Tuesday, November 30, 2021

Giving Tuesday 2021 - Multiply Your Donations!

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday & Cyber Monday. Every little bit counts, even if it's only $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did several years ago with OMF (see below) so that $5 is automatically donated from me each month - I don't have to think about it or do anything else, and my donation adds up to $60 a year! It only takes a few minutes to either donate or set up recurring donations.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30!

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy--all are doing wonderful work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. For Giving Tuesday, Facebook has pledged to match up to $8 million dollars in donations! I have hosted fundraisers on Facebook for my birthday, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, share your fundraiser with Facebook friends, and then Facebook will double whatever donations you bring in! More info on how it works and the matching gift today here.

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop!  

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. To show you how well this works, my iGive page currently shows that I have selected Solve ME/CFS as my cause, that I have personally earned and donated $293.44 to them, and that they have earned a total of $6527.70 from all supporters! Isn't that amazing? Over $6500 just from clicking a button before we shop online.

Amazon is not a part of either program listed above but has its own charitable donation program: AmazonSmile. Just sign up and choose your charity (most of those listed above are options). My quarterly report from AmazonSmile from September 2021 says they sent a payment of $1387 to Solve ME/CFS for the quarter and that to date, the organization has received $16,936 from AmazonSmile! I added more to that yesterday. These shopping links really pay off, with almost no effort and no cost to you.

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients!

Tuesday, November 23, 2021

Weekly Inspiration: Managing the Holidays

We are getting ready for a long road trip to my hometown, Rochester NY, for the first time in 2 1/2 years to spend Thanksgiving with my extended family. I am very excited to see everyone again and be reunited, but I am also worried and anxious about caring for myself away from home, the exhausting effects of all that social interaction, and being with certain family members who refuse to even acknowledge my illness, let alone be supportive. To be honest, my stomach has been in knots the past few days thinking about encountering these people (to be clear, most of my family is kind and supportive). And now I have a new concern, worrying about leaving my father-in-law in his assisted living facility for a few days without us being able to visit, as his dementia continues to worsen.

So ... yay, holidays!

I know I will enjoy our visits, and it will be wonderful to see my family again, but this time of year does present some unique challenges for those of us with chronic illness.

I wrote an article for the ProHealth website, which I reprinted here on the blog (and adapted for my book), Managing Family Relationships During the Holidays ... and Beyond. You can read the full text of the original article at that link.

I just re-read it yet again, and it's a good reminder for me, even after so many years. I think my relapse/worsening since March 2020 has increased my anxiety levels quite a bit, but whatever the cause, I was a lot more accepting and zen back when I first wrote this article!

So, I relearned some hard lessons, and I hope you also get some helpful tips from this article.

Happy Thanksgiving!

Sunday, November 21, 2021

Weekly Inspiration: Finding Joy in Every Day

For this week's living with chronic illness inspiration, I have a new video, Finding Joy in Every Day, on my YouTube channel. It's adapted from a chapter in my book, Finding a New Normal: Living Your Best Life with Chronic Illness, and discusses some simple habits that can help you to identify the small joys in your everyday life and create more of those moments, to improve your quality of life and happiness. These simple steps have really helped me.



I don't know about you, but this is a very stressful time of year for me, plus we've had extra stresses caring for my elderly father-in-law and going to an out-of-town family funeral. More than ever, I need to recognize the small moments of joy in every day, learn to see them and make more of them, and make time for myself.

I hope you find this video helpful.

What everyday moments bring YOU joy?

Tell me in the comments below.

You can also connect with me on Twitter and on this blog's Facebook page. There are kind and supportive chronic illness communities in both places. Connecting with others like me brings me joy!

Thursday, November 18, 2021

Chronic Illness Caregivers

Did you know that every November is National Caregivers Month? I wanted to acknowledge it and share some resources because so many of us living with chronic illness either have family caregivers helpings us or are caregivers ourselves. And some of us (like me!) fall into both categories.

There are some general resources, including tips, community, and more, available for all kinds of caregivers through the Caregiver Action Network. They also include graphics and tags for sharing on social media, to help connect with other caregivers.

For those specifically dealing with ME/CFS, either in themselves or those they care for, there are several excellent resources.

