Suzan Jackson @livewithmecfs Twitter profile

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Suzan Jackson

6 years

Newly Updated #MECFS Treatment Summary - overview of treatments that have most helped my sons & I over the past 15 years. We now live active, semi-normal lives again! Use this info to share w/your doctor & improve your condition & quality of life, too.

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Suzan Jackson

@livewithmecfs

1 year

Wonderful news!! Our son has had #MECFS since age 10 and 3 tick infections since age 12, and today, at 28, he started his first full-time job in the professional field he studied in college (3 classes at a time). This is a day we worried would never come. Hope this gives you hope

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Suzan Jackson

@livewithmecfs

8 months

My mother has specialized in denial & avoidance since I got sick 22 years ago, and I never learn. She finally texted me today after I told her 2 weeks ago I was in a bad relapse. I explained I'm still very sick & worried about the holiday. Her response? "Oh well. Good luck."

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Suzan Jackson

@livewithmecfs

2 years

Woohoo!!! BIG news for those with #MECFS and #longCOVID in the U.S.: Several advocacy organizations successfully lobbied for changes to the ICD codes to officially track our disease for the first time!! Share this page with your doctor(s):

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Suzan Jackson

@livewithmecfs

1 year

Many with #MECFS & #longCOVID (and #EDS , #Lyme & #fibro ) have Mast Cell Activation Syndrome ( #MCAS ), which leads to all kinds of strange symptoms & worsened allergies. It's treatable & most treatments are cheap & readily available:

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Suzan Jackson

@livewithmecfs

2 years

Anyone else "feed a crash"? The worse I feel, the more I want to eat! And not healthy stuff but junk I shouldn't be eating. I lose all self-control and crave pizza, cereal, etc.

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Suzan Jackson

@livewithmecfs

8 months

Hey, friends - it's been a Terrible Horrible No Good Very Bad Day, physically & emotionally. And when I opened the fridge & the shelf in the door broke, spilling all the bottles on the floor, I just gave up and sobbed on the floor - that kind of a day. Stuck on the couch now.

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Suzan Jackson

@livewithmecfs

5 years

I think my physical illnesses--and especially this pain lately--make me less able to cope with conflict and stress. I just feel emotionally fragile right now, and the smallest things get me down - not at all my usual state of mind! Anyone else experience this?

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Suzan Jackson

@livewithmecfs

3 years

To my #MECFS peeps: I've had COVID for the past 6 days. Cough & congestion improving but worried about long-term worsening. IF you have #MECFS and got COVID, did you return to your "normal" baseline? After how long? Or better? Or worse? Thanks!

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Suzan Jackson

@livewithmecfs

3 years

(1 of 3) Honesty time (since none of my family are on Twitter): I am full of grief, sad, angry & depressed over the way some family members treat me, refusing to ever even acknowledge my illness and how it impacts me.

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Suzan Jackson

@livewithmecfs

2 years

My dear father-in-law died last night at 97. It was his time - he'd lived a long life and had severe dementia. We will miss him but the past 6 months have been very challenging for my husband and I. I visited him yesterday, brought him a milkshake & had a great visit.

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Suzan Jackson

@livewithmecfs

8 months

@peterdawe8 @MindFeast622 Yes, I so agree. She's never understood the severity or seriousness of the disease (and never interested in learning). I'm realizing this is not only hurting me emotionally but making me worse physically, too.

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Suzan Jackson

@livewithmecfs

2 years

I TOOK A WALK TODAY!!! 😯😯😯 After more than three months of severe relapse, I have finally felt back to my "normal" baseline the past few days. Suddenly, that limited way of living seems pretty darn great to me after months of not leaving the couch. Relieved & grateful.

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Suzan Jackson

@livewithmecfs

1 year

Exciting New #MECFS Research: @Cornell got a $9.5 million grant from @NIH for their Center for Ennervating Neuroimmune Disease, which studies ME/CFS. Quick summary here of the 3 projects being funded. Great news! I can't wait to hear what they discover!

