Rachel @hortonrachel_ Twitter profile

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Rachel

1 year

Patients with #LongCovid #MECFS and other conditions don’t have the patience to wait for clinical trials to validate every single intervention. We need patient-led research that allows us to experiment early and often.

Rachel

@hortonrachel_

1 year

Fun things I’ve discovered/rediscovered recently thanks to twitter: @RTHM_Health @pathizehealth @remissionbiome #TheAcidTest @visible_health What other interesting projects/research/apps for #mecfs and #longcovid am I missing? Please promote your work!

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Rachel

@hortonrachel_

3 years

one of the prevailing narratives about chronic illness is that the process goes: symptoms->diagnosis->treatment->cure->summit everest/publish memoirs/become an inspiration. what has your timeline actually been like? #NEISvoid

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Rachel

@hortonrachel_

2 years

People mistakenly think life with #chronicillness is like an indefinite vacation when really living a life devoid of most goals and responsibilities is mind-numbingly frustrating and not the nirvana it might seem #NEISvoid

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Rachel

@hortonrachel_

9 months

I've had the privilege to talk with loads of chronic illness patients. And I've learned that one of the hardest things to do is switch from high achieving mode to being a patient. A lot of the strategies that helped you be successful pre-illness might now hinder you while sick.

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Rachel

@hortonrachel_

3 years

wow, why am I just *now* discovering @BlairBraverman and her beautiful writing??? this essay encapsulates so many of my feelings about reconciling life with #chronicillness and a love of the outdoors. "fighting to be my old self" pretty much sums up the past 12 years... #NEISvoid

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Rachel

@hortonrachel_

2 years

Can we stop labeling sick/dosabled people as “unreliable” because they have unpredictable symptoms that fluctuate wildly? Can we instead focus on the resilience and skill it takes to roll with that constant barrage of changes and flares?? #NEISvoid

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Rachel

@hortonrachel_

10 months

So much talent lurks in the #MECFS community: phds, researchers, tech geniuses, healthcare experts, many, many more. Sad to see so many sidelined by chronic illnesses. People have been forced to give up tons because of this disease. Hopefully new research puts an end to this.

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Rachel

@hortonrachel_

9 months

Living with chronic illnesses means bouncing back and forth between gratitude (I'm so lucky, things could be so much worse) and grief (this sucks, things could be so much better) #mecfs #longcovid

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Rachel

@hortonrachel_

3 years

Lyme Disease Changed My Relationship with the Outdoors

For Blair Braverman, physical activity was a given. Until it wasn't.

www.outsideonline.com

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Rachel

@hortonrachel_

3 years

#MEawarenesshour it's been 12.5 long years of this, and this morning I had a mini breakdown with a good, cathartic cry. I want answers, understanding, and acceptance for all of dealing with this cruel and confusing condition.

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Rachel

@hortonrachel_

3 years

Being sick is exhausting. When you're used to defining yourself by your achievements, it's a rude awakening to suddenly have to quit everything due to a diagnosis that's confusing and complicated. #MECFS is humbling and often humiliating. #meawarenesshour

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Rachel

@hortonrachel_

9 months

I'm putting together a guide of the resources I wish I had when I was dx with MECFS and covid. I'm including organizations, apps, projects, blog articles, etc. like @remissionbiome @pathizehealth @visible_health articles by @gpanger @LongHaulerBear What's been helpful for you?

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Rachel

@hortonrachel_

8 months

Addressing these things have dramatically increased my quality of life as an #mecfs #longcovid patient: 1. Thyroid dysfunction (I'm hypothyroid) 2. Sleep quality 3. MCAS Here's what I do for each of those:

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Rachel

@hortonrachel_

7 months

People with #mecfs #longcovid do you find you are sweatier than the general population? I was a very sweaty person even before I officially got sick (was probably already dealing with #pots symptoms at that point though)

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Rachel

@hortonrachel_

6 months

What does acceptance look like with #mecfs #longcovid etc? Have you reached this point? Do you even want to reach this point?

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Rachel

@hortonrachel_

8 months

I tested positive for covid a few days ago. Interestingly, earlier in the week, I noticed I was craving @Doritos , a food I hadn’t craved since I last got covid over a year ago. I think this needs to be studied.

