My Progress in 2020 and Goals for 2021

It's time for my annual New Year's post, summarizing some of the progress (or lack of!) I made last year and my new objectives and targets for 2021.

As I explained in my Happy (Almost) New Year post last year, I developed my own process for setting lifetime goals and then specific objectives and targets to move me toward those goals each year, then I adjusted that process after I got sick. You can read all the details (with links to more information) in that earlier post. This is a process that anyone can use - the types of goals, objectives, and targets you have will just naturally reflect your own lifestyle and limitations, while helping you take small steps to do the things you want to do, whether that's improving your health or taking better care of yourself or learning a new hobby or staying in touch with family and friends or ... whatever is important to you! For those of us living with chronic illness, it's all about small steps in the right direction, not overwhelming New Year's resolutions.

So, here's my own summary - you can look back at my post My Progress in 2019 and My Goals in 2020 for details on last year's objectives, but I will try to sum those up here, too.

My Progress in 2020

I have 6 Lifetime Goals that represent what I want my life to look like.

My Lifetime Goals:

1. To nurture and enjoy strong, fulfilling relationships with my husband, my sons, my family, and my friends.
2. To be a writer, writing about topics I enjoy and am interested in and getting paid fairly for my work.
3. To spend time outdoors and to travel, doing activities I enjoy and that rejuvenate me, and sharing those experiences with friends and family.
4. To create and maintain a comfortable and happy home environment - both physically and financially - that contributes to happiness, comfort, and loving relationships.
5. To be as healthy as I can be and to take care of myself so that I can do the things I want to do.
6. To give back, help other people, and be part of a community.

SO THAT, I feel happy and content and can spend my time doing things I love.

Each year, I set (or adjust or keep) objectives and then specific, measurable targets to help me move toward those goals. The process is explained here.

I'll skip the details and just share some of what I achieved (or not) in 2020. 

First, A Word on 2020:

Last year was, of course, an unusual year. For me, though, the pandemic was less of a disruption (mostly normal life for me, staying home a lot) than a sudden and still-unexplained downturn in my health starting in March 2020 that I am still struggling with. If you read my progress summary from 2019, you will see that I was doing quite well physically, managing things I hadn't been able to do in many years, with an almost-elimination of post-exertional crashes (due to a wide range of effective treatments found over the years). With this worsening in 2020, I lost much of that progress (temporarily!) with much-reduced stamina and a return of crashes due to mild exertion and far more bad days than good. At this point today, I'm quite sure a flare-up of my Lyme disease was partly at fault and likely some other sort of infectious trigger, too. I am working with my doctors to better treat my Lyme and to uncover the other infectious culprits.

What I Improved on or Did Well in 2020:

• Successful Book Launch: My biggest accomplishment of 2020 was publishing my book, Finding a New Normal: Living Your Best Life with Chronic Illness, in early February, on a broad range of e-book platforms and with the print book sold on Amazon. 
• Successful Child Launch: Both of our sons moved out on their own in the second half of 2020. Our youngest graduated from college, started a new job, and moved into his own apartment locally. Our oldest, the one with severe health problems, is not yet completely independent, but he moved out of state and took a big step forward, which seemed impossible a year before. Both are happy and well-adjusted adults.
  
• In 2019, I noted that I spent lots of time with my husband, meeting my goals for date nights, walks*, and traveling together. ha ha - I had no idea what was coming! My husband hasn't been to his office since March 2020, and we have been together 24/7 since then. While there has been some friction here and there, I did surpass my goals for time spent together with him and enjoyed most of it! We also got to spend a lot of time with both of our sons.
  
• Updated our will (a biggie we'd procrastinated for years, considering our younger son was still identified as "baby #2" in the old documents).
• Learned some new things about book publishing and promotion that seemed horribly complex to me at first.
• Getting outdoors more often (my goal is daily, even if it's just 10 minutes lying on our deck), which was a big lift for my spirits on all those sick days.
  
• Daily yoga (brief 15 min session, all done on the floor) to help prevent injuries and ease aches.
  
• Helped my 95-year-old father-in-law stay connected (a big challenge last year) with outdoor visits, phone calls, and introducing him to Facetime.
  

Needs Improvement:

• Stay connected to my family and friends.
• Freelance writing (which took a backseat to my book the past two years).
• Create e-mail lists for my blogs.
• Stay off social media in the morning and improve productivity (last year was a bit of a black hole!)
  
• Decluttering and improving our home.
• Getting to the bottom of the 2020 worsening and trying new treatments to get back to where I was.
• Resume travel and camping, as able (we are limited both by the pandemic and also my FIL's needs).
• Get back to regular walking * and light weights * as my condition improves and my stamina returns (already seeing signs of that with new Lyme treatments).
  
• Resting when crashed - a continuing struggle for me, to listen to my body.
• Have more fun! Another one that pops up every year. I need to take more time off and probably reduce my load.

* NOTE:  My exercise is NOT Graded Exercise Therapy (GET), and I am ONLY able to exercise because of several treatments for my ME/CFS that have eased the exercise intolerance somewhat, including treating Orthostatic Intolerance and treating immune dysfunction. I still definitely have limits and use a heart rate monitor to help stay within my limits and prevent post-exertional crashes. Other treatments have helped as well - you can read my full summary of treatments that have been most effective for my son and I, allowing us to live active lives again. 

 

 

My Health in 2020
I am a data junkie, and find it very helpful to track several different aspects of my illness. This helps me to see if I am doing better or worse and also helps me to evaluate whether new treatments are helping. So, in 2020, the data clearly shows that downturn I experienced:

• My average exertion level (on a 1 to 5 scale) was 3.5, down 7% from 2019 (which was my most active year since getting sick in 2002).  This was due entirely to that downturn in my condition in March.
  
• Overall, my "how I felt" average was 2.6 (a 1 to 5 scale where 1 is great and 5 is badly crashed). This is again down 7% from the previous year.
  
• I was crashed (a 4 or a 5 on my scale) 17% of the time. This was a 12% downturn from the previous year and shows more clearly how much worse I was. In 2019, I was only crashed 5% of the time, my best year ever. 2020 was my worst year since 2009 (before I started many of the treatments that helped me to improve so much). Add to this the fact that I had a lot of days last year when I was a "3" - not severely crashed but super-achy and run-down and quite limited in what I could do.
  