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Suzan Jackson

@livewithmecfs

2 years

I feel like crying. I had 5 good days, back to my normal baseline with no aches and able to be a bit active with no crashes, and now I am achy again the last two days, even with lots of rest. Thought I was finally past this bad relapse that began in August. Very discouraged.

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Suzan Jackson

@livewithmecfs

1 year

@oliviaahliv I wrote an article all about it! It includes scientific references at the end, so it's perfect for sharing with your doctor:

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Suzan Jackson

@livewithmecfs

3 years

Mast Cell Activation Syndrome (MCAS) is often a part of #MECFS #longCOVID #fibro #EDS #POTS & similar illnesses. It's caused by immune dysfunction, resulting in allergic-type reactions to foods, environment & more. Treating MCAS often helps many symptoms!

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Suzan Jackson

@livewithmecfs

1 year

Spring means allergies & worsened symptoms! Many with #MECFS and #longCOVID (and some with #EDS , #Lyme & #fibro ) have Mast Cell Activation Syndrome ( #MCAS ), which leads to all kinds of strange symptoms! It's treatable & most trtmts are cheap & available

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Suzan Jackson

@livewithmecfs

8 months

#GratefulToday for YOU, for this amazing chronic illness community, for all of the support, kindness, and understanding you poured on me today, when I hit bottom, physically and emotionally. Thank you - your reaching out means so much. What are you grateful for today?

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Suzan Jackson

@livewithmecfs

6 years

Ugh. Just heard that the children's hospital I worked w/last year to educate & inform them on real treatments for ME/CFS are STILL offering only GET & CBT to their young patients & parents are still leaving there with horror stories. So discouraging. I thought I'd done some good.

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Suzan Jackson

@livewithmecfs

1 year

Lots asking how my son got well enough to work full-time w/ #MECFS , #Lyme & 2 other tick infxns. Long 19 yrs of ups & downs! Here are treatments that have worked best for my son & I over the yrs - we both now function fairly well & live active lives again:

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Suzan Jackson

@livewithmecfs

1 year

Exciting New #MECFS & #LongCOVID Research: Open Medicine Foundation @OpenMedF has new studies, digging into the nitty-gritty of our disease, including exercise intolerance, daily changes, immune dysfunction & more! Here are simple-to-understand summaries

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Suzan Jackson

@livewithmecfs

1 year

Extensive Evidence That CBT and GET (exercise) Are Harmful to #MECFS and #longCOVID ( #PASC ) Patients - A newly published paper pulls together the conclusions from 9 different scientific studies & papers, in a brief paper perfect for sharing with doctors:

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Suzan Jackson

@livewithmecfs

3 years

(3 of 3) ... Though I have just grinned and beared it for decades, I can no longer do that - their attitudes to and treatment of me is just too harmful to me, and it is tearing me apart. I dread the conflict coming but it is necessary. I can't do this anymore & pretend it's OK.

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Suzan Jackson

@livewithmecfs

3 years

(2 of 3) Some family members' way of ignoring/denying the role illness plays in my life is incredibly painful, and I have only just realized it's gaslighting. I am so sick of the fake, shallow relationships they have with me, not allowing me to be honest ...

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Suzan Jackson

@livewithmecfs

7 months

Exciting New Research in #MECFS & #LongCOVID : Open Medicine Foundation @OpenMedF has new studies, digging into the nitty-gritty of our disease, including exercise intolerance, daily changes, immune dysfunction & more! Smple-to-understand summaries:

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Suzan Jackson

@livewithmecfs

2 years

Exciting New Research in #MECFS & #LongCOVID : Open Medicine Foundation @OpenMedF has new studies, digging into the details of our disease, including exercise intolerance, daily changes, immune dysfunction & more! Here are simple-to-understand summaries

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Suzan Jackson

@livewithmecfs

7 months

#GratefulToday for my amazing, thoughtful best childhood friend who knows I’ve been going through a rough time and sent me a surprise care package with this fabulous blanket (❤️ Snoopy) & a game we loved as kids!! What are you grateful for today?

