The Lost Years

Sandman00747

Sandman00747

Senior Member
Messages
106
Location
United States, Kansas
21 years, 1 month, 8 days. How can I be so precise? Because I have never felt anything like when I caught this horrid plague. I knew something was extremely wrong from the moment I was infected. One incredible remission last spring for 3 1/2 days where I felt like this thing completely left my body.

The one great hope I have is during those 3 1/2 days I felt completely back to normal so I'm hoping minimal permanent damage has been done to each and every one of us if "they" would ever find the root cause. Keep on keeping on people! One of these years.............
 
MeSci

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,235
Location
Cornwall, UK
Sandman00747 said:
One incredible remission last spring for 3 1/2 days where I felt like this thing completely left my body.

The one great hope I have is during those 3 1/2 days I felt completely back to normal so I'm hoping minimal permanent damage has been done to each and every one of us if "they" would ever find the root cause.
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I had a period of a few months, a few years into the illness I think, when I felt quite well, although I think I knew that it was only temporary.

Quite a few of us seem to have had these periods. If only we knew how to get back there...
 
R

Richard7

Senior Member
Messages
772
Location
Australia
13yrs 7 mnths. My symptoms have varied quiet a bit over time and I do not know I have really had remissions but I have had some periods where my energy levels have gone up and I have been able to do much more, but I have never been able to work our why or how to stay there.

And these improvements have been nothing like being well, just being able to clean the house, or do gardening or go for a long walk and feel like myself for a while.

Tinkering with diets and supplements has helped with specific issues (SIBO, anxiety) but overall trend has been downward.

I am now housebound and catch taxis whenever I have to go to the doctor or something. I seldom if ever caught taxis 6 years ago I think it was about 19 or 20 mnths ago that I was last able to reasonably consistently walk the 2kms into town. But I was only doing it once a fourtnight or less often. And I was crashing afterwards.

Until recently I was still caught in the exercise when ever you can mindset. In the early years I was really fit, and would take good long walks then crash for a couple of days. I had chronic migraine, I could barely think, and I was trying to do as much as I could every day. I only rested when I could do nothing else.

Whenever I got a slight improvement I exercised, walked around the block whatever. I do not think I knew what PEM was (I knew the experience but no theory) but there was quite a long period where I was trying to do a sort of GET where I would walk around the block as often as I could without crashing so badly that I could not do it the next day.

When I saw one of Mark VanNess's videos earlier this year I realised that if I had not done these things I might have been able to maintain enough capacity to be able to keep a clean house and so on.

I suspect/fear that every time my body was headed towards improvement I destroyed any chance of it because I misunderstood the illness.

And that is the other side of it. The problem is not only that the right research has not being done, but also that the wrong research and opinions have been communicated to every doctor and physio and other medical practitioner you might see.
 
Comet

Comet

I'm Not Imaginary
Messages
695
17 years. No remission. Slow, steady decline. Mostly horizontal bound for the last several years. Can do an errand or two, or get to doc when I absolutely have to, but there is always a PEM price to pay.
 
MeSci

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,235
Location
Cornwall, UK
Sandman00747 said:
Just in this small thread so far we have a combined loss of quality years of life adding up to approximately 1,002 years and 3 months. That is simple unbelievable, but even more so, unacceptable. Just imagine what the total world loss of quality years of life might be. I wouldn't even want to know!
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Especially when you consider the quality of people who are affected.
 
K

KME

Messages
91
Location
Ireland
I feel like we should give each other a standing ovation. Perhaps a lying ovation with imagined gentle clapping would be more appropriate and feasible.


8 years. (So a toddler in this thread.) Onset with viral meningitis. Gradual almost complete recovery over first 18 months. Working full time, the only sign of anything abnormal by the end was an exercise ceiling and needing to socialise a bit more sensibly. Sudden relapse with gradual deterioration over past 6.5 years from mild to moderate to severe. Housebound for past 3 years.


30 at onset. Profoundly grateful that I had as much life as I had while well, and huge empathy for those who did not have that chance. Saddened beyond words at not being able to have children.