How do I know all this? Like I said, I like data! I keep track of how I feel each day on a 1 to 5 scale (1 being great & 5 being badly crashed/bedridden), as well as my exertion levels (also 1 to 5, with 5 being most active). I just jot those numbers on a calendar (see photo above) at the end of each day, along with any unusual symptoms, new treatments, etc. So, I've been tracking these numbers, with monthly and yearly averages, since I first got sick in 2002. I also look at % of time spent crashed (a 4 or 5 on my scale). This data also helps me to tell whether a new treatment is helping. If you're not as analytical as I am (I suspect few people are!), you can just jot down the numbers and notes at the end of each day and use it to see patterns in push-crash, whether a new treatment is helping or not, and other information to help manage your illness day-to-day.

Objectives and Targets for 2020
With my process, my Lifetime Goals mostly stay the same, but my specific objectives and targets may change from year to year (or even month to month).

Many of my objectives and targets do stay the same from year to year, like date nights with my husband (mostly in the house now!), time with my friends, resting when my symptoms flare, etc. My writing objectives for 2021 are quite thorough (a new approach for me), but I won't bore you with all those details. I did get some new inspiration from the book Make Time, which is not about doing more (not all that helpful when you have limited time and energy) but about focusing on the important things. One thing I started years ago was using colored index cards (see the photo at the top of the post) to list a few priorities for each day, to help me stay focused. It forces me to start the day by evaluating what's important, and I can carry the card around with me during the day.

Here, I will just highlight the objectives and targets for 2020 under my Health goal:

1. Try New Treatments & Investigate Downturn - while trying new treatments is an objective every year, this year I am focused on figuring out what made me so much worse last year and getting back to where I was. I've already taken a big step in that direction by seeing my son's Lyme specialist, starting some new treatments for that, and getting dozens and dozens of tests done to look for other infectious culprits behind the scenes.

2. Improve Stamina and Become More Active - (contingent on #1, above, to improve my condition and thus my exercise tolerance). And, only possible because I first treated exercise intolerance.

• Walk at least 4 times a week (some of my "walks" currently are just a slow 10 minutes around our cul-de-sac)
• Increase walk time, as able.
• Continue yoga floor routine, 10-15 minutes per day.
• Try 30-minute yoga once a month (as able - I managed it before I got worse last year).
• Muscle-building, 3x per week, as able (on floor to reduce heart rate) - will have to slowly get back into that routine, as my exercise tolerance improves again.
  

3. Reduce Stress, Improve Rest, and Take Care of Myself -

• Rest when symptoms flare (3 or higher on my scale)
• Do 2 quiet things just for myself each week (no multi-tasking!)
• No computer after 7 pm
• Do 2 fun things each week that are not TV
• Take one "day off" each month

We are each at very different places in our illness journeys, even when we have the same illness, so your goals, objectives, and targets will necessarily be different than mine, but I hope that sharing my goals and progress with you will inspire you to embark on a similar process for yourself. Focusing on baby steps in the right direction helps me to actually achieve my goals, instead of looking back at the end of each year and realizing that nothing changed (which is what I used to do!). Each week, I track how I did versus my objectives and re-adjust for the coming week. And, of course, Listening to My Body is always Objective #1!

Have you set any goals or objectives for yourself for 2021? How was 2020 for you? Please share in the comments below! 

Here's to a happy & healthy 2021 for us all, no matter how you approach it!

Weekly Inspiration: ProHealth - Coming of Age with Chronic Illness

Happy weekend! Summer has been so incredibly busy around here, with my adult sons in and out, all kinds of crises, and some travel (though very little actual vacation time!). I hope to post more on the blog in the fall.

Today, though, for my Weekly Inspiration post, I wanted to share my latest article, published this week on the ProHealth website: Coming of Age with Chronic Illness. You can read the full article at that link.

This is a topic near and dear to my heart, as my oldest son - who's had ME/CFS for about 14 years and 3 tick infections for the past 11 years - just graduated from college. He was mostly couch-bound during his last two years of high school and worked hard for six years to get an engineering degree. Besides our own experiences, for this article I also reached out to the wonderful group I run on Facebook for Parents of Kids & Teens (and Young Adults) with ME/CFS and Related Illnesses. Everyone agreed that maturing and becoming an adult with illnesses that are so limiting carries with it huge challenges, and the parents in the group came up with some great ideas and tips for helping your teen and young adult kids. I wish I'd read their advice about 10 years ago!

If you have sick kids, of any age, you might also be interested in an earlier article I wrote, When Your Kids Are Chronically Ill, which includes coping strategies for both sick kids and their parents.

And if your kids are healthy, but you are the one who is chronically ill, then check out The Challenges of Being a Sick Parent.

Finally, if you are wondering HOW my son managed to get through college with ME/CFS and 3 tick infections, it was due to our relentless (and somewhat successful) search for treatments that would help. He and I have both improved significantly and can now live fairly active, semi-normal lives again. This post on Effective Treatments for ME/CFS summarizes the treatments that have helped us the most, with plenty of links to more information.

I hope you are enjoying a lovely weekend, and that this information helps to inspire you and your family to improve your lives with chronic illness.

P.S. If you want to join the Facebook group, Parents of Kids & Teens (and Young Adults) with ME/CFS and Related Illnesses, please answer the questions that pop up after you click "Join" - that is the only way we have now to screen potential members (the group is for parents of sick kids (of all ages) only). We also have a separate group for teens and young adults who are sick, Teens with ME/CFS and Related Illnesses.

Quick Update - Personal & ME/CFS

Hello! Yes, I'm still here! Sorry that the blog hasn't gotten much love lately. Things have been super busy around here, and I've been more than a little overloaded. A few quick personal updates & some links to ME/CFS news, too:

Personal Updates:
I had a rough couple of weeks, with a BUNCH of medical appointments - nothing to do with my ME/CFS, but they took a lot out of me anyway. I had two broken dental fillings replaced (one each week) and two minor toe surgeries to try to fix ingrown toenails - those started last winter when my feet were swollen from erythromelalgia, which has been in remission this year (see how here), but the ingrown toenails keep coming back and are very painful. Hoping this took care of them for good - we'll see! There were also appointments for my 92-year old father-in-law, so the medical stuff has kept me busy.