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Suzan Jackson

@livewithmecfs

4 years

@agy_lena I wish my mom and sister and rest of my family understood that I'm not exaggerating my illness...I'm exaggerating my wellness.

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Suzan Jackson

@livewithmecfs

5 years

My heart is breaking for my son who is still struggling SO hard w/his #Lyme & #bartonella treatment. We reduced the dose and successfully got rid of the nausea but joint pain is still there, really low energy, and bart symptoms. Early 20's should be a time of carefree fun! 💔😢

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Suzan Jackson

@livewithmecfs

7 months

#GratefulToday …. SO grateful that I improved enough to enjoy a lovely Christmas with my family (a 90 minute nap this afternoon helped a lot!) And now grateful for my quiet room and comfy bed so I can recover a bit from massive overstimulation! What are you grateful for today?

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Suzan Jackson

@livewithmecfs

8 months

My son is home!!! ❤️❤️❤️ Haven’t seen him in 2 months. Having spent 19 years sick together, we are very close and I’ve missed him (but so thrilled he is able to live independently). Looking forward to a long weekend with the four of us together ❤️

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Suzan Jackson

@livewithmecfs

2 years

So sick of feeling sick! Long crash week(s) and sick of seeing everyone’s amazing Labor Day weekend adventures on social media so …. Let’s share OUR weekend plans!! We’re watching a movie The Lost City - hilarious so far! Here’s to weekends on the couch!

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Suzan Jackson

@livewithmecfs

7 months

Chronic Illness Vlog: I'm Back, Baby! In this vlog, you can see how much better I'm feeling, after months on the couch, and I explain how I figured out what was behind that awful relapse, and the diet change that has helped me to feel so good. How are YOU?

Chronic Illness Vlog 1-8-24: Much Better! The Diet That's Helping...

How was YOUR week?Please note that I am NOT a medical professional and am not offering medical advice. I am sharing my own experiences and what I've learned....

www.youtube.com

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Suzan Jackson

@livewithmecfs

2 years

Exciting New Research in #MECFS & #LongCOVID : Open Medicine Foundation @OpenMedF has new studies, digging into the details of our disease, including exercise intolerance, daily changes, immune dysfunction & more! Here are simple-to-understand summaries

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Suzan Jackson

@livewithmecfs

1 year

Tired of tossing, turning & waking exhausted? #MECFS & #longCOVID sleep dysfunction is caused by endocrine dysfunction & can be corrected so sleep is natural, normal & refreshing. This helps everything! Here's why & how (perfect for sharing with doctors):

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Suzan Jackson

@livewithmecfs

1 year

Feeling a little sorry for myself today so I thought I’d whine to people who understand 😀 I love my family but these whole-family weekends are tough. I feel so left out of everything - can’t drink, can’t dance, can’t stay up late, need a nap in the middle of the day… wa wa wa

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Suzan Jackson

@livewithmecfs

8 months

#GratefulToday for my ME/CFS specialist, a good phone appointment with her, and something to try that will hopefully break this awful relapse and get my immune system back to my “normal.” And for pretty snow this morning. What are you grateful for today?

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Suzan Jackson

@livewithmecfs

1 year

Excellent EDS story on Grey’s Anatomy!! Presented it as serious and disabling, countering one resident who said, “I thought it was just stretchy skin and hypermobility.” Got into spinal instability and spinal fusion surgery. Very well done!

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Suzan Jackson

@livewithmecfs

2 years

Still feeling awful today - super achy and exhausted after a good night's sleep. Thought I was past this relapse!! Feeling so discouraged, I just want to burst into tears. I have phone appts with 2 doctors today and another on Thursday so hoping they can help.

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Suzan Jackson

@livewithmecfs

6 years

Woke up feeling better today so ventured out to Trader Joe's. So freaking exhilarating just to be OUT like a normal person, in the cold air & sunshine, chatting with the cashier, just normal stuff. Feeling so grateful for just plain old life.

