Thread by @keikoinboston

1. Day 2 of livetweeting my life to show people what it's like to live with a moderate case of #MECFS. Starting a new thread because the previous one is long.

https://twitter.com/keikoinboston/status/1579484053124022272

2. First thread starts here:

https://twitter.com/keikoinboston/status/1579313130165108736

3. Background:

https://twitter.com/keikoinboston/status/1323047424533925890

4. I think I didn't fall asleep for about 30 minutes after my last tweet last night. I was very tired but it was a little earlier than I usually sleep.

https://twitter.com/keikoinboston/status/1579382338827431941

5. Then I woke up half an hour before my alarm so I think I only got about 6 hours of sleep which isn't enough. If I didn't have to go somewhere today I might try to go back to sleep but I have a dental cleaning this afternoon.

6. For some people 6 hours might be "enough" but for me, I'm still totally exhausted and have woken up already in pain. It feels like I barely slept.

Sleep dysfunction, especially unrefreshing sleep, is common with ME/CFS.

me-pedia.org/wiki/Sleep_dys…

7. I've had delayed sleep phase syndrome since childhood (I was what we called a "night owl" back then). I could easily stay up until 11pm - midnight but as I've gotten older my sleep window has shifted later and later.

8. The last sleep specialist I saw commented that I live on Hawaii time. 🏝 She said I should aim for a sleep window of 5am - noon. I can rarely do this because noise and light often wake me up earlier and if I have to be somewhere I have to set an alarm for before noon.

9. She also said that while it might be possible to shift my sleep window earlier once it's stabilized that I shouldn't expect to ever be someone who will be able to get up early in the morning and jump out of bed. It's just not realistic with DSPS.

10. It's unclear if there's some link between the DSPS and ME/CFS for me.

Circadian rhythm disruption are a problem for some ME/CFS patients, although researchers haven't figured out why.

ncbi.nlm.nih.gov/pmc/articles/P…

11. I managed to stumble to the bathroom to use the toilet and take out my mouthguard and let it soak in some warm water with dish soap. I have TMJ and seem to clench at night. I'm not sure when it started but I got diagnosed after I got sick.

me-pedia.org/wiki/Temporoma…

12. I think a massage therapist I was seeing had commented on how tight my subocciptial muscles were. She was able to release them but they always tightened by my next appt. I talked to my dentist and he said I definitely had TMJ.

13. I'm now back in bed because my sleep inertia is high. When I don't have to be anywhere it can take me hours to get out of bed except to use the toilet.

sleepfoundation.org/how-sleep-work…

14. I've always had some sleep inertia which I suspect had to do with having delayed sleep phase syndrome that was undiagnosed and being chronically underslept but it's gotten worse since I got ME/CFS.

15. I fortunately haven't had any accidents in bed because I drag myself to the bathroom no matter how exhausted I am. Although in periods when I've been worse I've seriously wondered if I needed to buy a bedside commode chair. 😕

en.wikipedia.org/wiki/Commode

16. I have cottonmouth and I'm dehydrated so I need to drink water. Dry mouth is common in ME/CFS although my issues with it predate my illness.

massmecfs.org/resource-libra…

17. I think that Sjögren's Syndrome was ruled out for me years ago. My doctors think my dry mouth is due to the antihistamines I take for allergies. I'm currently on 4.

18. Dysautonomia is a common co-morbidity with ME/CFS. People who have it often find it helpful to drink a lot of water before getting out of bed.

me-pedia.org/wiki/Dysautono…

19. My last autonomic panel indicated I didn't have dysautonomia but my orthostatic intolerance has gotten markedly worse since I got my first 2 COVID-19 vaccine shots so I'm waiting for another autonomic panel at a different hospital. They can't get me in until September 2023!

20. My MS meds need to be taken with food so I have a granola/breakfast bar then take my meds. Since it got cold I’ve been making tea the day before and keeping it in a thermal bottle next to my bed. It’s lukewarm by the next day but a nice change from water.

21. Today I’m having Republic of Tea’s Good Hope Vanilla.

22. I found out years ago that I have a chronic vitamin D deficiency, something that's common in MS and ME/CFS.

me-pedia.org/wiki/Vitamin_D

An acquaintance with a severe deficiency suggested I request a test because her fatigue is resolved with high doses of vitamin D.

