But what happens when someone has a chronic illness, like fibromyalgia or chronic fatigue syndrome? When they’re not always in-your-face ill, but they have times when they feel desperately ill or just too ill to face the world?

Since it’s a chronic illness that can literally last a lifetime, what is a well-meaning friend to do?

There’s a great post over at But You Don’t Look Sick. The post offers 36 Easy things that you can do to make the life of your chronically ill friend a bit better .

There are some great suggestions and hopefully you may find something that you feel fits you and your friend just right.

~~~~

Images: Stockxchnge.com

Post from: Blisstree

Helping a Friend With a Chronic Illness

Fibromyalgia is one of those hidden diseases that is still very much a disease that’s fighting to be recognized (Fibromyalgia debate continues ), which adds to the difficulties faced by those who live with it. They know it’s real – they have to live with its effects on a daily basis.

According to the National Fibromyalgia Association :

In 1993, May 12 was designated as the International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) by Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases), to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale contracted a paralyzing, CIND-like illness in her mid-thirties and spent the last 50 years of her life virtually bedridden. Despite her illness, she managed to found the world’s first School of Nursing.

The National Fibromyalgia Association (NFA) joined the Awareness Day effort in 1997 and has led the call for increased recognition of fibromyalgia each May 12.

When different causes have national days or weeks, or even months, I’ve heard people say, “what’s the point?” And, while I can see how it can get tiresome seeming to always have a cause of the day/week/month, this is often the only way to get people to understand, to recognize, the existence of these issues.

Fibromyalgia is a complex disorder that has a range of symptoms, from fatigue to pain and more. It affects both men and women, but women with fibro outnumber men by far.

After many years of doctors not understanding what fibro was, diagnostic criteria was determined by the American College of Rheumatology (ACR) in 1990.

The vague nature of the complaints may often be mistaken for other illnesses, so doctors are encouraged to rule out other illnesses first. This is often called, diagnosis by exclusion: by excluding possible illnesses, you’re left with fibromyalgia. When a doctor is diagnosing fibro, it usually includes a history of widespread pain all over the body for at least 3 months. There is also pain in at least 11 of the 18 designated tender points – brought on when a specified amount of pressure is applied.

If you believe you may have fibromylagia, speak with your healthcare provider. While there’s no cure for the disease, there are ways you may be able to manage the symptoms, and make life easier for yourself.

For more information on fibromyalgia, you can visit:

MayoClinic.com

National Fibromyalgia Association

FM-CFS Canada

UK Fibromyalgia.com

~~~~

Image: Newscom

Post from: Blisstree

National Fibromyalgia Awareness Day

I don’t look like there’s anything wrong with me. If you saw me you wouldn’t know that I’m in pain. Everyday activities are challenging and I never know how my body will feel from one day to the next. Simple things, like laundry and dishes, become impossible some days, barely tolerable others.

I live with Fibromyalgia.

Image: istockphoto

I hurt my back in a fall eleven years ago. For many years I dealt with trying to learn how to live with the chronic pain from it. I tried everything; medication, injections, physical therapy. Nothing helped; my doctors finally told me I’d have to live with it.

About five years ago my pain changed. It moved through my body, it moved beyond my back. It felt all-consuming. Some doctors told me that it was ‘referred’ pain, my back still the cause of it. Others told me that it was in my head.

A move brought a new doctor. One who listened carefully to me, beyond just my medical records. And he was able to diagnose the Fibromyalgia. It was both frightening and a relief. It was nice to have an answer, to know I was right thinking there was something else going on. But it was frightening getting a diagnosis that had no solution. I’m glad it’s not more serious, it’s not life threatening. But it has changed my life.

There are medications out now for Fibromyalgia, unfortunately they didn’t work for me. Over the last couple of years I’ve learned to live with it, gained some coping skills that give me the best chance of functioning as normally as I can.

The most important thing, and the hardest, was accepting it. I hurt and that’s not going to change. I listen to my body, if I push it too far it will be worse. I’ve learned what time of day I feel best and I schedule myself accordingly. I’ve made my surroundings as accommodating as I can–everything from what shelf towels are on to how I sit at my computer.

It’s easiest at home; it gets harder out in public. I don’t look ill and I’m not elderly. It’s hard asking for help lifting things. I’ve gotten more than a few raised eyebrows. I look like I should be able to lift a case of water or put the groceries in the car. I didn’t ask for help for a long time, it felt like giving in to something I didn’t want to admit had so much control over me. I learned the hard way, lifting that case of water made me hurt more. My mind needed to accept it to help my body feel the best it can.

Fibromyalgia is a challenge, but it can be manageable. With acceptance and awareness I function better now than I did when I was first diagnosed. I have good days and bad days, but now I feel like I have some control over all of them.

For further information about Fibromyalgia, check the Mayo Clinic website.

Post from: Blisstree

The Invisible Illness

Actually over 95% of chronic illness is invisible. Laura from CFS Squared sent me a link to a great website that is officially hosting an area to come together and “feel that there is someone else that gets it”. Go check out all that it offers including… articles, things to buy, chat rooms and a very funny “10 things not to say to a chronically ill person”.

Post from: Blisstree

National Invisible Chronic Illness Week Is September 10th Through The 16th.