Writing has also been keeping me busy...and that is good, but as always, time and energy are the limiting factors. I'm trying to do more travel writing because I really enjoy it and want to focus on it more in two years when my husband retires. I had two travel articles published in March:

• Nebraska's Stonehenge, published in the March 2018 issue of Trailer Life magazine.
• Unexpected Mid-Atlantic: In Delaware's Defense published in the March/April 2018 issue of AAA World magazine.

So, that's been fun, and I've been hard at work the past month pitching more travel stories to more publications.

I've also been writing a lot more for Shelf Awareness, continuing the monthly book reviews I started last year but now writing columns for their From My Shelf feature and author interviews, too. I am really enjoying both of these! There was a bit of a learning curve regarding how to effectively record the author interviews (and some operator error on my part), but I love doing the interviews - they are like my own private book clubs with the authors! Those new pieces of mine haven't been published yet, but if you enjoy books and want to see what I'm writing, you can check out my book blog (where I will post my reviews, interviews, and columns) and/or sign up for the Shelf Awareness newsletter (sign-up box in the upper right corner). That's all been a lot of fun, but a bunch of these assignments are all due close together, so that's keeping me very busy.

Here at home, we helped our sons head off on their spring break this week, and last week my husband and I managed a short - and very much needed! - weekend getaway to Annapolis, MD, a wonderful waterfront town with so much amazing food that we both gained weight in spite of a lot of walking. You can check out some of my photos here - this coming weekend, I will be posting the food-related photos and brief reviews of some of the best restaurants we found.

(By the way, if you are wondering how I got well enough to manage my writing career and some travel, here is a summary of the treatments that have worked best for my sons and I over the years - we now function fairly well and live active lives again.)

Quick ME/CFS Updates:
I have a backlog of research studies and other information I want to review, summarize, and share with you, but in the meantime, here are a couple of great summaries of recent studies & other events:

• Solve ME/CFS Research 1st update - including research study news, upcoming webinars, and advocacy events - check out the list of upcoming advocacy efforts for International ME/CFS Awareness Day in May.
• News in Brief - March 2018 from Science for ME - a long list of recently published research studies, updates, publications, and events - including a LOT on the debunking of the PACE trials (i.e. the studies that resulted in doctors recommending Graded Exercise Therapy - GET) - we should finally be seeing some long overdue changes in patient care, especially in places like the UK where GET was the only so-called "treatment" offered for ME/CFS. This is exciting news! 

Ok, that should catch you up - sorry for the lack of blog posts lately. I hope to get back into my normal routine now.

Gifts Made by ME/CFS & Lyme Patients

Copyright: phive2015 / 123RF Stock Photo

I have been meaning to put this post together every holiday season, and I never get the timing right. Hopefully, this is still in time for some holiday shopping! If not...you can use this guide in 2017.

I have gathered together some wonderful handmade products - jewelry, knits, and a wide variety of other handcrafts - that are made by patients with ME/CFS and related conditions, many of them talented young people trying to find their places in the world while mostly housebound. If you choose to buy any of these products, you are not only supporting these talented patients, but in many cases, some or all of the proceeds go toward ME/CFS research and other charities - a win, win, win!

Here are some gifts to consider - for others or for yourself! - this holiday season & beyond:
 
Mia Anderson Jewelry - Mia is a young girl with ME/CFS who creates gorgeous jewelry from semiprecious stones (as well as velvet chokers). Her creations are beautiful, and she donates ALL proceeds to Stanford's ME/CFS Research Initiative, a very worthy cause. You can see her pieces and contact her through her Facebook Page, Mia Anderson Jewelery.

Some of Mia Anderson's bracelets

A necklace from Bergamot Jewels & Knits

Bergamot Jewels and Knits - Another very talented young woman - and a personal friend of ours who lives nearby - creates beautiful jewelry and knit products. She has temporarily closed her Etsy shop in order to take some time off to recuperate & recharge, but you can still order some beautiful items through her Facebook Page, Bergamot Jewels and Knits. I can attest to the beauty and quality of her jewelry myself, as my husband gave me one of her necklaces for Christmas last year!

Clay creatures from SkoffMagid Creations

SkoffMagid Creations - Another young woman with Lyme and POTS (a form of OI) sews and creates unique, intricate items from clay. Her products includes adorable clay creatures, unique stuffed animals, clothing, and pendants. Her mother creates beautiful beaded jewelry that is also available for sale. You can find all of their products on their Facebook page, SkoffMagid Creations.

Rachael's Crafty Corner - So many talented young women with these illnesses! Rachael is 16 years old, lives in the UK, and has ME/CFS plus other health conditions.  She creates a wide variety of unique, personalized gifts. She works with wood and other materials, does a lot of hand-lettering on wood and glass, and plenty of custom work. She has some wonderful holiday items, but they are closing up shop at the end of this week to take a break for the holidays (so I am too late again this year!). There are still plenty of things here that would make great gifts all year-round. Rachael splits her proceeds among 4 of her favorite charities. You can see her products at her Facebook Page or her Etsy Shop. She delivers worldwide.

A collection of creative items from Rachael's Crafty Corner

That's all I have for now, but I would love to feature more patient-made products on my blog! If you or someone you know with ME/CFS or related illnesses creates products that are available for sale, please leave a link to the website, Facebook page, or Etsy site in the comments below.

All of this creativity from our fellow sufferers is inspiring!

Happy Shopping!

Living for Today and Looking Forward to Tomorrow

Once again, I haven't been online much this week. We had one son returning from spring break in Florida, another leaving for spring break in the Bahamas with his girlfriend's family, a 2-day Easter celebration to accommodate both boys' comings and goings, and a mini-getaway this week for my husband and I. Our sons enjoyed tropical spring breaks and we drove 2 hours to camp at the local beach, where the weather was low 40's F and raining! ha ha What's wrong with this picture?

Obviously, from all this activity, I am feeling much, much better, thanks to getting this latest yeast/candida flare-up under control. After a couple of months of infirmity, I am now back to my recent baseline, which is pretty good (see my 2014 summary and How I Improved in 2011 for information on which treatments have helped me).

I very much enjoyed our few days away together, though this is a big change for my husband and I - our first time ever camping in our pop-up trailer on our own and our first spring break without the boys in 20 years. We had a very nice time, in spite of the weather. However, I realized last night that I was also happy and excited to be back home and getting back into my normal routine. My head was spinning this morning with all the things I want to do - blog posts, articles to write, ideas to pitch for writing, etc.