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Rachel

@hortonrachel_

9 months

The urge for productivity doesn't lessen when sick. I remember after I got dx w/ #mecfs , I compiled a rather ambitious reading list to work through, and then proceeded to beat myself up for not having the cognitive capacity to withstand hours of Russian literature each day.

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Rachel

@hortonrachel_

2 years

I think of this when people have told me how they want my life, and I think, “no, you want a vacation. Being sick is not a vacation.”

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Rachel

@hortonrachel_

8 months

fabulous news!! if you have #longcovid or #mecfs , have you tried any MCAS treatments? I use quercetin, vitamin c, and allegra (as needed) and have noticed significant improvements. My deathly itchy post-shower skin is largely a thing of the past

Cristina kicking Long Covid 🍉

@Fighting_LC

8 months

So far on MCAS treatment: - less fatigue - less migraines! - wake up feeling less like death - GOOD sleep every night - drove for the 1st time in 6 months!! Read fiction and an easy paper!!! I am in shock. #TreatLongCovid #mecfs @remissionbiome #LongCovid

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Rachel

@hortonrachel_

1 year

@ambernoelle I need a photo opportunity. I want a shot a redemption. Don’t want to end up a cartoon in a cartoon graveyard. SO GOOD

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Rachel

@hortonrachel_

2 years

Also you really start to miss your friends. And acquaintances. And daily interactions with the world. This isn’t a path people deliberately choose.

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Rachel

@hortonrachel_

8 months

The worst gaslighting I've ever received during 15 years of #MECFS is from myself. The constant self-doubt, worrying that I had somehow fabricated this massive life derailment was brutal. Once I started taking myself and my symptoms seriously, things shifted.

Tweets

@ChronicMyalgicE

8 months

The most painful thing about #medicalgaslighting and #medicalPTSS is self-doubt. Am I imagining my disease? Aren’t they right? My own former colleagues (psychologists) think #MECFS is a psychosomatic disorder. …. aren’t they right? I hate this feeling.

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Rachel

@hortonrachel_

8 months

I realized recently as I looked through grief support groups that I have no framework for dealing with the ambiguous and complex losses of a chronic illness life. I've never understood what it meant to grieve in community: up until this point it's always been a solitary pursuit.

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Rachel

@hortonrachel_

4 years

#NEISvoid do you do anything to celebrate illness/diagnosis anniversaries? I'm hitting 12 years since significant onset of symptoms this week, and wondering... do I bake a cake or something? Or just continue googling symptoms and going down rabbit holes of speculative treatments?

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Rachel

@hortonrachel_

5 years

@bennessb Tell a friend about how well you've been sleeping lately. Have horrible insomnia for the next six weeks.

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Rachel

@hortonrachel_

4 years

I was just talking to a med student friend about a mandatory webinar he had to watch on dr-patient interactions. which made me think, fellow #chronicillness people, what do you wish you could tell med students? if you could give a presentation, what would you cover? @bennessb

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Rachel

@hortonrachel_

4 years

#NEISvoid post-exertional malaise is such a conundrum. I can get through something reasonably physical, and then be exhausted for days after. but I never know when to quit an activity because the fatigue doesn't immediately present, and I wind up pushing more than I should!!

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Rachel

@hortonrachel_

9 months

Daily reminder that rest is not just the absence of activity. It's proactive, and really one of the best "activities" I can do to manage my symptoms. Reframing rest as productive has helped me give it the respect it deserves in my daily schedule.

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Rachel

@hortonrachel_

4 years

What weirdly high standards do you still hold yourself to, even post-diagnosis? for example, I still feel the need to clean my entire apartment before people come over, even when I'm exhausted @bennessb #MECFS

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Rachel

@hortonrachel_

2 years

Validating sick people does not make them more sick #psa #NEISvoid #themoreyouknow

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Rachel

@hortonrachel_

10 months

@ElianaUku @Clean_Air_Club_ put together a really good guide on this. I’m trialing nasitrol right now

Clean Air Club

@Clean_Air_Club_

11 months

👃🏽💦 Nasal sprays are an under-used but highly effective layer to include in your covid-safety strategy! 👃🏿 Here's a thread on 4 really effective ones:

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Rachel

@hortonrachel_

8 months

In treating and managing chronic illnesses (and healthcare broadly), never underestimate the importance of stable and safe living circumstances. The stress of needing to move, find new accommodations, deal with roommates, noise, etc can be really taxing for #mecfs #longcovid

