I must say, when you see that someone with such a debilitating conditions as found something that works for them and that has given them so much hope, you shouldn't call them out and say that their approach to their healing is bogus. I know you didn't use those exact words but it's pretty much what you are implying. I would think that someone who obviously has ME as well would respect that and understand that.
Everyone's body is so different and why works for one person might not work for another.
I am new to this website and these forums and I feel like how you approached me was very unprofessional and disrespectful. I'm probably going to delete my account.
I know that post wasnt directed to me at all but I do want to comment on your comment. Try not to allow any negative comments bother you and your own experience of your illness.
I agree its a real pity cant share their experiences without others feeling like that sharing is a negative one in some way eg could have negative impacts towards what others think of our illness.
On the hand some of us are very ill,
some are even dying due to this illness, some of us have all kinds of "testable" complications of this illness *** this why you may get some negative feedback when posting your story of how you got well with just what it appears you did as it does end up making drs when they read such stories leading to think that the rest of us will improve with just pacing, postive thinking and psychological treatments eg meditation is a psychological treatment.
It does appear that it was also pacing which helped you, most of us would agree that pacing can be a great help with this illness. It can stop some from getting worst and give others more of a chance to start to heal from this.
*** for example for testable findings with this.. I have extremely low blood sugar at times with it on tests, I have POTS, I have severe (up to near 200) orthostatic hypertension.. due to this it was I think that I had an issue show up on an eye scan which puts me at risk of sudden blindness, I also get BP drops down to 0...this swinging BP issue to to the ME puts me at risk of heart issues. I also have other abnormalities on tests due to this illness.
In my case I was actually a yogi before I got ME. My life consisted of meditation THREE times daily, 20mins to 45mins at a time. The things which worked for you, didnt work for me at all (I have lots of CBT in the form of DBT which includes CBT). Being a yogi, I used to hold positive thought patterns etc etc
Its fear which will cause some to react negatively to your post.. fear that drs and researches who read how you got well by these things will not take our own illness seriously which puts some of our lives at risk. So try to not to get annoyed or bothered at this yourself but rather try to understand where their comments are coming from.
All I did was ask about people's stories.
Thanks
If you want to hear other peoples stories I will share mine more.
I was studying natural therapies when I got sick, it was my dream to be a healer. I'd had mono 11 years before and missed a whole term of school due to this but didnt get ME from that but that was a clue that I had something wrong with my immune system. Other clues something was wrong with my immune system before i got sick though I appeared very healthy was vaccinations in my case didnt take and hence i had the hep B vaccine so many times due to this (as far as I know it still didnt take), that vaccine was deemed fairly necessary for those entering the health profession.
I started to get sick, mine was stressed induced at first.. while working on hard college assignments I'd come down with "a virus", whenever I had to do an exam and was studying hard, I'd come down with "a virus".
Too many late nights during intense study periods I believed knocked my immune system down some. Doctors over and over diagnosed me has having some virus every time I'd come down with extremely high fever and all the other symptoms. After more then 9 months of this and of getting so many viruses, I knew it just wasnt possible that I had caught another virus, this was the same thing flaring over and over again. At this point I realised myself on research that I had ME/CFS.
As I was studying at a natural therapy college, I had all kinds of treatments at my disposal from the first time I become ill, well before this went into a full time illness, I had teachers who were chinese medicine practioners, I had teachers who were western herbal medicine practioners, I had teachers who taught homoepathy, over time I sought advice from them all. I also had my yogi teachers and their meditations for relaxation and others for health and visualisation. I also was doing yoga and tai chi at that time. Nothing helped and in fact I just got worst.
I know now what I did wrong... I should of probably quit my studies, I was leading a way too busy life as a single parent of 2 young children, both with severe medical issues, one of my children is quite disabled due to a gene mutation I have (MTHFR double couple of the worst mutation of it so my child has like spina bifida). I enjoyed my studies though and had a big dreams so I was being like a super woman. I did though spend a week in bed when I needed to do so but as soon as I felt better, right back to college and studies again.
I should of cut back on the lifestyle I was leading eg paced better. Within a year of pushing myself throu collage I then ended up with this illness full time and found myself bedridden. I was so sick I could of died, I was going comatose for days at a time not waking to drink or eat. My own 9-10 year old child become my carer. I spent most of 9mths in bed, rarely leaving it, my daughter leaving a potty by the bed, it would take me hours to crawl to the toilet otherwise.
I did recover from that over time, fully recovered to the point I even did a 100km fund raising marathon without ill affects. It was aggressive rest therapy which helped me to get well (resting more then one feels one should, enforcing rest and trying not to use extra energy at all times), .. from the start my body seemed to have some ability to fight whatever this was as it had taken a near year to become a full time illness and would just occur in bouts (possibly some dont have this ability to just recover like my body did?)
I was well for 2-3 years, went back to a completey normal life before I got sick again (due to catching a just an ordinary thing which was going around) and this time nothing at all helped. Resting would just help me to not get worst but didnt help me actually improve on my base line.
I started to get emotional issues with the ME/CFS to the point I then ended up getting a wrong diagnoses of having a personality disorder. It turned out thou to be food issues causing my mood swings, I had big issues with hyperinsulinemia and carbohydrates.
Other of my mood issues was caused by hormonal abnormalities I have (exessive estrogen and I react negatively to that.. I have PCOS and PMDD), it wasnt any negative thinking going on causing my mood issues but rather my bodies reactions to things and the hormonal issues.
I also had issues with hypogycemia (with blood readings at such a low level they were almost low enough to cause some to go unconscious).
I also developed POTS, severe hypotension, severe hypertension, MCS, (Id had FM on the first bout of this illness but it didnt come back the second time), had the worst rombergs test result the hospital neurologist had ever seen, had such abnormal blood lab results coming back that the labs kept on thinking they were mistakes. I get very high adrenaline due to the hyperadrenalic POTS i have (and relaxation doesnt help this at all!! Its postural so its the positioning which helps but once Im high on this it doesnt come down like normal persons does even when Im completely non stressed).
I developed abnormal EEGs (where they measure brain waves) and at this point realised that is why I'd became unable to meditate any more.. I'd stopped being able to do my yogi meditations and it was all to do with my brain becoming abnormal. When I shut my eyes and meditate, my brain patterns do not slow down now like a normal persons even though I have YEARS of experience in meditation. (hence why I dont believe meditation can work for all of us). At sleep too my brain would be abnormal.
Where I am today.. well Im still declining. I cant pace the way I need to pace. Not cause I dont know how as I know how to pace well but more so just to live Im exceding my daily limits. I now require home support, I do get some but it just isnt enough for me to be able to pace as I need to pace. I can no longer get to medical appointments as Im homebound so all the problems, some serious that Ive developed with the ME cant even be managed.
I end up in hospital a lot needing a drip and have to be ambulanced there after collapses due to low blood volume due to the POTS which is due to the ME/CFS. It takes two people now to take me shopping as I need to be pushed in a wheelchair and I can collapse from this and go into like shock (and need ambulance and drip) if I get a bad chemical exposure.
Im at huge risk as I cant care for myself (I leave my pots on all night due to my memory issues etc etc), Im stuggling just to feed my cat, a cat I keep so I dont get as lonely as I cant leave my house alone as I can just collapse.
that's my story.