23. My PCP hadn't thought to get a vitamin D level. I was in the deficient range and supplementing with a liquid supplement brought me into the normal range within a few months.

24. My doctor didn't tell me that I'd need to supplement for the rest of my life so when I started having an allergic reaction to my vitamin D supplement (most likely due to blackberry juice), I quit and my level plummeted but wasn't discovered for a while.

25. Unfortunately supplementing doesn't do anything for my energy level (it does for some people) but if I don't supplement my levels will drop to deficient.

26. I've been on higher doses in the past but currently take 5,000 IU of vitamin D3 every other day because I still had a lot left when my MS neurologist asked me to reduce my dose. I had been taking 5,000 IU every day for years on the recommendation of a previous doctor then...

27. Increased to 10,000 IU/day during the pandemic since I was going out so much less frequently and getting a lot less sun and feeling more fatigued. It didn't help with that although oddly I felt like my balance was better.

28. There are some papers that indicate that low levels of vitamin D can help with balance and gait in older people.

ncbi.nlm.nih.gov/pmc/articles/P…

pubmed.ncbi.nlm.nih.gov/32336527/

29. My alarm telling me I ought to get in the shower went off 20 minutes ago but I'm running late because I've been tweeting and my sleep inertia sucks today. Need to drink some more water and hop in the shower even though I'm too tired.

30. For a while I was trying to track how infrequently I was showering so I could report it to my doctors but it got too depressing. I think it's been well over 7 days this time.

31. It's not that incapable of washing myself, but it takes so much out of me I often don't have the energy to get in or feel I can't afford the fallout which can mean hours in bed or a reduced ability to get everything done if I have to go out.

32. Showering feels like running a marathon.

When I was doing better I could usually manage to shower every 2-3 days which was still less often than I would have liked.

33. These days I'm lucky if I can shower once every 7 days. ☹️

Although I'm lucky to be able to shower at all. People with severe ME/CFS can't.

34. Feeling pretty stressed since I'm running later than I wanted to be but I have some flexibility since I was planning to leave early to run some errands on my way to the dentist.

35. Used my combination steroid inhaler for asthma and brushed my teeth. Washed my shaker bottles for the twice daily protein shakes I drink. Showered. Even with a stool it's still difficult.

36. Finished listening to a good conversation between @mattklewis & @EbooPatel "Why It's Better to Build Than to Burn It Down". Definitely worth a listen if you're tired of all the high conflict.

37. If I had time I'd be lying in bed drinking water now but instead I'm trimming my nails which have gotten too long since I normally only trim them after I shower.

38. I've totally slacked off on moisturizing and my skin was dry and flaky and I didn't have time to exfoliate adequately in the shower so I'm still shedding. 😕 But it's hard to care about things like dry skin when you're sick and exhausted. 🤷🏻‍♀️

39. Started another podcast. Scrambling to finish getting dressed so I can get out the door. It’s more of a process than it used to be.

40. I’ve found that compression garments are helpful with my orthostatic intolerance and pain due to hypermobility and other issues. When it’s cool enough I wear a shapewear tank & knee braces to stop me hyperextending as much.

41. I also wear ankle braces which help reduce injuries & pain from hypermobility and the support means it’s less tiring to stand and walk.

42. Lunch would have been nice but I don’t have time so I’ll drink my protein shake on the drive out. Took my probiotics.

43. Made protein shakes for tomorrow and heated up water in case I want tea while I’m out.

44. Had a very short steep walk uphill to my car that exhausted me and left me short of breath so I’m using my albuterol inhaler and resting for a few minutes before I drive off.

45. Wrist braces on. Been having a lot of hypermobility related injuries for years and figured out driving aggravates my wrist pain.

46. Google Maps is telling me it’s a 50 minute drive so I can’t run any errands but at least I should be on time.

47. Got to my dentist’s office. It’s not peak foliage season yet but some trees are changing color.

48. The office is only on the second floor but climbing stairs uses too much energy so I always take the elevator.

49. Masks are still required in healthcare settings here although even where they’re optional I’m still masking because with all my immune system dysfunction and other health issues I don’t need COVID-19 on top of everything else. Recovery time when I get sick is also longer.

50. My hygienist has a beautiful orchid!

51. Teeth are all clean! Now time to run errands.

Going down stairs is easier than up so no elevator on the way out unless I’m really exhausted.

