Volunteering

I’ve dropped of the face of the earth during the last week, because all of my energy has been taken up with a new project – volunteering at a local hospital. It’s the same hospital where my pain clinic is located, so it made sense to volunteer there. I have been thinking of volunteering for a long time, but felt very intimidated by the whole idea.

Fibromyalgia dropped in on my life like a tonne of bricks during graduate school and forced me to stop everything. My symptoms developed over a 6 month period and took away my abilities piece by piece. The process left me feeling incompetent and unsure of being able to do anything. It doesn’t make sense; I know theoretically that it was pain not ineptitude that forced me to stop. Yet, it was a damaging experience  –  trying to get  the right combination of extensions, sick leaves and accommodations to successfully finish my workload, only to find that nothing was enough except stopping altogether . I stayed in a bubble for over a year after I withdrew from my program because of it.

I have been slowly going crazy in my bubble and knew I needed to do something about it. I have had some success doing online (free!) university courses with Coursera (and recently discovered that my local library has some courses on DVD about art and literature). I have been looking for an exercise class to join. There is a tai chi organization that offers gentle health promotion classes near me. Also, my local YMCA apparently has gentle aqua fit classes in a warm pool. The problem with these ideas is that they cost money and I am always worried about if I can really do it or not. Volunteering is perfect because it is free and also, because you are giving your time, it can theoretically be on your terms. Also, as a person living with a chronic illness, I think it is beneficial to find a way to feel helpful or useful. In line with cognitive behavioral therapy, it is good to focus on the positive aspects of your circumstances (if I compare living with fibromyalgia to my old life I feel down but if I can compare it to having cancer or other terminal illness I feel grateful).
I chose the hospital after looking at a number of positions because they wanted a 4 hour commitment, once a week, during day time hours. A lot of positions wanted more hours, on evenings and weekends, or involved computer work. (I have some severe trigger points around my shoulder blades which prevent me from typing. I use voice to text software for blogging and e-mails. This means I have to do it at home where talking to myself doesn’t look quite as crazy! The software is also a bit clunky which is why I can’t blog more). I will be at an information desk on one of the hospital floors. This seems to suit my body fairly well because I can either sit or stand and talk with patients. I can also put my backrest and seat cushion on the chair to help me get through the full shift. I also feel like it is a good position to start with. I was nervous about beginning with patient visiting or something because of needing to appear cheerful and ‘on’. Dealing with pain and mood swings makes me question whether I can appear chatty and upbeat on demand.

I originally applied to another hospital network, but their bureaucratic approach was really getting me down. I already deal with enough of the medical system bureaucracy as the patient without having to deal with it in my free time as a volunteer! When I went to make an appointment with occupational health to show them my vaccines were up to date and they told me I had to wait five weeks for the next available appointment I almost gave up. Finally, I wrote the hospital I finally did get a position with, and they had me come in for an orientation just a few days later. I was so nervous before my orientation and my first training shift. That made me feel doubly crazy because why was I so nervous over a little volunteering commitment? It seems like since my fibromyalgia diagnosis I have generally been more anxious about things that I used to be. I also relate it back to when I was first diagnosed. I think going through that process where the abilities you took for granted get taken away makes you feel like you can’t take it for granted that you have any ability. There are also many more things to be anxious about – will I be able to make it every week? What if the chair hurts my back? What if someone asks me to help lift or carry something heavy? Will I  look weird with my backrest and cushion?

This story has a happy ending. I did my first shift on my own this past Monday. I was able to help a few very lost and confused patients find their appointment locations (why do they always design hospitals to be like mazes?). It felt good to be helpful and I could feel my inner extrovert perking up a little bit. Next time I need to bring a magazine or two for those dead in between times. I also need to buy a pair of black pants because skirts are definitely not cutting it in this frosty fall weather (sadly, no blue jeans are allowed). I think that this will end up being a very positive baby step in the right direction for me and I encourage everyone else who can to give volunteering a try.