I have been trying to compose this post in my mind all day, but I'm having trouble describing exactly how I am feeling.

Basically, I am very happy with my life and looking forward to every day. I am still quite limited by my illness - in fact, laundry did me in this morning! - but I feel content with what I have and excited for everything that comes next.

Perhaps this feeling is so exciting to me now because I know what it is like when it is missing. During the first years of my illness, I felt a mental fog and lack of motivation that were directly tied to the severity of my illness. Like many people with ME/CFS, when I treated underlying infections with antivirals, the first improvement I noticed was a mental clarity and a return of enthusiasm and motivation, like someone had lifted a dark curtain from in front of me. That's why I no longer take these feelings for granted.

I still feel like I'm not explaining this well.

Life with ME/CFS has given me a gift - a sense of gratitude for what I have and an ability to find joy in small things. Even when I am sicker and more limited - like I was for the past two months - I am still excited about the possibilities in my life. There are so many good books to read, audio books to listen to, great movies and TV shows to watch. Even when I am stuck on the couch, I can still write a bit (not as much as when I feel better), and I am bursting with ideas.

At the same time, my husband and I are starting a transition that will last for several more years. We have one son in college, living on his own, and one who is a junior in high school and beginning to look at colleges (and rarely at home anymore!). Soon, they will both be out of the house. In the meantime, they have already gone off on their own spring break trips, instead of our old family trips, and have told us they no longer want to take a long family vacation in the summer. And while this makes me sad and very nostalgic for their younger years, I also feel a sense of excitement about the future. My husband and I are starting to talk about what kind of a camper we might get when we trade in the pop-up in a few years and the traveling we want to do on our own. There is a lot to look forward to and so much that I am excited about.

I wrote previously (back in 2007!) that my chronic illness psychologist, whose grown son had ME/CFS, used to like to ask me "What Are You Looking Forward To?" It was her way of testing my mental state, to see if I was depressed or merely feeling frustrated with my limitations. Right now, there are so many things I am looking forward to, so many things I want to do. Yes, I am still limited by my illness, and I still tend to plan far more things to do each week than I can possibly accomplish, but I am happy. I am living for today and enjoying each moment while also looking forward to tomorrow.

What are you looking forward to? What makes you happy?

Weekly Inspiration: Laura Hillenbrand

Most people with ME/CFS are aware that our #1 celebrity who shares our illness is the highly-acclaimed author Laura Hillenbrand, who wrote Seabiscuit and Unbroken. Both books spent hundreds of weeks on the best-seller lists and were made into very popular and acclaimed movies.

Much of the general population, however, has no idea that Hillenbrand has been horribly ill for the past 27 years and is mostly housebound. Even fewer people know that her horrible illness is ME/CFS. Because she is rarely able to leave her D.C. townhouse, she's not in the spotlight like other brilliant authors. She's not able to give book readings at bookstores, go on talk shows, or even attend the recent gala premier of Unbroken. So, her inspirational story and her life often stay in the shadows.

I was thrilled to see that the New York Times recently published an excellent interview with Hillenbrand that highlighted her unique challenges and little-known illness in an article titled The Unbreakable Laura Hillenbrand. It's not a perfect article, and the description of ME/CFS is sparse (clearly not much background research was done), but it's a very good article. The author does focus on Hillenbrand's illness and mainly on its effects on her research and writing processes, and it provides some much-needed attention to our illness which is rarely seen in mainstream media.

For a more complete version of Laura's story of ME/CFS, check out the wonderful personal essay she wrote herself, A Sudden Illness, that was published in the New Yorker on July 7, 2003. Here on the New Yorker's website, you can see how the essay appeared and read an abstract. A blogger has posted the entire essay in a pdf file.

So, Laura Hillenbrand is this week's Weekly Inspiration, both for her efforts to help publicize her illness and the effects of ME/CFS and also for her amazing achievements in the face of such monumental challenges. As a writer myself, I find her accomplishments truly inspirational and nothing short of miraculous.

2014 Changes to Social Security Ruling for ME/CFS

I watched the CFS Advisory Committee (CFSAC)'s spring meeting earlier this week online, and one of the presentations I found most informative was about recent changes that have been made the US's Social Security Ruling for ME/CFS. Knowing exactly what is in the ME/CFS ruling will definitely help me when I reapply in a few years (I was awarded partial past benefits last year but nothing ongoing), though much will still depend on which adjucator and which judge you are assigned.

In the interest of being timely, I am going to mostly just paste my notes here that I took while I was watching the presentation, with a bit of extra explanation where needed. Please let me know if anything is unclear or if I got anything wrong. I tried to type my notes as I was listening/watching, so hopefully it is accurate, though I may have missed some points.

 

CFSAC Mtg 6/17/14

Social Security – New ME/CFS Ruling

Mark Kuhn – Social Security Administration

New ruling was effective April 3, 2104.

Replaces previous ruling – provides guidelines for adjudicators (those who review disability applications).

ME/CFS can constitute a Medically Determinable Impairment (MDI) and can be severe and disabling.

Adjudicator Considers:

• Symptoms
• Lab Results
• Medical Signs

Sources for the revised ruling included:

• CCC (Canadian Consensus Criteria)
• ICC (International  Consensus Criteria)
• CDC’s criteria (1994)
• Past SSA experience

Symptoms (from CDC 94):

• Profound fatigue 6 mos or more – persistent or relapsing
• Memory or concentration problems
• Sore throat/swollen glands
• Muscle or joint pain
• Unrefreshing sleep
• PEM

Look for add’l symptoms (some of these are new):

• Muscle weakness
• Disturbed sleep patterns
• Visual difficulties
• Orthostatic Intolerance (OI)
• Respiratory difficulties
• Cardiac abnormalities
• GI symptoms
• Urinary or bladder problems

Require objective medical evidence to support doctor’s diagnosis:

Medical signs:

• Swollen lymph nodes/sore throat
• Tender points (from FM)
• Frequent viral infections with prolonged recovery (new)
• Sinusitis (new)
• Extreme pallor (new)
• Weight changes (new)

Laboratory Findings:

• Elevated EBV titers
• Abnormal MRI scan
• NMH (new) – [my note: Oddly, they’ve included NMH here but not POTS – potentially a big problem for some patients]
• Other findings, such as exercise test and sleep study (new)

Adjudicator should consider add’l findings as research continues to advance, for example elevated  HHV-6.

