Questions for those in recovery or getting better
Posted , 14 users are following.
Those of you who are getting better, in recovery or feel that you're fully recovered I'd like to ask how you did it? What helped you the most? What do you recommend?
You are very important people to us because you're our teachers!
Also those of you who want to ask them questions please do. We could get some good recovery dialogue going here.
3 likes, 67 replies
andrew22534 GeorgiaS
Posted
GeorgiaS andrew22534
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I find it very difficult to meditate; my mind wanders or I get too sleepy, but Jorathinum, above, suggested some youtube meditation videos, which are good. Mindfulness, I know, is very good because of being in the moment and not fretting about the past or future.
Do you follow a Mindfulness programme or just do it yourself your own way?
dragontest GeorgiaS
Posted
Hi
I find staying positive about my condition and having achievable goals like aiming to go around some of the supermarket rather than sit in the car waiting, or doing a little bit of DIY. or standing in the greenhouse for 5/10 minutes just looking at the plants growing...
A lot of prescription meds can give you fatigue so I read all of the tech sheets that come with the meds, and make a note just in case I find I'm being effected by them later on... statins are a fine example of this. I try to avoid various plants from the Nightshade family in my diet also.
I think coming to terms with ME and knowing its nobody’s fault you have it, and there is no magical cure for ME either helps me, everybody appears to handle it differently at different stages of their illness.
My Doctors on the whole have been worse than useless at helping me with ME/CFS. Specialists in neurology at the hospitals, have confirmed I have ME but could only give me advice to “go home and potter” so it really down to me to survive the terrible condition that I have developed known as ME.
I was totally bed bound at one stage nearly 20 years ago but managed to build myself up to the point I’m not asleep for 20 hours a day, I might be in pain and with brain fog 75% of the time, but I fight to stay out of the bed or off the sofa, as my father once told me “it’s a good day if you can see yourself in the mirror” at least your alive… so today is a good day :-)
GeorgiaS dragontest
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Achievable goals is a good point. The amount of times I've set goals and failed I can't count! My head tells me I can do things that my body can't do. I'll work on that one, thanks!
smitkit GeorgiaS
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I'm currently at a point where I don't whether to be very realistic about my limitations. But sometimes when I push myself to do things I enjoy them so much and just forget about everything for a short while. I've previously found the Viridian High Five very good as well but it doesn't seem to be helping at the moment.
GeorgiaS smitkit
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Sometimes when I'm feeling desperately like falling asleep I fight it because I know that when I wake up I'm going to feel horrible again for a while. Wake up for me is always horrible and I'm a state of confusion and fear.
willthethrill18 GeorgiaS
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GeorgiaS willthethrill18
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What does PEM mean? I'm not familiar with that abbreviation. You sound so positive, keep going. I heard a phrase from someone that stuck 'If it works keep doing it'. I'd like to add if it doesn't work don't, although I'm very bad at putting the advice into practice myself.
willthethrill18 GeorgiaS
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GeorgiaS willthethrill18
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rachel04193 GeorgiaS
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rachel04193
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wknight GeorgiaS
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This past weekend I achieved a milestone when I cycled 20 miles, I use to be able to do 60 miles. here is how I got there
I tried the the counsellor with CBT which helped change my outlook. I have been absolutely lousy at pacing myself but it has been the key to my success. For 5 yrs I continually boom then bust, doing too much when I felt good and then ending up in bed for days. My GP suggested resting for 30mins at a time doing absolutely nothing but I found that difficult but I did mange to do it eventually. I was determined that i wasn't going to let this stop me doing what I enjoyed doing so its been a huge amount of will power as most of he time I feltl like doing nothing and I use to work in overdrive.
I read a medical study about dark chocolate and regularly eat Lindt 85%
The cycling I started out at 5 mins very easy indoors on a trainer using a heart rate monitor. Over the year I have gradually increased it and there have been a few ups and downs but it's helping make me feel better.
i use a FITBIT to monitor my sleep to ensure that I get around 8hrs and its so helpful when I start sleeping a lot because it helps me picking up the warning signs to take it easy
there is no miracle cure, just take each day as it comes
GeorgiaS wknight
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GeorgiaS wknight
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wknight GeorgiaS
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As for pacing I was absolutely rubbish for about 4.5 years. I then had enough of the boom and bust cycles and decided that if I was going to beat this I had to pace. That is where the cycling came in, that became my exertion for the day. I put the bike on an indoor trainer, set everything so it was really easy and sat there for 5 mins. I can tell you that it was hell the first time. I rested a few days and then tried again. My GP said to use a heart rate monitor so I could tell if I was doing too much. Very,very slowly I started increasing the time and sometimes the resistance. Its taken a year to get me to 15 miles and I felt so good the other day I managed 20 miles although I did suffer a bit afterwards but not too badly. What I am now finding is that after 30mins of exercise I am starting to feel much better.
The nice thing about cycling indoors is that I can get off anytime and no hills. I usually cycle only 2 or 3 times a week as I need to rest in between but its a huge step forward.
If cycling isn't your thing try walking, start with a very small goal and get your body use to it before you increase it and best of luck. Its a very long road to manage this
GeorgiaS wknight
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I have two goals, one trying to get my motorbike back on the road because when I'm riding it I'm sitting down so it's not too difficult and it makes me feel so exhilarated.
Two, finish my degree, I can do that in bed but it's not so exhilarating! Blood, sweat and tears if you must know.