52. Found a 2023 planner at Staples!

Spent a little too long on my feet there and at Trader Joe’s so I’m already crashing but I still have another stop to make and the drive back may be over an hour. 😞

53. Went to a nearby farm with a market and got prepared food for the next week.

54. They also have delicious fresh orange juice. It’s the only time I get orange juice since it’s not great for my silent reflux.

Couldn’t resist the Seattle Chocolate Crunchy Peanut Butter bar. 😋

55. Lots of pumpkins!

56. They’re very busy so I left their parking lot and drove to another store to eat in my car. Debating some more shopping after I eat even though I’m exhausted. If I stay here a little longer traffic hopefully will be less bad.

57. I may have eaten a little too much.😂 It’s always hard to tell how much you’re eating when you’re grazing from large containers of a la carts food. 🤷🏻‍♀️

58. Now I have to pee so I have to go into TJ Maxx/Homegoods. I’m feeling a little bit better so I can do some browsing.

Moved my car closer to the front door so that I’ll have to do less walking.

59. I used to prefer not getting a cart if I didn’t think I was going to buy much but having a cart to lean on and help me keep my balance when I’m dizzy is helpful even if I’m buying only one item.

60. I’ve found that I have issues with temperature regulation since I got ME/CFS. When I get cold, my pain levels are worse. 😣 So layering has been key to keeping my core temp stable. Not sure if this will fit but I’ll getting it and will try it on later.

61. Back in the car. Google Maps tells me I have a 50 minute drive ahead of me. I’m so tired. Only been out for just under 5 hours and made 5 stops. This is a long day for me.

62. Just found parking on another street. Had to drive around the block. Coming back this late makes it harder to find parking.

Wish I could just stay in the car but it’s cold. Need to get my groceries put away. It’s a lot to carry in 1 trip but 2 would be even harder.

63. Finally back in bed in comfy clothes. Probably going to pass out after I drink some water. I didn’t stay on top of hydrating when I was out even though I had water and an electrolyte drink. This probably made me worse.

64. I know better but sometimes feel like I just have to get everything done as quickly as possible and can’t even be bothered with water breaks.

65. I’m too exhausted to eat dinner so I packed up some leftovers along with my evening snacks and I’ll eat it cold when I wake up.

66. I've been eating cold dinners for most of this year after I figured out it wasn't worth a 2nd trip to the kitchen which is 2 floors away. I just pack up all my food when I get lunch in cooler bags with ice packs and my food stays cold for the rest of the day.

67. Obviously this is not ideal but you just do what you have to do when you're sick and barely have the energy to be out of bed. 🤷🏻‍♀️

68. I spent about 8 hours out of bed today which is far far longer than my body thinks is okay. I will be paying for it for days in increased fatigue and increased pain.

69. I could have made my excursion shorter by not running any errands or making fewer stops, but if I hadn't done them today, I would have to do them another day and I barely have the energy to go outside once or twice/week these days. I've been like this for about a year.

70. In the past I've been better and could manage more excursions outside more often, especially if they were shorter. But gas prices make it not economical for me to run errands separately from healthcare appointments.

71. When I've overdone it like I have today, whole body pain sets in sometime in the evening. I can feel it starting now. I refer to this type of pain as "on fire pain" because it feels like I imagine I would feel if I were on fire. 🔥😫

72. I'm not sure if this is definitely a symptom of my ME/CFS or if it's something else that's undiagnosed but chronic pain of all kinds in all locations is part of living with ME/CFS.

me-pedia.org/wiki/Pain
me-pedia.org/wiki/Chronic_p…

73. Now it’s time to turn on my electric body pillow and pass out.

74. I decided to watch tv even though I thought I might pass out anyway but I stayed awake and then decided I was hungry and wanted salt so I've been eating corn chips in bed because getting up for a fork to eat dinner was too much work. 🤷🏻‍♀️

75. Not the healthiest choice but better than lying here hungry. I keep snacks next to my bed for times when I'm too exhausted to get up.

76. I spent some time scrolling through Twitter and closing my eyes but never made it to sleep. Too hungry now. Finally got up to go to the bathroom and got a fork so now I can eat leftover chicken pot pie.

77. Whole body on fire pain is really ramping up. I don’t have any pain meds that work so all I can do is distract myself. Trying pregabalin (Lyrica) but I’m at too low a dose for it to do anything. Having issues with side effects do not sure this is going to work out.