I think volunteering with organizations that focus on health issues is less daunting. Hospitals, seniors centers, the arthritis society, etc. are more likely to be accommodating. For example, my fiancée works with a health nonprofit and he has noticed that at health fairs the arthritis society volunteers have had their materials couriered for them. Nowadays, there are also online volunteering opportunities, which might be more appropriate for some people. I did a quick Google search and found a good article here which mentions opportunities like United Nations Volunteers. There is definitely a lot more out there than your local food bank and I think volunteers often feel like they end up taking more away from the experience than they contribute because it is usually very rewarding.

Pleasure and pain brain signals disrupted in fibromyalgia patients – Medical News Today

Pleasure and pain brain signals disrupted in fibromyalgia patients – Medical News Today.

… Dr. Loggia concludes, “Our findings suggest that fibromyalgia patients exhibit altered brain responses to punishing and rewarding events, such as expectancy of pain and relief of pain. These observations may contribute to explain the heightened sensitivity to pain, as well as the lack of effectiveness of pain medications such as opioids, observed in these patients. Future studies should further investigate the neurochemical basis underlying these dysfunctions.”

Young people report worse fibromyalgia than older patients

Oct. 27, 2013 — It may seem counterintuitive, but young and middle-aged fibromyalgia patients report worse symptoms and poorer quality of life than older patients, a Mayo Clinic study shows…

Young people report worse fibromyalgia than older patients.

Back to class: Mindfulness Based Stress Reduction

Meditation

Meditation (Photo credit: holisticgeek)

I am about to go to the second class of my Mindfulness Based Stress Reduction (MBSR) course. In the summer I wrote several posts on reading the Mindfulness Solution to Pain and practicing meditations described in the book.  Mindfulness involves “paying attention on purpose, in the present moment, and nonjudgmentally, to the unfolding of experience moment to moment”, as defined by Jon Kabat-Zinn, founder of the MBSR program. I also posted on research showing how effective mindfulness practice is for chronic pain.

I have really enjoyed doing the assigned “homework” from the first class. The first part was to do a 30 minute body scan from the course CD. (A body scan meditation involves paying attention to different parts of your body for a few moments and observing the sensations you feel). This is the longest meditation I’ve ever done. The practices I have done before were breath meditations, usually only for a max time of 20 minutes. I really like the body scan because I am able to really focus and feel more in touch with what’s going on in my body. I feel like my mind wanders less then when I am doing breath meditation (focusing on your breath). It is very relaxing to have a break from your mind!

Of course, I’m not always in such a good mood when I go to meditate. Before I was meditating when I felt like it, which was usually when I already felt relaxed or calm. The idea of the MBSR program is that you commit to practice seven days a week for eight weeks – as Jon Kabat-Zinn says “you don’t have to like it, you just have to do it”. It sounds a little bit rigid but it’s really important while you are trying to establish meditation has a habit. When you go to practice and you realize you are stressed, agitated, and your mind is wandering everywhere, focusing can seem like the last thing you want to. But that’s when you realize how helpful mindfulness can be! It doesn’t necessarily produce calm every time. It does give you a chance to observe what is going on inside your head. Usually that helps me to figure out a more helpful way of dealing with things then spazzing out, or to recognize stressful patterns of thinking.

One thing I do have to keep working on is not to judge myself when I realized my mind has wandered off or I’m not feeling calmer/better after meditating. As the facilitator of my class says “if you have a mind, it’s going to wander”. You really can’t get into mindfulness with expectations about what it “should” do for you.

The other part of our homework was to try to eat mindfully at least once everyday. It’s really nice to realize how many sensations and moments are available to you if you stop to enjoy them. I love food, cooking and eating. When you realize how many times you just wolf down delicious meals… I always feel like my life is so limited now that I have fibromyalgia, so I think it’s really good for me to realize how much I do have around me to enjoy!