Solve ME has Resources for People with M.E. and Caregivers, including lots of great information on symptoms, post-exertional malaise, applying for disability, finances, finding a doctor, and more.

#ME Action has a whole set of resources specifically focused on caregivers, including a Facebook group for support, a newsletter, and periodic virtual meet-ups for caregivers.

American ME and CFS Society also offers a long list of tips, plus additional resources for caregivers of those with ME/CFS.

I also have resources for caregivers. My book, Finding a New Normal: Living Your Best Life with Chronic Illness, includes chapters on When Your Child Is Chronically Ill and Coming of Age with Chronic Illness, plus the entire book is helpful for caregivers in not only understanding what their loved ones are going through but also practical ideas on offering emotional support.

Ten years ago, I started a Facebook group, Parents of Kids & Teens with ME/CFS and Related Illnesses, which is now being managed by several other wonderful parents. It's a warm and compassionate group of parents from all over the world (1600+ now), but it is also an amazing collection of experience and knowledge, with parents helping parents with treatments, finding doctors, and school issues, as well as offering each other emotional support. To join, just follow the link, click the Join button and answer the questions (adult caregivers of adult "children" are welcome, too).


Finally, if like me, you are both a patient and a caregiver (besides my grown son, I am also helping to care for my elderly father-in-law with dementia), check out my video presentation from this year's Parent + Caregiver Summit, Caring for Others When You Need Care Yourself.

And my own personal tip, gleaned from the experience of my husband and I is ... Give yourself a break! Even if you can only manage an hour or two, find someone to lend a hand (family member, friend, or hire someone) so that you can take some much-needed time off. You won't be able to help your loved one if you are exhausted and stressed yourself. I wrote about this on the blog recently in a Weekly Inspiration post: A Much-Needed Respite.

What are YOUR experiences as a caregiver? Are there resources for caregivers that you recommend or have found helpful? Please share your thoughts, tips, and experiences in the comments below.

Happy National Caregivers Month!

Tuesday, November 16, 2021

TV Tuesday: The Big Leap

Together, my husband and I watch a lot of TV shows, including many action/thriller types, medical dramas, sci fi, legal dramas, and a few select comedies. But, on the rare occasions when I have some TV time to myself, I most enjoy watching dramas and especially anything that includes singing and/or dancing. So, while my husband was golfing last month, I tried a new show, The Big Leap, a fictional drama about a reality dance show. I was hooked! I have been loving this show, both for its drama and for the wonderful dance scenes in each episode.

Reality TV director Nick Blackburn, played by Scott Foley, has a new show to focus on, and he is determined to make it a hit. It's a dance competition with open auditions, with the ultimate goal of doing a production of Swan Lake with the disparate group of amateur dancers (of all kinds) that are chosen. Former ballerina Monica, played by Mallory Jansen, and dancer/fashion icon Wayne, played by Kevin Daniels, will act as judges and directors of the final production. The contestants who make it onto the show (this is still first episode stuff) are a varied group, from diverse backgrounds and with very different dance styles. Simon and Brittney, played by Adam Kaplan and Anna Grace Barlow, are ballroom dance partners who have won many awards (and have an interesting backstory). Julia, played by Teri Polo, is a married mother of two daughters who feels stuck in her current life and long ago had a dream of being a professional dancer, with some training in classical ballet. Many of the other contestants have less structured dance backgrounds. Paula, played by Piper Perabo, is a breast cancer survivor with some good moves on the dance floor. Mike, played by Jon Rudnitsky, is down on his luck: laid off from his job, recently divorced and still pining for his ex-wife, and drinking way too much. His dancing has mostly been confined to dive bars while drunk. Gabby, played by Simone Recasner, and Justin, played by Raymond Cham, Jr., were best friends in high school, where Gabby was on the school dance team and Justin was known for his breakdancing moves. They both gave up their dreams, though, and Gabby is struggling to raise and support her son on her own, while Justin works at a bowling alley. Other contestants are into hip hop and other contemporary dance styles and from very different backgrounds. To boost ratings, Nick adds a final contestant, NFL player Reggie, played by Ser'Darius Blaine, who is athletic but has no dance experience and recently ruined his career (he was "cancelled"), providing him with good incentive to show his old coach that he's pulled himself together. Together, along with other dancers, these contestants go through various trials and tribulations each week, in both their personal lives and on camera (and sometimes the two collide), while Nick tries to boost ratings with as much drama as possible.

