive help from others. 

The question that begins this posting is one that I have had to ask myself over the last seven years, and especially in the last several months. The answer that I can now give to myself is

“Hope.”

May is Fibromyalgia Awareness Month.  More specifically, May 12th is Fibromyalgia Awareness Day.  Personally, I am ecstatic that awareness of this illness is being spread, especially globally.  With this developing awareness comes a better sensitivity to the plight of those who are dealing with this chronic illness.  After all, there is a reason  fibromyalgia is known as the “invisible illness.”

Thank you again to those of you who continued to visit my blog even though I have not posted in some time.

Until Next Time!

D.

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