Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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My CFS blog: Tips for others on how to help, remedies, my experience

Discussion in 'Lifestyle Management' started by Sam1, Nov 6, 2017.

  1. Sam1

    Sam1

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    This is my personal blog I started a couple of months ago. It explains my experience of living with mild CFS for 2 years. I'd say it's more for people who have just discovered they have it, or for others struggling to understand someone close to them that has it.

    I tried to outline the basics, kind of like a 'CFS for dummies'. It's also been an act of journalling so it might be a little long for some. Its split into chunks so hope that makes it a bit easier to access.

    The posts might also be handy things to share with others if you are struggling with how to explain it and I have linked to other sources of help and advice.

    meandcfsblog.wordpress.com

    I have 4 posts so far:
    -Understanding Chronic Exhaustion
    -The long and winding road to CFS help
    -What have I tried? Further Remedies for Chronic Fatigue
    -CFS?ME: How can you help?

    I hope it helps someone!
     
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  2. Diwi9

    Diwi9 Senior Member

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    It's clear you have put an enormous about of time into your blog. Thank you for sharing. I particularly enjoyed the post "CFS/ME: How can you help?" Well done!
     
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  3. Mary

    Mary Senior Member

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    @Sam1 - I just looked at your blog very briefly - definitely a major amount of work! I only looked at one section, but just ordered the book and CD by Paul McKenna, "I can make you sleep" that you recommended for sleep (my bete noire) - thanks so much for posting! :thumbsup:
     
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  4. eric_gladiator

    eric_gladiator Senior Member

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    Excuse me but I can not find a link to the blog
     
  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  6. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I'm impressed with the depth and detail you covered, but I found too many walls of text. Could you possibly break up your paragraphs so they are no more than four or five lines each? That would make it readable for a lot more patients with ME. Thanks.

    There's one more way people can help someone who is on the moderate or severe spectrum: Bring us a meal or some fresh vegetables and fruit. Be aware we may be too sick to socialize when you drop off food.
     
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  7. Sam1

    Sam1

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    Ooh great, let me know if it helped!
     
  8. Sam1

    Sam1

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    Thanks for the feedback, will do! This was always my problem in my studies- having too many words
     
  9. Sam1

    Sam1

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    Thank you so much, that's good to know! :)
     
  10. Mary

    Mary Senior Member

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    I will. It should arrive in a day or 2. I had to get a used set, they don't make this any more, but was fortunate to find one that is supposed to have an unused CD with the book.
     
  11. jstash

    jstash Senior Member

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    Hi Mary - if you're able to post your thoughts on the effectiveness/helpfulness of this then it'd be much appreciated, I've been thinking of delving into something like this myself. Of course don't worry if you'd rather not / if it's not good energy-wise.
     
  12. Mary

    Mary Senior Member

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    I'd be happy to post my results. :) I'm sure it will take awhile to notice any benefit - I'm guessing at least a week. I do take a ton of supplements for sleep already but need more help. It's a long story, last night I added in arginine and ornithine and slept better than I have in many days. So it may be difficult to sort out what is doing what, though in a way I don't care, as long as I can sleep! :sluggish:
     
  13. Mary

    Mary Senior Member

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    @Sam1, @jstash - I've been using the Paul McKenna CD at night before bed for 8 or 9 days now. I think it's helping a little, I'm definitely going to keep doing it. It would not be enough on its own, but I'm always asleep before the CD ends, though waking up and getting back to sleep is a different matter.

    FWIW, I cut out the arginine at night. I think it started to contribute to insomnia. But - I am doing one new thing which is helping quite a bit, and that is CBD oil. I initially tried using a full dose (15 drops - big mistake!) before bed maybe 2 months ago and was a mess the next day, wiped out, spacey, etc. I later tried lower doses before bed and in the middle of the night without good results and stopped it altogether. Then somehow I got the idea to take it during the day, and taking low doses during the day is helping my sleep at night. I tried 3 drops after breakfast and lunch, and then 5 at dinner and 3 before bed, but was too tired etc. the next day. So now I'm doing about 2 drops after meals (I put them on my hand and lick it - it seems to be the easiest and most efficient way - of course my hands are clean!) and then 2 before bed. I'm really sensitive to most meds.

    And also take a cocktail of other supplements (niacin, l-theanine, inositol, glycine, 5-htp, and also 12 mg. trazodone in the middle of the night, which I hope to get off of soon). And I take varying doses of Seriphos (phosphorylated serine, not phosphatidyl serine) in the morning but I am needing less of it now, I think due to the CBD oil.

    This is the CBD oil I'm using. I did a lot of research and this seems to be a good company (and their product works!): https://bluebirdbotanicals.com/product/classic-hemp-cbd-oil/
     
  14. jstash

    jstash Senior Member

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    Thanks Mary - I was literally just thinking the other day about how you were getting on! Many thanks for posting your experience - this is especially timely as I've just had a night of two hours sleep, which was not pleasant. Out of the ordinary for me, but very perplexing. Thanks also for adding the context of other things you're taking too, I think I will probably try and hunt down this CD...
     
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  15. Mary

    Mary Senior Member

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    Good luck @jstash! I've had some nights of 2 hours sleep so I know how you feel :(

    One more thing I was going to suggest is a pose (sort of like a yoga pose) on this thread. It really did help a lot after a few weeks, but then it started boosting my thyroid .... anyways, here's a thread I did about this, you might want to try it out. Also the naturopath who told me about this said that doing the pose for 20 minutes was the equivalent of getting one hour's sleep. I've been doing the pose again the last week and it is very restful and I feel better after doing it. http://forums.phoenixrising.me/inde...-to-calm-balance-ans-stimulate-thyroid.52258/
    But don't do it at night, it be can be stimulating then. I try to do it mid-day or by 4:30 at the latest.
     
  16. jstash

    jstash Senior Member

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    Great - thank you! I actually read about this on your original thread, and tried it out a few times, it definitely seemed to help, so thank you for posting. One thing that I got out of the habit of doing in the face of trying a few other things for assorted symptoms, but I shall add it back in to my routine today, perhaps for an after lunch rest. Thank you again.
     
    Mary likes this.

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