Look for co-occurring conditions such as:

• FM
• TMJ
• IBS
• IC
• Raynaud’s
• Migraines
• Myofacial pain syndrome
• Sjogren’s Syndrome
• Chronic lymphocytic thyroiditis
• New allergies or intolerances (new)
• Sensitivities to noise, odors, chemicals (new)
• Loss of thermostatic ability – chills, night sweats, intolerance of temps (new)

5-Step Evaluation for all SSD applications:

1. Currently working?
2. Severe impairment?
3. Does impairment meet listing? (NO listing currently for ME/CFS)
4. Can the person do past work?
5. Can the person do any work?

There is no listing for ME/CFS which means that ALL ME/CFS applications will have to go through steps 4 and 5.…or could meet an existing listing for another condition, such as “undifferentiated or mixed connective tissue disease” under immune disorders listing.

A listing has the weight of law and takes longer to get through the system than this type of ruling. A ruling is binding for adjudicators but is not binding in a court of law.

Q&A

Could this ruling be a first step toward a listing for ME/CFS?

Maybe someday– need more research and eventually testing that can prove ME/CFS and indicate severity. SS would move forward as soon as there is medical evidence to support a listing.

Numbers for those with ME/CFS who applied for SSDI and those who were approved at various stages?

No current data available. Past data has been presented at CFSAC and should be available on their website.

Is exercise test or neurocognitive testing sufficient to establish disability?

Those would be sufficient to establish MDI, but establishing degree of disability will still rely on steps 4 & 5.

Learning to Live with ME/CFS Now on Twitter!

Yes, I have finally joined Twitter...kicking and screaming and dragging my feet! I swore I would never do this - just because I am already doing more things than I have time or energy for - but I was kind of forced into it, so I will give it a try.

A good friend told me about a very cool Writer Residency program that Amtrak is sponsoring - they will pick 24 writers to win a free trip on Amtrak (from 2 to 6 days) in a sleeper car. The idea is to promote the arts while also promoting Amtrak. It sounds great to me - I can always use some uninterrupted writing time, and this opportunity comes with a bed for resting!  So, I filled out the form, wrote my answers to the short essay questions, uploaded a writing sample...and then found that the site wouldn't accept my application until I entered a Twitter handle. Really? Yup, Twitter was a requirement. I suppose they just want to get the maximum PR from the free trips they are giving away, and apparently, blogs are just so 2013.

So, I bit the bullet and signed up for Twitter - finally. The Twitter handle for this blog is @livewithmecfs, so go look me up! So far, I have zero followers. I got further annoyed with Twitter when it required me to pick at least 15 Twitter feeds to follow before it would sign me up. Sheesh. I don't like being forced to do things! ha ha

I'm sure I will end up enjoying Twitter. I just need to be careful not to let it get too time-consuming. I had just started making some progress in the past week in taming my e-mail and Facebook obligations and trying to limit my time spent on those. Back to square one.

What have been your experiences with Twitter? Any advice on keeping it from taking up too much time? I don't have a smart phone and mainly just use my cell phone to keep in touch with my husband and kids. I really don't like the idea of being constantly "on call," so I will probably check Twitter online for now. Any suggestions for this newbie are welcome!

Approved for Social Security Disability

People keep asking me whether I have heard back yet, since my final hearing on Social Security disability back in December.

Yes, my letter came in the mail a couple of weeks ago: "Fully Favorable Decision."

It is a bittersweet success, though, which is probably why I haven't said anything. I have very mixed feelings about it. I was approved for just 3 years' back benefits with no on-going benefits. It's a long story, but the bottom line is that it came down to making a choice between an almost-certain "no" or a good possibility of a "yes." My husband and I agreed with my lawyer that something would be far better than nothing.

And that strategy worked - I was approved. But it still stings that I wasn't able to ask for or get what I really deserve - back benefits for 11 years plus on-going benefits.

So, yes, I was approved - yay.  Now we wait another 30 days to find out how much, then another 30 days to get a check. We have no idea how they'll calculate this, since I made a good salary as a consultant 13 years ago, before I got sick, and very meager earnings since then freelance writing.

I do highly recommend hiring a lawyer to take you through the entire process. I doubt very much I would have won without him; his advice was very helpful every step of the way and his office handled a LOT of the paperwork, faxing, etc.. The way it works is that you don't pay anything unless you get approved; then the lawyer gets a small percentage of your benefits.

Emotional Cost of the Disability Process

I am in the final stages of my final shot at getting Social Security Disability.  I have had ME/CFS for 10 years, applied to Social Security several years ago, and have already been rejected twice.  My lawyer is helping me to prepare for my final hearing, before a judge (by video), next month.  My chances are slim because Delaware has the 3rd lowest approval rates for disability of the 50 states.  Lucky us.  It really comes down to which of the four disability judges you get; some are known for turning down almost everyone.  That is just so wrong, that in the end, it doesn't matter what the merits of your case are but which judge you get.

I met with my lawyer a few weeks ago, and he explained that my case was weak because it relies mostly on self-reporting my limitations - I wrote a narrative explaining what I can and can't do and how the post-exertional crashes and OI restrict my activity level, made copies of 10 years' worth of calendars, data, and graphs, and submitted letters from my doctors.  Despite all this, my case has now been rejected twice, so I am trying to strengthen my case with more medical evidence (like my recent OI test).  Ironically, you have to work very hard in order to prove that you can not work.

Beside the physical consequences of having to put so much effort into filling out forms, gathering and copying documents, requesting letters, etc., I am finding that the emotional cost of applying for disability is much greater than I expected.

For starters, there is the very degrading and dehumanizing aspect of simply not being believed.  I have tried for 10 years to carve out a second career as a freelance writer in accordance with my limitations, and I have been unsuccessful in earning enough money to contribute anything significant to my family's income.  I would give anything to be able to be productive again!  And yet, after submitting all of this evidence of my disability, two sets of reviewers have now told me that I am perfectly capable of working full-time as a consultant, like I used to.  Really???  So, even though sitting in someone's living room for a 2-hour book group leaves me exhausted and useless the next day, Social Security says I am able to manage 8-hour days spent on my feet auditing or teaching or leading groups of people.  It's so absurd it is almost funny...except it's not funny when it is happening to you.

