My life, living with hidden illnesses/syndrome… I have been diagnosed with Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS) and Fibromyalgia . My everyday life is characterized by pain and fatigue. Living with these illnesses, is a challenge, because people can’t see them, or relate to them.
A few days I may be quite good. That is when I will be seen out, that’s when I’m a real mom, a loving girlfriend, a friend. that’s when I live and do some of the things I did before I got sick.
In those times, I give everything of myself all the time and have simply forget that my boundaries are not as tolerant as before. Then it comes back like a boomerang, hits me right in the face, time after time. It’s these times I am not visible outside, these are the times I repeatedly have to cancel social activities, it is these days everything is floating at home, it is these days my tears come. In a dark room, pain tearing my body and I sleep alot. Everything I do costs energy, lots of energy. Imagine you have a intense flu along with a sense of a real hangover.This is How my day is then. Where no painkillers help and I fall asleep all the time.
The feeling of standing on the outside of my own life, looking at it, and feeling the loss and exclusion. It is the worst pain. Every little energy I have, I use on my family. It is tearing down my self worth, knowing I can’t participate in society as everyone else. But thankfully its not all black, thankfully there is the internet. Here I can be social, on my terms, when I am up to it, as long as I have the energy for it. Here I have met a lot of other people with the same struggles, that understand and can relate. Thank you all, for your virtual hugs, your little notes on my FB page or my blog. It is nice to be able to use this blog as a little therapy as well. Letting me blow of some steam.
We know it’s very hard to understand how a person with ME/CFS /Fibro feels. Even those of us with ME/CFS/Fibro ourselves can only begin to imagine how family or friends with ME/CFS /Fibro are feeling on any particular day.
What makes it all so hard is that people with ME/CFS/Fibro often LOOK quite well! And they can smile, chat for a while, and even go out.
Imagine how you would feel if:
- You got the worst dose of flu you have ever had, and know it could last for 5 or 10 years or more. You are getting over a bad virus, feel totally drained and only have the energy to potter about indoors or lay in bed. You would expect to be better in a week or two, wouldn’t you? So did ME/CFS /Fibro sufferers, but we are still the same years later.
- You are always too tired and achy to do the things you enjoy, as well as simple things that well people take for granted like popping out to the shop. You feel a bit better for a few days (weeks or months) then it all comes crashing back and you feel worse than before.
- You can only go out at the most once or twice a week because it tires you out so much, and takes you days to recover from each trip. You wake up every morning feeling just as tired as when you went to bed the night before.
- You need to go to the toilet but you get half way up the stairs and your legs hurt so much you don’t think you can make it. Having a bath or shower exhausts you so much that you’re too tired to lift your arm to brush your hair afterwards.
- It’s a great achievement to cook your dinner without burning it, yourself or misreading the instructions.
- On the rare occasions when you are well enough to go out people assume that you’re better, even though you know you’ll be ill for days afterwards because of it.
- You never drank alcohol, but you woke up every morning with a hangover.
- You wake up in the night drenched with sweat, throw off the duvet, wake up an hour later shivering, pull up the duvet, and wake up an hour later drenched with sweat again and so on all night long.
- Noise hurts you so much you couldn’t go to the cinema, pub, church or any shop or restaurant which plays music or the houses of any friends who have children. You had to shut your windows whenever your neighbor’s children were playing in the garden (even if it was 30 degrees outside!).
- You didn’t dare eat a meal at a restaurant or at a friend’s house because you wouldn’t know exactly what was in it, and if you accidentally ate even a small amount of one of the dozens of foodstuffs which upsets your stomach you would be awake and in pain all night.
- Every few weeks, without any warning you were stricken with a mixture of gastric flu and the worst indigestion you ever had and spent the night wondering whether you were going to have a heart attack or just throw up and were shivering so much you couldn’t stand up and had to keep crawling to the toilet on all fours. You have random aches and pains all over your body – in your arms, fingers, legs, back and neck. You have frequent headaches.
