volunteering with fibro

Volunteer with Disabilities like Fibromyalgia & Chronic Pain

Question about Disability

Can you volunteer your time while being on disabilities like fibromyalgia and chronic pain?

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Letters to Friends, Volunteering
image credit: free @ canva modified by Mandy

Hello, My Friends,

I wanted to share with you what it’s like to live with Fibromyalgia, yet still, be able to volunteer. I wasn’t sure that I would be able to volunteer with a disability when I first went on disability from work, because I was bedridden for a long time due to pain and fatigue.

Over a period of several years though, my treatments of medication and gentle exercise, etc. began to work and I found myself feeling well enough that I knew I wanted to give back to the community again. I just needed to
find the right way to do it, so that I wasn’t overwhelming myself too much.

Over the years my chronic pain was managed and stable. #volunteering #disability Click To Tweet

Great Volunteer Organizations

I found a great organization in my home province of BC called Patient Voices Network. They give everyday ordinary people the opportunity to have a say in how health care is delivered in the Province by allowing us to be Patient Advocates when Health Care Organizations are looking for the Patient Voice in their engagements.

  • This can be done in many different ways –
  • being part of focus groups,
  • surveys,
  • committees or
  • councils and so much more.


After becoming a member of PVN, I immediately jumped in by becoming involved in a committee that was working to improve surgical outcomes for patients with colorectal cancer. I helped to develop a DVD that all patients would receive along with a booklet outlining what to expect as they started treatment, right from the moment of diagnosis all the way to follow up
after surgery. Since then, I’ve been invited to several forums, I’ve participated in some surveys and focus groups and I currently sit on 4 different committees, one virtual reality testing group and one Provincial Survey Measurement Working Group.

Doing Too Much with Chronic Pain

Everyone says “oh, you do so much”, but my actual time commitment is really not that much. One committee meets quarterly, one meets bi-monthly, and for some of them, I don’t even have to travel as I can join them online. I do travel to Vancouver from my home in Langford for 2 of
the groups, but my expenses are all covered, and it’s fun to meet with my teammates in person.


I get such a great sense of satisfaction being able to give back to the community in this way. I know I’m making a difference to others with the work I’m doing, and because I’m able to pick and choose what I want to commit to, I am able to maintain my own health at the same time. I have plenty of time to rest so my Fibromyalgia stays under control, and if I’m not feeling well for some reason, I can always call into the meetings that I normally attend in person.

I highly recommend looking into Volunteer work for anyone with Fibromyalgia as there are many ways you can assist others while still taking care of you. Find something you are passionate about, and see if you can make it a part of your life. It helps get you out of the house, keeps you active and involved and helps others at the same time.

I hope you find it as enjoyable as I do.


From my heart,
Pamela

volunteer with disability, fibromyalgia, chronic pain
image credit Canva. Modified by Mandy

Thank you, Pam, for sharing with us about volunteering. This is a wonderful way to get out and do something for others.

What About You, Readers?

How are you get out and doing for others? What volunteer organizations do you recommend? Share in the comments below.

If you are in the USA, I found this website that gives a lengthy list of Volunteer organizations with which you may be able to get involved.

restorative rest

Ten Steps to a Restorative Rest

You Seem Tired A Lot. How Well Are You Sleeping?

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Fibromyalgia and Fatigue go hand in hand.

I struggle nearly every night just trying to get to sleep. I can sit in a chair all evening yawning and nodding off. But get into the bed, and the eyes pop wide open. This leads to my mind begins to wander and I start to think about all kinds of things that keep me awake. The next day, I can barely function.

As a matter of fact, fatigue is the second most common symptom for fibromyalgia sufferers. Many times those diagnosed with fibromyalgia will also be diagnosed with chronic fatigue syndrome.

Therefore, it is vitally important to get that restorative rest as much as you can.

As a sufferer myself, I respond along with you, “Yeah, right!”

Steps to Restorative Rest

So what can we do?

Continue reading
fibromyalgia symptoms

SYMPTOMS TO LOOK FOR WHEN YOU SUSPECT FIBROMYALGIA

Q: What Other Fibromyalgia Symptoms do you have besides the Pain?

Fibromyalgia divider


Reminder :  I am a patient, not a doctor. What I am sharing comes largely from what my doctors taught me and some of what is discovered in my own research.
The purpose of this series is to inform. I pray you will be informed enough to support friends with this syndrome or possibly acquire informed questions for your doctor. Please talk with your doctor or visit the Mayo Clinic website for official information, diagnosis, and treatment.

There are so many fibromyalgia symptoms and they can come and go. Look for these and others, especially when they come in multiples.

According to Patient Education Booklet from Mayo Clinic ” Fibromyalgia: The Road to Wellness”, symptoms of fibromyalgia include:

  • Widespread pain
  • Fatigue
  • Sleep difficulties
  • Mood Disorders
  • Difficulty with memory, concentration, or thought organization (sometimes called “Fibro Fog“)
  • Headaches, facial pain
  • Chest wall pain
  • Heightened sensitivity to odors, noises, bright lights and touch.
  • Stiffness
  • Numbness or tingling in the arms and legs
  • Dizziness

One may or may not experience all these symptoms. And some may come and go, even the pain. This makes it difficult to diagnose, along with the fact that there is no blood test or x-ray that can be done to find the problem. When these tests are done, everything comes back normal which is why many doctors are baffled or believe that it is psychosomatic.

Conditions that may accompany fibromyalgia

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What is Fibro

What is Fibromyalgia?

