Bedbound for about three years with ME/CFS, now housebound and somewhat better
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 8 years
- Last post
- Jan 2019
In their words
- Condition: ME/CFS
I have severe M.E./cfs
In context ↗ - At worst: Very severe
he had to sometimes wheel me to the bathroom, dress me, he made my food, sometimes had to shower me
In context ↗ - Now: Somewhat better
I am now severe/moderately ill which is a HUGE improvement. I’m still housebound 98% of the time but I can actually get to the bathroom and make my own breakfast and even walk the dog!
In context ↗ - Began after: nothing they could name
Honestly my cfs started with just exhaustion.
- Says they never had: Anxiety & low mood
depression was brought up, but it wasn’t like that
Read from 16 of their posts and comments; links to the 13 this page draws on
Summary
Tide 92350 fell ill with exhaustion at about 14 and was diagnosed with ME/CFS after extensive testing. A three-week rehabilitation course in 2014 left her severe, and she was bed bound for about three years, needing help to wash, dress and reach the bathroom. After her boyfriend became her carer in December 2016 she improved to moderate, housebound but able to make breakfast and walk the dog; by September 2018 she was still moderate to severely ill.
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What they tried
What they credit
Also tried
Their words about each treatment
- saving energy · Helped
He’d do almost everything for me so I could finally save some energy and it paid off.
In context ↗ - intermittent fasting · Worse
the problem for me is that I don’t do anything so you just think about how hu Gry you are all day long and eventuelt I got sick from it.
In context ↗ - vallergan · No change
I’m on an allergy med called ‘vallergan’ which is supposed to make me tired but it doesn’t help me fall asleep.
In context ↗ - melatonin · No change
I’ve used melatonin and the substitute ceratonin and non of them work.
In context ↗ - diets · No change
I’ve tried literally all of those diets and I ate between 1500-2000 when I gained weight which is the issue
In context ↗ - herbalife · No change
I didn’t eat bread for 6 months whole doing herbalife.
In context ↗ - vegan diet · Not said
I went vegan and train free for a year
In context ↗ - implant · Helped
I just got my period for the first time in 6 years. I hate it. I now remember why I got an implant to start with.
In context ↗ - cutting out gluten · No change
I’ve tried it, for a year. Nothing happened.
In context ↗ - rehabilitation course · Much worse
I now have servere M.E. After I attended a rehabilitation course that lastes 3 weeks.
In context ↗ - low raising energy food · Helped
I try to keep to low raising energy food (f.ex whole oats rather than quick boil). It helps a little bit.
In context ↗ - car sick tablets · Helped
I had to take car sick tablets as normal meds didn’t work
In context ↗ - vegetarian diet · Not said
I went vegetarian for a while but I can’t have any beans or legumes
In context ↗
Approaches: Pacing
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2010 | illness began with exhaustion while at schoolmy cfs started with just exhaustion. I slept all the timeIn context ↗ | Mild |
| 2014 | became severe after a three-week rehabilitation courseI now have servere M.E. After I attended a rehabilitation course that lastes 3 weeks.In context ↗ | Severe |
| 2016 | bed bound, needed help washing, dressing and being wheeled to the bathroomhe had to sometimes wheel me to the bathroom, dress me, he made my food, sometimes had to shower meIn context ↗ | Very severe |
| summer 2017 | improved while her boyfriend cared for her and saved her energyI got a bit better last summer and I have been more functioning while I lived with my boyfriend as he made my days so much easierIn context ↗ | Severe |
| May 2018 | able to reach the bathroom, make breakfast and walk the dog; five days in LondonI am now severe/moderately ill which is a HUGE improvement. I’m still housebound 98% of the time but I can actually get to the bathroom and make my own breakfast and even walk the dog!In context ↗ | Moderate |
| September 2018 | still moderate to severely ill, exhausted by typing on her phoneI am moderate/severely ill and struggle to type on my phone without getting exhaustedIn context ↗ | Moderate |
Adverse events
- Intermittent fasting“eventuelt I got sick from it. The issue with dataingeniør with CFS is that you Get a lot of the same symptoms some days from lacking nutrient.” In context ↗ Made symptoms worse
- “I now have servere M.E. After I attended a rehabilitation course that lastes 3 weeks.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
I Get migrains too.
In context ↗ - Neuropathy & tingling
Still feels like I’m dying when i Get the severe nerve pain.
In context ↗ - Gut problems
I’m always bloated and struggle with my tummy.
In context ↗ - Muscle weakness
it took every piece of will power and strength to stand up
In context ↗
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