A Live-in Carer
for Janet
What is this ME that disables Janet?
ME is a neurological condition that affects the whole body including the immune system and the "autonomic" systems that run your body without you having to think. Myalgic Encephalomyelitis means inflammation of muscles, brain stem and spine. A piece of research published this year showed inflammation in 7 areas of the brain.
But when you meet me, you will see a normal woman laying in bed. That's because ME problems tend to be bio-chemical, so not seen on the outside. Think about Diabetes which is a problem with the chemical called Insulin. Diabetics look normal and sometimes function very well but if their chemicals go wrong they can be in a coma on that same day. You need to understand this because if my carer begins to think that I don't look like I need their support then they can cause me to deteriorate.
This disability is not like any other condition to care for, because ME is about having so little energy that normal life is not possible; and, that any exertion causes a severe increase in disability. This exertion can be from physical activity, thinking, processing information from eyes, and ears, or emotional stress. This means that my carer must be willing to substitute their energy for mine. The advantage of M.E, from a carer's point of view, is that I need to rest a lot. So, while you should be in the house unless we arrange otherwise, there is free time for study or similar occupation.
An ME Carer
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It's all about Energy
All the actions of your life need fuel so imagine a body that has a disease where the processes, that make fuel in the body, fail. This disease is ME
At the centre of energy production in the body is the power plant called "miochondria". Every cell has a power plant and transporters bring raw materials from breathing and eating. These are processed with chemicals to make pure energy to run and transporters deliver the energy to the cell to use.
Healthy bodies can also collect depleted energy to take it back to the power plant for reusing. ME systems cannot so we add to the exhaustion an inability to recover from exertion normallly. An ME carer has to understand that I cannot do some things because the consequences will be disaster.
Over-activity & Pacing
PACING is the way ME people avoid overactivity. We learn from our mistakes and limit our activites to our own energy envelope. We also break our day into an activity/rest pattern so we never overdo it. My carers spend a lot of the day laying me down to rest and sitting me up again!
I am part of the group diagnosed as severely affected . So for me, OVERACTIVITY is anything but being asleep. If it causes me to become weaker or in more pain either immediately or later on it is OVERACTIVITY. If I push outside safe activity I can become temporarily paralysed.
An example of my energy boundaries is standing or sitting on the commode. My body has difficulty changing the management of blood supply so that the blood stays in my feet and away from heart and brain. So my carer must work so that I spend minimum time sitting out of bed.
Problems with Brain Input
Recent ME research showed that ME brains have a section of white matter missing. Research using qEEG showed the different parts of the brain don't communicate with one another fast enough either.
These problems, and no doubt others yet to be researched, lead to poor concentration and memory problems. These limit my ability to make decisions or answer questions. An ME carer has to work in a way that avoids needing me to think in these ways.
Another brain function is to deal with input from ears, eyes, touch and smell and heat. A slow under-powered brain gets over-whelmed by the input from a normal day. An ME carer has to work in ways that minimises input from the world and herself to the my brain.
Problems with The Gut
ME people suffer from painful tummies and slow digestion to varying degrees. Recent research has shown the gut bacteria is different. But most of the immune systems activity is also in the gut and ME has marked immune system symptoms such feeling like having flu. Research has more to do to find out about all this and which came first; the immune system's failures or gut failures.
Allergies are common (mine are to soap and the tomato/potato family) and coeliac disease (which makes gluten damaging ) occurs in a significant minority including me. Immune system diseases tend to occur together, and I too have a second - Inflammatory Bowel Disease which involves ulcers in the colon causing pain and -diahorrea.
My carer has to be careful about everything I eat, and learn to cook with strange ingredients.