Myalgic encephalomyelitis is a very misunderstood disease that often attracts prejudice and judgment. When one has a physically recognizable disease, the treatment is offered and friends and family are there as support. However, with myalgic encephalomyelitis there is this idea that if someone is tired then they just need to rest and everything will be OK. At the best of times, myalgic encephalomyelitis is understood because people think the person can just snap out of it.
Overcoming myalgic encephalomyelitis is not just a case of ‘have a lie down and you’ll be OK’; it is a disease that can literally change the life of the patient forever. There may never be a return to the energetic levels that they used to have; and yet they may make a full recovery. It is only lately that the medical profession is taking the study of myalgic encephalomyelitis seriously. I know of one doctor who wrote on a medical report, ‘The patient falls asleep at work”. This ignorance can be very damaging to the patient and when one is suffering from myalgic encephalomyelitis, any extra emotional baggage can tip the scales.
Because the initial symptoms of myalgic encephalomyelitis can be almost flu-like, with body aching and drowsy tiredness, myalgic encephalomyelitis is often misdiagnosed. It is important, therefore, that if you know you do not just have a cold to let the doctor know. It is your right to correct and accurate diagnosis and to receive suitable treatment. It is also your right to change doctors and get a second opinion.
The actual root cause of myalgic encephalomyelitis can be a mystery, it may be from a viral attack some years ago or myalgic encephalomyelitis may result after a period of intense emotional and/or physical hardship. It could also be a brain inflammation or arise due to damage in the brain; above all, myalgic encephalomyelitis is not psychosomatic.
Anything can then bring on the severity of the condition included the general stress of household bills, memories of past trauma or simply trying to get organized to have a shower! If you are living with myalgic encephalomyelitis then here are a few ideas that may help you.
Firstly, acceptance. Rather than fight it and bring on further symptoms understand that this may be your body’s way of getting you to slow your life down. You have not necessarily lost your energy; it may be that your energy is being used in a different way; possibly to heal at a very deep level.
Secondly, simplifying your lifestyle can be very therapeutic; whether you have myalgic encephalomyelitis or not! Simple steps such as switching to a pay-as-you-go phone so that you do not have to deal with another bill or keeping a simple kitchen cupboard to remove too much choice, these can all help.
Thirdly, avoiding stress is obvious but there are a few smaller steps one can take. For example, only go to your favorite coffee shop when it’s quiet, never visit the shopping mall on a Saturday afternoon and never walk along the main road, take quieter streets (as long as they’re safe). These small moments of respite will build up and give your system a rest.
There are other things to keep in mind such as:
- Avoid negative people, especially those who refuse to understand our condition!
- Keep to a healthy diet, avoid sugar and keep off red meats and dairy
- Stop going over the past and start to live for the now
- Every day find a news item that promotes good news!
These very basic steps can have an overall effect on myalgic encephalomyelitis. Please note that these are mere suggestion that have helped someone I know. To repeat, myalgic encephalomyelitis is not psychosomatic and should never be treated as such. The steps above can help the effects; they do not imply a cause. Remember, once you have myalgic encephalomyelitis anything might bring on an attack of debilitating tiredness. You have a right to be well and healthy, you also have a right to be understood and supported! Find local myalgic encephalomyelitis groups or use the internet to find myalgic encephalomyelitis forums.
Above all, stay positive; myalgic encephalomyelitis may not be with you all of your life and the extra time at home could help you develop whole new sides to you that you never knew existed.
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I would like to commend you for having one of the more up-to-date and accurate articles on M.E./ CFS. This article correctly states that it is a real neurological disease, not just fatigue, which can now be verified, and the extent of the brain injury measured, though testing is expensive and patients must pay, as the disease has been ignored for so many decades.
I would like to point out, though, as patient suffering from severe M.E. for 30 years, that:
- viruses are involved in most cases of ME, the most recent being the XMRV virus (ME patients are now banned from donating blood in Canada)
- I was on an organic only, alkaline, no-sugar vegetarian diet and did not smoke or drink when I became ill with ME
- exercising, even gentle, can send severe ME sufferers into further relapse
- while positive thinking is important in life and is stern advice usually given to ME patients, it cannot reverse a brain injury; this advice feeds into the most prevalent belief of all – that ME is psychosomatic