Chronic Illness Holiday Gift Guide

Whether you are looking for gifts for someone else in your life who lives with chronic illness or other health problems or you could use a little self-care yourself, there is something here for everyone on your list! Choosing a gift for someone who's chronically ill and who is limited or even housebound can be tricky, but here I've collected a bunch of great ideas, many of them tested in our own home, sure to please the Spoonies in your life but also healthy friends & family. Shop for someone else, gift yourself, or add these to your own wish list for your family! And if you have other ideas, please let me know in the comments below.

Comfort and Care

Super Comfy Soft Blanket:

When I am crashed, all I want is to be surrounded with super-soft comfort, even when it's warm out! Just feeling that soft, smooth texture is very comforting. Here are several different blankets, all very soft and cozy, in varying weights.

Lightweight Blanket - This lightweight plush blanket is super soft. We have a bunch of these in our family room, and we use them around a campfire, too.

Heavier/Warmer Blanket  - Super soft outer layer, plus a sherpa lining, for extra warmth and two different textures.

Fuzzy Faux-Fur Blanket - This one is for people who appreciate ultra plush, fuzzy comfort (like my son!)

Weighted Blanket - For those who get comfort from a weighted blanket, this one also features a super-soft feel, with plush on one side and sherpa on the other.

Fuzzy Faux-Fur Blanket

 

Back Cushion for Support:

Lumbar Support Back Cushion - Life-changing for me! I got this gel-filled lumbar cushion for the car when I was having low-back pain but discovered it works just as well in my recliner to support my back and prevent pain. Also works for couch, bed, chair, or wheelchair.

Prop-Up Pillows

When you spend a lot of time in bed or on the couch, you need to prop yourself up sometimes (like to eat!). Here are some great options to support your back and keep you comfortable.

Adjustable Bed Wedge Pillow - This simple wedge pillow adjusts to multiple positions to support you while sitting or lying down

4-Piece Orthopedic Pillow Set - This 4-piece ergonomically-designed set can be used in many different ways to provide just the right support for your position (and there's currently a $10 off coupon available).

4-Piece Pillow Set

Comfy Slippers

I don't know about you, but with all the time I spend at home, the "shoes" I wear most are slippers, and they wear out. Because I wear them so much, I prefer the kind with good arch support or memory foam and durable soles that can go outside (I'm wearing them now as I type on my deck!).

Cotton Memory Foam Slipper - These inexpensive, lightweight but well-made slippers feature breathable cotton uppers, memory foam insoles, and nonslip rubber soles, in a variety of colors.

Orthotic Slippers with Arch Support - For those with plantar fasciitis or other foot pain, these slippers come with orthotic insoles for arch support and comfort (and still not very expensive and they look nice!).

Deluxe Orthopedic Slippers - A bit more expensive, these slippers (and other styles) from Orthofeet provide orthotic insoles, cushiony insides, and warm faux fur.

Convertible Indoor/Outdoor Slippers - These convertible slippers can be worn as clogs or with a back and come in unisex sizes, with a nonslip sole that can go outdoors.

Orthotic Slippers with Arch Support

Pajamas/Loungewear

If you spend a lot of time in pajamas or loungewear, they might as well be super comfortable.

Cozy Long-Sleeve Shirt and Joggers - These warm, ultrasoft pajamas from Eddie Bauer are comfy all over and look nice enough to be seen in! (a similar set for men)

Breathable Bamboo Pajamas (long) - I don't know about you, but I'm always overheated (my son is, too). This summer, I finally tried bamboo pajamas and love them! Super soft and lightweight but breathable, they are perfect for those who suffer night sweats or get overheated easily (similar pajamas/loungewear for men).

Breathable Bamboo Pajamas (short) - If you're looking for something even cooler, these are made of the same lightweight, breathable bamboo fabric, but in a shorts style (here are similar ones for Men).

Bamboo Pajamas

Ease the Pain and Fatigue

Ice Packs

Ice packs come in all shapes and sizes and have many uses for those with chronic medical conditions.

Large Flexible Ice Pack - I bought these because they were recommended when I went to physical therapy (the same kind they use professionally), and I can see why! They come in various sizes (I like the large one for back, shoulders, neck), are flexible, and comfortable. I just keep mine laid flat in the freezer, ready when I need it (note these can also be used as heating pads - keep one in the freezer and one out, ready to microwave).