Liebster Award

http://trynabpainfreemomma.files.wordpress.com/2013/10/liebster-award.jpg

Wow! Thank you so much to Michelle over at trynabpainfreemomma.wordpress.com for nominating my blog for the Liebster award! I really enjoy reading her posts – I always find things I can relate to and so much interesting information on fibromyalgia. That’s what I’ve really come to like about blogging; it’s not so much about putting your own experiences out there but finding other bloggers to learn from. Some posts give you a helpful way to see things in a positive light, others express the same frustrations that you feel as a person living with chronic pain. There’s something very reassuring about realizing you’re not the only person going through the crazy fibromyalgia roller coaster! Of course there’s also all that great information about recent research, things to try, and strategies to cope, too. I’m honored to think that other bloggers might be getting some of the same things out of reading my blog!

What is the Liebster award? It is an Internet award given by bloggers to other bloggers. It follows similar rules to chain letters, in that you pay it forward to other bloggers after you receive it. ‘Liebster’ is German for ‘dearest’, ‘sweetest’, ‘kindest’. The name relates to the purpose of the award which is to give recognition to new bloggers – which is a nice thing to do! (You can find more information here at http://trynabpainfreemomma.wordpress.com/2013/10/12/id-like-to-thank-the-academy/ ).

The rules:

1. Link back and recognize the blogger who nominated you.

 2. Answer ten questions given to you, by the person who nominated you.

 3. Nominate ten other bloggers for the award.

 4. Create ten questions for your nominees to answer.

 5. Notify your nominees.

 6. And lastly, you may copy and paste the award on your blog!

So, on to answering the questions created by my nominee:

1. What inspires you to blog?

I started blogging because I wanted to share all of the things that I’ve tried and done to manage my fibromyalgia. I thought it would be helpful for me to have a place where I compiled all of the research, complementary and alternative treatments, meditation experiences, tips and tricks, and other things that I’ve learned help me. I also hope that it gives other readers something to add to their fibro toolbox. In the process, I have learned that the community of other bloggers makes blogging rewarding.

2. What are your other hobbies?

I am a hopeless nerd who always needs to be learning something. If I don’t get that kind of mental input I start to go crazy. At the moment I am taking free online courses at Coursera in everything from ancient Greece to psychology. I also enjoy reading, although it has to be an audio book, because my shoulders get too sore from holding an actual book. I like mystery novels (nothing too gruesome though) and fiction (with a happy ending). I like cooking, watching movies, taking walks outside, and spending time with friends.

3. Do you hope to make money blogging?

That’s not a goal I have at the moment. I don’t really like the idea of making money off of sharing my personal experiences, but on the other hand I can understand that if you had a very successful blog it would be tempting, especially for people like me who can’t work because of their chronic pain.

4. Do you hokey pokey?

Only at three in the morning!

5. What is the most inspiring place you’ve traveled to?

Traveling! I didn’t add that to my list of hobbies because it’s not something I can do at the moment, but I have spent a number of years studying and working abroad. Without a doubt the most inspiring place I have visited is East Africa (Kenya, Uganda, Tanzania). I was with a student group and we visited a remarkable nonprofit who ran youth programs in a slum in Nairobi (soccer teams, homework clubs, a safe hangout area, and primary health care lessons). When I imagined slums, I definitely didn’t think it would look like what I found – music everywhere, hair salons, restaurants, people laughing, people inviting you in for dinner. Yes, all of this took place in the characteristic tiny aluminum shacks crammed together along garbage and waste strewn pathways. But it was Life in the face of crushing poverty. Incredibly inspiring.

6. What quote, and by whom, inspires you?

“God, grant me the serenity to accept the things I cannot change,

The courage to change the things I can,

And wisdom to know the difference.” – Serenity Prayer

7. If you thought the government powers that be would actually listen to you what would you say?

Inequality is unacceptable. Equality includes not just political and civil rights, but social and economic rights too. Everyone should have access to education, healthcare and meaningful opportunities. There is really no reason for developed countries to have increasing income disparity and other inequalities. We should also do more to ensure that developing countries have access to funds, technologies, and medications that they need, supported by fair political and economic policies.