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Suzan Jackson

@livewithmecfs

9 months

Great News! @OpenMedF is sponsoring a clinical trial of two already-available meds commonly used for #MECFS patients: low-dose naltrexone and mestinon. Statistically significant with 160 patients, double-blind, controlled, and scientifically valid - yay!

Conversation with Dr. David Systrom on OMF's First Clinical Trial

Today Dr. David Systrom sits down to chat about OMF's first clinical trial, The Life Improvement Trial (LIFT). This clinical treatment trial is a major step ...

www.youtube.com

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Suzan Jackson

@livewithmecfs

3 years

Update: Still battling COVID. My life has been reduced to sleep, eat, sleep, eat, etc. Can't manage to stay awake to read more than 10 min at a time! Cough & chest congestion are improving - just wish I could stay awake! Very worried about my FIL, still fighting COVID at 96.

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Suzan Jackson

@livewithmecfs

2 years

@ElizaCharley 😯😯😯 When I first got sick and was practically bedridden at times, my mom would say inane things like "maybe you should take a vitamin" or "try getting outside more."

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Suzan Jackson

@livewithmecfs

2 years

#GratefulToday for kind, generous, caring friends who gifted us with a cleaning! So very nice to have the whole house clean at once and not to worry about how to clean before Christmas! What are you grateful for today?

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Suzan Jackson

@livewithmecfs

2 years

Funny enough, just typing out (here) how bad I'm feeling today and what I know I SHOULD do was all I needed. I gave in and am lying flat on the couch with my comfy blanket. Listen to your body! How many times do I need to relearn that?? It's been 20 years ...

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Suzan Jackson

@livewithmecfs

6 years

Ok, this is it - the big weekend is here! My son (with #MECFS & #Lyme ) is graduating from college this weekend! VERY exciting but also exhausting - 2 long ceremonies, super-early morning, family with us for 4 days, and a big party! Wish me luck! So proud of him 😀❤️❤️❤️

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Suzan Jackson

@livewithmecfs

8 months

Very down today, as my month-long relapse somehow gets even worse! Was already worried about managing the big Thanksgiving trip to see family; now in a full-on panic. Aches this morning were SO severe! A bit better now after my nap, but very discouraged. Flat day.

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Suzan Jackson

@livewithmecfs

3 years

Still struggling today & unsure what triggered this sudden crash. I wasn't great before this (haven't been in 13 months), but I was OK. Now, I just feel WIPED out. Emotionally, I am feeling like I can't even try anymore - very unlike me. I know ... listen to my body!!

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Suzan Jackson

@livewithmecfs

8 months

@SusanD1408 I agree - I think assuming it's not that bad and I'm exaggerating is her way of not facing the pain of her daughter being seriously ill. But that doesn't make it hurt less!

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Suzan Jackson

@livewithmecfs

6 years

Mast Cell Activation Syndrome (MCAS) & ME/CFS - a summary of what MCAS is, how to diagnose it & how to treat it. MCAS is VERY common among those with #MECFS & is easily treated, often with excellent results, so it is worth learning about and looking into.

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Suzan Jackson

@livewithmecfs

4 years

Just recorded a podcast with Physios for ME @PhysiosForME @ClagueNjc36 all about Heart Rate Monitoring for #MECFS , including both experts on exercise intolerance & PEM and the experience of patients (including me 🙂). Very informative! Will share the link when available.

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Suzan Jackson

@livewithmecfs

1 year

Orthostatic Intolerance ( #OI ) in #MECFS and #longCOVID (and #fibro , #Lyme , #EDS ) - This video provides an overview of OI (also known as #dysautonomia and #POTS ), tips on how to diagnose, and LOTS of options for treatment. Treating OI changed our lives!

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Suzan Jackson

@livewithmecfs

3 years

ME/CFS and the COVID-19 Vaccines - details of the immune dysfunction in ME/CFS, how the COVID-19 vaccine works & patient experience so far (the missing piece I was waiting for!). I hope it will also help you to make an educated decision for yourself.

