Living With M.E.

Living With M.E.

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a complex illness affecting multiple systems of the body and, in particular, the nervous and immune systems.

This is a condition that my wife has for many years now. We live with it every day having to manage time, energy and at times the sheer frustration that comes from not being able to enjoy the things that others take for granted.

The following is an interview with her so that people will get an understanding of what she (and us together) deal with daily.

When did you get sick?

April 1998

What was life like before you got sick?

I was a very busy person, a very active member of a church, studying full time while working at a church; I was involved in a band playing keyboards, a singer, involved in theatre. At work on the tenth floor I used to take the stairs two or three times a day. I used to enjoy long walks, aerobics, and music, getting involved in community projects including working with the disabled.

What can you do now?

Not much, virtually all of that has gone, I do a bit of craft work occasionally, read, and light housework, but even this has to be managed very carefully. Even taking a shower can be one of the most tiring activities. I do bits and pieces but require to rest for long periods often

Describe how you feel physically?

I’m sensitive to light, smell and noise. In regard to light the “eco” bulbs and fluorescent lighting is the worst due to the flicker.

There is a constant body ache always there at some level.

Sleep is broken and irregular.

Constant fatigue, I would describe it like a heavy dragging feeling like walking through a pool of water with lead weights on your hands and feet.

I can’t walk too far and can tire very quickly.

Poor memory.

Clinical depression.

Find it hard to concentrate and when I do I can’t keep it up for long.

Developed food allergies/intolerances.

Doing too much (more than usual) makes things worse and requires a long recovery time to get back to “normal”.

Even the weather can affect me whether there is not enough sun, too hot/cold, high pressure systems can produce “heavy air days”.

What do you want others to know about ME/CFS?

Fade Away - ME/CFS

It is currently incurable, although there is great research being done around the world especially at the Whittemore Peterson Institute for Neuro Immune Disease in the USA.

It is invisible; people with ME/CFS may look well but they hide what is going on inside.

It is not laziness.

It is not just in the mind.

It is not an excuse.

It is real not imagined.

It is a physical illness.

ME/CFS can often affect very productive and active people, stopping them in their tracks.

In many countries including New Zealand, Australia, Canada and others blood donation from people with ME/CFS has been banned due to the possibility of the presence of a retro-virus (XMRV).

How can others help or assist people with ME/CFS?

We don’t want pity – just understanding.

Don’t forget about us.

Plan contacts in advance.

Don’t be offended if we need to change/cancel plans especially at the last minute.

Remember that we are sick not “uncommitted”.

Take us as you find us, some days are better than others.

When you come to visit know that short visits are better.

It is not just about the person with ME/CFS but it also has a major effect on their families.

Wider effects of ME/CFS

All aspects of life are changed when you or someone in your family gets ME/CFS, including finance, food, social activities, friendships can change, the ability to have children (we can’t), community involvements stop.

There can be a feeling of isolation as the world evolves around you, while you feel that nothing ever changes. Those who get sick may feel guilty because they can’t “contribute”, those who are close who look on see a person who is but a shadow of what they were.

We have our moments of frustration. We occasionally allow ourselves to have a good moan, but this achieves nothing apart from getting it off our chests. We have had to put systems in place to manage the energy levels. Just as you can spend money only once we can use energy only once so we have to budget how it is spent. If we do something today, even as simple as having a friend over, then we can do nothing for the next few days.

It has not been an easy few years, and unfortunately there is no sign of improvement, but we hold on to hope that one day someone will come across a treatment or a cure. Until then we will hold onto hope.

© Paul S Allen 2010