8. What is your favorite movie genre? why?

This is a tricky one. I definitely like action movies, especially heist films. I also like dramas. But just like with fiction, I don’t really want to spend my time on stories that make you feel like life isn’t worth living, no matter how ‘compelling’ or ‘critically acclaimed’. Recent movies that I’ve enjoyed are ‘The Quartet ‘, ‘Mud’, ‘2 Guns’ and ‘Red’.

9. Whom do you hope to be an inspiration to?

My little brothers. Well, they’re great big hulking teenage boys now, but still much younger than me!

10. My life is _____the only one I’ve got, so I have to do my best with what I have!

My 10 Liebster Award Nominees …

http://myjourneythrume.wordpress.com/about/

http://seekingthegiftsoffibromyalgia.blogspot.com.au/

http://chronicchic.com/

http://discoveriesofgrace.wordpress.com/

http://fibro2010.com/

http://findmyhealth.blogspot.ca

http://glutenfreeandtheaustralianteenager.wordpress.com/

http://chronic-invisibility.blogspot.ca/

http://bignoises.wordpress.com/

http://www.livinglifewithfms.com/

Okay, so now 10 questions for my nominees:

1. What do you like most about blogging?

2. What is your guilty pleasure?

3. What to like to do on a Sunday?

4. What quality do you like most about yourself?

5. Who is one of your role models and why?

6. Who is your favorite author and why?

7. If you had to move to another country, what would it be?

8. Favorite TV show? Do you like to watch week to week or binge watch all at once?

9. If you had to make one wish, what would it be?

10. Cats or dogs? Pirates or ninjas?

 

Brain abnormality ‘predictor of chronic pain’

Brain abnormality ‘predictor of chronic pain’.

This article is about a fascinating study which demonstrates how a brain abnormality increases the likelihood that an acute back injury will become chronically painful. The abnormality has to do with parts of the brain that process emotional reactions to pain.  This makes people who have it vulnerable to “enhanced emotional learning” which magnifies the pain and its significance… leading to chronic pain.

Creating Chronic Pain Awareness (You can help!)

As part of Chronic Pain Awareness month (September) this is an awareness-raising activity from a great blog, Oh What a Pain in the… There are questions about the experience of living with chronic pain which readers have filled out in the comments section – read to learn more or add your own ideas at Oh what a pain in the … and pass it on.

Natural Treatments for Fibromyalgia: Why you should Try D-Ribose

Natural Treatments for Fibromyalgia: Why you should Try D-RiboseThe first part of my natural treatment protocol for FM was focused on healing my digestive tract (which I described in a previous post). The second phase is to begin incorporating d-ribose.

D-ribose is a sugar produced in the body and taken to alleviate fatigue and pain in fibromyalgia and chronic fatigue syndrome. Here’s what the research says about this supplement.

The biggest advocate for d-ribose is Dr. Teitelbaum, a prominent doctor in the field of chronic fatigue and fibromyalgia medicine. He has developed a program for treating both conditions which includes d-ribose as a core component. Dr. Teitelbaum contends that CFS/FMS is caused by an “energy crisis” in the body, leading to a cascade of different symptoms like fatigue, pain, sleep disturbance, among others. One root cause of the energy problem, he argues, is that the ability of the mitochondria in your cells to generate energy is suppressed. Mitochondria produce the energy, called ATP, used by your cells to carry out all their functions. D-ribose is essential to the production of ATP. Therefore, taking additional D-ribose should help to support mitochondrial function and improve energy output in fatigued patients. (If you are interested in learning more, check out a much longer discussion found on Dr. Teitelbaum’s website here).

The evidence? Dr. Teitelbaum has authored a few pilot studies that have demonstrated some promising results. The most recent study was an open-label study published in 2012. In this multicenter study, 257 patients diagnosed with CFS/FMS were given d-ribose (5 g three times daily for three weeks). Patient symptoms were assessed in terms of subjective change in energy, sleep quality, mental clarity, pain level, and global sense of well-being, and compared to their pre-study baseline. Significant improvements were found; specifically a 61.3% increase in energy, 37% increase in general well-being, 29% improvement in sleep, 30% improvement in mental clarity, 15.6% decrease in pain.