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Suzan Jackson

@livewithmecfs

8 months

So my mom just texted to say she’s thinking of me, hoping I’m feeling better, and sending healing thoughts!! 😮 Guess she regrets her terse reply this morning. I know she loves me - we used to be very close. Today’s been an emotional roller coaster!

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Suzan Jackson

@livewithmecfs

1 year

NEWLY UPDATED: Effective Treatments for #MECFS & #longCOVID Summary of treatments that have worked best for my son & I over the years - many are inexpensive & readily available. We now function fairly well & live active lives again:

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Suzan Jackson

@livewithmecfs

6 months

My Experience with the Carnivore Diet, 3 Weeks in #MECFS #candida - In this video, I explain what carnivore diet is & why I'm trying it, what we eat, and my results so far (spoiler: great!), with mention of alternatives like Paleo & Keto:

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Suzan Jackson

@livewithmecfs

10 years

New blog post on #methylation - critically important to all #mecfs patients: http://t.co/qKbsODv72g

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Suzan Jackson

@livewithmecfs

9 months

Still crashed - for over a week now (why??). After watching Ron Davis' talk that I posted on my blog yesterday, I am newly committed to REST and not pushing myself (something I'm not very good at). But it's a beautiful day, so I'm out on the deck in my reclining chair.

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Suzan Jackson

@livewithmecfs

11 months

What now?? Last week was the best I’ve felt in ages: energy! Motivation! Then I woke up this morning exhausted. Had to crawl back into bed an hour later and spent most of the day horizontal. I hate the crazy uncertainty of this illness.

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Suzan Jackson

@livewithmecfs

3 years

#GratefulToday for a peaceful, relaxing getaway, camping at a local park for 2 days. Gorgeous views of the water from our site & fell asleep to the sounds of the water lapping on the rocks. Just what we needed quiet, peace, no stress. #JoyinSpring What are you grateful for today?

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Suzan Jackson

@livewithmecfs

7 years

WHAT???? We just saw a @Jeopardy question about #MECFS - no kidding! And it was accurate, saying that memory loss can accompany CFS. Wow - talk about hitting the big time.

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Suzan Jackson

@livewithmecfs

3 years

@JetRoz @ahandvanish Sounds like you could benefit from treating Orthostatic Intolerance (which causes that crazy high HR!) - we all have it and treating it is life-changing and will improve your quality of life & allow you to do more:

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Suzan Jackson

@livewithmecfs

2 years

#GratefulToday --so very grateful--for a kind, compassionate, smart doctor who immediately replied to my e-mail this morning, called me later & had some ideas on how to treat this horrible, unending, mysterious crash. Hoping better days are ahead. What are you grateful for today?

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Suzan Jackson

@livewithmecfs

3 years

My Lyme specialist wants to try IVIG & said my insurance will cover it, based on my labs. I know my ME/CFS specialist uses IVIG for some patients. I'm interested in patient feedback! If you have had IVIG, did it help? How long did effects last? Any downside? Thanks in advance!

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Suzan Jackson

@livewithmecfs

7 months

@ThePOTSPostman Yes - exercise!!! I really miss being able to take long hikes. Even at my best, a mile is about my limit these days. And I used to go backpacking! Would love to do that again.

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Suzan Jackson

@livewithmecfs

1 year

I love how the bright yellow of the forsythia looks against the brilliant blue #sky365 #JoyinSpring

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Suzan Jackson

@livewithmecfs

6 years

I ❤️ my family doctor. She was the first one who recognized I had #MECFS 15 years ago, after a slew of specialists sent me away, with no clue. Today, for a ck-up, she spent 30 min w/me (& she is SUPER busy now), listened & even suggested something for this crash. A keeper.