Migraine Head Ice Hat - When you get a migraine or other severe headache, sometimes nothing seems to help, but ice/cold can do wonders to reduce swelling and inflammation, constrict blood vessels, and provide relief. I used to have to awkwardly wrap ice packs around my head and neck, but now you cam get one like this, made specifically for your head to wrap all the way around. Ahhh!

Migraine Ice Hat

 

Heating Pads

I used to use old-school electric heating pads, until my dermatologist said I had sun damage on my lower back. When I said that part of my body hadn't seen the sun in many decades, he explained that electric heating pads could damage the skin just like the sun. Since I lost my dad to melanoma, I was motivated to find an alternative! Again, I took the recommendations of professional physical therapists, who use gel-filled heating packs. They're not only safer and won't damage skin, but this kind of moist heat better penetrates deep into the tissue where it can do the most good.

Rectangular Two-Sided Hot/Cold Pack - While there are lots of gel heating pad options, this one is my favorite. It's inexpensive, well-made with sealed outer edges (I had a few that leaked after multiple microwaving before this one), and has two different surfaces. When it's very hot, just out of the microwave, I use the cloth-covered side and switch to the smooth side as it cools down a bit. It can also be used as a cold pack, but I reserve this one just for heat. I bought one for my step-mom for her birthday last year (she has chronic pain), and she said it was the best gift she'd ever gotten!

Aromatherapy Neck and Shoulders Hot/Cold Pack - This one is specially designed to wrap around neck and shoulders, which can be hard to get to with a rectangular pad. It's infused with herbs for aromatherapy, too.

Hot/Cold Pack

 

Migraine Glasses

With Lyme disease, my son often gets crippling migraines with severe light sensitivity that causes him to don sunglasses and hide in his room.

Anti-Migraine, Light Sensitivity Glasses - These can help when migraines hit but they can also help to prevent migranes and help with general light sensitivity. Bonus: they also block blue light from screens that can disrupt your sleep (see below). 

Migraine Glasses

 

Compression Garments

Anyone with any kind of Orthostatic Intolerance (OI, including POTS), which is everyone with ME/CFS and many with long-COVID, Lyme, EDS, and fibro, will benefit from compression socks and other garments that gently help to improve blood flow and prevent blood pooling in the lower extremities. And they now come in lots of stylish options--these are not your Grandpa's compression socks!

Knee-High Light Compression Socks (Women) - Made for nurses (who spend a lot of time on their feet), these light compression socks come in lots of fun styles.

Unisex Light Compression Knee-High Socks - Rated light compression (15-20 mmHg), these fit men and women and come in a variety of styles.

Inisex Moderate Compression Knee-High Socks - These provide more compression, rated moderate (20-30 mmHg) and come in packs with lots of wild designs--you might as well enjoy them!

Women's High-Waisted Compression Shorts -  Studies show that compression shorts that cover the waist and pelvic area can help OI by prevent blood pooling while sitting or standing. Most compression shorts sold as shapewear or athletic wear (like these) will do the trick. Bonus: These have high waists and pockets and could be worn under clothes or on their own. Similar style for men.

Women's Light Compression Tights - Provides compression from the waist down to ankles. And a similar style for men.

Moderate Compression Tights for Women - These provide moderate compression (20-30 mmHg). Similar style in unisex sizing.

Moderate Compression Socks

Stay Hydrated! 

Hydration is so important, for treating Orthostatic Introlerance (OI), which is partly due to an inability to hold onto fluids, and for general health and well-being. There are all kinds of great water bottles and other designs available now to keep your drinks cold (or hot in winter). I carry my water bottle everywhere with me, and my son fills his with electrolyte solution (made with GU Brew tablets).

Plastic Water Bottle with Chug Lid and Carry Handle - I prefer bottles without straws because I find them difficult to clean. This BPA-free bottle comes in three different sizes (go for the 32 or 40 oz!) with an easy-drink lid, and it's dishwasher safe.

Leak-Proof Bottle with Spout Lid- This one comes in 22 and 32 oz sizes, is dishwasher safe, and has a spout lid. Comes in lots of colors.

Insulated Stay-Cool (or Hot) Bottle - With double-walled insulation, this bottle keeps your drink cold (or hot) for hours and comes in larger sizes, plus three different lid styles.

Neoprene Insulated Carry Holder for Water Bottle - I want this! Comes with a carry strap so it's easy to bring your water bottle wherever you go, and the Neoprene holder keeps it cold (and stops it from sweating).