78. My alarm for pregabalin went off. I’m supposed to take it at bedtime but I’m so groggy during the day I thought I’d try taking it at midnight. Not sure it’s really helping much.

79. I’ve been lying in bed trying to distract myself from pain by watching tv. Also worked on hand and arm pain with this little vibrator that seems to be recommended a lot by OTs for post-surgical scar massage on hands.

amazon.com/gp/aw/d/B07HN5…

80. I bought it when I was still struggling with pain more than a year & a half after a muscle biopsy where the sample had been taken from my thigh. I'd tried professional massage & acupuncture and while it helped, my leg was still aching between appts.

https://twitter.com/keikoinboston/status/1154415395798953984

81. The surgery was part of my long saga leading up to my ME/CFS diagnosis. I had been sent for it because one of my doctors thought I had mitochondrial disease. I don't, but the test results that led to that guess is likely due to mitochondrial dysfunction related to my ME/CFS.

82. I think I was using it in 10 minutes sessions (based on a recommendation from my chiropractor) on and around my scar and on the inside of my thigh where some of the muscle pain was worst and was surprised to get almost immediate relief.

83. I can't remember how long I used it for scar massage before I stopped needing it but it was much more effective than I thought it would be and I was kicking myself for not buying it sooner. I'd been looking at it for a long time.

84. Would recommend to anyone struggling with scar pain.

The one downside is the cap always pops off when I'm using it with the cap on (better for larger areas) and I haven't found a good solution to keep it in place.

85. The silicone tips on the attachments can also pop off while using them which is annoying. I've had the most problems with this when using the flat one. But I paid $25 for it and it's the cheapest therapeutic massager I've seen.

86. Dental visits flare up my
TMJ. Fortunately not having much jaw pain today but my jaw muscles are very tight so I used it to work on my face as well. It's not ideal for all areas because of the shape and strength of the vibration but it helps with a lot of areas.

87. I actually use a more gentle vibrator that's marketed as a sex toy 😆 to deal with some of the other face pain the Norco massager can't reach or is too strong for. I stumbled across it on Urban Outfitters' website when I was looking for something else.

88. Looks like it may be discontinued since I can't find it on Smile Makers' website.

avvenice.com/en/smart-home/…

89. These are just some of the massage tools I use on my hands, arms, face, and scalp. One is actually a baby teether. There’s also one portable one I use on my neck.

90. Now distracting myself from pain with games.

Mild headache has set in. Not sure why. Headaches are common in ME/CFS. One of the new doctors I have an appt with is a headache specialist. Hoping for some answers.

me-pedia.org/wiki/Headache

91. I'm really tired and I feel like I might be able to sleep but I'm not ready for bed. I forgot to mix my fiber supplement earlier so I just did that and still need to drink it. Have more snacks to finish as well and then I need to brush my teeth. 🥱

92. Decided to learn some easy #origami envelopes. The one in the right needs to be glued and I was too tired to get a glue stick.

93. Doing origami is great art therapy but can aggravate my hand and arm pain. I figured these were fast enough models to not be a problem. Unfortunately the paper I grabbed smells terrible. 🙊

94. Caught up on a couple of controversies. When I was listening to one I was thinking of the "Motorcycles Are Everywhere!!!!!" bumper stickers and wondering if anyone has made a "Racists Are Everywhere!!!!!" bumper sticker? 🤔 (Note that the story was not about a white racist.)

95. Yesterday I ended up down a craaazy rabbit hole of a virulently anti-Japanese Asian American. Every time I come across these people I continue to be baffled by the people who insist only whites are racist. This was among the worst anti-Japanese racism I've seen in my life. 😧

96. Did some archiving of some controversies while eating snacks.

Now going to try to focus on finishing snacks and fiber so I can brush my teeth and try to sleep.

97. A little while ago I hit the point of being so tired that getting ready for bed is so hard. Struggling to stay awake to finish the whole process. This is a common problem when I've overdone it and why I usually have to nap on those days.

98. Finally ready (more or less) for bed. I forgot to use my nasal sprays (allergies) but I'm too tired to deal.

Of course I'm at the point of tired where it's sometimes difficult to sleep. Current pain level doesn't help either. Hoping the exhaustion will override the pain. 😕

99. Day 3 thread starts here. A lot of it will be about PEM (post-exertional malaise).

https://twitter.com/keikoinboston/status/1579871007900598273