- You feel heavy as though extra gravity is pulling you down all the time. You feel dizzy whenever you are standing and constantly sick, and there are no magic pills to make you feel better.
That’s how a ME/CFS sufferer feels every day!
What is CFS/ME and what causes it?
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is primarily a neurological illness (brain disorder) with variable involvement of other bodily systems including muscles, liver, heart, endocrine or lymphatic glands.
Clinically it is a fluctuating disorder of energy control (fatigue). Symptoms commonly include prolonged recovery from any activity.
Pain is common, especially in muscles and joints. Persistent dizziness and clumsiness may be disabling. Disturbances of brain function occur (eg memory, concentration, sequencing of words and numbers, abnormalities of sensation, balance, vision, hearing, sleep rhythm, temperature, appetite, hormone production and response to stress).
Other symptoms may include irritable bowel, emotional lability and mood fluctuations.
CFS/ME can and does affect all age ranges, from the very young to the elderly. The peak age tends to be between 20 and 40 and the incidence seems higher amongst those in stressful occupations. It is known that female sufferers outnumber males by three to one.
It typically occurs in a vulnerable individual, often at a time of stress, as a consequence of a viral or recurrent viral infection. These include: polio, coxsackie and echo viruses. Secondary infection with another virus such as glandular fever, influenza, mumps, chickenpox and severe stress or excessive exercise may increase the severity at onset.
The consensus view is that the average duration of the illness is four years and up to 20% of sufferers fail to return to previous levels of functioning. The severity of this disorder varies, although some patients are disabled for years.
The National ME Centre was set up originally to see fatigue syndromes of all types. It recognises that chronic fatigue syndrome is an umbrella diagnosis and that the illness content varies from patient to patient. It includes the disorder designated myalgic encephalomyelitis (ME). It recognises therefore the need to advise and recommend very individualised treatment packages. The centre accepts the criteria as described by Fukuda et al (1994) as being suitable for the diagnosis, namely “substantial fatigue newly acquired of greater than six months duration which may be associated with cognitive or neuropsychiatric symptoms”. It requires four other symptoms from a list of eight which includes recurrent sore throat, cervical lymphadenopathy (swollen glands), myalgia (muscle pain), headache, impaired memory, multi-joint pain, unrefreshing sleep, post exertional malaise. It excludes medical conditions that can produce fatigue and psychiatric disturbances such as melancholic depression, substance abuse, manic depressive disorders, psychosis and eating disorders.
The definition recognises Idiopathic Fatigue Syndrome – for those who do not fulfil the criteria of chronic fatigue syndrome. These include those with a life long history of fatigue symptoms (Fukuda K, Strauss S, Hickie I, Sharpe M, Dobbins J, Komaroff: the Chronic Fatigue Syndrome: a Comprehensive approach to its definition and Study: Ann. Int. Med 1994; 121; 957-959.
Our concept is that chronic fatigue syndrome (ME) represents a profound disturbance of functioning of the nervous system (brain) and its connections with the immune system and endocrine system (hormone).
Canadian Consensus Document (Bruce M. Carruthers, Majorie I. van de Sande) is recommended and endorsed by Professor L J Findley TD KLJ MD FRCP FACP Clinical Director, The National ME Centre and Dr. Terry Mitchell MA MD FRCPath retired Honorary Consultant The National ME Centre as follows:
“Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a common illness. Its impact on many sufferers can be profound with intrusive fatigue and multiple symptoms. The secondary burden of the condition is common to all chronic illnesses and includes impoverishment and a significant impact on personal and family life.
We recommend and endorse the Canadian Consensus Document. We regard it as an extremely important contribution to understanding the physical basis of the condition. Future research should be directed to further defining the pathophysiology of the condition together with identifying the sub groups, which undoubtedly exist, with the illness complex currently termed ME/CFS.”