To Those Who Suffer with ME, CFS and anything else that people think is all in our heads
Sunday, October 13, 2013
I got something akin to glandular fever when I was 40 and my physical problems started as a consequence of that condition. This was 34 years ago.
However the umbrella name in use at that time was ME. This was what they called it if they could not get a positive result on Lupus or other similar conditions which presented in a similar manner. There were other types of viral infections that were also lumped under that heading, at least on this side of the world because they seemed to be classed as "new" in those days. It was explained to me that my immune system instead of attacking invaders had turned around and was now attacking itself. Hence my immune system no longer worked to protect me. This caused the 26 symptoms which I was experiencing at that time.
As there was no cure for other diseases of a similar nature - the consensus was that the best they could do was help alleviate some of the symptoms. They did not know what had caused the initial fever as it was beginning to also crop up in other parts of the world under different names. Sometimes followed by something they called CFS which lasted for around 6 months.
Then somewhere along the way Fibromyalgia seemed to become a thing on its own rather than part and parcel of ME. A close friend of mine got something they called Polymyalgia which meant it moved around. But the fibromyalgia for which I had no name when I first had it also moved around all over the place, so I am not sure of the difference in these two.
I joined an ME group, but there was very little knowledge about it then, and we were struggling with assorted eating plans and some way of coping with the exhaustion which was a major factor. Some of us were in wheel chairs. One young guy in his twenties could barely get out of bed at all. The one thing we all shared was a kind of fellow feeling and that in itself was a help for some. One woman had read somewhere that we were like the canaries going down the mine ... because there was a stream of thought that chemicals and pollutants of one kind or another along with pylons and other man made things was what was really causing our condition.
I however, tried as best I could to continue with my life and fought the fact that there was anything wrong with me. I ended up as a mess and could barely turn over in bed - in fact it would take me several minutes at that time to gain sufficient energy to move from my left to my right side. I had been a very active person prior to this virus attacking me and I could not believe how my life was going to change. Finally one day it was my specialist who said it was necessary that I accept I did have this disease - regardless of what it was called - and that I needed to change my life style. She said for some people it comes and goes in a matter of months. They did not know why. For others, it is a case of good spells followed by relapses. For some, especially if they had it for several years, it was likely to be permanent.' She paused and let that sink in. She then told me that it was unlikely I would improve.
I then tried everything I could find that suggested a remedy. And there were so many on the internet that promised amazing things from people who had themselves recovered. And no doubt it was true these things may have helped some people, or they might have been of the type that would have recovered in any case.
I tried every remedy I could find that people said had worked for them. I spent a lot of money but with no visible results. I had B12 injections after a particularly bad spell which did help some people, but with no success. If I shopped in super markets I needed to wear mask because of the germs in the air conditioning and was advised to only use small local stores. One of the main problems for me was that I lived with flu symptoms day in and day out on a pretty regular cycle. Three days on, three days off, the three days off were spent in a kind of recovery, early stages of the three bad days. I had an anti flu injection one year because it was thought it might help. I ended up flat out for the next 6 months. Looking back with such a lowered immune system one would have thought they might have known this.... however they were also trying to find something that would help I guess.
Finally I reached the place where I began to accept what some people told me, ie that it was all in my head - that I imagined it and it was psychosomatic. Yet others mentioned that if we are sick it is because we really want to be and I was choosing it. I started of by feeling guilty if this is what I was doing - and I withdrew into myself and felt like a wicked person for pretending I was ill when I wasn't really.
After that phase, a strange thing happened. I began to accept whatever the reason this was my life and I was no worse than all the other people who were 'pretending' to be ill and so I might as well accept it. At this point I began to live a new life. I found hobbies and interests that interested me and that I could do from my bed. I began to make new friends and be with others who shared my physical limitations. I began to enjoy my new life. I felt much better internally when I was no longer feeling guilty and I began to tell people that maybe it was self chosen. Maybe I did want to be sick.
The first thing was that as soon as I said this (I had no idea if it was true or not), a great weight was lifted off. I was being honest. For all I knew maybe those people were right. Perhaps it was self-chosen at some level. However, what happened was that hey stopped offering me remedies that did not work, they stopped telling me it was all in my head. Seems all they wanted was for me to tell them I was imagining it all. Life is strange.
Once I accepted that maybe I was 'responsible for it all' and for some deep reason I needed to feel this way - whether to escape from life, or whether my body was just telling me it could not cope any more I do not know. It is true I had had what was a 'difficult' life and perhaps somewhere in my deep unconscious I gave up on trying to live it - whatever the reason I stopped fighting and began accepting. What others thought ceased to matter and I began to enjoy what I was able to do. I was not in a psych ward - I was not in prison. So I was not wasting tax payers money in any of the ways I might have been. The worst I was doing was living on sickness benefit which was so minimal I could barely live on it. :)
I began to get involved in areas where I was able to help people from home. I began to feel a useful part of society again. Although my physical condition did not improve much, my mental condition certainly did. I felt worthwhile rather than a failure.