My lawyer suggested getting one more set of letters from my two primary doctors, along with two more forms for them to fill out, specifically stating that I can not sit up for more than 2 hours without needing to lie down and rest so I am unable to manage even a sedentary job.  I met with my primary care doctor yesterday, and she was wonderfully supportive.  She is also angry with Social Security for not accepting all the previous evidence submitted.  She typed another letter, while I was sitting there, which leaves no doubt that I can not work.  She explained to me that she rarely writes this sort of letter, even though she is asked frequently.  She said, "It is rare that a patient is so disabled that they really can't manage any job at all.  I wish the judge could look through the records and see how rarely I have supported a disability claim."  But she did it for me.

When I got home from her office, I found a letter from my CFS specialist waiting in the mailbox for me.  She is also getting frustrated with this ridiculous process and wrote a very strongly worded letter to go with the form.  It was exactly what I had asked for.  So, why did it make me want to cry?

Despite 10 years' of daily experience telling me this, it is still disturbing to read in black and white, "...I deem her prognosis to be poor and recommend total and permanent disability."  Having to face the reality that my illness is severe and permanent is heart-breaking.  I think my primary care doctor (who knows me well) realized this because she said to me very gently, "I'm going to write that your illness is permanent so there is no question of the need for disability, OK?"

There are so many things I want to do with my life!  I want to write another book but have not found the energy or productive time to get further than the first chapter and outline, after five years of trying.  I want to go backpacking again and take long hikes through remote wilderness with my family.  I want to exercise - oh, how I want to exercise!  I almost started crying yesterday when I drove past a sign for Zumba classes - I would love Zumba!  I want to spend time with my friends and family and really enjoy myself and them, instead of always having to be so careful.  I want to write and travel and hike and, yes...work!  I used to define myself in part by my professional success.  I became an expert in my field, wrote a book, gave talks at conferences and meetings; I enjoyed my work and was proud of my success.  Knowing that is all in the past is heart-breaking.

I think this is all hitting me extra hard because I haven't been feeling well lately.  In fact, in preparation for my doctor's appointment yesterday, I looked back over the last two months (still keeping those records!) and realized I've been worse since the beginning of September.  So, that makes the emotional stuff harder because I am even more limited and restricted than usual.

I think this process of applying for disability would be difficult even if the process itself were perfect; it's hard to face your limitations in such stark terms.  But the fact that the process is incredibly messed up just makes everything so much worse.  It is humiliating to keep trying to prove how disabled you are, when it seems like no matter what the evidence shows, you will be rejected and not believed.

Well, one way or another, it will be over a month from now, but I think the grieving will go on.

Rejected!

I returned home from vacation to find a response from the Social Security Administration in my mail.

The good news is that they have determined I am not disabled and can still work full-time as a management consultant - hey, isn't that great?  I wish I knew that years ago... think of all the income I could have been earning!

Specifically, they said:

We have determined that your condition was not disabling on any date...

While your conditions caused you to experience occasional bouts of extreme fatigue, the evidence shows your energy level was adequate for your daily activities.  Based on your description of the job you performed as a consultant, we have concluded that you have the ability to perform this same type of work as it is usually performed in the national economy.

Even though I expected to be rejected, this wording still feels like a slap in the face.  My state, Delaware, has one of the lowest approval rates in the U.S. (I think we're fourth worst with only a 37% approval rate in the first step).

I talked to my lawyer today, and they said it's no big deal, to be expected, and they will file the appeal for me.  I kept asking in-depth questions about what else I could send in to prove I'm disabled, but my contact just laughed and told me I'm reading way too much into what is likely a form rejection letter.  She said this is all normal procedure, they'll take care of it and will let me now if they need anything else.

So, more waiting now.

Taking the First Step to Social Security Disability

After nine years of being mostly incapacitated and unable to work more than an hour or two a day, I finally took the first step toward obtaining Social Security disability benefits today by submitting my application, through my lawyer's office.  I don't have very high hopes - in part because Delaware has one of the lowest rates of disability approval in the nation - but I thought I should give it a try to counter our mounting medical bills.

Why did I wait nine years to apply?  That's a good question with convoluted answers wrapped up in both practical and emotional reasons.  From a practical point of view, I always assumed mine would be a tough case to prove since I left my high-paid consulting job voluntarily two years before getting sick in order to take a few years off to spend more time with my family.  As it turns out, that's not actually a big issue, given the rules of the Social Security system.  I had also hoped that I would be able to make enough money writing to make up for at least some of my lost income.  Turns out that's harder than I thought, especially with so little time and energy to devote to a writing career and made even harder with the recent economic downturn.

Emotionally, I was used to being a very strong, independent, self-reliant person, so it's hard for me to admit that I need this kind of help.  I have to admit to also feeling some illogical guilt.  I am fortunate enough to have a spouse with a good job, a very nice home, and few needs unmet.  I hear stories of people with ME/CFS who are completely bedridden, without any family to help support them, who have been turned down for disability.  It makes me feel like what right do I have to ask for help?

But, I know that's an emotional response, not a rational one.  After all, I put money into the Social Security system for all these years.  It's supposed to be available to me if I am unable to earn enough on my own.  There's certainly no question that ME/CFS has disabled me.  Despite my euphoria yesterday over my 36-minute walk, I am still severely limited in what I can do.  In fact, I have been badly crashed since yesterday afternoon (maybe from the walk, maybe from other stuff, maybe from a change in meds on Monday), reminding me that my couch days are far from over.

So, I filled out the many, many forms, listing past jobs, current symptoms, doctors, medications, and blood tests.  At my lawyer's suggestion, I attached a narrative that explains how CFS affects me and what my daily life is like, along with my years' worth of daily symptom tracking and graphs (the lawyer was amazed by my meticulous record-keeping!)  And I'll see what happens.  The extra money would certainly help with our medical expenses, which just keep going up and up each year, maybe even allowing us to finally replace this 30-year old broken couch I'm lying on!  I've heard lots of horror stories about this process.  I don't suppose anyone out there has any success stories to share??

I'm Still Standing!