Insulated Bottle

 

Work or Play

Whether you're trying to work from home or just enjoy some fun, these items can help to support you and make it easier to both work and play.

Lap Desk 

I'm always looking for a good lapdesk that allows me to use my laptop and/or write while in my recliner, on the couch, or in bed.

Lightweight Cushioned Lap Desk - this simple, inexpensive lap desk has a cushioned bottom for comfort, with space for air flow to keep your laptop from overheating, and a ridge to keep it from sliding. I added this to my wish list!

Lap Desk with Mouse Pad - This slightly larger lap desk has those same features, plus a mousepad and a holder for your phone.

Lap Desk with Adjustable Legs - I don't usually like lap desks with legs because they're usually too high for me, but this one has adjustable legs and a bunch of other useful features.

Lightweight Cushioned Lap Desk

 

Holder/Stand for Tablet or Book

Whether you're trying to expend as little energy as possible or have pain issues in neck, arms, or shoulders, some sort of holder or stand can help to support a tablet or book.

Flippy Soft Multi-Angle Pillow Stand  - Ok, sure I love the name, but this one also seems to be very practical for anyone bedridden or couchbound, with different viewing angles on each side and a soft surface. When my mom said a large hardcover book she was reading was too heavy for her injured shoulder, I got her something similar to this.  

Standing Tablet/Book Stand - This stand allows you to read or use a tablet hands-free and without anything on top of you. It stands on the ground but is very adjustable, whether you're in bed, on the couch, or in a recliner. I gave this to my step-mom for Christmas last year when she said she couldn't read anymore because of her chronic neck pain. This allows her to put the book or tablet right at eye level, no matter where she's sitting. She was thrilled! 

Flippy

 

Blue Light Blockers

As I explain in my post on Correcting Sleep Dysfunction, sleep experts all advise avoiding screens in the two hours before you go to sleep at night. Blue light suppresses melatonin, telling your body it's wake-up time! But what if you enjoy watching a show or movie before bed? If you're using a laptop, tablet, or phone, you can turn the blue light off at night (look for Night Shift on Apple devices in the Display and Brightness option under Settings). My iPad is set to turn off blue light at 9 pm every night, for times when I'm using it as an e-reader. There are also several gadgets that can block blue light. 

Blue Light Blocking Glasses - These have clear-looking lenses and come in sets of two to four pairs, in a wide variety of sizes, for both men and women. Perfect for watching TV.

Blue Light Blocking Reading Glasses - If you are of a certain age and looking for blue-light blockers for when you're using your phone, tablet, or other device up close, these combine blue light blocking with reading glasses, available in different strengths. They come in packs of five, so you can leave them in different rooms of the house, and several different styles.

Blue Light Blocking Screen Protector for MacBook laptops - If you'd prefer not to wear glasses, you can get a blue light blocker that covers your whole screen. This one has various sizes for different MacBooks. This one fits certain iPhones. If you scroll down a bit on either page, you'll find other options for different types, brands, and sizes of devices.

Audio Book Membership

Many people with chronic illness struggle to read books in print but can still enjoy audiobooks. I'm a huge fan of audiobooks and listen to all kinds! If you also struggle with longer or more complex audiobooks, try middle-grade or teen/YA books on audio. This blog post, The Joy of Reading, is excerpted from a chapter in my book and includes some great tips for enjoying reading, with lots of recommendations! An audiobook membership makes a great gift for people who love books, whether they can manage reading in print or not. 

Audible - The biggest and most well-known source for audiobooks recently is this subset of Amazon, with two different membership options.

Libro.fm - With this source for audiobooks, every purchase helps to support independent bookstores (one you select or all of them).

 

Sweet Dreams

Since we spend so much time in bed but are still always exhausted, we can use all the help we can get! Check out my tips in How to Nap, and also improve your sleep quality with the treatments in Correcting Sleep Dysfunction. These all make great gifts for your favorite spoonie (or yourself).

Eye Mask and Ear Plugs

As I explain in those blog posts linked above on napping and sleeping, keeping the sleep environment--whether at home or away--cool, dark, and quiet is essential. An eye mask and ear plugs can help.

3D Light-Blocking Eye Mask - This soft, spongy eye mask reduces pressure around the eyes and block all light.

Silk Eye Mask - Silk is gentler on the skin than other materials, and as a natural fiber, it is also breathable so should help to prevent overheating.