I am just loving this show, in part for the same reasons I have loved shows like Glee and Zoey's Extraordinary Playlist: I've come to care about the characters and root for them, plus the music and dancing in every episode lift my spirits! The dance aspect alone caught my eye when I saw trailers for the show (check out the one below--it still gives me chills). I also spotted Teri Polo in the cast, whom I absolutely loved in The Fosters, another old favorite show. After watching 8 episodes so far, I have come to enjoy all of the cast members, together forming a wonderful ensemble. The writing is clever, with humor woven in, as well as drama. And, of course, there are the dance scenes! Though they are working on Swan Lake, there are plenty of opportunities for each of the characters to indulge in his or her own special form of dance, which is just fun and uplifting to watch. I'm loving this show and looking forward to the next episode ... my husband is golfing tomorrow afternoon!

The Big Leap is a FOX network show, so it is available On Demand, as well as streaming on Hulu.

This trailer leaves me smiling every time!

Sunday, November 14, 2021

Weekly Inspiration: Find Your People

When you live with chronic illness, one of the most difficult aspects can be the loneliness and isolation. When you have an invisible illness, like ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome), fibromyalgia, EDS, Lyme disease, or POTS, you can feel even more isolated, even (or especially) when you are among healthy friends and family. The solution is to find your own group of people who "get it," who understand exactly what your strange life is like because they are living a similar one.

In the almost-20 years since I first became ill with ME/CFS (and later, Lyme), I have found or created my own community of other patients, both online and locally. These various groups are my safe space, my comfort zone. They are where I "go" (even virtually) when I am at my worst and can't manage interaction with healthy people. They are also the people I turn to when I want to share my victories; the only people who can truly understand the exhilaration of a rare social outing or being able to take a short walk without getting sicker.

It all started with this blog, way back in 2007, when I began writing about my own experiences with ME/CFS, just to help process what I was going through (by then, both of our sons had ME/CFS, too). I was surprised and thrilled when others actually read my blog and began to leave comments, sharing their own experiences! Some of those early commenters here on my blog have become close friends over the years.

By 2010, I had met, heard about, or interacted online with a few other parents of sick kids in my local area, so I decided to plan a lunch where we could all meet. This was a life-changing afternoon for all of us and the start of our local support group, which now includes about 40 different families in our region. That first "mom's lunch" led to a family potluck (the start of a tradition), where our husbands and kids met also, and a few other local families joined us. That evening was just as life-changing for the group of sick kids, all isolated and many unable to attend school or play with friends, as it had been for us parents to meet. Since then, our local group has continued meeting several times a year for weekday lunches and weekend potlucks. Besides understanding, support, and the chance to trade advice on treatments, doctors, and school accommodations, we have developed lifelong, cherished friendships. We are now meeting on Zoom for the time being, but those Zoom meetings still provide a wonderful opportunity to bond, support each other, and share information.

Then, in 2011, I wanted to connect even more parents of sick kids (who have some very complicated and challenging roles), so I started the Parents of Kids and Teens with ME/CFS and Related Illnesses group on Facebook. That group has now grown to over 1600 members from all over the world, and I have turned over its daily admin to other parents. But, the group still retains its original focus on kindness, compassion, and support, with parents who are not only understanding of others' situations but who can offer loads of hard-earned experience in all kinds of situations. The collective knowledge of that group is way beyond what most medical professionals can offer!

There are lots of other groups online that I have joined and participate in, too. I list many of them, plus additional resources in New Online Groups for Teens and Parents (and others, too!).

And to find locals in your own area, try posting in an illness group to find others who live locally. You can also ask your doctor (or the school counselor, for kids) to pass along your contact info to other people/families with similar diagnoses.

Finally, you can leave a comment here on my blog or follow me on Twitter, where there is a huge chronic illness community, or "like" this blog's Facebook page, where we have a kind and supportive community growing as well.

I cover all of this in more detail in my book, and I'll end here with one of my favorite quotes that also appears in my book:

"“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one.” 

        --C.S. Lewis