It is interesting that slow, steady decline is well-represented in this thread. I was led to believe, by some, that my pattern was unusual, but clearly I have company. The latest MEA poll suggests the same - 58% of respondents reported themselves worse compared to this time last year, scroll to end of http://www.meassociation.org.uk/ You could argue that people who are sicker may be more likely to respond to such polls (notwithstanding those too sick to be online), but you could also argue that there may be an unrealistic impression of the natural course of ME, and that deterioration may be much more common than currently thought. I know that as I have moved from moderate to severe, I have moved from being able to attend medical appointments to not, and I know this is the experience of others also - so ironically, those who deteriorate or who are more severe are less visible even to those health professionals interested in ME and CFS.


With hope that our trajectories may change for the better with effective treatments to come. [Winks to Fluge.]
 
Jan

Jan

Senior Member
Messages
458
Location
Devon UK
lilpink said:
I'm still angry. Anger is my friend.
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I don't know how to let go of the anger, how do you stop being angry when we've basically been stripped of our human rights and lied about and abused by the medical profession? I just wish it could all be over, I'm so sick of feeling like this and feeling like we have to fight for everything, including justice regarding the fraud of PACE. I am sick of avoiding doctors and A&E due to their discrimination and lack of knowledge. I am sick of patients having to raise the funds for research as no MRC funds are forthcoming for biomedical research.

All I want is for us to be treated with the same respect as those with other chronic illness, whether or not we will achieve this within my life time remains to be seen.
 
lilpink

lilpink

Senior Member
Messages
988
Location
UK
Jan said:
I don't know how to let go of the anger, how do you stop being angry when we've basically been stripped of our human rights and lied about and abused by the medical profession?
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I find anger quite a healthy emotion to have. We are all different..but anger motivates me as far as advocacy is concerned. We are limited by our disease I appreciate, but I wish there was more anger.. the 'ACT UP' sort of anger ... I think anger at what is done to us and in our name provides clarity. That is why I reject MEGA and any association with it. It's the only logical response my anger can compute.
 
Jan

Jan

Senior Member
Messages
458
Location
Devon UK
Sandman00747 said:
Just in this small thread so far we have a combined loss of quality years of life adding up to approximately 1,002 years and 3 months. That is simply unbelievable, but even more so, unacceptable. Just imagine what the total world loss of quality years of life might be. I wouldn't even want to know!
Click to expand...

Just from the people who have posted on here so far, we now have 1,010 years experience of living with ME.

Yet we are not consulted, our combined lived experience seems to mean nothing compared to their 'expert opinion' and theories. They write in medical text books without our input, they write the NICE guidelines, but our opinion does not matter, and they conduct their research with their psych theories caring not one iota of our immense suffering living with this disease. It is OUR illness, but WE don't matter.

We are the experts on this disease, they could learn so much from us if they chose to listen.
 
Jan

Jan

Senior Member
Messages
458
Location
Devon UK
I 'like' each post to show my support, but each one I read breaks my heart a little bit more :(

The endless suffering, the tragic lost years spent housebound, most of us neglected and disbelieved by the medical profession.

Alive but not living, we are either abandoned or subjected to their psych experiments (and then abandoned). It's shocking, appalling and inhumane. We live within the world's richest nations, in the 21st century, yet we are treated like outcasts.

You are all heroes in my book, they know nothing of the intense suffering and the amount of courage it takes just to survive and keep going every day. :hug::hug::hug:
 
valentinelynx

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
Coming up on 24 years this Spring. ~80% remission from 1997 to about 2009 (with a decline that I refused to acknowledge from 2007-2009, when relapse hit me like a brick wall when I tried to take on a full time job). I work sporadically, and then hit the bed to recover for several days. I'm sure I'd feel worlds better if I didn't work, but then I wouldn't have any way to pay the rent or eat. My (partial) remission allowed me to complete residency (I'm a physician), so I'm very, very lucky that just a little work goes a long way to paying for things.
 
chickpea

chickpea

Messages
50
Location
Currently Duluth, Minnesota (from Canada)
13 and a half years - no remission. Fluctuate between 40-60% capacity on average - crashes/relapes under 20-35%. I have never gone above my capcity and have never been able to avoid crashes/relapses. It feels like there is no end in sight. Now about to turn 42, I am angry and sad about how little has been done for this DISEASE! If I think about how much I've missed since 28, I think I'd loose my mind. My brain looks at this page and screams, HOW IS THIS HAPPENING STILL???!!!
 
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