Weighted Lavender Aromatherapy Sleep Mask - Personally, I hate scented stuff, but my mom loves her weighted lavender sleep mask, and I know many people swear by aromatherapy (and lavender is a sleep aid). With this one, you can remove the inner bag filled with lavender to use it alone and/or heat it in the microwave.

Silicone Ear Plugs - Forget the old foam-style ear plugs; silicone ones work so much better! To block out street noise, household noise, a partner's snoring, or so you can nap in public (like on an airplane), these are a game-changer! Great stocking stuffer or Hanukkah gift.

3D Eye Mask

 

Soft, Warm Socks

As I explain in my How to Nap post and video, studies show that warm socks help you fall asleep more quickly--it's science! I wear these to bed at night and pull them over my regular socks at naptime. They are lightweight but warm and super-soft:

Women's Fuzzy Socks - These come in sets of 5-6 pairs, in a wide variety of colors. Scroll down for similar socks in different designs.

Men's Fuzzy Socks - Different designs are available, and these come with non-slip grips on the bottoms for wearing outside of bed.

Women's Fuzzy Socks

 

Room-Darkening Curtains

While an eye mask can help, nothing beats a really dark room when you need good quality sleep. Light tells your body to stop making melatonin, so block out as much light as possible with room-darkening curtains. My son and I both have these in our bedrooms, and my husband calls our bedroom "the cave." I love it.

Light-Blocking, Energy Smart Curtain Panels - These will not only darken your room effectively but also help to block noise and lower energy bills! We have them in our bedrooms but also in the family room, where the afternoon sun heats things up in the warmer months. They come in 15 different colors and 34 different width and length options and are easy to install on any curtain rod. And there's currently a 10% off coupon, too!

Light-Blocking Curtains

 

Lots of great gift ideas here for friends, family, or yourself!

What are YOUR favorite gifts to give/receive?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

News From Our House - Oct. 1, 2020 - Taking Time Off

Hi, all! My husband and I are just back from a day trip to the beach for a late anniversary celebration (more on that below), a lovely little getaway. I have still not been feeling great, with far too many bad crash days, but we have enjoyed some good times in the past couple of weeks, too. 

Antivirals Update

I am still taking antivirals for reactivated HHV-6 (as explained in this post), and still struggling, though making a little progress. I had a lot of bad days in September, which was frustrating because it's my favorite month and the weather was finally better. I have worked up to a full dose of Famvir (famciclovir), which is one pill per day, after four months of gradually working up. Right from the start, I have had a pretty severe Herx reaction (a worsening that occurs when treating certain infections). 

My stamina is far, far below where it normally is. With treatments over the past 15 years, I was able to exercise again and had worked up (very gradually and only after treating exercise intolerance) to being able to walk most days, working out with weights (carefully, lying on the ground) three or four days a week, and being able to manage walking for up to 60-90 minutes on a good day! Recently, I have been in such bad shape that even just a slow 15-minute walk could cause a crash. That's a big downturn for me. 

Now that I am up to a full dose of antivirals, I am hoping to start seeing some improvements. I have walked a bit during some "days off" with my husband this past week (see below) with only minor repercussions, so I am hoping things are getting better. This has been going on since mid-March, seven months now, so it's been tough to deal with being incapacitated again after so many years of managing better.

Insurance Woes

I won't get into all the details of the whole, long, nasty story, but our son turned 26 this summer, so we had to apply to keep him on our health insurance. We'd been told by other parents that it was easy to do, so we weren't worried. We sent in our application ... and they rejected it. They said they agreed he was disabled but they thought he could support himself (what??). So, I spent a full week scrambling to collect doctor's letters, copy lab results, and write a 4-page letter from us, all to say that he can not work full-time right now and needs to stay on our insurance. Our appeal was approved and they overturned their first decision - wonderful, right? Except that was September 1, and it has taken a full month of never-ending phone calls to get them to correct their system so that it showed he was covered! We kept going back to the pharmacy to refill meds and being told he didn't have coverage. All just to say that it's been a difficult and very stressful process. And, yes, that was the short version!

U.S. parents, learn from us: If you have a disabled 25-year-old, get your application to keep him/her on your health insurance in as early as possible, to leave time for the bureaucratic mess that may follow! Ask your carrier for the forms.

