Looking for recovery/recovering stories

[Cort]

I'm going to spend a couple of months focusing on Treatment articles on Phoenix Rising and I'm reviewing the literature and looking for people who have recovering/recovering stories..All stories can be anonymous or use pseudonyms.

I'm basically looking for the following facts

• When did you get ill?
• How did it happen?
• How ill did you get at your worse?
• What helped to turn things around?
• How long did it take?
• How healthy are you now?
• What suggestions/advice do you have for people with ME/CFS?

A personal essay that could be posted would be great if you'd like to do that.

Please pm me or email me at phoenixcfs@gmail.com

 

[ramakentesh]

How about a relapsing remitting story - Ive got 8 years of those LOL.

 

[Cort]

Sorry just recovering significantly stories.

 

[heapsreal]

How about a relapsing remitting story - Ive got 8 years of those LOL.

i taut i taw a putty tatt,
i did, i did see a putty tatt,

sorry Cort, i couldnt resist.

 

[Jenny]

How about a story of recovery and then relapse 15 years later?

 

[Enid]

Can't report recovery either - better living with it now under restrictions - same as old family friend who admitted the same after 15 years.

 

[Sushi]

I'm going to spend a couple of months focusing on Treatment articles on Phoenix Rising and I'm reviewing the literature and looking for people who have recovering/recovering stories..All stories can be anonymous or use pseudonyms.

Recovering slowly. That means I am doing more things and have less time here! I'll email you.

Sushi

 

[Cort]

That would be really good Jennie. Looking forward to your email Sushi - and congratulations! Glad to hear of the improvement Enid

 

[heapsreal]

Cort, do u think for us that we can seem to improve as we may have more acceptance of our condition and can now understand our new boundaries??
Dr Bells 25 yr follow up on patients is an interesting 'study' as the ones who said they were recovered werent really as they still had chronic headaches, sleep issues etc but seem to accept this as being normal?? Almost as if they have forgotten what normal is.
I look forward to the your recovery stories.

cheers!!!

 

[taniaaust1]

Cort.. After being a severe bedbound case for 9mths and housebound years, I recovered for several years (the actual recovery process took years and was rather slow but once well I stayed completely well for several years)

In that time I even ran a 100Km marathon (one of the biggest endurance events in the world known as "Trail Walker")without a crash or any ME symptoms happening.

I completely believed I was recovered and had no ME/CFS symptoms, I stopped having to watch myself (I think that is the true sign of whether someone has truely recovered or not.. if they are still having to watch themselves and how much they do, they arent really recovered but rather just managing the illness well).

I think my experience shows even those who believe they are fully recovered and are in fact recovered (I can say I WAS recovered.. I was, I wasnt even prone to headaches, no sleep issues, no ME symptoms at all), there is always a risk that we can find ourselves back with this illness. We are predisposed to whatever this is.

I was a viral onset (originally I kept on being diagnosed with an "virus" of which kind they couldnt work out and on and off virus which with time ended up coming in with full time virus symptoms after excertion. (high fevers, swollen glands etc etc).

 

[Cort]

Acceptance is important - honestly anything that reduces stress is helpful for me because I think with me my stress response system is so whacked out that things go haywire pretty quickly.

Several of the stories I've seen have involved people who've found their boundaries and then were able to slowly expand them. Two did complete rest and then slowly emerged..... A surprising number of stories have involved diet! I was really surprised iwth that - there are some people for whom having the wrong diet is a real killer....Its made me ramp down even more on diet...no sweets, few starches, high protein, high fat, high vegie diet.......

For one person it was thyroid, another it was sleep study that identified the right sleep prescription, for several mind/body stuff was significant....

 

[Cort]

I think you complete recovery/relapse patients are the most interesting! What did you do to get better and could you figure out what resulted inthe relapse?

 

[Gavman]

Hm. I think therapy probably did the most, learning to turn down stress responses is very effective.

 

[justy]

I have a story similar to Taniaaust's i completely (or thought i had) recovered and could swim daily, do day long hikes, stay up all night drinking and dancing etc (although was not as chipper as the others at the end) then i got ill again 8/9 years later. I didnt do ANYTHING the first time to recover - i wasnt diagnosed, there was no internet and i read one book about M.E and thought it sounded right. Got my diagnosis last year after 17 years. Last 4 years ive been the illest ive ever been. Recovery is possible - but i dont think cure is. We always have to be careful. It was a virus that put me back in bed 4 years ago and am slowly recovering again now.

 

[Cort]

Thanks Justy. I know someone else who had a similar experience....Good luck with everything....