ME/CFS with days stuck in a recliner, now managing small activity on many good days
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Jul 2019
In their words
- Condition: ME/CFS
I have genetic anemia then got CFS and mono
In context ↗ - At worst: Moderate
Some days I can fake normal while others I'm stuck in a recliner unable to move.
In context ↗ - Now: Somewhat better
I'm really lucky to be having a lot of good days lately
In context ↗ - Began after: glandular fever or EBV
I have genetic anemia then got CFS and mono
In context ↗
Read from 7 of their posts and comments; links to the 5 this page draws on
Summary
Posted in r/cfs that she has genetic anemia, then got CFS and mono, and has also dealt with chronic pain and IBS. On some days she could fake normal, on others she was stuck in a recliner unable to move. By mid-2019 she had many good days, managing a tiny walk, yoga, reading, dishes and one cleaning task, and got to 4.5 of 8 nights at a local music festival with rest days. She held herself back to avoid needing recovery.
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What they tried
What they credit
Also tried
Their words about each treatment
- awareness meditation · Helped
Thinking this way has greatly improved my mental health through my own journey
In context ↗ - big rest days / pacing · Helped
I had some big rest days in order to enjoy 4.5/8 nights out, but with no set schedule I did what I could and didn't burn out or miss out
In context ↗ - holding myself back / taking it easy · Not said
I'll be holding myself back as much as possible, focusing on forcing myself to take it easy
In context ↗ - morning alarm at the same time · Not said
Something I've tried is to set a morning alarm for the same time and if I'm in my normal level of tiredness I'll adjust
In context ↗ - drinking more water · Helped
I've had luck not getting one in the last decade by drinking more water everyday
In context ↗ - cutting added sugar · Helped
Whenever I get signs of a UTI, yeast infection, or cold/flu I will immediately cut added sugar out of my diet until it's over and it seems to work
In context ↗ - smoothie with protein powder, fruit, and greens · Helped
I plan to help my anemia by changing what I eat before/during my period, usually a smoothie with protein powder, fruit, and greens helps
In context ↗ - yoga · Helped
Yoga is a game changer during cramps
In context ↗ - OTC painkillers · Not said
taking as little OTC painkillers to help my IBS/stomach
In context ↗ - copper IUD · Helped
I got the copper IUD and loved it for birth control
In context ↗ - hormonal birth control pills · Helped
then went on hormonal birth control pills to control the bleeding level. This combo works well
In context ↗
Approaches: Pacing
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | got CFS and mono, on top of genetic anemiaI have genetic anemia then got CFS and mono, have also dealt with chronic pain and IBS.In context ↗ | Not stated |
| — | bad days stuck in a recliner, unable to moveSome days I can fake normal while others I'm stuck in a recliner unable to move.In context ↗ | Moderate |
| 2019-06-06 | managed 4.5 of 8 nights at a local music festival with rest daysI had some big rest days in order to enjoy 4.5/8 nights out, but with no set schedule I did what I could and didn't burn out or miss out.In context ↗ | Mild |
| 2019-07-01 | many good days, daily tiny walk, yoga, dishes and one cleaning taskI'm really lucky to be having a lot of good days latelyIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Sleep problems
my body forces me to get 9+hrs and an afternoon nap
In context ↗ - Pain & fibromyalgia
have also dealt with chronic pain
In context ↗ - Gut problems
have also dealt with chronic pain and IBS
In context ↗ - Post-exertional malaise
I'm still learning to be cautious instead of causing my body to need recovery
In context ↗
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