Taking Time OFF

My husband has had his hands full since the pandemic began, between me not feeling well (and not being able to do much) and caring for his 95-year-old father and working full-time. Normally, we enjoy traveling with our pop-up camper--nice, slow-paced, relaxing road trips. This year, we haven't been able to travel at all, for all of these reasons: the pandemic, my condition, and not being able to leave my FIL (before we hired help, my husband had to go check on him two or three times a day!). But we do have help now (in-home care services who send someone to spend 3 hours with him on weekdays), so I was determined to somehow fit in some much-needed downtime for us.

Reading at our campsite

Last week, we took a little day-and-a-half camping trip to a nearby state park mid-week (to avoid the crowds and to go when we had extra help for dad). We left Tuesday evening and came back by lunchtime Thursday, and we did get some emergency calls on our only full day off (a broken tooth!). BUT, we managed to grab some very peaceful quiet time for ourselves outdoors.

Short walk to a secluded beach

 

It was a very relaxing trip. We slept in our camper, read a lot, took a short walk down to a nearby isolated beach, had a campfire, and just enjoyed the tranquility. The campground was almost empty, and being outdoors just immediately fills me with a sense of calm. Falling asleep with all our windows unzipped, listening to the sounds of the crickets and the water lapping against the rocks, was especially lovely.

Waking to the sounds and sights of nature!

 

We had this amazing waterfront campsite and thoroughly enjoyed the downtime and perfect weather with just the two of us.

Magnificent water view from our campsite

Today, we enjoyed another mini getaway. Our 31st anniversary was yesterday, so we got some take-out from a favorite restaurant locally last night, and today after breakfast, we drove to the beach (about 2 hours away). It was 4 hours of driving for just 3 hours there (we had to leave in time for my afternoon nap and to get home in time to check on his dad), but it was a lot of fun.

A short trip to the beach: I love the ocean!

 

We walked on the beach, which is my happy place! I love the ocean--the sound of the waves, the smell of the salt air, the horizon separating blue sea and blue sky. It was lovely and relaxing. Afterward, we had an outdoor lunch at a waterfront restaurant, took a very quick walk through town and returned home. Even the drive was nice since we have been missing our road trips!

Celebrating our anniversary today at the beach

 

Just these two tiny trips have really helped my emotional well-being. Between my bad crash and everything else going on, I was getting kind of down at times and really missing our camping trips and travel. Just doing something outside of your normal routine for an hour or two can really make a difference and provide an emotional lift. I wrote more about the lift that nature can provide in Weekly Inspiration: Outdoor Living (with more photos from our camping trip).

What I'm Reading and Watching

I am currently enjoying an annual fall reading challenge I do every year, #RIP XV, where you just read darker stuff in September and October: things like mystery, suspense, thriller, paranormal, etc. In September, I read a true crime book, The Feather Thief: Beauty, Obsession, and the Natural History Heist of the Century by Kirk Wallace Johnson. I read it for my book group (which just restarted meeting via Zoom), and like many book group choices, I probably wouldn't have chosen it myself but am so glad I read it! It's a fascinating, truth-is-stranger-than-fiction story of a young musician who broke into the British Natural History Museum and got away with priceless collections of birds. Everyone in our group loved it, and we had a lot to talk about! You can read my review at the link.

Now, I am immersed in a quiet suspense novel, The Lock Artist by Steve Hamilton, which won the Edgar Award for Best Novel in 2011. I gave it to my husband, and now I am enjoying it (the best kind of gift!). It's about a young man who can't speak and is an expert safecracker, and the story of how both of those things came about. So far, it's been engrossing and suspenseful, though it is a quiet kind of thriller, with no gore. I'm really enjoying it.

We enjoyed a movie this past weekend, Enola Holmes, which is new on Netflix. It's about Sherlock Holmes' much-younger sister, who shows some of his same cunning and courage when she runs away to London on h

er own to find her missing mother. Millie Bobby Brown (of Stranger Things fame) plays Enola, and she is wonderful in the role! It's a fun, light movie that we both enjoyed; you can read my full review and watch the trailer at the link.

 

 

 

How are YOU doing this week?

And what are you reading, watching, and enjoying?

Leave a comment below (most are coming through now), or you can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.

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.

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.

Low Expectations

How's this for a cold splash of water on the face? My lawyer just called about my disability hearing tomorrow.