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Rachel

@hortonrachel_

3 years

I'm simultaneously sad to see all the fellow #MECFS patients dealing with this cruel illness, and also inspired to see people have the courage to speak publicly about chronic health problems that the public often unfairly maligns. #MEAwarenessHour

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Rachel

@hortonrachel_

4 years

#neisvoid are there any skills, interests, experiences from your pre-illness life that have been especially useful to you in dealing with a chronic illness? I've talked to engineers who used their science knowledge to read papers, my econ studies help me make better decisions

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Rachel

@hortonrachel_

8 months

As challenging as it is to be a patient, I don’t think I’ll ever fully grasp how hard it is to watch someone you love live with diseases like #mecfs and #longcovid and feel so limited in your capacity to help.

Tanya Romanuk

@Tromanuk1

8 months

I feel powerless today in my ability to #caretake for my sister. #mecfs and #LongCovid . It sucks.

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Rachel

@hortonrachel_

3 years

@bennessb wrote about this in 2020:

Disease Begins Before Diagnosis

Lots of people are disabled but undiagnosed, so why don’t we ever hear stories about that experience?

medium.com

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Rachel

@hortonrachel_

8 months

Lack of social support only compounds the overwhelming physical symptoms of these diseases. I remember hearing about people claiming I was faking my illness. It was such a gut punch.

Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

8 months

It breaks my heart seeing young #pwME on here being disbelieved or mistreated by family members. It's such a shitty deal, on top of all the physical stuff. #MECFS #LongCovid

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Rachel

@hortonrachel_

9 months

After getting dx #mecfs in 2008, I had to quit most of my exciting and sporty hobbies. I was a very bored, grumpy high schooler sidelined by a chronic illness no one seemed to understand, and so I used my spare energy for cooking.

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Rachel

@hortonrachel_

2 years

#NEISvoid if you’ve been sick for a while, what are your relationships like now?

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Rachel

@hortonrachel_

3 years

what activities provide you with the opportunity for learning or mastery while living with a chronic illness? #NEISvoid

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Rachel

@hortonrachel_

4 years

recently, I've gotten really good at resting. I used to resist it, despite that resting is an unavoidable part of my life. I now have a little ritual that I do and it's been really relaxing (lots of strategically placed pillows). so, #NEISvoid , what illness stuff are you good at?

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Rachel

@hortonrachel_

3 years

#MyDailyThankYou I had an appointment with my new PCP and he's amazing. Understanding, empathetic, and spent over an hour with me. general theme was "you've been through a lot- how can I best support you?"

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Rachel

@hortonrachel_

8 months

I bought this guitar in 2008. A sort of consolation prize after my #mecfs diagnosis because I couldn't play sports anymore. And after a few months of guitar lessnos, I realized I also coudln't really play guitar.

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Rachel

@hortonrachel_

8 months

Exciting news: I just finished an actual, kind-of-long, non-fiction book for the first time in...months? years? This is a huge accomplishment as a patient with #brainfog #mecfs #longcovid Empire of Pain by @praddenkeefe . Brilliant book. So well-written.

Empire of Pain: The Secret History of the Sackler Dynasty

www.amazon.com

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Rachel

@hortonrachel_

6 years

Had a great meeting with @SenToddYoung and staff discussing CFS/ME awareness and research! Thanks for your support as we work toward finding a cure! #CFS #MECFS @PlzSolveCFS

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Rachel

@hortonrachel_

4 years

today has been rough. one of the toughest things about #chronicillness is the tendency to become so calculated about relationships. if I take the time to see friend X, will I then have the energy to make dinner/shower/work/etc? I want to be spontaneous not transactional #MECFS

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Rachel

@hortonrachel_

3 years

@a_straight_line thank you for sharing your experiences with this. so sorry you're dealing with Long covid and the grief and pain that comes with chronic illness

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Rachel

@hortonrachel_

4 years

@bennessb maybe if I didn't hold self-limiting beliefs like "time travel isn't possible" I would have recovered by now hahahahaha

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Rachel

@hortonrachel_

4 years

@bennessb Yes. Which makes phrases like "listen to your body" absolutely impossible to comprehend, because my body sends so many mixed signals and they often conflict.

