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.