People who judge us for any reason at all, are not saying anything out us, only about themselves and their own point of view. It is the same when I judge another.
Why do we judge others at all except in relation to ourselves and frequently to make ourselves feel good or better about who we are. The lower my own self-esteem, the more necessary it is for me to criticise those around me, so that I can feel better about myself. Or on the other hand if I judge others as being better than me, and think why cant I be more like 'so and so', this only brings my own feelings of low self esteem even lower. Praising and encouraging others is a great way to lift self-esteem. I do not have to compare anyone to myself at all. We are each unique.
I am now 74 and two years ago my life changed dramatically for the better, but that is not part of this story.
Acceptance of where I was and living within my limitations then, is what made way for the next step in my journey.
PHOENIX1949 A favorite song of mine that resonates for me in regard to people not understandng is:
Walk a Mile in My Shoes by Joe South
If I could be you, if you could be me for just one hour If we could find a way to get inside each other's mind, mh If you could see you through my eyes instead of your ego I believe you'd be surprised to see that you've been blind, mh
Walk a mile in my shoes, walk a mile in my shoes Hey, before you abuse, criticize and accuse Walk a mile in my shoes
Now your whole world you see around you is just a reflection And the law of common says you're gonna reap just what you sow So unless you've lived a life of total perfection You'd better be careful of every stone that you should throw - yeh-heh
And yet we spend the day throwin' stones at one another 'Cause I don't think or wear my hair the same way you do, mh Well, I may be common people but I'm your brother And when you strike out you're tryin' to hurt me it's hurtin' you Lord, have mercy
Walk a mile in my shoes, walk a mile in my shoes Babe, before you abuse, criticize and accuse Walk a mile in my shoes
And there are people on reservations and out in the ghettos And brother, there, but for the grace of God, go you and I, yeh-heh And if I only had wings of a little angel, well Don't you know, I'd fly to the top of a mountain and then I'd cry
Walk a mile in my shoes, walk a mile in my shoes Babe, before you abuse, criticize and accuse Better walk a mile in my shoes Try before what you're doing
Walk a mile in my shoes, walk a mile in my shoes Oh, before you abuse, criticize and accuse Walk a mile in my shoes...
http://www.youtube. com/watch?v=OoznjbKVnmw 1191 days ago
Oh Wispy my dear sweet friend, you are such a light to so many of us that have hid in such darkness and storms in our lives. My heavens you speak to so many that have gone through this and many that still are. The voice of the unheard. Oh how I wish this didn't have to happen to anyone. I look at the poor people from years back and even today they have little answers for so many. Autism for example. Auto-immune disease is terrible and still not being addressed by society and our medical community as well is obesity and the why's. It seems so barbaric doesn't it, in a world that can do the things they do, but can't stop the disease or even treat them. Thank you for being a voice to this issue and so many other ones as well. Bless you! Love and Hugs, Erin 1198 days ago
Dear Wispy, I do so understand where you are coming from. I have Lupus, and several other connective tissue diseases, my dearest daughter has Mono, Sytolomegalo Virus, Epstein Barr, and CFS because of the other virus'. She is very young and it broke my heart to see her suffer-she has spent many times in the hospital, as have I. We can only do the best that we are able. I know that on your bad days you must rest, as must all of us with chronic illness. There are many people who may not understand, but I want to tell you that it is never in your head, these issues are real, although they can effect the brain with brain fog, and other issues. I pray that you are getting good care, and I am very proud of you for moving as much as you are able. Some days I am walking two miles very slowly, sometimes I can ride a bike or a trike, and some days I am back in my wheelchair, or barely able to move around at home. Let us not lose heart! You are inspiring to others, and I wish you the very, very best always. 1198 days ago
Wispy - what an inspiring story! Your attitude is amazing after and maybe because of what you have lived through. And I know you are still trying to improve your physical frailties because you are counting the steps you take everyday. Truly amazing woman and human being.
What an amazing journey my friend and what an amazing conclusion: "Praising and encouraging others is a great way to lift self-esteem. I do not have to compare anyone to myself at all. We are each unique." for sharing an inspiring story for us all. 1198 days ago
Wispy, you have such a way with words. You are such a great writer. I have known about some of your physical problems from our disabilities team. I did not realize just how much you have gone through. I am happy that there is more known, today, about these conditions. 1199 days ago
A lot of people judge chronic illness as being ‘all in our head’. I sometimes tell those people, “Yes it is. The strokes are in my head. The MS is in my head.” Geez, even doctors will question whether illness is in a persons head. I have had doctors question my heart failure, but then when they learn all that is wrong with me, they think I am beyond trying to even save. Which is devastating to my self-esteem. I am finally just now accepting the way things are, though my heart still breaks at peoples viciousness - especially when that person is in the medical field and has taken an oath to do no harm, but then do harm by letting me know they will do nothing to save my life - cause I am as they put it, “A non-functioning person on the disability rolls.”