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Rachel

@hortonrachel_

3 years

great episode of Everything Happens with @KatecBowler and @suleikajaouad "I felt this pressure to be someone who suffers well, who is able to make something of illness or of my terrible circumstances...wanting to be a grateful patient, a brave patient...a productive one."

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Rachel

@hortonrachel_

7 months

Aside from all my illnesses, I'm actually quite healthy!

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Rachel

@hortonrachel_

4 years

"It is incredible hard to predict what I can & cannot do." YES. Everything changes. All. The. Time. I struggle to accurately assess my capacity for activity in the present moment, let alone a week or month from now.

stable finally, getting irl shit together (hiatus)

@bennessb

4 years

Chronic illness is so weird because I'm simultaneously trying to figure out how to share some of my work in an academic environment and also trying to figure out how to maintain more than one social relationship at a time. It is incredibly hard to predict what I can & cannot do.

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Rachel

@hortonrachel_

8 months

My situation fluctuates. It’s dynamic. Sometimes I can act almost normal. Other times, it’s a struggle to just get off the couch. All these experiences are valid.

Joanna No Banana

@JoannaNoBanana

8 months

Hi chronically ill and/or disabled friends, What's something you wish people around you understood in regards to chronic illness and/or disability?

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Rachel

@hortonrachel_

9 months

Me crashing versus me feeling better. See if you can spot the difference!

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Rachel

@hortonrachel_

3 years

#MECFS is waiting to do something until you have energy, only to realize you've taken an entire month to respond to an email #meawarenesshour

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Rachel

@hortonrachel_

4 years

@bennessb Especially when coupled with, "but I find a way to push through anyway!"

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Rachel

@hortonrachel_

4 years

@bennessb Also, questions like this remind me why I love chronic illness twitter. it's like we use social media as it was intended, to connect with others and learn and relate. thanks for fostering such a supportive community!!!

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Rachel

@hortonrachel_

3 years

thinking a lot about the amazing @KatecBowler and the weird things people say to rationalize someone else's illness. I particularly detest "you just still haven't learned what you're supposed to learn from this illness" what clichés in this area are you most tired of? #NEISvoid

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Rachel

@hortonrachel_

9 months

It's been a rough week. Struggling to balance finding a job and family stress while still taking care of my health. The pressure is getting to me and I haven't slept well. Taking time today to curl up with my breakfast on the couch and watch Ted Lasso. Send hugs.

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Rachel

@hortonrachel_

4 years

@rmh199 this highlights my frustration with medical/wellness communities of all kinds: CFS gets dismissed as being "in my head" in some capacity, either it's really depression/anxiety, or it's just the product of limiting beliefs/a failure on my part to "see myself as well".

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Rachel

@hortonrachel_

1 year

The biggest and fastest improvement I’ve had in 15 years of #mecfs and also months of #longcovid came from changing my thyroid meds. I went from pure T3 (20-25mcg cytomel daily) to naturethroid (1/2 grain 2x daily). Has anyone else had improvements like this from thyroid meds?

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Rachel

@hortonrachel_

8 months

Life with chronic illness is like perpetually being a spectator to the lives everyone else gets to live

Candace D.

@DiaryofaSickGrl

8 months

Being chronically ill has made me feel so forgotten. It feels like people move on with their lives without me and then when they get bored or need something they remember me because I’m empathetic, kind, and make time for people…

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Rachel

@hortonrachel_

4 years

I wish we had better metrics and feedback for evaluating if something is working or not. I've tried countless supplements and interventions over the years, and I still struggle to identify what's worked and what hasn't.

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Rachel

@hortonrachel_

8 months

3. MCAS: mine is pretty mild, but I've had allergies all my life, and used to have horribly itchy skin after showering. I take quercetin, OTC allergy meds like allegra, vit c (and aller-ease supplement as needed) No more itchiness, and I can be around pets without too many issues

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Rachel

@hortonrachel_

8 months

2. Sleep quality improved dramatically with thyroid meds. My current sleep stack is liposomal melatonin spray (.5mg-1mg), l-theanine, and an herbal sleep blend by loomis called SLP. This has (fingers crossed) addressed most of my insomnia issues.