Sounds great, right? There are some limitations to the study. First of all, there was no placebo group so we don’t have a sense of how much a placebo effect might have impacted the results. Secondly, it was quite a short study so long term effects were not captured in the results. Third, I always feel a bit suspicious of studies that lump chronic fatigue and fibromyalgia together because a lot of recent research has demonstrated different causes for the two conditions and mixing them together might conflate the results.

Personally, I have found D-ribose a helpful aid to improving my energy. I would say that it improves my energy by 15-20%. I take 5mg in the morning, and sometimes an additional 5mg in the afternoon. When I stopped taking it, I noticed a worsening of my afternoon brain fog and fatigue. I didn’t notice a worsening of pain or sleep however. I also appreciate that it is easy to take –  just mix a spoonful with a glass of swater- instead of yet another pill. It is also relatively inexpensive.

As with everything fibromyalgia or chronic fatigue related, it is an individual experience, so you have to try it for yourself. In the case of d-ribose, I think it is definitely worth a try!

Check out other great posts on the Fibro Friday Linkup!

References

Teitelbaum JE, et al. “Treatment of chronic fatigue syndrome and fibromyalgia with D-ribose – An open-label, multicenter study.” The Open Pain Journal. 2012, 5,32-37

Nerding Fun

coursera ancient greek course

Coursera: Online learning

This is the key to my mental sanity. Free, open, online courses in almost any subject you can think of. I first learned about this incredible website last March and my first course was on ancient Greece. This is a topic that has always fascinated me but I never had a chance to take a classics course in university. Since then I have nerded my way through Intro to Psychology, Nutrition, and now Human History.

https://www.coursera.org/

The format that Coursera uses is very flexible. Their website basically hosts university courses which professors at partner universities have voluntarily put together specifically for Coursera. Each week a series of video lectures are posted totaling 1– 3 hours. In some classes, the professor posts additional readings to be done. Assessment usually involves quizzes and peer-reviewed assignments. Of course, doing the homework is entirely optional. If you choose to do it you can earn a “statement of accomplishment”, but otherwise you can just enjoy the lectures. There are also discussion forums you can participate in. It can be very interesting because students come from all over the world, so there is an enormous diversity of opinions.

Coursera has really exploded during the past year. There are more than 4.5 million students signed up for more than 480 courses offered by 85 universities.

I spent many enjoyable hours at cafés with my tablet learning from the video lectures. I really don’t know what I would do if innovative websites like this were not available! I hope that this inspires some of you out there to give it a try!

Reading that Makes You Happy

Dec-30-(24)

Dec-30-(24) (Photo credit: theloushe)

Why is it that award-winning, critically acclaimed books are always so damn depressing?  It’s good to explore all facets of human experience, I suppose, but just because an author takes on heavy duty subjects doesn’t automatically mean their book belongs in the English canon. For my first witness, I call Jane Austen. Enough said.

The ordinary everyday, the commonplace, the regular relationships between families, neighbours and community all offer rich storylines. Tackling difficult subjects in a lighthearted, understanding manner is an underrated ability. Also, I think we have a need for archetypal stories of ‘coming of age’, ‘love conquers all’, etc. Critics can call it predictable. I call it enjoyable.

Since fibromyalgia, my appetite for potentially depressing reading is gone. Reality is ‘real’ enough. I want escapism. I’ve avoided all books except for funny, lighthearted murder mysteries. Elizabeth Peter’s Amelia Peabody or the Agatha Raisin series are particular favorites. Maybe it sounds like a contradiction but the well-ordered world where the bad guy always gets caught by the hilarious heroine is reassuring.

In an effort to branch out, I found this perfect list of uplifting fiction that will leave you ‘feeling like life is still worth living’. When I saw Pride and Prejudice and the No 1 Ladies’ detective agency on the list I knew it was the real deal. It’s nice to get back into reading and exploring the world from my armchair again. I’m half way through the Guernsey Literary and Potato Peel Pie Society and it’s great!

http://www.goodreads.com/list/show/5035.Uplifting_Fiction