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Fibromyalgia is not a death sentence.

Fibro is not a terminal disease. You can live a full life and have fibromyalgia. Your life may not be the same as before. Pain management will be necessary to have a portion of your old self.

One can live a long and "normal" life because fibromyalgia can be managed. Click To Tweet

Reminder:  I just want to say that I am a patient, not a doctor. What I am sharing comes largely from what my doctors have taught me and what I have discovered in my own research.

I am sharing to hopefully help you be informed enough to support friends with this syndrome or possibly acquire informed questions for your doctor. Please talk with your doctor or visit the Mayo Clinic website for official information, diagnosis, and treatment.

Continue reading
fIBROMYALGIA REALLY FOR REAL

Why Fibromyalgia is a Real Pain?

qUESTION – iS fIBROMYALGIA rEALLY FOR rEAL?

Dear Friend OF A fIBRO wARRIOR;

Unimaginable to me, but there are people who can’t relate to dealing with pain. There are folks out there that have never had as much as a headache in their life. This is unimaginable to me.

I’m NOT one of them.

I have dealt with pain from a very early age. In the 5th grade, I started having chest pains, severe pains, like having a heart attack pains. But by the time I got to a doctor or the ER, the pain was gone or they couldn’t find the source of it. They said it was “growing pains“. Funny, I never got taller than 5’2”. Sure had a lot of pain to end up so short. Continue reading

baking cookies with fibro

Baking Cookies with Fibromyalgia .. or Not

Dear Sis,

Can you believe I only baked one batch of Christmas cookies this year? I Cut-out cookiesused to make double batches of 5 or 6 different kinds of cookies. Remember how we used to gather with our cousins and bake cookies all day after Thanksgiving? We must have made a thousand cookies back then. But it is nearly impossible for me anymore. First of all, it’s only me around here now. My husband, bless his heart, is trying to convince me that I should just quit baking cookies but it really breaks my heart to stop. 🙁  He’s probably right ’cause he usually is. Continue reading

I can not do

Simple Things I No Longer Do With Fibromyalgia

Dear friends;

If you been around since my diagnosis of fibromyalgia, I’m sure you realize that I am not the same as I used to be. I’m guessing you have noticed that I am no longer the go-getter I used to be and no longer deeply involved with the children at church, as a matter of fact, I’m not even at church every time the doors open. I walk with a cane and tire very easily. At home, I have to leave a lot of the daily chores to my husband. This is all much to my disappointment but it just cannot be helped.

Simple Things I No Longer Do

Today, though, I thought I might share about some of the simple things you may not realize that I can no longer do since my diagnosis. Here are some of those simple things that most of us take quite for granted.

Wear a hat or pretty barrettes in my hair.

Anything that might pull my hair or put pressure on my head causes a lot of pain for me now. Have you ever put your hair in a tight ponytail and then later when you took it down you scalp hurt? This is me all the time. Some days are not as bad as others, but for the most part, anything in my hair or on my head is a no-no.

Open a bottle of water or coke.

bottle cap simple things

Photo Credit: Hans at Pixabay

“Can you open this, please?

Those little ridges on the bottle cap are little needles poking into my hand when I try to open a bottle, especially the first time breaking the seal.

Walk across the floor in my bare feet.

Walking in my bare feet, at times is like walking on a bed of nails. Or worse, little a bed of needles. Can’t wear the socks with slip grids on them either. Each grid causes great pressure or pain on my feet. Lately even the fuzzy socks have been an issue. They feel like walking on a dirty kitchen floor in your bare feet. I had a pair of sandals once with ridges inside the soles. Oh, my, It was just impossible to walk in them.

Don’t mean to overwhelm you. Just trying to help you understand why I no longer do things I used to do. I hate it really cause my brain says, “Hey, let’s do this” but my body says, “NO!” My mind knows these are simple things to do, but no longer for me.

Thanks for listening and understanding,

Mandy Farmer

 

I’m a Member of Fibro Bloggers Directory

Pain for the holidays

Pain Comes for the Holidays

Ah, Friend, Happy Holidays!

So here we are again at the holiday season. I have always loved so much about the holiday season. I  love the cooler weather, the baking, the planning of parties and Christmas decorating and caroling. But most of that is no longer true for me. All these things seem to be an invite for Pain to enter my life and hold me hostage during the holidays. Continue reading

vote chronic pain

Voting With Chronic Pain

Dear friends;

Greetings from my recliner and a heating pad!

Did you get to vote in the elections this week? My husband and I managed to get out and vote yesterday in spite of knowing that the lines would be long. And indeed, they were. When we arrived we saw a line that extended outside and through the filled parking lot. We figured as much since there were cars lining the streets as we approached. We decided to park in the school parking lot across the street and walk over.

As we walked onto the campus where the voting was taking place we were reminded of two years ago when the lines extended as far for the presidential election. Wow! It’s surprising, no not really with the political atmosphere we have been in for two years, but midterm elections are usually not that big of a deal. Continue reading

how to help

How Can You Help Someone With Chronic Pain?

Dear Friend,

The other day, when you heard about my diagnosis of Fibromyalgia, you said to let you know if there was any way you could help. I thought I might write to let you know how you can help. I know that you mean well, but this kind of offer kind of puts me in a quandary.

You see, I am not really sure how to answer that. There might be something that I know you would do and I would ask you but there are so many needs and I really feel like I am imposing to ask for your help. Unless you are a really, really good friend, I probably will never call on you for help even though I know your offer is sincere. Continue reading