Coincidentally, since Chris at Sick and Tired was just talking about song lyrics taking on new meanings, I've had "I'm Still Standing" by Elton John stuck in my head all week:

"Don't you know, I'm still standing, better than I ever did,
Looking like a true survivor, feeling like a little kid.
I'm still standing after all this time..."

It's been a very busy week, and I've passed several physical milestones this week...and I'm still standing (literally)!  Jamie's been badly crashed all week, so he's had the couch, where I usually spend a fair amount of time, but I haven't really needed it much.

I've been working hard at a deadline for work.  It was easy work - almost embarrassing, really - my job was to play a bunch of online games to test out various websites for kids.  But, it meant a lot of computer time, sitting up, plus the stress of working against a deadline.

On Tuesday, I went to the grocery store - all by myself! - for the first time in many months and did a full week's worth of grocery shopping, then ran home, took Jamie to the doctor's office and the drugstore, and stopped at the library for DVDs.  I also made it out to dinner and to my book group with friends that evening.  And (drumroll please)....I didn't crash the next day!  In fact, I even took a walk the next day - that's when "I'm Still Standing" started going through my head.

Another milestone: yesterday: I made it all the way around my neighborhood, about a 20-minute walk (slowly, but I made it) - that's again the first time in months I've been able to do that.

So, it seems that I'm finally coming out of my long winter relapse and hopefully making my way back to where I was last summer.  I don't know whether this is due to the d-ribose I started 2 weeks ago or simply the end of virus season or some combination of the two.  Jamie also started on d-ribose last week, though a cold caused a bad crash all this week.  I'll let you know how it goes for both of us.  One thing is for sure - it's very expensive!

I'm a little worn out this evening, but still standing (or I will be in a moment to make dinner)!  Busy weekend coming up, too - I need to finish planning our spring break trip.  So, lots of reasons to feel optimistic!

Have a great weekend!

Just Coasting...

My kids are finally both back in school, but I'm still not getting much of anything done and am feeling rather useless.

I'm not horribly crashed, like I need to crawl back into bed and seriously rest, but I've had moderate CFS symptoms all week and am completely lacking in the kind of drive and motivation I need to actually get any work done. I can manage to lie on the couch with my laptop and do various mindless things, like blurt out my stream-of-consciousness thoughts on this blog, pay bills, and check my bank balance, but I've been completely unable to do what I really need to do - write new pitches and send them out to magazines or put together a large stack of insurance claims and mail them. It's like I'm kind of on autopilot, coasting, with absolutely no creative energy at all. It's frustrating, after finally having a quiet house to myself after so many weeks.

I guess it's just like this sometimes, right? I feel like I should be doing more, but I just can't get my brain out of first gear (or I guess it's in neutral if I'm coasting...).

I know I should stop putting pressure on myself and just go with the flow, but this to-do list keeps taunting me. I've tried to do some of the minor tasks, just to feel a small sense of accomplishment. It helps a little, but I still feel guilty, like I should be capable of doing more.

Just writing this makes me realize I'm probably sicker than I've been admitting this week and need to take it easy and stop feeling bad about it. sigh... In my pre-CFS life, I was always busy, always productive and well-motivated. Even after 8 years, it's still hard some days to accept that I can't do more. The past 6 months have been so rough. I hope spring brings on brighter days and more energy.

My Secret Life

I survived! I attended my board meeting on Tuesday, just like a real grown-up. By 3 pm when I left, I was totally wiped out. When I got on the train, I was so desperate to lie down that I curled up on the seats for a nap. I was pretty tired yesterday but not badly crashed. The muscles in my feet are still sore from wearing low heels (i.e. girly shoes)!

During the meeting,it occurred to me that no one at the crowded conference table knew about my illness. There used to be a few people on the board that knew me before I got CFS and knew how it had changed my life, but they have since retired or moved on.

One of my colleagues was asking me about another guy who used to be on the board with us. I mentioned that I had forwarded a consulting lead to him that I couldn't handle. He laughed and said, "Well, I'm sure you COULD have handled it, you just didn't want to, right?" I just sort of laughed and dropped it, but I was thinking, "No, I really couldn't handle even a single day of ordinary consulting work." By the end of the meeting, I could tell I was reaching the outer limits of my stamina.

It's so surreal to be among people who have no idea that I normally spend my days lying down with a laptop balanced on my lap or that I need a nap every day. It's like I have this secret life, and one day a year I pretend to be normal. It's especially strange to me because I've always been upfront about my illness and my limitations. It just hasn't come up in these once-a-year meetings since the new personnel took over.

I've written about this feeling before, in social situations, in Living in a World Apart and News From Planet Jackson. At this point, most people in my every day life know about my secret life, though I think that few people truly understand how different our lives really are.

Crazy Week

Today was supposed to be my day of rest to get ready for a crazy week, but I've had non-stop computer problems all day! This means that quick, simple tasks have turned into lengthy, difficult tasks. My laptop is FULL - I mean really full. I keep getting these dire warnings about disk space, and I move big files like pictures and movies to a storage drive, but within a week, the messages come back. Bottom line is that all of our computers are old (ancient in computer time) and we just don't have the extra money to upgrade right now, so we struggle along. Meanwhile, there's something wrong with my e-mail and restarting the computer and modem isn't doing the trick, so I still can't send e-mail. I feel stranded!

Anyway, I got the laptop going again after deleting a bunch of files, so I'm lying down at least. What a week we have ahead of us!

Jamie has 4 final exams this week. During the weekend, he went to 2 parties, played soccer Saturday morning, and marched in a parade with his school band Saturday night. A healthy kid would be wiped out after that. Jamie was a complete zombie by last night. Such is the life of a high school kid. Fortunately (and amazingly), he rebounded pretty well with a good night's sleep and was able to go to his last day of classes today.

As for me, tomorrow is my big day. I'm going to an annual board meeting in NJ, the last vestige of my old career in environmental management consulting. It's the one day all year when I pull on my one remaining suit, sit in a business meeting, and skip my after-lunch nap. As you can imagine, it's that last part that's toughest! I take the train there and back so I can at least rest a bit on the way home, but it's a long day for me.

Besides all that, we have a bunch of end-of-school activities at Craig's school (he has 7 days left) and the last week of soccer practices and games.

Well, I'm really not feeling very good today, so I should sign off and really rest. Big day tomorrow!