So, lately I have been ‘accepting’ things, and I actually have been making some improvements emotionally with these issues.
I am really glad I read your blog today, though I am not glad you have suffered for 34 years. But, your blog is encouraging in that if you can make it from 40 years old, to 74 years old, and still have a positive frame of mind about you, then there is hope for me to stick around a few more years and have those be worthwhile years.
WISPY EVERY TIME I READ ONE OF YOUR BLOGS......... I'M SO INSPIRED BY WHAT YOU SAY...... HOW YOU HANDLE THINGS AND HOW FAR YOU HAVE COME RIGHT NOW......... YOUR JOURNEY IS ONE THAT I'M SO HAPPY TO BE A PART OF....... I LOVE THE WAY YOU PUT THINGS INTO WORDS AND MAKE THEM SO UNDERSTANDING....... YOUR MY HERO...... 1199 days ago
I found your blog sad, mainly because how easy it was for you to own that this was all in your head. I also have CFS, 20 years now, and developed MCS 5 years ago after a Chemical over exposure brought my illness to a new level of crazy and dysfunctional. I have never stopped searching for a cure or treatment, because I reject that this is all in our heads. If it were all in our heads, my head would have brought me to Never Never Land, Candy Land, or some other happy place.
I have finally at long last found what has caused me to become so sick, and it is REAL. I want to share my discovery with you, I too have written a sparks blog on it. Recent studies have concluded that more than 80% of people living with CFS/FM and similar auto immune disorders actually have a gene mutation that has caused this, the MTHFR gene mutation, and there is therapy that does help and turn the symptoms off!!!
Read my blog, and my journey with CFS/MCS and I hope it helps you find some solutions for yourself. You need to have yourself tested for this gene mutation. The fix for your life is very easy and affordable if you do indeed have this gene mutation. good luck and good health to you
Link to one of my blogs on MTHFR gene mutation http://www.sparkpeople.com/my page_public_journal_individual. asp?blog_id=5495873 1199 days ago
Wispy, thank you for sharing your story. I knew from your postings that you had limited mobility, but until now, I did not understand how huge the problem was. I'm happy for you that you have rebuilt your life around the limitations and have found joy and purpose! 1199 days ago
Hi Wispy I never realised that it was M.E. that was causing you health and mobility problems. It is such a frustrating condition, and it's usually the 'very active', busy, hard working people who get it.
Acceptance is empowering, but I have struggled - am still struggling a bit - to accept that I have M.E. It is partly denial, I don't want it, and as someone who enjoys problem solving I also don't like having a problem I cannot do anything about. But it is largely that there is no test (yet) than can be done, as you know it is a matter of elimination, and this inability to have a concrete diagnosis makes it difficult for me to believe and therefore accept that I truly have M.E. It isn't just wishful thinking, it is also guilt, I don't want to 'claim' a condition I don't have. This is all silly of me, I know, for I too have a long list of symptoms that point to M.E., some I would never have guessed to be linked to it (intolerance of alcohol for example - how miserable is that?!). I want to accept it and move forward, but I just can't seem to.
The other reason why it is highly likely that my health problems are down to having M.E. is that the trigger can be an accident, an infection, or emotional stress. I have had all three! A cyclist knocked me - literally - flying; on the day I started my Uni course I had an awful virus, and my past is full of emotional abuse. You're probably wondering how much more evidence I need...
Oh Wispy I learn so much from you! (((HUGS))) When you wrote this- "that it was all in my head - that I imagined it and it was psychosomatic. Yet others mentioned that if we are sick it is because we really want to be and I was choosing it."
I could have screamed! Is this a universal thought in others heads? Because I wouldn't ever think this way about anyone who has been sick with anything chronic or disabling. It is so foreign to me to think that of anyone, unless they already have a mental health issue that has shown otherwise. But even then- who am I to judge?
People think that Drs know every illness possible- and they don't! They learn of new things all the time!
(((HUGS))) to you precious friend! Your strength amazes me! You inspire so many. Never stop sharing your wisdom!
Wispy, you seem to be a loving, thoughtful person. Perhaps this was one of the "gifts" that came out of your hard life experiences. Chronic illness that medicine couldn't explain. Blaming the patient is always easier than the practitioner saying s/he doesn't know what to do to alleviate a condition. You've come out of your situation for the better. I'm sorry it took until the age of 72 to have your "life changed dramatically for the better." But at least it has - and that my friend is cause to celebrate and be grateful. My best ((Hugs)) to you! Denise 1199 days ago
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