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Suzan Jackson

@livewithmecfs

2 years

#JoyinAutumn Gorgeous fall colors along the lake today

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Suzan Jackson

@livewithmecfs

2 years

@the_tweedy EVERYONE with #MECFS (as well as the doctors and researchers in this field) knew #longCOVID was coming. So frustrating to see article after article saying what a surprise this has been.

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Suzan Jackson

@livewithmecfs

4 years

When I am badly crashed/flared, I feel too fragile for mainstream social media and just limit myself to chronic illness communities. They are my safe place, I guess. Do you feel the same? Thanks for being there for me 😀💙

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Suzan Jackson

@livewithmecfs

2 years

Merry Christmas from our house to yours!

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Suzan Jackson

@livewithmecfs

6 months

We got another 6 inches of snow today! Most we've had in over 3 years 😮 My husband and I enjoyed a walk in the winter wonderland, and LOTS of birds enjoyed our bird cafe in the snow. #nature365 #JoyinWinter

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Suzan Jackson

@livewithmecfs

4 years

One of my all-time favorite quotes, that I used to read before bed every night, feels very appropriate tonight: "Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow'." - Mary Anne Radmacher Good-night!

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Suzan Jackson

@livewithmecfs

1 year

@jannamoen That's an autonomic specialist who is used to working with people who have OI/dysautonomia from other sources, not ME/CFS. Try another doctor. Either a cardiologist or most primary care docs can treat OI easily with familiar meds. Share this article:

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Suzan Jackson

@livewithmecfs

9 months

EXCITING NEWS! @OpenMedF is sponsoring a clinical trial of 2 meds for #MECFS & #longCOVID patients, commonly used by expert clinicians: low-dose naltrexone (LDN) & Mestinon - randomized, placebo-controlled, double-blind study that will be published. More:

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Suzan Jackson

@livewithmecfs

3 years

Sickie Selfie! We’ve got such a great chronic Illness community here, I thought it would be fun to share pics of how/where we spend our day. I am in my sick day spot, reclined on the couch, but I dressed in real clothes today (not sweats)! Share your Sickie Selfie!

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Suzan Jackson

@livewithmecfs

1 year

Brilliant blue #sky365 today perfectly sets off all the gorgeous blooming trees in our neighborhood, like this weeping cherry! #JoyinSpring

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Suzan Jackson

@livewithmecfs

2 years

Crisis of Sick Children with #longCOVID and #MECFS - 2 of the families from our Parents group are featured in this article by Open Medicine Foundation @OpenMedF . OMF has some exciting research projects underway & donations will be tripled now thru 11/29!

The crisis of sick children with Long COVID and ME/CFS - Open Medicine Foundation

The Crisis of Sick Children with Long COVID and ME/CFS: We Need Your Help to Fund Research!

www.omf.ngo

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Suzan Jackson

@livewithmecfs

2 years

@clarejdaly I just can't believe all these governments & other organizations removing restrictions & mask mandates - yes, numbers are down greatly from January BUT still at about the same level as some of our previous HIGH points in the past 2 years!

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Suzan Jackson

@livewithmecfs

3 years

Just got the news my 96-year-old FIL (recovering from a broken hip in a nursing home) has COVID. We’ve all been visiting every day & I spent 90 minutes with him today and fed him! I know from lab work I didn’t make many antibodies from my vaccines.

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Suzan Jackson

@livewithmecfs

5 years

#JoyinSpring I almost missed the peak but got back home just in time to see all the flowering trees in the neighborhood in full bloom! A week later, they are all green now (also pretty but in a different way).

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Suzan Jackson

@livewithmecfs

1 year

Many with #MECFS & #longCOVID (and #EDS , #Lyme & #fibro ) have Mast Cell Activation Syndrome ( #MCAS ), which leads to all kinds of strange symptoms & worsened allergies. It's treatable & most treatments are cheap & readily available:

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Suzan Jackson

@livewithmecfs

4 years

#JoyinSpring My lilacs are blooming! Wish you could smell them!