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Rachel

@hortonrachel_

3 years

today I grieve the loss of life I wanted, and celebrate the friendships and community I've met due to this illness. I'd write something more eloquent, but I'm operating on 4ish hrs of sleep because fatigue and insomnia aren't mutually exclusive. #meawarenesshour #MEAwarenessDay

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Rachel

@hortonrachel_

3 years

working on a business while dealing with chronic health symptoms is very exciting and very exhausting. #NEISvoid

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Rachel

@hortonrachel_

1 year

Fun things I’ve discovered/rediscovered recently thanks to twitter: @RTHM_Health @pathizehealth @remissionbiome #TheAcidTest @visible_health What other interesting projects/research/apps for #mecfs and #longcovid am I missing? Please promote your work!

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Rachel

@hortonrachel_

4 years

corona chaos has brought a number of new challenges to life with #MECFS an unexpected upside: usually I resent having to stay home, but now I'm imbued with a sense of purpose, knowing that self-quarantine is my small contribution to a larger health crisis. #MyDailyThankYou

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Rachel

@hortonrachel_

3 years

#MyDailyThankYou just applied for a job, and one of the bonus qualifications is "A personal connection to behavior change, chronic disease, or a health journey". I've never seen this on an application before! So exciting

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Rachel

@hortonrachel_

8 months

This is what's worked for me. Everyone is different! But these categories (thyroid, sleep, MCAS) can hopefully bring about baseline improvements in many patients with similar symptoms.

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Rachel

@hortonrachel_

8 months

I take one dose of thyroid in the morning, and another before bed (roughly 12 hrs after first dose). This has helped significantly with morning waking. I feel much more rested and naturally wake up earlier. I also take iodine, zinc, selenium to support thyroid function.

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Rachel

@hortonrachel_

8 months

I saw this quote from @hanrosols "We do this work because we lived it." It encapsulates the urgency &drive behind @remissionbiome to address #mecfs #longcovid and other infection-associated illnesses. Our team is doing this work because we're (still, in many cases) living it.

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Rachel

@hortonrachel_

8 months

This is the unfortunate reality for so many #longcovid #mecfs patients. Hoping advances in research and treatments (like @remissionbiome is doing) will change this. It’s exhausting to navigate these conditions on your own.

Himmat

@himmatb15

8 months

It's wild to me that I've been fully bedbound for months and months (sick for over two years), have severe LC/ME and just.... don't have a single doctor managing my care. Out here just trying whatever I can and hoping i survive on luck and ✨vibes✨

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Rachel

@hortonrachel_

3 years

#NEISvoid how have you had to adapt your career/educational plans/path to accommodate your health and symptoms?

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Rachel

@hortonrachel_

3 years

@bennessb I think I got poked a lot, and there was some correlation between the areas where I said "ow" and fibromyalgia.

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Rachel

@hortonrachel_

8 months

Obviously there are other factors (hormones, blood sugar, adrenal function, MCAS, etc at play with insomnia). But this combo of supplements helps and I've not needed prescription sleeping meds as a result.

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Rachel

@hortonrachel_

8 months

1. I take USP thyroid from a compounding pharmacy, & add cytomel to increase T3 dose. It took time to get ideal dose, (my doctor is more aggressive than most.) Sx much better w/ higher dose (but not too high!) Also prefer T3/T4 to T3-only.

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Rachel

@hortonrachel_

5 years

@bennessb yes, although the goalposts are constantly moving. I do things now that I would have killed to do years ago, and yet I still occasionally get frustrated that I'm not at 100%. "Getting better" for me is less rigid discipline and more about finding ways to make life more pleasant!

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Rachel

@hortonrachel_

7 months

If you're dealing with #mecfs #longcovid and other complex chronic issues, do your symptoms and/or diagnoses parallel your family members' ? Wondering about this as I debrief with my mom after sitting in on a bunch of her appointments last week.

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Rachel

@hortonrachel_

8 months

This is such a fantastic step for the #mecfs #longcovid #chronicillness communities. Better understanding of complex chronic infection-associated illnesses starts with educating future scientists, researchers, doctors etc. So excited @remissionbiome had this opportunity!