There are 5 disability judges in Delaware, and we have the 3rd lowest approval rating of all 50 states! He said he can tell by the way the schedule is arranged tomorrow that it will be one of 3 judges. Two of those have approval rates of 20% - that puts them among the lowest 10-15% of all the Social Security judges in the entire nation!! So, I have a 67% chance of getting a judge who almost always says no. Very discouraging! 

The whole process is just so unfair - the mere fact that it relies on which judge you get rather than the merits of your case is just crazy.

Wish me luck - I have a feeling tomorrow will be a difficult day emotionally.

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.

Fall 2012 CFSAC Videos, Day 2

So, scroll down to see the video clips form Day 1 of the recent CFSAC meeting in Washington, DC.  And here are the clips from Day 2:

Day 2 Opening Remarks and Agency Updates:



Presentation: Social Security Administration:



Public Comment Period #3: (I haven't seen this yet so don't know who is speaking)



ME/CFS Organizations, Updates:



A Pathforward:



Finalize Recommendations:



That's it!  Looks like I need to get busy and watch the rest of these!

The Daily Battle

I was thinking (again) today about how every single thing I do every single day is such a struggle and requires such a huge effort of will.  No one else - not even the people closest to us - could possibly understand what it is like for us, how every moment of every day is such a battle and requires so much effort.

Getting up in the morning is a battle.  I actually sleep quite well, thanks to medications to correct my sleep dysfunction, but I am still never ready to get up in the morning.  I force myself up out of bed, thinking of all the things I need to get done.

Getting up from my nap each afternoon is an even bigger battle.  By the time I lie down after lunch, I am usually completely exhausted, even if I slept a solid ten hours the night before and wasn't very active in the morning.  I need that nap; it would be physically impossible for me to keep going.  And it does help.  But getting out of bed after I wake up is excruciating painful.  Only the thought of needing to pick up my son or whatever else I need to do that afternoon finally propels me up.  Some days, like today, I feel as if my entire body has been filled with wet cement while I slept, as if my limbs literally weigh too much to lift them up off the bed.

Getting up off the couch to make dinner every evening is a huge battle.  By late afternoon/early evening, I am completely worn out, in spite of the nap (it's even worse without the nap), but I know I need to feed my family, so I force myself to get up and get moving.

Getting up from the table after dinner to help clean the kitchen is a battle, but I know my husband hates doing dishes, so I try to help as much as I can.

And every single step in between, all day, every day, is a battle, a struggle.  Just trying to find the energy to keep going each day, to do the minimum of what needs to be done, is exhausting in itself.  And I'm one of the lucky ones!  I'm fairly well off (in CFS terms), thanks to 10 years of tirelessly searching for effective treatments (and finding some!)  I know there are plenty of people with ME/CFS who are much worse off, who literally can't get out of bed or off the couch, who couldn't even dream of making dinner for their family.

And yet, the Social Security Administration thinks I could work full-time.  That is so crazy, it is laughable!  I saw that one of the early reviewers of my SS disability application misunderstood all the diary pages I included, with ratings of how I felt each day.  On average, I am somewhere around 2.5 on my scale of 1 to 5 (one being good; 5 being badly crashed), so they concluded I feel good most of the time.  So, I compared my own scale to the one that Dr. Bell developed for measuring disability.  My 1 (i.e. very good) is about a 55 on Dr. Bell's scale - that roughly compares to being able to do 55% of what I could do before I got sick...and that's on my best days (which are rare)!  I often think that if a normal, healthy person woke up feeling the way I feel on a good day, he or she would decide to spend the day in bed.  There's no way for a normal person to understand our daily struggle.

But life goes on...and so do we, struggling and battling every hour of every day just to do the minimal basic things we need to do to get by.  There is no energy left for cleaning or lawn work or organizing closets or painting a room or any kind of home improvement (or most other activities) whatsoever. 

Most days, I am grateful for the limited energy I have, and I face each day feeling positive and ready to do what I can.  But some days, like today, it all just feels like too much effort, and I wonder how I can possibly go on and face another day of constant battles.  I just want to crawl into bed with a stack of books and take care of myself.

But, as I often repeat to myself (as many times as necessary) at the end of rough days like today: Tomorrow is another day.  And I will start again and somehow find the will to pull myself out of bed and do it all again...somehow.

One of my favorite quotes (no idea what the source is - I saw it on a plaque in a catalog years ago):

Courage doesn't always roar.
Sometimes courage is the quiet voice 
at the end of the day saying,
"I will try again tomorrow."

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.