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Suzan Jackson

@livewithmecfs

2 years

#GratefulToday for a great interview w/a student in Canada who chose ME/CFS as the topic of her Psychology paper on stigmatized groups! She was interested, wanted to hear directly from a patient & eager to help spread awareness. Left me hopeful! What are you grateful for today?

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Suzan Jackson

@livewithmecfs

4 years

#JoyinAutumn I was able to walk a bit today! A slow 15 min around my cul-de-sac but enough to see this gorgeous tree in my neighbor's yard in full fall color - I love this season!

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Suzan Jackson

@livewithmecfs

3 years

#JoyinSpring My very favorite sign of spring - bright forsythia in full bloom! LOVE that splash of color!

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Suzan Jackson

@livewithmecfs

1 year

Heart Rate & Post-Exertional Crashes in #MECFS #longCOVID #OI #POTS - One of my most popular posts (in 17 yrs!) explains how HR relates to exertion intolerance, how to use a HR monitor to prevent crashes, how to improve stamina & choosing a HR monitor:

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Suzan Jackson

@livewithmecfs

3 years

@annitht 😡😡😡 How horrifying!!! Sorry you had to go thru that (& glad you have a sense of humor!!). You might try seeing a cardiologist to treat the OI (of which POTS is one type - you likely also have NMH) - treating OI made a HUGE diff. for us (and many others)

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Suzan Jackson

@livewithmecfs

6 years

Oh! I almost forgot my biggest news from today! I walked all the way around the block for the first time in 8 weeks! It was slow (perhaps even plodding) but I did it and am feeling OK still. Hurray!

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Suzan Jackson

@livewithmecfs

3 years

Taking a little alone time out on our screened porch on my birthday to relax and enjoy the quiet. Quite a bit different from my younger days when I spent my birthday partying with friends! Quiet solitude is the best gift my family could give me now 😆😆😆

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Suzan Jackson

@livewithmecfs

3 years

Wow, this is an outstanding brief video about ME/CFS and COVID long-haulers. Great job, @Rivkatweets !! Perfect for sharing, to help others better understand.

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Suzan Jackson

@livewithmecfs

2 years

@MayhemMonza There is a very high incidence of EDS in those with ME/CFS though even the experts aren’t sure why - perhaps genetics.

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Suzan Jackson

@livewithmecfs

1 year

@DiaryofaSickGrl I find with casual acquaintances that this works: "About the same - ups and downs." I might add something vague but accurate like "the past six months have been worse" or "I went through a bad relapse last year." I try to sound matter-of-fact, i.e. "this is my reality."

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Suzan Jackson

@livewithmecfs

4 years

#JoyinSummer A yellow butterfly enjoys one of my neighbor's flowers

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Suzan Jackson

@livewithmecfs

2 years

#GratefulToday that my father-in-law is finally at peace (Tuesday night) after a long battle with dementia. He lived his 97 years to the fullest, and I'm grateful we were able to care for him these last years (pic was his 95th birthday) What are you grateful for today?

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Suzan Jackson

@livewithmecfs

4 years

@CaroleBruce17 18+ years - since March 1, 2002. 16 years for my son.

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Suzan Jackson

@livewithmecfs

8 months

Gifts Created By and For Spoonies (for others, too) - NEWLY UPDATED! I updated my list of spoonie creators, with loads of great gifts for everyone on your list - or for a little self-care for yourself. We may be sick, but we're a creative bunch!

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Suzan Jackson

@livewithmecfs

2 years

Attention all #chronicillness #spoonie creators! If you have items/gifts available for sale this holiday season or know of others who do, please send me a link. I'm thinking of putting together a "buy from spoonies" blog post after Thanksgiving. I know I'm a bit late, but ...

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Suzan Jackson

@livewithmecfs

1 year

#GratefulToday that I was able to attend my cousin’s wedding- first marriage for he & his bride, both in their 60s ❤️ And, friends, I danced!! I was the only one out there in mask and heart rate monitor but I did it! Had a blast with my family! What are you grateful for today?

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