M.E. The misunderstood.

I decided to let you all in on a little known fact about me. It is not something I tend to crow about, because I don’t want it to define me. However, it has come to light that a friend of mine may have the same illness as me, Myalgic Encephalomyelitis (M.E.), (yes, it is a real illness, I know, I have it), and knew nothing about it. Apparently, their doctor didn’t think of it as a possibility either, (many doctors still don’t, unfortunately).

So many misconceptions have arisen over the years regarding this illness, and I would like to take a stand an quash those, at least within my own circle. Perhaps, it might help someone else going through extreme and unwarranted fatigue (not aided by rest or sleep), sore or weak muscles and joints, poor concentration and short term memory, and flu-like symptoms.

So. For those with any misconceptions/questions I have included a link in this post about M.E. AKA C.F.S. (Chronic Fatigue Syndrome) in the US. I don’t particularly like the term C.F.S.. I find it demeaning, personally, because it implies that fatigue is all there is to M.E. IT IS NOT. Here is the best and most correct information about the illness I have found so far.

ME Association of the UK

If you, like my friend, feel after reading that you can relate to this information more than you would like to, please, go and talk to your doctor about it. For they are the only ones who can diagnose it and set you on a path of self management, (since there is no cure and no drugs proven to work for M.E.), and pacing yourself. Some doctors are still living in the dark ages, and refuse to recognize this illness. I had 11 years of doctors telling me, “It’s all in your head”, etc. But I was still sick, so persisted, and glad I did.

The thing is. If you don’t know you have this, and persist in “working through the pain”, you will only get worse. Working through the pain is the last thing an M.E. patient should do. I learned that the hard way! Partly, it wasn’t my fault. I had doctors telling me to “Get over it, and work through it.” But, partly it was my own fault. Even after a diagnosis, it is very hard to break the habit of a lifetime and stop “working through it”.

It took many years to get a handle on this, and even then, sometimes nothing helps and it flares up, no matter what you do. You have to learn your limits and stay within them. The problem being, those limits are constantly changing. What you could get away with yesterday may not be possible today, and visa versa.

I hasten to add, I am currently in a remission. Have been for a few years, happily. That doesn’t mean I am “over it”. That is a common mistake many make when going through a “Less poorly time”. They think they are fully better and resume their former activities, only to go right back to being ill again from overdoing it. Again, I am familiar with this cycle of events.

M.E. doesn’t go away. One may “feel better”, but that doesn’t mean it’s gone. We simply are having a better period, and long may that last! But we do have to continue caution with everything we do, not overdo it. Always be aware that it can strike back at any given moment and often of its own accord.

I will finish with one of the most important things to remember. M.E. sufferers do NOT want your sympathy. We need your UNDERSTANDING. The link I included will, I hope, go some way way toward that.

Namaste. 🙂

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4 thoughts on “M.E. The misunderstood.

  1. It is so hard for others to understand because it is invisible and we can do everything….people just do not see us in a heap after we have done too much. And I think/know we tend to put on a spectacular performance. Even when people “know” they never really know. It is such an unrelatable disease. Yet, for me I have found a rather counter-intuitive truth. It is helping me become the person I am meant to be. I wouldn’t change a thing as I have leaned so much through this journey. I have found Joy!

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    • I truly believe that everything happens to us for a reason. And yes. It does shape you in a different way and on a different path you might otherwise have chosen. But, it doesn’t define us as people either. You are also correct in that we do put on a splendid performance, as if to convince someone “we can do it”…but who are we trying to convince? Other people or ourselves? 🙂

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