Good-bye to This Week

Or perhaps I should say "good riddance!" My week started out great, after enjoying my family's visit and definitely feeling a little better. I actually began to exercise again this week - in tiny, tiny increments. On Tuesday, I did 13 push-ups, 11 flys, and 20 pull-downs - all at different times of the day with lots of rest in between. On Wednesday, my muscles were so sore I could barely move, and I was a little run-down, but OK.

The rest of the week just went downhill, though. It wasn't anything that happened but more just my state of mind. I've been feeling hopeless and overwhelmed and lacking in confidence and motivation.

In part, everything about writing feels futile right now. It's a terrible time to be a freelancer. Even in good economic times, freelance writing is a tough job. You spend so much time and effort writing pitches and send off dozens of them with high hopes, feeling like you came up with the perfect idea for that publication. Then, you wait - often many months - for a reply. If you're lucky, you get a single line on a form rejection sent back in your SASE. Lots of pubs don't even bother doing that.

I'm also frustrated by my very limited energy. With CFS, I have such limited productive time each day, and, if I don't do something concrete toward my goals - like sending out another pitch - then I feel like I've wasted my precious energy. In all honesty, the writing I'm enjoying the most right now - this blog and my book reviews - is writing that I don't get paid for, so I feel guilty for time spent on my blogs.

Several times this week, I had the urge to go outside and RUN. Hard exercise is such a great remedy for these kinds of feelings - to go out and pour all your energy into working and sweating and completely clear your mind. Of course, that's a pipe dream. I was thrilled this week when I managed to walk around my neighborhood without stopping to rest (for the first time in many months).

Ken and the boys are at soccer practice this evening. I'm home alone, and the other thing I'd love to do is to drink an ice cold beer or a nice glass of red wine. But, of course, that's out, too. Besides the fact that alcohol makes my CFS worse, it's a major no-no for Lyme (the little Lyme buggers feed on alcohol).

So, I've made a glass of decaf mint iced tea, but it's not quite the same. I think part of my problem is simply loneliness and isolation. Even though I felt better this week, I spent every day at home alone, trying (without much success) to get some writing done.

I'm glad the week is over, but I'm honestly not looking forward to the weekend, either. Maybe just pouring out my feelings here will help some. Thanks for listening.

A Bit Overwhelmed

Two weeks ago, I said I was coming back to life, after weeks of Lyme treatment herxing. That turned out to be premature optimism, and I spent another two weeks lying on the couch.

But, now, I really do seem to be coming out of it and getting back to my own version of normal. I feel a bit like Rip Van Winkle, though, waking up after six weeks of being unable to do anything. I'm discovering unpaid bills, school notices I missed, and piles of unopened mail. There are so many laundry baskets and piles of clothes in the hallway we can barely get into the house.

I'm also worried about making some money. I've only been able to tackle the absolutely necessary writing assignments lately, so I got back to work today sending out new pitches to my editor. Two of the magazines I pitched to in the past six months have now gone out of print. We were planning to quit our pool membership this year, but we missed the deadline (one of those unpaid bills!), so that's another expense. Worst of all, my husband's company just announced that everyone has to take 10 days off without pay this year.

To top it all off, my father-in-law called yesterday to tell us he fell in the shower last Tuesday (and never called!). He's been in terrible pain, so we rushed around to make him an appointment with a doctor (he needed a little push), and Ken will be flying out to Oklahoma tomorrow to help him out this week.

Whew, my head is spinning! I feel guilty just taking time out to write this post (another thing I'm way behind on - writing and reading blogs).

I don't mean to complain, though. Really. I'm so relieved to be up and around again, and I'm very much aware that some people with CFS (including some of you!) are always as incapacitated as I have been recently. How do you keep up?

Well, I better go pay another bill and get back to digging out from under. Despite all the piles, it's good to be back.

Working Hard

I've been feeling very good this week and have been able to work on several writing goals, so I thought I'd share some of my latest work with you (don't worry - I'm taking time out for fun, too!)

• I've launched a new book review website, Great Books for Kids and Teens. I plan to post new reviews to it at least once or twice a week, so please tell the young people in your life!
• I added a new book review to my grown-up book blog, Book By Book, too.
• I updated my writer's website, including my page on CFS (though there's still more I'd like to do with this page).
  
• I discovered that an article I wrote on CFS appeared on the Lively Women website last fall (somehow I missed it!)
• And I pitched a brief CFS article to a major women's magazine. I'm hoping to expand my freelance writing into health, especially CFS. I'll let you know how it goes!
  

Goodbye 2008, Hello 2009

I know it's a little late for New Year stuff, but I got a slow start this year. So, this week, I finally had time to sit down for my annual review of last year and look forward to a new year. I don't set resolutions, but I do like sitting down at this time of year to write a couple of pages about the year just past and set goals for the new year. I've been doing this for about 10 years, and it helps me to put things in perspective and to set priorities.

All in all, despite spending the past 5 months battling Lyme disease, 2008 was mostly a good year for me. During the first 7 months of the year, I felt better than I had in the past 7 years, since first getting sick with CFIDS, thanks to anti-viral treatment and low-dose naltrexone. Best of all, I was able to be more active and do more, and it was a wonderful treat after being sick for so long. I still experienced periodic crashes but less often and much less severe.

Of course, the past 5 months have been rough, with Lyme, but hopefully that's behind me now (I'm still on antibiotics but am Lyme symptom-free now). I'm looking forward to a good 2009.

I also set goals for 2009 this week. My perpetual problem - even before CFS - is trying to do too much. I always have lots of ideas and plans but have trouble finding the time and energy to tackle all of them. Obviously, this problem was greatly exacerbated with CFS! Last year was a breakthrough for me because I felt so much better. I was able to start lots of new writing projects and do some things I'd been planning for years. I didn't see a lot of results in 2008 (or new income), partly because I was so sick the last 5 months, but I got a lot of things started that I hope to follow-up on this year. So, I'm feeling a bit overwhelmed by the sheer volume of what I'd like to do but mostly optimistic about the new year.

And that horrible mess pictured here? Ah, yes, that's my desk, covered with stacks of paper. First of all, I hope to get it cleared off, so I can start the year a bit more organized. I posted the picture here so I'd be shamed into doing something about it! I finally got a start today. So, I'm feeling ready to start the new year!