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Rachel

@hortonrachel_

5 years

#mydailythankyou very grateful to get in two short walks today and soak in the beautiful winter sunshine and bracingly cold air. I love these cotton candy-like sunsets #joyinwinter

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Rachel

@hortonrachel_

2 years

How often (if ever) do you do an audit of your current health strategy and review supplements, care team, daily practices, interventions, treatments etc? #NEISvoid #LongCovid #MECFS

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Rachel

@hortonrachel_

2 years

@bennessb On a more serious note, related to @LisaZeidler ’s thread yesterday, tweeting regularly and being part of (or in your case, building and facilitating) a community is one way to work through the pain of chronic illness

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Rachel

@hortonrachel_

8 months

I've given up dreams, careers, hobbies, relationships, parts of my personality. I had no event, ceremony, funeral to mark the transition from healthy young adult to sick patient.

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Rachel

@hortonrachel_

4 years

Why am I so tired, and do I go down the rabbit hole of possible triggers and explanations of dubious credibility? Distract myself with old episodes of alias? Vent on twitter? Continue to beat myself up for not pushing through and finishing work?? Taking suggestions #neisvoid

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Rachel

@hortonrachel_

2 years

@RaviHVJ it’s always asked with the underlying desire on the part of the person asking to make sure these circumstances don’t happen to him. When really complex chronic illnesses could happen to anyone and aren’t the product merely of personal fortitude or one single decision

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Rachel

@hortonrachel_

8 months

On a little hiatus as I deal with covid infection. Will pick back up in a few days and work on compiling all the amazing #mecfs and #longcovid resources that have been shared this week!

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Rachel

@hortonrachel_

4 years

#NEISvoid and #MECFS community: are you able to proactively rest? or are you always catching up from exerting yourself?

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Rachel

@hortonrachel_

2 years

I’m having the best mental health in years after starting treatment 2.5 months ago to address underlying infections. This is after years of therapy, meditation, etc. (all of which are great!) but in this n=1, ultimately no match for tackling infections. #pwme #neisvoid #MECFS

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Rachel

@hortonrachel_

4 years

just like athletes and musicians have to engage in deliberate practice to achieve mastery, I have to deliberately rest to manage my symptoms. #NEISvoid

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Rachel

@hortonrachel_

3 years

Up at 3am, thanks to life with #MECFS . it's cruel that a disease characterized largely by severe fatigue also involves insomnia. making some metaphorical lemonade by checking on my twitter friends. how is everyone??? #NEISvoid

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Rachel

@hortonrachel_

3 years

#MEawarenesshour I've had so many educational and professional opportunities ripped away from me due to this relentless disease....as a kid I dreamed of becoming president one day. now, I mainly dream of some degree of independence.

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Rachel

@hortonrachel_

9 months

Some of the most impressive people I've ever met are those in the chronic illness community.

Zeest Khan, MD

@doctor_zeest

9 months

My followers have bios like Marathoner, PhD in biophysics, reference librarian, Broadway dancer, physician. Patients with chronic illnesses like #LongCovid are not missing work ethic and discipline. We’re missing effective treatment. Give us answers and watch us launch. 🚀

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Rachel

@hortonrachel_

8 months

I've talked to a lot of parents with chronic illnesses, and I hear frequently how hard it is not to be able to be the kind of parent you want to be because of your health. It's heartbreaking.

Candace D.

@DiaryofaSickGrl

8 months

Chronic illness has shattered so many of my hopes and dreams as far as being a wife and mother. I’m grateful I get to be a wife and mother, this is just not how I pictured it going. I just wish I could do more…

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Rachel

@hortonrachel_

4 years

#NEISvoid is clumsiness a sign of something? Or just evidence of my sleep deprivation. I keep dropping stuff, knocking things over, etc. hardly the most severe symptom but curious nonetheless!

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Rachel

@hortonrachel_

3 years

Last night my friends and I gathered round to tell some scary stories, except they were just about our experiences with the medical system. Some very horrifying stuff. #NEISvoid

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Rachel

@hortonrachel_

4 years

Today is my birthday! Milestones are tough- I am grateful for the progress I’ve made, and yet stunned that I still have CFS after all these years. #MEAWARENESSHOUR

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Rachel

@hortonrachel_

11 months

This is HUGE for me. Stress comes in many forms, and I tend to be very sensitive to it.

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Rachel

@hortonrachel_

3 years

@bennessb I still can't get over that I thought it was normal to stand up quickly and basically black out for a few seconds

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